Crohn’s Disease and Suicide

This is a tough topic to blog about, so it’s making me  a little nervous. But it’s important. So here goes.

I was in a chat room yesterday that focuses on Crohn’s, and a woman there said her husband’s been so sick he’s been talking about suicide.

Now, I don’t know this woman and likely never will. She lives hundreds of miles from me. But I have been thinking about her constantly – no one should ever have to go through this.

Depression is common among people with Crohn’s, or so I’ve been told. They say it’s because many of your happy cells live in your gut, and when your intestines aren’t functioning properly it inherently causes problems with your mood. But beyond that, if you are so sick that you just can’t live your life anymore, it will make it seem as though life isn’t worth living.

I don’t have an answer for this woman. I wish that I did. But that’s why I wanted to write about her and her husband. What is out there for them? How can they get help? They live in a rural community too far from support groups; I think that’s why she was coming online for support. How can this family get the help they need?


97 responses »

  1. I got to a point, before they started getting my medication right, that the disease was making me feel sick and the medication was making me feel worse.
    I remember saying to my partner “If I keep waking up feeling like this – I’m not sure I want to keep waking up”. I will never forget the look he gave me, but at the time I didn’t care. Before I was diagnosed I was still having the occasional “good day” but afterward… with the medication, I had no “good days” just “pretty crap” and “really crap”.
    I lost a lot of friends and it made most of my family uncomfortable at the start – so I couldn’t talk to anyone about it – and that compounded the issue.
    I was always a blogger, but when I was diagnosed I started a seperate one with all the details in the hopes at the very least I could make even just one person feel a little less alone.
    In the end there were three things that pulled me out of my funk and that mindset, change in medication (turns out the Sulphasulazine that was making me sick-er), change in doctors – I found a doctor that would talk to me, for as long as I wanted and not clock watch and my blog… when I felt no one else would listen and understand I just wrote it all down… and that made me feel a little less bad.

    • Friends help. Friends complicate. Some understand and some just don’t get it. It is not easy for some people to believe that you can’t just have a good attitude. I suppose anti-depressant drugs are good for some people but when you regularly take a myriad of pharmaceuticals for the core illness taking more to combat depression is a very unattractive and unappealing option. Doctors will usually prescribe them readily but I am not so sure that is a good thing.
      Writing, talking, walking and doing things that I enjoy (whenever possible) seems to work for me. I also do not allow myself to be anyplace or with anyone who I know will trigger my ‘down’ feelings. Not an easy thing much of the time. Today I teetered on the fence but pushed myself to the positive side by 1) walking the dog twice so far 2)having a guilt-free beer at noon with my sandwich and 3)watching an old movie I love while I ate and drank. I know the beer is not good for me but F#*K it. I know I could make better use of my time than to watch TV. I know the dog didn’t really need an extra mile today in the cold and wind…

      The urge to end it all or just wish it would all end is something each person who is battling must deal with individually. It is nice, though, to visit here and see that ‘individually’ is not the same as ‘alone’.

  2. I won’t write long because my english sucks but, nevermind. I’m 20, got Crohn when I was 10 and tried to kill myself when I was 11. I never really wished to end my life, I wanted the disease to end. At that time I thaught that the only thing that could end something incurable was death. By definition, it is. But family, friends, love… it’s no bulshit. You simply need someone to be there… Even when evryone turn their back on you because of “what you are”… There’s always someone.
    They help. You need them to get through thing without breaking under it. And as selfish as it sounds, they need you… because everybody is important just the way they are in other people’s life…
    So for my parents, my love and the few friends who stayed; thank you

  3. Hey, im 17 years old and finding hard to write this right now because i supose im at the age where expressing my feelings isnt somthing i like to do. i’m really depressed and sad all of the time and do live with my mom but i dont say much, i tried getting jobs and stuff but i only need to do a bit of work and it make me feel really sick so there my career gone.
    I always think of times when i was normal and stuff, i dislike life.

  4. i just want to cry right now. hearing this makes me feel SO SAD that other people suffer with this as well. ive been in a horrible flare for way too long now i completely emphisise with the feeling that a career will never happen, it s so frustrating to not have answers!

  5. Hi i have to agree with Amanda- i never wanted to end my life but not waking up was rather appealing at my lowest point which was vomiting any food/fluid back up immediatly after consuming it, spending hours in agony on the toilet, it all got a bit too much to bear. if it hadnt been for my hubby and kids i think i would’ve given up living.but im still here and im still fighting!
    I too lost most of my friends after spending 3 months in hospital on the brink of death, i guess because i couldnt go out drinking or listen to their problems i wasnt seen as interesting-i was embarrassing to most as i would soil myself or not be able to have a conversation due to pain/dehydration/medication but i realised that if thats how they react to me when i need them the most then they were never real friends to begin with!

  6. I just read this…i 29 I was diagnosed with Chronic Colitist at age 26. Chrons is common on maternal and paternal side of family-So it was no way to escape it. First YEAR I was ready to throw myself in front of a Philly subway train. 2-3rd years I wanted to die in my sleep. People think your crazy…i was HAPPY now i cant work a full time job. I have to duck under my cube and vomit at times. have perfected hurling to a SILENT HURL. But when ur in someones bathroom an hour in PAIN and bleeding-people will talk….so a social life is over. I was ill so long my useless ex used this his chance to cheat..bash me-talk bout my sicknss with the women he slept with. I am at the age where I want children but these meds wont allow me to CARRY a baby full term. My life is OVER so why not end it all? I cant go on. The meds the people the career. I cant go on…

      • Hi everyone
        I must say first that i’m french and thus my english is gonna be not as good as yours

        but here i go, i’ll try to make it clear.
        I’m 29, i live in paris france, and i got a “stupid chron” for more than twenty years now (yes i was diagnosed by the age of 8).
        i’ve been throught a lot and i m still not as in good health as “normal” people.
        I precise that i’m a phd student in cognitive neuroscience and i studied psychology in its different form during 7 years.
        This topic is very interesting but sad.
        But not a lot of people, even in the medical and clinical world talk about it.
        Whereas this is maybe one the most important one concerning chron and inflammatory bowel disease.
        This disease brings you pain, shame and constant anxiety because of its reccurency.
        For I, this disease, i guess, has totally change my life and my point of view of the world and people.
        And of course, i thought about suicide a lot of time and still do sometimes, even if i deeply think that this is not an answer.
        In fact i don’t even know how i managed to go through all this.
        Cause not only the disease is painful, but the treatment is too. It can change everything in your life.
        Everything can be harder: work, social relationship etc…
        I think the real problem is that a lot of people with these disease think about suicide for different reason: it will never let you alone unless you are very lucky, it can really traumatize you especially if you were diagnosed when you were a child, for chemical reason, the digestive system is directly connect with emotion and sleep regulation, it’s still taboo (even if now, there is some progress, i’m telling you, in the late 80’s for a child, it was awful).
        unfortunetly there is not a lot of solution, but i think people with these disease should stop caring about every day responsabilities (work for instance) when sickness is here, and be selfish for a while just to let the body and mind with the minimum stress amount. In fact, this disease affect more people living in bif city, and the way of occidental life in a big city is not good with this disease. So we must let it go sometimes even if it’s good with our job etc…
        Of course even if i too am depressed and anxious, you can reply to me if you want. I have the disease and i have studied it so i know some things about it.
        I hope this long comment help a little.
        I wish you hope.

    • My heart is absolutely breaking for you. I was diagnosed in 2008. It is a horrible disease. Please get a book called Great Taste No Pain by Sherry Brescia. It helps you combine your foods properly so that you can lower acidity I am even off my crohnes meds. I am sooo sorry about the creep you are with. What a immoral insensitive jerk!!! Please get this book. I call it my crohnes BIBLE. God bless you. This will really help. P.s. When you are having a bad flare up make some lemon juice. Use real lemons and sqeeze the juice into a glass of water. I don’t recommend adding sugar. Lemons are extrememly alkaline and take acidity away. You will learn all about acidic versus alkaline foods in sherry’s book. Good luck.

    • PLEASE do try to go on. My mom had Chrons and committed suicide a few weeks ago and the pain my dad and I are going through right now is excruciating. Trying to imagine our lives without her is impossible. I can’t return to work. I soon won’t be able to pay my bills. I am vomitting and afflicted with mental and physical pains. Wondering if death is the answer?? I can tell you most certainly it is NOT!!!!!!!!!!!!!!!!!!!

  7. I’m glad I found this blog, just to read some other people’s experiences. I’ve suffered from UC for about 9 years now since I was a teen, and ask everyday why I can’t just have a normal life. Like some of the others here I’ve wished I had the guts to attempt suicide because of the feeling that I will never have a normal, happy life without this stupid disease. Because I can’t go out much I have only a few friends, and even sometimes they don’t understand why I can’t do anything outside my house when I don’t feel well.
    A few things keep me from giving up and jumping the tracks:

    Reading… is great anyway, but is a great escape from my world of Colitis and takes my mind off it.
    Music… since I’m a musician. It gives my life some sort of meaning greater than the disease.
    Movies… I love them and there’s always some on the horizon that I know I HAVE to last long enough to see, like Harry Potter, Ghostbusters 3 and 4, or Indiana Jones 5.
    My little sisters, who I could never hurt, nomatter how bad my own life seems to be.

    Colitis sucks majorly, I can’t even describe with words. I miss work, get behind on money, miss fun events, get isolated, and get seriously depressed. But eventually I try to refocus on some of these things to keep my sanity.
    So try to refocus on something you love. Try to find a routine that works for you. I know that if I have to work a few days in a row (I work part time), I’ll cut back on what I eat and consume more nutritional shakes and water. If I have a few days off I might allow myself to eat something that I love to eat but is more risky.
    Today was a bad day for me, so thanks everyone for sharing…..

  8. Hi I am 36 and have had crohns for 23 years. I definately have had more bad times then good times. Summer is really hard because there are so many things I want to do but can’t. I would love to be able to take long walks but I can’t becuase I may have to use the bathroom. I am so thankful that I had really good medicine for 6 years and had 2 beautiful children. The only thing I ever wanted to be was a mommy. But working full time and being a wife and a mother with crohn’s has taken its toll. I am not afraid to die and would welcome it but my kids need me. If something happens to me they have to live with my worthless ex. So I am stuck here for at least another 10 years. Sometimes I wish I didnt have my babies because then I could just give up. This disease is like satan it seeks to destroy and kill but it never seems to finally kill you. I can say that things to get better but then they get worse again. All of you are in my prayers and hopefully they come up with a cure soon.

    • I came across this blog today because I obviously have been thinking that suicide is my only way out as well. I was diagnosed with Crohns disease at 20 and will be turning 30 shortly. My way of dealing with the pain was to binge drink and use drugs. That helped me end up in jail while flaring and you can imagine what that was like. I have made many mistakes because sometimes I don’t give a fuck about this world or myself. I see people happy and obtaining goals and I think ” why did I get Crohns disease”. This disease is ridiculously painful and it causes me to withdraw from my girlfriend completely and not want to be around anyone. Luckily I have four years sober now but since the pain has been bad lately I have had to take pain meds ever so often. Taking any drugs messes with my sober emotional state but I also can’t live in pain for days on end. My father thinks that a cure is coming soon but after ten years my hope and faith is lessening. I don’t see how hell can be any worse then the torment that this disease can cause. This feels good to write about because I bottle up all my feelings and embarrassment and then eventually lash out at someone. After reading some of these posts I feel somewhat lucky because I do not vomit very often. My symptoms are night sweats, lack or energy, and it feels like my motivation is absolutely minimal to name a few. I have been on Remicade for the past year and it was working so good and I was actually feeling like a human being again. Now it has stopped working as well and my flares are happening every couple days. So the my options are return to the hospital and be put on the Prednisone to stop the flare but the problem is that Prednisone makes me either want to cry or go absolutely crazy. I found a cure for my earlier addictions and have worked so hard to change who I used to be but this disease just keeps eating away at me. I feel gross and scared to be in stressful situations and fear is steering the wheel at the moment and I know that giving up is the end but I am getting there. I love my family and I don’t want to cause anyone pain but then I also don’t want to deal with this for years to come.

  9. “They say it’s because many of your happy cells live in your gut, and when your intestines aren’t functioning properly it inherently causes problems with your mood.”

    What a load of squit. “happy cells”?? Any illness that puts the sufferer in constant or near-constant pain is going to lead to depression. Couple that with the anxiety of not knowing when you’ll next need the WC and the side effects of many of the prescription medications that one is given, then the onset of depression is easy to understand.

    • Karl. I have had chronic refractory Crohn’s for 20+ years. I also have two licenses in the medical field. I went to University full time for nine years. Those are my credentials. If the don’t give my words certainty then I don’t know what will. Anyways, just to let you know when the other poster said “happy cells” what I belief they are referring to is seritonin. Research the chemical seritonin on the web. It is a chemical in our bodies similar to endorphins which make us feel happy. Just like testosterone comes from the gonads over 90% of seritonin comes from our guts. So, IT IS NOT BULLSHIT!!!

  10. My Dad had Crohn’s from the time he was in 5th grade. I don’t know exactly what he went through, but I saw him suffer for years. I remember having to go visit him in the hospital when I was only 5 years old up till I was 16. He had many operations to remove or repair diseased parts of his intestines. He would go in the hospital for a while then go back to work, and a few months later end up on the operating table again. I remember always having to wait to go somewhere because my Dad had to be close to a bathroom. I didn’t understand what he went through when I was younger, but I do now. My Dad was the toughest S.O.B. around. He never complained, just dealt with it. It got so bad that he couldn’t even get out of bed for a few years. He was 6’3″ tall and only weighed 140 lbs. I didn’t know it at the time because my Mom and Dad hid it very well, but we were on the verge of losing everything because my Dad was unable to work. He was not eligible for full disability benefits and had no income coming in. He ended his own life in June 2001. He took his own life to give his family a life. I saw this disease control my Dad’s life for 17 years. I have a 1 year old daughter and it breaks my heart that she will never get to meet her Pop-pop. The disease sucks, but I hope that they will find a permanent cure one day. September 2011, day after his wedding, my Uncle passed away from Crohn’s. He was only 59 years old. Sorry for the sad story, but I don’t talk about it much and saw this chain of stories, figured I’d share my family’s.

  11. I have come very close on a few occasions to ending it all. It was just a matter of taking the 10 or 15 hydromophone pills that were in my hand all at once. I still don’t know what made me change my mind.

    Things have changed now and I have a young child. Suicide is simply no longer an option for me. So I have taken control of my Crohn’s with some serious medication and do not hesitate to take morphine to make the pain go away (I used to feel bad taking narcotics). Of course, having great support from my wife makes all the difference!

  12. I’m reading all these stories and I can’t really feel any comfort from them.. They just make me scared. I was only diagnosed two months ago, and I’m only on my second really bad flareup. The reality of the situation didn’t really hit me when I was first diagnosed, because I was already on medications that calmed my symptoms and it didn’t really seem like a big deal. But now I’m so sick I can’t go to school, I can barely get out of bed.. And all these comments talk about losing friends, relationships, not being able to keep a job, stuff I hadn’t really thought about before.. I’m depressed all the time and maybe that’s linked to Crohn’s too? I don’t want a life like this.. I don’t want to be scared all the tIme.

    • Miranda,
      I’m so sorry you feel that way. A lot of people do, you’re not alone. Please remember this: the beginning is often the worst. Treatments are better than ever before, and there is so much more hope. I can’t promise it won’t be hard. But, look at me – I have a family, I have a career I love, I found a medication and a lifestyle that helps me manage my Crohn’s and just be able to live. I’m happy. You can be too. I’m not trying to sugar coat it, I’m just looking back at it from the other side. I was diagnosed a decade ago. At the beginning I was so scared. I wished someone was there to tell me it would all be okay. That I’d still get to have my career and to be a mom. So I am telling you this. It is going to be okay.

  13. Hi, I’m Nikki,
    I was diagnosed with CD 3 years ago. They say my CD is under control but I have had 6 fistulas and fistulectomies in the past year. The pain, the embarrassment, the shear pain of going through this for so long has been exhaIusting. I crave death every moment. The sitz baths, the wearing diapers. It is the illness no one wants to talk about. I’ve lost more friends than I can count, I can’t go out for fear of not being able to control my bowels.
    I’m tired. I’m going to the Cleveland Clinic tomorrow. If they offer no hope I will not remain in pain. I plan on ending everything. I just can’t live like this anymore.

    • Hi Nikki,
      I’m so sorry to hear of the pain you’ve been going through. I hope they can help you at the Cleveland Clinic. I urge you to tell them how you really feel, what you wrote to me. Sending love and prayers,

      • I know what it is like to live with Crohn’s disease . Your life is controlled by it, and so is depression. There is little Doctors know why this condition strikes so many people. There is few medications that can help control flairs. The medications that are out there come with their own side effects.

        Quality of life is at best minimal. Even in my case I think death would not only be better for myself, but my love ones that are also effected by this disease.

        Malnutrition , and dehydration are only two issues one deal with this disease, but also job loss because you spend too much time in a bathroom, or you may make 20 to 30 trips to a restroom because you ate something that day. Embarrassment is another draw back. Accidents acute all the time. Aduld diapers are not made to handle the issues this disease brings.

        In my case, I stopped trying to hold down a job, I do everything I can to stay home. Friends faded away because of lack of understanding.

        I go back in to see my doc on the 9th of May. I already know he will just want to try more drugs, but at a point you have to say enough is enough. Let the disease win. Let it starve me.

        When my Gallbladder was removed 25 yrs ago it started the affects and beginning of my colitis and Crohns.

        I would even let them remove my intestines if I thought it would end this, but I am sure it will only start something new and worse. Doctors did this to me, and it will be them that let’s this disease kill me.

      • Ok, I wish I had not been so dramatic in my last comment.
        We CAN live with Crohn’s. We can live productive pain free lives if we take care of ourselves.
        Will we have flare-ups? Probably, yes.
        But if we avoid the bad foods, and take an excellent probiotic, we can keep the pain and diarrhea to a minimum and lead normal lives.

        Avoid sugars, ALL grains (wheat, oats, tapioca, rice, maize/corn) and dairy. Try the SCD diet! If you want to bake biscuits or bread, use ground Almonds.
        Replace sugar with honey.
        I swear it works! It really does!

        Get a probiotic that is dairy and soy free and that contains Saccharmyces Boulardii.
        It completely changed my life! I swear!
        It balances the bad yeast in your small intestine, which causes DEPRESSION!

        And make sure you take vitamins, especially B12 and zinc and Omega fish oils.
        They all help Chron’s and DEPRESSION.

        Remember people, the reason we are depressed is because the digestive system is the second brain.
        If our intestinal bacteria is unbalanced, so is our brain. They are directly linked.

        Stay positive guys.

        Remember, we are what we eat.
        Every day we must tell ourselves, “I love myself enough to eat the foods I need to heal”

        I know junk food is so temping, but is it worth the physical pain and embarrassment of chronic diarrhea that leaves us unable to hold down a job?
        No, no it’s not.

        I’ve been at the bottom of the barrel this past year, but there is genuinely light at the end of the tunnel.
        We just have to take care of ourselves and remember to be kind to our bodies.

  14. Hello, my name is Trent and I’m 14. I came across this article while looking for something relating to a problem I had a while ago. In February of 2011 I got Mono and chrons at the same time, yet It took me much longer to figure out I had Chrons, I could never sleep and was always tired, I eventually had a colonoscopy and received medicine, it helped for a while then I slowly got worse and worse until I was back at the same place again, at that point I knew Chron’s had ruined my life and I could not ever get better, I always prayed for it to be better but that day didnt come fast, I thought god must have hated me and I had suicidal thoughts, I always loved life and would have never considered it until then. I eventually started taking Humira and I got a lot better, right now I began having an ulser but I’m thinking positive and that it will soon go away!

  15. I first suffered with IBS since i was 7, but then as i grew up and time went on, it was getting progressively worse. i spent weeks off school, now im 20, ive just finally been diagnosed with crohns which i knew i had for years ive just been too embarrassed and ashamed to go to the doctors and say ive pooed myself because i have no control of it. i get intense pains and am always feeling tired.

    Ive just recently ruined a relationship with my gf who i loved so very much but because of the mood crohns puts you in things just went wrong. People ask me why am i so tired or in such a crap mood and i cant honestly tell them why. i just say ‘ because i am’. its something that i have to live with for the rest of my life. ive had some of the most embarrassing moments ever because of it. Im currently going through a flare up which ive been in now for 4 months, every single day is horrible. my work are contemplating ssacking me because of having to call in sick so much.

    Il have moments and think to myself ‘ where is my life going? im not gona be able to get the job i want’

    BUt to everyone else who has crohns, your not alone, your not the only one going through it. thank god for the internet to help you read and talk about it with others.

  16. I don’t believe I’ve ever related so much to anything on the Internet. I’m a 22 year old college student who struggled with crohn’s forgot a year and a half during my last phases of high school… I can remember the pain becoming unbearable, but my desire to be the toughest man in the country outweighed everything. I won medals and championships in baseball and wrestling, in my mind I was untouchable. It finally hit me when I saw that I lost 50 pounds and was bleeding myself anoemic… I was diagnosed with crohn’s and was treated well except for a few accidental overdoses on the nurses’ part. I shook it off and didn’t fully react, I was told there were several medicines that could put me into remission for LONG periods of time… the fear is now setting in due to the failure of so many of them. Short and temporary fixes that ended in the same painful prison that is life with this disease. I’m on my last option before risky infusions which I might just reject. My God, the strength is almost gone… The typical struggles of college feel like impenetrable walls on top of this condition. I want so much for this beautiful girl to love me back, but she isn’t one for commitment. It feels like the curse of being south american and trying to mate with another one. This pain, my heart and my colon just decimate hope. I know it’s not an easy way out at all, but I still find myself praying that a massive perf will take me while I’m sleeping… A merciful end. She helps me forget the screaming that goes on all around me, the cramps and she even became one of my only reasons to take my medicine. I want to see a baby of mine grow, I want to give all I am serving those who need help in foreign countries… The goals become so blurry when I feel this condition kick in though. I’ve found myself searching for terms that don’t exist because I wanted a label for how I felt. Google reminds me whenever I search for anything, “did you mean ‘medical term for someone who believes they will die alone?’ or ‘one sided relationships.'” I am in this for the long run… Even if it’s cut short. I’ve been offering this girl all that I am and making my grades a higher priority than they ever were… Sometimes I catch myself though, the conflict in my heart continues as i ask myself if it’s better to be blessed with a longer life with this condition and pain or for my life to be cut short, like a short yet amazing ride at an amusement park. I will be keeping all of you in my prayers and hoping that anyone that feels like this finds peace. I was already sure; I don’t want this for my son or daughter… But I realize now that with the same certainty that I don’t want this for ANYONE including you guys. Signing off hoping that all of us live each day of our lives in peace.

  17. My names Terrie and November 2011 marked the turning point of my life. I was hospitalized and diagnosed with crohn’s 😦 its now July 2012 and everything in my life is just getting worst every week. I can’t eat or drink anything without getting sick and making the bleeding and pus and quarter size blood clots worst . I’ve lost 60 pounds. Every week when there’s a bm I spend the following 4 days bed ridden. 102 fever. Shaky . Can’t go out newhere, I’m a home nurse and find it ecrusiating to make it to work I call in sick 4 days a week and force my self to work the rest . I can’t take the pain, not being my old self, the urgency out of no where, constant tiredness and the everyday constant bleeding . It seems the no medicine, doctor, can help me and the symptoms .im starting to have suicidal thoughts because I can’t see my self dealing with this anymore it’s taking over my whole life and making my crazy

  18. Im 39 years old ive had chrons since i was 21 i have had 4 major surgerys for it. I am also a millwright in a cement plant the reguires me to work 40 to 50 hours a week. I had been really sick all through 2010 and11 trying to put off surgery well in december of 11 i had to have it. It was a 5 and half hour surgery all together they have taken over 3 ft of my small intestine i came down with pneumonia and allmost died my wife stuck with me through it all. But when i started to heal i noticed that i was either mad or depressed i was taking a time release anti deppresent for about to years and it never seemed to help i still would get in a rage. About a month ago my wife told me in a hatefull way that she was going to divorce me and i lost my mind we got into a phisical confrontation no one was hurt it lasted about 30 seconds. Anyway my point is that i had no ideia that having so much of my gut removed could cause such mental problems with depression and anger they have found the right anti depressent and im going to therapy and thank god i got the therapist i got she is amazing im sure ive lost my wife forever and that is killing me sometimes i think it would be easier to kill myself as to deal with being away from her she truly was everything to me and im angry that i was on the wrong antideppresent and that i had no ideia that my “happy cells” were in my gut. The one thing that is keeping me above ground is my son who is 12 and i have been raising him since he was not quite 3 but even now im thinking im not sure i can go on loosing my wife she truly meant everything to me and i feel no peace inside me at all and im mad at myself for not knowing that having so much of my insides taken out could cause such emotional problems so i really dont know what to do. I dont want to leave my son and break his heart but i dont like living without my wife either

    • Hey shane .. You just described my life … Im also a millwright and got crohns when i was working at a cement plant also.. I wonder if millwright work has somthing to do with us getting it? Well what the hell is a millwright anyways??.. Lol i also lost my wife in same exact situation.. Love ya bro

      • Thanks so much for your kind words i dont think our work causes the disease ive had it since i was 18. But it makes it harder sometimes. I still get down about things and miss my wife. But i try to stay alive for my son. Thanks again for your comment

  19. I have had Crohns for the last 10years possibly longer again like so many of the above IBS and other notions were suggested.
    It now appears i have a rare glandular version with all the above symptoms. I have a fistula and have had some 12 operations in the last 8 years to remove abscesses from my body (very painful)
    My diet is that of soup and white bread with the occasional exception.
    Being a fit and healthy young man divorced with 2 lovely children my fear now is that it has got more aggressive everything i do does not make it better and is now affecting my work and life style social life whats that, relationships are nye on impossible as i do not want me why should anybody else.
    I know there are far more intrusive illnesses around but this has so many factors again every case is different.
    But the word fed up and had enough cannot be truer.
    I work in the food industry but due to time off at work 6months for 1 op it has become impossible to get any normality in my life.
    right now it has abated but as we know when it flares up as the past 3months (hospitalized for 6 weeks) it is something else.
    i wish i never heard of it
    i have visited top surgeons to resolve the issue privately and they all say i have just been unlucky and you poor thing but alas still no resolve
    i guess there is one positive the weight loss however its not been through choice
    they are saying the due to my Crohns my body is unable to acquire the nutritional value from eating thus massive change in diet.
    my latest results are showing that i have whats called surface Crohns breaking out onto my skin.
    i felt indestructible now i dont know i just want my life back
    right now i dont know what to do?
    i have been using Buscopan which helps and i also have an allergic reaction to the steroid injections one of the bestways to combat the issue
    passed out on the floor twice. This has now to be investigated as finding something as effective as the injections is looking unlikely
    my greatest concern is not now but latter as said fit and healthy but as i get older can my body cope with so much stress
    the reason i am writing on here is that a friend committed suicide (big hairy scary biker) he had lived with it for 20 years but it became more aggressive abscesses etc.
    So he finally finished it.

    I can understand this in part! (but don’t want to)

    not working does not help, not eating does not help and not seeing my children really does not help and due to this i have had to move back in with my dad(did not see that coming)

    Thank you for letting me ramble

    • Thank you Paul for what you shared. I am so sorry you are going through this. I know how hard it is to go through Crohn’s while you are also trying to stay strong for your children. You’re not alone. Best, Carly

  20. NnedIm 29 i have been living with fistulizing crohns, ibs and short bowel syndrom.. I found out i had the disease when i was 24 .. I was living on top of the world before i got sick.. I was an ironworker around st.louis .. I loved my job , i enjoyed being up highhundreds of feet off the ground making lots of money (for no college).. It was almost an ego boost being an iron head… I was working when i found out.. I slowly started using the restroom more and more often,my abdomen started aching all the time .. I figured it was just from stress i just recently lost my mother and father , my dad to cancer and my mom to a car accident.. To make matters worse my little brother was now an orphan he was only 3 years old at the time.. I figured i would man up and adopt my brother ,and i did i am still his gaurdian till this day… After all of these events happend i went to doc and told him what was going on and then the test came.. It turned out i had it really bad.. My small intestines were nearly completely closed off.. To make matters worst i was urinating shit out of my penis.. It turned out i had a fistula going from my illeum to my bladder.. They immiediately put me on the strong drugs to try and slow down the progress.. It didnt work.. So they cut out half of my bladder and some small intestine and large intestine.. Now im constantly in pain and always searching for restrooms.. I can totally understand why people like us need suppourt groups.. Meds can only go so far ..

    • I feel you man but keep your head up and try to find a way to go on. Im turning 40 next week and ive had it for 20 years or more ive had the exact same problems and surgery’s twice for those things. And i know what your saying about going to the bathroom through the wrong body parts. But please keep your head high and try to keep going. I still go to work every day and you have to be creative about getting to the rest room
      And just over all feeling like shit but you can will your way through it.

      • Hey mam hit me up sometime id love to keep talking to you. Maybe lean on each other a bit. I sure can use some kind words from time to time and you might to. Id be glad to hear from ya shane

  21. I have Crohn’s and have recently been thinking about suicide. My family does not understand why I get so upset or do not want to go out. My parents left on a cruise for a week so I was home alone with our 2 dogs (i am 20 so being left alone is okay) Unfortunately, I had a flare while they were gone and was dealing with keeping up a house, school, 2 dogs, and a flare alone. Not to mention I hate being in the house alone since we had a break in about a year ago. They say stress causes the disease to “flare” so I think that had a lot to do with it. That and the fact that I wasn’t on my normal eating schedule. With them out of the house and me going through a flare the stress got overwhelming and I was ready to end it all. I wish this was the only time I ever felt this way since getting diagnosed, but its not. I have had to change my major because my doctor told me the stress of the labor intensive major was making my disease worse. My parents tell me to grow up and accept the disease and I don’t tell most people since it makes most of my friends uncomfortable. I feel alone and suicide still comes up a lot in my mind; its a constant battle.

    • I felt horrible reading that your parents are not there supporting you the way that you deserve. I haven’t spoken to my family in a very long time as my family is very disfunctional and hurtful. They caused me many flareups and this one was the worst. I finally told them that I needed to focus on myself, my husband and my three children that love and support me no matter what I put them through. Reading posts like this one makes me see that there are others out there that are just like me and need love and support from people that can understand. So many people don’t understand!
      Had such a rough night I called in sick for work and spent most of the day in tears. My husband hugged me and said please don’t do anything stupid I need you here with me, He knows that I am at the end of my rope. Keep strong you have all of us to help support you if you need us.

    • Hi Ashley I just wrote another post today and thought of you from the last time I posted. Your post bothered me alot being so young and not having any support. I was only 20 when I first got sick. I had just given birth to my first child and everyone thought I was making it up so I could stay home to be with her. After a long year of being very sick and many wrong diagnosis they finally found out what was wrong and boy did my husband feel awful, because back then he to thought maybe I was sick and wanted to stay home. It hard to deal with on your own but even harder to deal with when you have no support at all. I have had a very rough life growing up and I don’t talk to my family at all. I only have my husband and kids and his family loves me to pieces like I am there daughter. I was really just wondering how you are doing. If you get this please let me know. If you need someone to talk to I would be happy to that person for you. Hope you are doing okay.

      • Well the main thing to remember is you are NOT alone. I was diagnosed at age 7. So I will be 48 this year. So 41 years with crohn’s has been just too much for me on multiple occasions. My first suicide attempt was at age 13. I just figured this much pain, medications, blood tests, doctors… it was just too much. I never talked about the disease with any friends… it’s not an easy thing to talk about. Trying to finish school or hold down a job…I was able to finish college despite an emergency room visit and emergency surgery. I lost my last job due to being in the hospital too much. I have been on disability ever since. No job and my will is dead. Crohn’s messes you up mentally…wish I knew that years ago. Several more attempts with in the last 2 years… 3 weeks in a psych ward.. 24 hour lock down for a total of like 3 weeks. Stuck in there with all the crazies. I started the crohn’s chronicles on youtube to reach out to other crohnies. The main purpose was so that people with crohn’s disease did not feel alone. Your not the only one who wants to fall asleep and never wake up. I am doing a little better now and have medications to help my moods but I still have plenty of very low points…where you lay in bed and look at the wall. Sometimes it helps to reach out to others in the same boat. Hang in there my friend…someday you may help another who is younger and just diagnosed… when you can do that it makes it worth while..
        Good Luck my friend,
        John C

  22. I have had crohn’s disease for 16 years now and I am only 36. I have had two surgeries already and I have been sick this time for 20 months. After trial and error over and over my doctor said it looks like surgery again. The first surgeon I was sent to was scared to touch me. She did my last surgery and knows what it looks like in there and said she doesn’t feel quailified enough to do it. So more waiting and getting more sick until I saw a second surgeon at a cancer hospital that specializes in bowel surgery. I started having alot more pain and issues higher up in my stomach and it was found that I had crohn’s in my stomach, I have always had it in my small intestine. The one month after that during a colonoscopy they found my large intestine to be so narrowed that the camera would not even fit through. I have been in so much pain and so sick all the time, all I do is cry. I have a wonderful husband and three children and work 40 plus hours a week. I myself have said several times in the past few months that I can’t take anymore and I just want it all over. My husband tells me all the time he needs me as does the kids wether I am sick or not and when he married me it was in sickness and in health. I feel my kids miss out on alot as I don’t like being out much and my schedule is done around my eating. Once I eat I don’t leave the house. I only eat once every 24 hours and right now with a blockage I don’t eat much but applesauce, soup or mashed potatoes. I have been doing this for years and years now. I havent eaten outside of my own house for almost the whole 16 years.
    Others try to understand but they just don’t get it. I was almost brought to tears when a few people from my work were teasing me about eating a spicy burger and even beat me 5$ to do it. I know it wasn’t intentional but it made me so upset that they got a kick out of my pain and suffering. It bugs me to hear people say oh I had the flu and everything was running out of me. Yeah try that on a daily basis and see if you could going.
    Sorry so long winded I read all of the post and cried and now I am just on a roll to rant!!
    Thanks for listening and remember you are all so important and brave to deal with such a horrible illness.

  23. I have had Crohn’s for almost 4 years, and I want to die SO badly. I have such severe depression right now. I’m afraid to leave the house coz I don’t trust my body, and I just want to be alone. I hate everyone and everything.
    I’m in constant pain, and the last year has been unbearable (six fistula surgeries!).
    I just can’t take it any more.
    I wish I had the balls to kill myself but I don’t. I’m just a wimp.
    On top of that, I have nothing to live for. I’m single, still live at home, and I’m really screwed up in the head so I’ll never meet anyone. I have no degree coz I’m basically retarded and couldn’t even pass year ONE!
    I’ll never find a real job I’m good at. I’ll never be independent or be able to support myself. Ever.
    It’s just never going to happen for me. I’ll always be alone, living off my parents and the government.
    I know that, and I’ve always known that, so why does God insist on keeping me alive?

    Does he really want me to die a crazy old cat lady with absolutely no bowel function? Is that his plan for me? Because that’s not much of a plan in my eyes.

    I care about nothing. I have no interest in life. I just want it all to end. I pray every night that God gives me cancer so I can refuse treatment and die on my own terms.
    Why can’t God grant me that one little wish?

    • Dear Melanie,
      I know your post is a few months back, so I hope you are okay. Please don’t give up. My dad told me on his deathbed that life is too short to spend it unhappy or angry. I know life seems very unbearable right now, but the hardest times will eventually pass. Hope you get to experience a good day soon. I think diet plays a huge role in making daily life bearable so maybe try focusing some energy in researching and figuring out what foods might be exacerbating your symptoms? Wish you best of luck!!! Hang in there!!! Maybe God’s plan is for you to have some time to be creative and figure out what your purpose is whether that be in writing to help others or some other artistic channel. Who knows?

      • Sorry…one other thing. People say it must be very hard for you to have had crohn’s so early. 7 years old. But I think it is actually easier…I don’t know anything different, lots of pain and just a difficult way about things. I think it is harder for those in their teens, twenties and thirties, because at that point you have an idea of what a normal life could be like and then it’s flipped on you. That tends to piss anyone off. After the anger weres off then the depression comes in and it goes round and round- anger, depression. Again the only thing I can tell you is you are not alone and you will have better days. Out of 40 years I say its been 50/50. That sucks but I’m not gonna sugar coat it… you gotta tell yourself “cowboy the F up and do something”. Maybe diet, work out…plant one is going to pull you up…plus your not going to listen to them cause they don’t really understand. So while your laying there on your laptop plan one thing to accomplish this week, don’t go overboard don’t reach to far. It may be to simply get up shower and walk down the block and back. What ever it is let me know….I want to know that I helped at least one person. I’m just another crohnie.

  24. I just got out of hospital again. It does my head in, the fact that i have no control over my crohns. No matter how much I try and be healthy or do things to make it easier for my disease, it still takes over, runs my life. All the meds are doing my head in and the side effects will kill me either way. Im trying to find the good in all of this struggling.

    • To reply to several comments about suiside and chrons . Believe me I’ve had a 9mm in my mouth more than once and have tried to overdose more than once. But I was blessed with the toughest mom a man could have the woman could take pain like no other human I ever seen. She was diagnosed with terminal breast cancer when she was 36. I was nine and she beat it. I couldnt pull the trigger because for one I could not break her heart. 20 years later I held her hand and had to convince her to take her last breath the cancer had came back just so she could be in peace. And she told me she would give anything just to watch survivor with my dad. And work in her garden and see my son grow up. Now I have him he’s thirteen I’ve failed at two marriages but I have raised my son since he was 3. And he loves me and I can’t break his heart so I will deal with whatever ungodly pain and how ever many more surgerys to not break his heart. My point is this shit sucks but you have to think about the people that truly love you and how its going to affect them I will ender the pain for my son. And fuck the two ex wifes who have no idiea what life can turn into

  25. I am a 19 male from Canada. I was diagnosed with Chrons at the age of 16. Before hand I had been diagnosed with severe environmental allergies, depression, and anxiety. After being diagnosed with Chrons I wasn’t really sure what to expect. If I had of known then ,when I was sitting nervously in the doctors room waiting for the diagnoses, what I know now… I would have burst out crying knowing how shitty life was about to become. A year after practically dropping out of highschool because of chrons (I had dropped to a weight of 120 pounds) I began thinking of death and how it could free me from this. Even to this day… everywhere I look, my family, my friends… They all have their health. And I can’t help but try and think back to then I was normal. To when I wasn’t a monster. I get jealous of any friend I ever have because they can make choices easily and progress in life with little hesitation… Anyways, about a year after my diagnoses I tried committing suicide. Regrettably I was caught and my attempt failed. I then scraped up what ever pieces of me we were left and barely graduated highschool. 2 years after graduation I am 19, unemployed, on expensive medication which will no longer be covered by insurance once I turn 21, trying to go to college and can’t find love. All these things are hard enough to do as a normal person but here I am living in a rural area as a sick 19 year old male. I can’t drive to get to a job anywhere near me. I can’t go to college because if I get sick I will waste money on tuition. If I move out I am no longer under my fathers insurance plan. If I fall in love with anyone or anyone falls in love with me it will make it that much harder to commit suicide. I am feeling exactly the same way that man in your original post spoke of. Every day I wish I might die so I don’t have to suffer another day. I’m 19 and shortly I will be in debt over my head for taking loans for any therapy possible. Soon I will hopefully have enough loan money to pay for Helminthic Therapy (hookworm therapy). My chrons is in remission right now because of Remicade but my allergies are terrible every day of every week of every year. I’ve been suffering for almost 6 years now. This has been life to me. I’m not even 20 for christ sakes and all i’ve experienced is suffering. So yesterday I sat down with my parents and told them that I am going to try and find an end to my suffering through therapy at first. I’ll be taking a shot in the dark with Helminthic Therapy, N.A.E.T treatment, and hopefully in the years to come they have a chrons breakthrough discovery. I told them that I will end the suffering one way or another and that if after I try these therapies and anything else that can possibly help, that if I am still suffering, I will take my life. I told them that I will go in peace. I will be taking my last shot in the dark in hopes of an end to my suffering. Life has been nothing but pain for me. Unfair choices always weighing against me. Typing this doesn’t make me feel any better, the only thing that can make me feel better is to get my health back. The health that was ripped away from my hands at the age of 16. The health my friends have, my family, even my pets… Why me? I never got a fair chance at life and all I know is suffering. I told my parents this “It’s like someone who is being tortured, eventually they just say get it over with and kill me already”. So it’s not that i’m not trying its that i’m tired of the suffering. Enough is enough and if this is life I don’t want to live 40 more years of it. So for now i’ll just keep looking for hope where ever I can find it. Because if I can’t feel normal and healthy ever again then i’ll be taking my biggest shot in the dark yet. Putting faith into the afterlife…. I only wish I could have experienced life and its beautiful virtues… Maybe in the next life eh? Maybe

    • Jordy please don’t do anything rash. You can get through this. Crohn’s sucks! I know that. But it’s diabetes. We can learn to live with it!
      The SCD diet (no grains, carbs, sugars, or lactose) will CHANGE YOUR LIFE.
      Not only will it help your crohns, It will help your depression and anxiety because killing the bad bacteria in your gut lifts “brain fog”.

      I want you to promise me that you’ll try this diet, and get yourself an excellent dairy/soy free probiotic that includes “saccharomyces boulardii”.

      Also, make sure you’re getting enough zinc and B12.

      We can’t cure Crohn’s ourselves, but we can show it who’s boss!
      Trust me, 2 months ago I was ready to give up. But my life has changed.

      Find pleasure in the small stuff and don’t put yourself under so much pressure.
      You’re doing the best you can.

      • I just want to go to college and at least get a diploma so I can pay for myself in case my family passes away… I’m so scared of screwing up somewhere. I’ve been on a diet for almost a year now which is no dairy, wheat, soy, sugar, yeast, caffeine, preservatives, corn, and a lot of veggies and fruits which have pollens related to ragweed and grass etc. The allergies I’ve been suffering from are just so severe and they have been for almost 10 years now. They’re beating the hell out of me and I have them because of my messed up immune track which seems to be too stupid to repair itself. I’m on a very strict diet and its still not helping. All these things people are claiming to be miracles aren’t working. I know my situation could be worse but its just so hard to fight for something that seems impossible.
        I just wish I could have experienced my youth without issue… I’m so young and already know so much pain… I just really don’t know what to do. I feel stuck and have felt stuck for a couple of years. I wish the government would actually make an effort to create a legit cure and not let pharmaceutical companies just treat us with patching crap. I havene’t and can’t even experience having a beer with some buddies at my first bar. I haven’t even been to one because there’s nothing there I can partake in… I hear great stories and people seem to have so much god damn fun. But the only fun I can ever have without suffering for it afterwards is video games… I feel so stuck…

      • I know how you feel Jordy. For the last year I haven’t been able to work at all because of fistula surgeries. I’ve never gotten a diploma or degree either. But there’s more to life than that. Don’t pressure yourself. If the diet and drugs you are on are not working, then it’s time to talk to your doctor about other options.

      • Jordy I’m sorry the diet isn’t working for you, have you talked to a doctor about an immune suppressant like Remicade or Imuran or Humira? Some people do very well on them. I’m not sure how much they cost in your country but maybe it’s something you could look into.

        The best thing I can recommend to everyone for pain is 3 X omega 3 tables every day before you eat. It has helped my pain levels significantly. And I probably already mentioned it, but manuka honey and a probiotic with Sacchromyces Bourlardii in it has also changed my life.

  26. Damn i’m 19. Chrons came out of nowhere in january and got emergency surgery. I honestly cant take this, i got fired from my job because of this, lost friends and cant approach girls. Everytime i eat i wonder what i’m going to feel like after the only thing i enjoy is lifting weights but it makes it hard for gains when you cant eat 😦 Depression hits immedietly, marijuanna helps but its temporary. i accept i got a crappy draw of the genetic card. With this disease i cant have a career, i’m starting to lose my hair, and cant ever have kids ( i don’t want them to suffer with this disease) i’m extremely lost. Im willing to accept my fate and end this bs. With out this disease i know i can conquer anything life would be too easy.

    • Hang in there.. that’s all I can really say. Check out “The Crohn’s Chronicles” on youtube.. I started them a few years back. It may or may not help… but the bottom line is to remember you are not alone.


  27. Well.. I was diagnosed with crohn’s when I was 7. This year (2013) I turned 47. My first suicide attempt was when I was 13. I figured that if this was the pain I was going to have to deal with for the rest of my life.. then I didn’t want it. Last year it was back on a warpath again. Lost my job…still possibly going to loose our house to Bank of America. I had multiple attempts and landed in the psych ward each time for a total of about a month. I’m a little better now, I still think about suicide everyday. It’s like this dark side… almost like another person, a second personality. I have done a handful of videos on youtube called the crohn’s chronicles. My son and my current wife is the only thing that gets me through the day. I tell others with crohn’s that they are not alone, it’s just hard to follow my own advice. I go to my therapist I take my meds. I tattooed my arms to help hide the scars and I take it one day at a time, sometimes it’s one hour at a time. I know I’m not the only one…it just feels that way.

  28. On the year of 1997 some different came about my life I was 14years old and I
    was diagnosed with a rare disease called crohn’s disease. I thought my life was over I was sick with the disease about a year before the Doctors even found out what it was very hard at times with all the stomach pains nausea weight loss anemia pains with my joints. I thought to myself GOD why me out of all the things in the world why God choose me for a disease with NO CURE. I struggle mentally and physically with this disease my mother couldn’t help me my Dad could help me only God I prayed so hard I could feel the spirit of God all n my room but I tell u my friend it wasn’t easy hooked on pain medication, insomnia but all I could remember is saying the lord is my strength and salvation whom shall I fear the lords is the strength of my life whom shall I be afraid my mind would wonder off thought of dying even some days just crying and angry even the DOCTOR told me that people with crohn’s didn’t live that lone oh what a nightmare. I have two colon resection and one emergency surgery and MANY, MANY, MANY HOSPITAL STAYS and Visits but threw it all I made it even though I didn’t understand but I learned to trust God more and Never Quit and Never Give up its easy to give up but its take real hard work to keep fighting Keep fighting keep fighting and Never Give UP!!!!!!

    • Thanks for the support, everyone. I also have had 3 resectionings of my lower ileium and spend more time than I care to remember at the hospital, humira makes me sick, as well as remicade. Any drugs that lower my immune system ends up with a reaction. I take Norco and morphine sulfate for pain and have two fistulas, I have bad days mostly but all in all I try to stay positive. But I can tell you now this is worse than even doctor’s know. Like the stupid commercials for humira, the guy who worries about his symptoms showing during an interview……..WOW how the heck is he planning on keeping his job is my question. Sometimes I have wished that it was terminal so it could be over and done, but then I have one of those sneaky day’s where I can do anything without pain and realize there are many people with bigger problems than I and thank God for the blessings in my life. This is a great place for us to vent and KNOW that when it is read, it is understood. Ty all and may God help us all to feel better more often.

      • Dear Dean
        My Crohn’s is in operative. I no longer work and am on SSI. None of the current medical drugs help me.
        I have found that staying away from fiber foods such as vegetables and fruit help. Also, beef, and pork.
        I take over the counter anti-diarrheal med’s. At least two times the dose.
        I add B13 and B9 plus a Multi-vitamin.
        To help keep me a bit healthier.
        I relieved all the stress in my life. I suggest you do that with your wife.
        She seems unvarying and has a lack of competition for your diseas.
        Stress keeps us in flares.
        Your life seems very stressful. You will have far more better days if you get out of the stress.
        A question for you for my Crohn’s study. Did you have your galbader out before your chorn’s or before it became cronic?
        I am trying to find out if this has something to do with the rise in IB and CROHN’s.
        I had mine removed 36 yrs ago. Since than I have had Crohn’s.

    • Everyone has a similar but different story and some have a hard time talking about it. I myself don’t feel comfortable talking to people that don’t understand what is going on in this crazy body of mine. Unless they have been in your shoes they don’t really understand. I felt comfortable telling people about myself on here because I know that you all know how it feels and any support from people who truly understand even if I don’t know you personally is better then not being able to talk to anyone. When I wrote last I was waiting to see a specialist surgeon at a cancer hospital that has dealt with crohns disease before. I ended up having the surgery done by emergency. I had 4cm of small bowel and 10cm of large bowel removed this time. I was cut and prepared for an ostomy but he decided to not give me one last minute. I had a very hard long recovery this time and the pain has never really gone away. I now have a spastic colon which is very painful when it acts up. The joint pain I have had for over 10 years is so bad that I now not only have arthritis, but fibromyalgia, (i have several fibro lumps on my body) this hurts me all the time. Then several weeks ago I was in so much pain I was unable to walk. I was bed ridden for days and when I finally was able to get to the doctors I was sent for an MRI. I have two crushed disks in my back and there is no cushion left between them, they are overlapping and crushing my siatic nerve. At night I must move at least every 15 to 20 minutes so that I dont either get pain, or numbness in my legs, back and arms. It has caused me to lose the feeling in my legs and when I try and stand I hit the floor until the feeling comes back. The doctor says all we can do is give me epidurals in my back to help. My crohns is full blown again and my GI doctor has given up on me, since no medication has ever worked for me. I am now waiting to see a crohns specialist in a top hospital in Hamilton, Canada. I really haven’t had what people say remission or good times, so I have thought about ending it many times. I live for my husband and kids. I tell my husband all the time I could never do anything to myself but wish many a nights that I would fall asleep and just not wake up. I want to see my kids grow up but I feel like they would sometimes be better off without me. They miss out on so much and I miss out on so much. I have never been able to go to a school trip with them. We have never gone out for dinner as a family because I only eat once every 24 to 30 hours because I only eat at my own house. Even at Christmas I sit around the table at my inlaws and watch everyone eat and then take a plate home and eat by myself. I have to go days without eating if we do want to take the kids somewhere special like a concert and then I have almost passed out from not eating. I barely eat enough calories in a day to stand up so I am tired all the time. I still force myself everyday to get up and work a 40 plus hour job everyday. I refuse to call in sick even on my worst days. I have missed only about 11 days of work in 8 years. I qualify for disability but it wont be enough money to pay my bills or raise my family. I also feel this as a sign I really have given up. I wish my body would make up its mind, get better or just finish me off. I hate that I feel this way but it is to much to handle some days and it is getting harder and harder to put on a fake smile for people around me.
      Long again sorry, don’t talk about my health much to others as I know they don’t understand, and I hate getting wow but you don’t look sick. It makes me so angry.
      Thanks to all of you for listening.

  29. I am so glad I found this page. On March 4th my 30 year old son disappeared at 8:30 pm. He told his fiancée and mother of his 6 month old daughter he would be right back. He never returned. I came out the next day and we began a search for him with the help of the local police, local news stations, and hundreds if not thousands of people on social media. People were even donating hundreds of dollars to a fund we created to help find him. Sadly at 10:30 pm on the night of March 8th the local police department informed us they had located him and it appears he commited suicide. He was in constant pain since his diagnosis in 2010. He never went into any type of remission. Obviously it was bad enough to leave behind his daughter whom he adored. It helps a little to know that he wasn’t alone in his pain. I just wish we knew just how bad it was and could have supported him more. Happily, he kept all his friends when he was diagnosed, even to the point of them taking him to and from doctor’s appointments. We are all in so much pain. This site is helping me understand. Thank you.
    Hopefully he left a note that will help us understand a little more. We await the release of his personal property sometime this week.

      • I am so sorry for your loss. No words will ever comfort you or your family. My prayers are with you.

        Currently, I am at an eating disorder hospital in Oxnard, CA. My des ease was killing me through starvation. I am now in remission and working toward gaining my health back.

        God be with you all

      • Shelley I am very very sorry for your’s and your families loss. Severe Crohns is unrelenting – just when you think you are getting better and are coming up for air – wham here it comes again – like being stuck in the sea with waves breaking over you never ending – while your emotions are being undermined by loss of seratonin and other vital vitamins – unknown by you apart from feeling really depressed and down. Combined with fatigue and the stomach pain. He was possibly not in his right mind literally when he chose his actions – that’s what the disease does to you. As to how to help or stop it? I don’t know the answer to that one which is why I am on here also. I know this disease isolates you and I know it is possibly a chemical imbalance affecting me but I still feel so bad and so much pain I can barely eat and feel there is no help coming and it can only get worse again. It’s a form of torture – mental and physical.

      • Stress is probably the worst thing for someone with crohns. No matter how far away you are from other crohnies… your not alone my friend…diagnosed when I was 7…I am 49 now. Life has been a rollercoaster. I started “The Crohn’s Chronicles” several years ago on youtube. Please feel free to make videos and share…you never know who you may help.

  30. I live in Japan, for at least another year. I have lived here 5 years, and while I have been here I have had parts of both of my intestines removed.

    I am on Remicade, which feels more like a crutch every day. I have suspicions that Remicade is messing with my nervous system, as well as my short term memory (nothing HUGE, but not fun, nonetheless).

    Because of the myriad of medication I am on (PentASA, Remicade, a couple others), I am virtually sterile. My wife and I have been trying to have children for 8 years. The last hope we seem to see in this department is hormone therapy, which doesn’t seem very hopeful anymore.

    Because my flare-ups lately have been stress-related, I have difficulties holding full-time jobs. I am forced to request part-time positions at any company for which I have worked, although I usually remain hopeful that possibly the next job will be less stressful than the last. All jobs have deadlines, all jobs are work. Work, it seems, slowly kills my body, whether or not I enjoy it.

    My wife is working longer hours to compensate, and with one parent stricken by an incurable disease and the other working full-time-plus, adoption agencies bury you in paperwork until you cannot see adoption as a viable option, short of putting tens of thousands of dollars down to make things faster, or go through the process of international adoption….

    It has been a long time since I have felt depressed because of Crohn’s on this level (high school, I think). My wife and I were pregnant once, four years ago, before I needed to have both PentASA and Remicade. We miscarried.

    We have both been hopeful for and wanted children our entire time together. It’s hard to look into the future and see so little hope.

    Now, that aside, I do not think that I could be suicidal. I love my wife too much to hurt her that way. The only thing that made me post here is another thing I have been thinking from time to time lately. If my wife had married another man, she, being extremely fertile herself, would have no issues becoming pregnant. If I had died of the complications Crohn’s gave me as a teenager (Fistulas, bleeding ulcers, etc), maybe she would be happier…

    • Well you are not the only one to feel this way, so no.. your not out of line. After my second surgery (emergency surgery) the day I got home from the hospital my wife came into the room and said…”I can’t do this any more. I called you mom to come take care of you.” I was devastated. She’s right I thought. Who would want a broken man? Then I got lucky. The next person I met I told them everything, just so happens she was a nurse. I tried pushing her away because I figured she would end up leaving anyway. We have been married 10 years now. If your wife wants to leave, you cannot make her stay, you cannot make someone love you. The best thing you can do is focus on yourself while still letting her know you love her. I have had multiple suicide attempts and been locked up in the nut house several times. The empty and painful loss of someone you love hurts. Like I tell so many people who have crohns… you are not alone. I started the crohns chronicles on youtube, I have like 17 or 18 videos spanning the last 4 or 5 years. Feel free to e-mail me anytime.

  31. Hello,

    First of all I would like to say I truly feel for those suffering from Crohn’s disease. My mother was diagnosed with Crohn’s disease over ten years ago. She was extremely depressed because where we live there was no one to assist her with her osteomy and doctors would refuse to do additional surgery on her because of taking preventative medication so long, her body was unable to heal. She had a large hernia (as big as a basketball) because of her weak stomach wall. From the medication she also was diagnosed with a kidney disease and vasculitis. Due to her hernia she was unable to lay down and had to sleep in a recliner. She was unable to sleep due to the large doses of prednisone she was prescribed as well. My mother took her life in June 2014 because of Crohn’s disease. She said she just wanted to lay down and rest. My mother was the toughest person I have ever met and this disease made her take her life. She was very caring, considerate, and loved her family very much. She left behind her three sons and a husband whom she was married to for 30 years. My mom felt she was a burden on everyone and that she was ugly for having an osteomy. I am telling you this because I want you who have Crohn’s disease that you are not a burden. You are not ugly. I would rather go to doctors appointments every day for the rest of my life with my mom then to not have her here. To me she was the most beautiful woman in the world. I know this disease is discouraging but never get discouraged. In the ten years my mother had Crohn’s disease awareness for the disease has grown dramatically. I did not know what it was before now I can’t turn on the tv without seeing a commercial on it. Better times are ahead and help and answers are coming. Hang in there fighters.

  32. I’m a 20 yr old female who is falling apart. I was diagnosed at 12 had been sick earlier than that but my da thought I was just being an anorexic and my mom thought puberty.
    I went through the prednisone, mp6, remicade, pentasa, and so on and so forth. I’ve had terrible depression which never got looked at by a trained professional but I got over. I’ve had psoriasis, arthritis, celiac, cysts, ulcers, anemia, thrombocytopenia, it seems like everything and I’m tired.
    I go to college day in and day out. I have severe anxiety when I go on car trips, plane trips, and go anywhere with a threat of no toilet. Sometimes I think why does a 20 yr old need to worry so much. I read about people getting colostomy bags and wearing diapers. I always think if I get to that point I might just end it. This has been hard for me and I just want to be normal. I’m sick and depressed and really think I need a psychiatrist but can’t afford or bare to ask… I need help

    • Well my friends..yes it is a tough subject. My name is John. I am 49 years old (50 in Feb of 2016). I was diagnosed when I was 7. My first suicide attempt I was 13. I figured if this is the amount of pain I’m going to be in for the rest of my life then screw it I wanna check out now. Well I just ended up hallucinating for like two days. Then several years ago I lost my job because I was in and out of the hospital so much I just could not work. With the pain…no job, so tired.. I was like I can’t do this for another 10-,20,30 years.. Several failed attempts…just ended up spending a total of like 3-4 weeks locked up the nut house. You never really understand how with it you really are until you spend time with real crazy people…lol. My wife told me how much it would hurt her and everyone else if I had succeeded. It just didn’t register…I was just too far down this time. She took me to a group of parents who’s kids and committed suicide. She checked in ahead of time to see if it was ok. So we show up and I can feel the tension in the air. I felt their anger…their “how can you do this to your son, wife, family?” I told them my story of why….and they actually understood…and I thought well shit..your suppose to tell me not to! Well anyway I think I helped some of them understand suicide a bit better. Then….my younger brother (by almost 10 years) overdosed. I was crushed…he and I had done the rock n roll band thing for over 12 years…we were in the middle of making a comeback…wrote another 12 songs…and then bam..notthing. It will never be finished. Now I know and understand loss. It hurts real bad. It would be wrong of me to just tell you don’t do it. You have to figure it out…but…get help. I never really believed in support groups….bunch of people sitting around boo hooing about how tough life is. So I made videos. Youtube- Crohns Chronicles …there is probably 17 or 18 videos…the biggest thing I can tell you is “YOU ARE NOT ALONE” if there is one thing you can take from me it’s that. There are no magic pills to help…this may sound strange…but I play a lot of CT Fletcher videos for inspiration…he is an old school weight lifter with just such a positive attitude. So…it’s you…your brain against your disease. I have learned to meditate.. so when the pain comes on or I have to do some other F up procedure I can escape. Get some tattoos to practice this. Sit for 4-6 hours… sounds stupid but meditation doesn’t cost you a thing. Depression haunts me daily…find your safe place…put your story out there…you never know who you may help.

  33. I am in the UK – have had crohns for three years, have had 8 or 9 operations for peri anal fistula and absesses – have a colostomy bag – no friends after they dumped me I beleive? through fear of me needing to lean on them for help? to help me out of this hole – as I am single and have no family relations at all. I am 44, have no children or husband. I had one year off during recovering from the operations where the disease went into remission. I felt stress on being dumped by my surgeon for anymore help at the minute, yet left still with a fistula (I think for money/time reasons but I can’t prove it) and simultaneously dropped by my psychologist/therapist because of countertransferance onto me – all in one go and hey bingo – a new flare up. Stress is my evil foe here – only it is impossible to live without stress especially when you are coping with what I am completely alone. I live on a farm on my own 2 miles from village. My ex was so horrified by my disease he dumped me after I had moved to his side of the country, then while I was ill and in hospital for months he ran a smear campaign around my local town and village and my landlords telling everyone whatever lies and hometruths he knew about me – so that he could seem credible – that would frighten them and work on their insecurities/fears. I had just moved to the area and so none of them knew me and when their friends started telling them other things – I guess they all just believed him. So when I encountered any of them after my colostomy I was either treated like I was totally shunned and spoken to in metaphors I was unaware of at the time but knew they weren’t being friendly back – by everyone. I worked it out in the end from finding one place 20 miles away that didn’t automatically treat me dreadfully that it wasn’t me and slowly unravelled what he had done even though most of them still want to believe him because he has a very famous father.
    I am absolutely exhausted from fighting to stay alive, excercising when I can , trying all special diets, communicating carefully with doctors and surgeons and people who forget or ignore important things or plane simply haven’t time to actually understand fully what I am dealing with because it is not their department. I just want to die right now and have it over with even though I know it is probably chemically induced due to not absorbing anything in my diet in the last three weeks – what is there to live for?

  34. Hi everyone, my name is Joe. Ever since I was a kid, (Im 39) right now, I have had pain, very miserable life when it came to eating and didnt know why. 3 years ago the pain started to get worse and worse, affecting my daily life. Think about it, between pain, not been able to eat things that taste good such as ice cream, beans, corn, rice, almonds, oh lord french fries, hamburgers, etc, etc, etc. Now Im having the worse flare and if it wasnt for my fiance, that knows a lot about stuff like this, I would have never been able to learn how to control it and live with it (without meds). Now bare with me, cause I have another problem, so it is very difficult to make a special diet, genetically I produce kidney stones since I was 9 years old. Like the old saying says “damn if I do, damn if I dont”. The things that I have to avoid because of Crohns, got to have them to avoid kidney stones. One way that I have been able to control Crohns and prevent kidney stones is a liquid diet, yes liquid diet. Smoothies in the mornings, protein shakes (non dairy) for lunch and home made apple juice with carrot juice are my meals for the day. Everything I eat, goes thru a blender, and believe it or not, its not as hard to digest, nutrients are very well spread in my blood stream, the pain from 1 to 10 is a 2, just mild, the diarrhea is gone. Solid stool. I have combine that diet with exercise, specially walking, (love hiking). If anyone needs to know what I usually eat (drink) send me a e-mail at Been diagnose with Crohns at late age has made life miserable, but learning how to deal with it without thinking about suicide is a lot better. Hope I can help with this. JOE!

  35. Boy oh boy, where do I start. Been dealing with chrones since 1988 to present, humira makes me very ill, remicade did the same. I have often heard that suicide is the cowards way out, but the adds on television are truly misleading. Seeing someone who is worried about symptoms during a job interview. What a joke, how about keeping that job, supporting family, going out to a movie. This is where I am at. I wish for death every night, and I am not proud of this. Other than an uncaring wife and my boy’s waking me up with unnecessary running up and down the hall, mind you they are 22 and 23 I have tried to express to them that I need a little respect in order to rest through the pain. The wife breeds miniature Australian shepherds, and we have 4 dog’s and 3 cat’s that I have to care for every day. I even clean the house and make dinner is ready when the wife gets home. When we have a litter of puppies I am the one cleaning up poop all day, with a heightened gag reflex. Now I love my animals and they are family, so no matter how bad the pain I refuse to let them suffer and be surrounded by fecies. My stress levels are truly off the charts,as well as the pain. But I have the most loving siblings, and my wife and I were married with her complete knowledge of my health. But she has no compassion at all. I am currently thinking about divorcing. But where does that leave someone who is unable to keep a job? I don’t believe in suicide because the light of my life is the lord and I am going to be there when I do finaly pass on. But these thoughts should not be in my head. Chronic pain is a bitch and my doctor is not really caring about my quality of life. I am so sorry that so many feel as I do but wish the doctor’s could understand rather than worrying about all of the idiot’s who make it hard to get pain management without doctor’s acting as if everyone is just there to get high on pain meds. I have had three resectioning operations and not a change. God bless you all and I hope that you are all doing better.

  36. I too have thoughts of how not waking up would be a blessing, but that would be only for me and the end to my suffering. I have a wonderful family support system as well as a love for the sacrifice the lord has made for me and everyone that is living and breathing no matter what pain causes me to feel. I’ve had chrones disease since 1988 when I was just 19 years of age. I lost my scholarship after I was diagnosed, and my first chair at a great jazz college. Now I am 48 and can’t work, after working so hard to get my auto certifications of which I have 14. The thing that bothers me mostly is stress, the wife who knew that I had chrones disease before I ever proposed marriage has no compassion at all, she knows how
    Much I love animal’s decided to start a new hoby of breeding miniature Australian shepherds, so when she is working and we have a litter of puppies I am constantly having to clean up thier pen. This is not a puppy mill, I attend to every need for these beautiful creatures. When I am not feeling well or not, I even do as much housework as I am able and
    Have dinner ready when she gets home. But no matter how I tell her she doesn’t think that cleaning up poop all day when you’re gag reflex is so easily effected. She never remembers to even shop on a regular basis and leaves me with nothing to eat for days, which makes my gut worse. We even have two young men living at home and when she does shop she buys a bunch of case’s of hot pockets that the boy’s don’t mind cause there 22 and 23 and healthy. Enough of that……. I have to say that everyone who has severe pain and has a doctor that won’t give you anything for it is so wrong, I often tell my family how I would never wish this kind of pain on anyone, but now I am wishing that my D.R.could experience it for a short time. I am strong in faith, but when I suffer for days at a time and have to put on a smile when I am at the store or the D.R. office it does sound to me like a wonderful thing if I just didn’t have to wake up and see just how bad is it this morning…….
    God bless you all, and I know what it is exactly that you go through. MUCH LOVE Dean.

    • Hello, my name is Tanya and I have had crohns for 19 years, 3 bowel resections and still suffering and very sick. I also suffer from fibromyalgia, hypersensitive nerve pain in lower back from crushed disks, restless leg syndrome, chronic depression. I wrote on here before way back and I still feel like this today. I have a supportive husband and three children 18. 14,and 11. I dealt for with a difficult doctor for 16 years and I switched doctors. I know see many specialist for all my problems but the best doctor is my family doctor. He has been my biggest support and knows that I am telling the truth when I say I am in alot of pain. I use to have a high pain tolerance even having my children all natural no pain meds. Now I can’t get through a day without my pain medication. As supportive as we hope and pray our spouses would be they can’t even come close to understanding what we deal with, and because it isn’t the big c word we are not given the same compassion. I no longer work because my body just wont let me and I am so exhausted the smallest amount of work makes me need to rest. I along everyone else who has crohns is here for you and completely understands you. Maybe doing some research and finding a doctor that will help with your pain would be good for you. Please hang in there, I know its hard and its tough to not want to just throw in the towel but there has to be someone out there that will listen to your problems and help you. Good luck

    • Hey brother,
      Totally understand. I was diagnosed at the age of 7. I will be 50 this coming Feb (2016). I barely made it through college, emergency surgery during the summer between junior and senior year. I returned to school for my senior year against the advise of my doctor who wanted me to wait one semester. My second wife walked out on me the day I got out of the hospital from another emergency surgery. While barely able to stand I was in the bathroom leaning on the sink looking into the mirror when she came up from behind and put her arms around me and said “I’m sorry…I cannot do this anymore. You are always going to be sick. I called your mother to come and take care of you.” As you can imagine I was devastated.
      I worked up until October of 2007. I was doing an overnight surveillance on several employees that were stealing from the store. I kept blacking out…my wife said I looked yellow. So by the third night I was so disoriented I could barely figure out how to drive. Went to the emergency room and was admitted even before I could finish the paperwork…passed out and woke up two days later. My liver was failing do to the meds I was taking for crohns (imuran).
      Within the first week of my 2 1/2 week stay, the company I worked for had paperwork for me to sign to put me onto short term disability. Took almost 3 years to get my SSD approved. The judge even said “I am not sure why it has taken this long. You should have been approved at least 2 years ago.” So he granted my disability with two years retro.
      Since age 13 I have had multiple suicide attempts…five or six. I am past that now but it always seems to lurk in the back of my mind.
      I started doing videos on youtube called “Crohns Chronicles” I figured that maybe… just maybe I could help someone understand that they are not alone.

      • Thank you for the kind words of advice, I haven’t worked since 2009 and I constantly feel useless. I was a mechanic but now I just watch the days run one into the next hoping maybe I won’t wake up and be in heaven. I’ve been denied disability benefits again and again and I don’t think that the wife knows how hard it is just to clean house or make dinner. I am not depressed it’s just wearing on my very being that I can’t provide, or even afford to take care of myself or child support. Chrones is so brutal yet I constantly count my blessings each day. God bless you for telling us all your story. I don’t think doctor’s have any idea just what it does to you quality of life or your zest for it. Take care. Dean

      • I hear you Dean. But your right…unless you have the disease you really cannot imagine what it’s like. I tell people that the feeling is like having the flu. You feel weak and shaky. You get hot flashes and can sweat at the drop of a hat. You feel like you could throw up at anytime. You go to the bathroom so much that your butt gets sore. I hate when people say “you don’t look sick”. As if they are saying you need to go to work. Went riding (motorcycles) with a group. When asked what I did I told them I was disabled. One actually said “how?” “how are you disabled?” Told him I had crohn’s and he said “never heard of it.” And was given the look like I was some sort of scumbag con artist. I guess I wasn’t missing an arm or leg so I should be able to work. My father-in-law seemed to have the same impression until he ran across something on the internet…then he actually apologized to me and stated “I didn’t know how bad it was”. Well Dean…stay strong brother…like I always say..and feel free to use it,,,always tell other crohnies “you are not alone”.

  37. I have suffered from Crohn’s disease for at least for the last 35 years.
    I attribute this condition to galbader disease.
    I am doing a study of crohn’s to condition.
    Currently, no medication from doctors has helped me. I do take a double dose of anti-diarrheal medication. I stay away from fruits and vegetables. It supplement with B12 and B9 along with multi vitamins. Stay away from fatty meats such as beef an pork.. Write down any foods that caused a flare. This will help you more than you will know.
    I have fewer attack’s
    I am not in anyway telling anyone to follow my relief for symptoms, it just helps me.
    Bananas, rice, and pastes help. I stay away from fiber foods. This the supplements.

    • Well I was diagnosed when I was 7 years old. I will be 50 this coming Feb 2016. I have tried all kinds of medications…. most cause worse side affects than what it is worth. In the past several weeks I have been working with a super professional dietitian. She works out of the Power House Gym in Tampa FL. Part of crohn’s disease is that you always feel tired and you are just not able to absorb enough nutrients. So this dietitian usually works with professional athletes from hockey, swimming, baseball football…
      So I explained crohns disease (she also researched this) and asked how can you help me. So a lot of blended…protein shakes and high grade vitamins. So she has worked with me over the past weeks (probably 5-6 weeks). I feel better, I am not taking any medications, I get plenty of rest and avoid anything that will cause stress. But you know how crohns can be….what might help one person will not work for another. Vitamins from “Garden of Life” was created by a man who has crohns…worth looking into….can find them on Amazon. But I also highly recommend Polina (813-470-0097). You do not need to go to Tamp…she can do it over the phone, by Facetime chat…and she can ship you whatever you need. When was the last time you invested in yourself….your health.
      I still suffer from depression and that feeling of uselessness. But things seem to be looking up. I thought it was only right to share this information…I don’t sell any of this stuff nor do I get any sort of “kickback”.
      Remember everyone….you are not alone. Check out my youtube videos “CROHNS CHRONICLES”

  38. I have to tell you all about my Christmas present, the easy go pro, Christmas day opening presents and got a little embarrassed when I pulled out a little step for the toilet. I just said thanks to my sister in law who purchased it and pushed it under all of the wrapping paper. When I got home and had to use the restroom i was so amazed at the fact that I did not have to push, strain or have my fistulas and hemorrhoids feel as if they were on fire. I knew immediately that this little step was a godsend. I have been using it every since and the difference is something that I have been praying for. I DO NOT have anything to gain from anyone who may purchase one, and there are other brands of the same thing. I felt that I had to let anyone with poopie problems about this inexpensive way to relieve pain on the pot. I wish you all a happy New year. Please try this or maybe even try a 4 inch tall stack of books beneath each foot to get your knees up higher before you buy one. I am feeling better with this and don’t need to go right back to the bathroom every 5 minutes. Dean Johnson.

  39. I was diagnosed in 2011. The diagnosis was arrived at after I was rushed to hospital with suspected bowel cancer. They said it might be crohns but didn’t explain what crohns was. For years I avoided doctors because I work internationally and medical records can affect your chance of getting visas and insurance. I got better and thought they had got it wrong and had no problems, except for permanent exhaustion for the last five years. It came back about 8 weeks ago. I have been going through an attack and the symptoms are pretty bad. At my worst I thought I would die and the symptoms were/are horrific. I don’t go to doctors or use medication and I think it is for me to make the final decision. I’m not depressed, but life without quality of life just isn’t worth it ‘to me’. I ended my relationship when I first got this and for years I have cut everyone off living in isolation. I have come to the conclusion that if I do not get better, I will commit suicide. We go anyway, its just an unusual and religion and society deem it unacceptable. I have tried to join dignitas but they want medical records. There’s no depression, but the pain and discomfort is at times unbearable and highly embarrassing. I have no strength and given the practical constraints,I simply could not hold down a job. I simply don’t want my to live with my body anymore. For the last five years, I was exhausted and couldn’t figure out why. Now I realise this is a permanent state and this is as good as it will ever get. I think I cut myself off so that it would be easier to go.

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