Monthly Archives: April 2010

Crohn’s and Pregnancy: the Big Decision

Someone with Crohn’s recently said to me that she wasn’t sure if she’s going to have kids, because she doesn’t want to pass Crohn’s on. I can’t blame her – she’s 3rd generation with Crohn’s, and so it seems theoretically likely her child(ren) would have it. I think everyone with it goes through that questioning period. I know I did.

Ultimately, my heart beat out my lower intestine. I wanted to start a family. I wanted kids and always have. And since my husband is tall, it might be the only chance to introduce some height into my family. There were so many reasons in the “pros” column, that it quickly outweighed the one big WHAT IF in the “cons.”

If my daughter develops Crohn’s, I’ll never forgive myself. I know this is true.

But that said, I don’t think that for me it was reason enough to not have a child. And now that I’m a mom, I know I will blame everything, from papercuts to heartache, on myself. I love my daughter more than anything in the world, so I want her to have everything in the world except pain, and if she can’t then I blame me. I’m a typical mom.

But what if she doesn’t get it? What if she stays healthy? What if she ends up being the doctor or researcher who cures this after all? What if…

So for her, I’ll fight for more research around Crohn’s disease treatments and cures. And for her, I’ll stay healthy myself. 

And that fight started before I was a mom, before she was even a twinkle in my eye. A few years ago I was having a flare, and having trouble figuring out what course of treatment would work best. Working with my doctor, we decided on Remicade, and my first few treatments went so well that I called him and told him I suspected I was in remission. Already! “Go get a blood test so we can check for inflammation, and then come into my office,” said awesome Dr. D.  He knew that starting a family was my goal. I talked about it in every visit. I obsessed with him over what treatment would be okay to stay on while pregnant. I went to learning sessions and spent hours surfing the web for information on genetics and fertility and on and on and on and went back to him every week with reports. My goal was clear: Remission, then baby. Really, remission because of baby.

So I started Remicade, and it went really well. And then, per Dr. D, Ihad my blood test, and a few days later I went to his office. I sat in the exam room waiting for him to come in – it’s a busy, large practice, and there are always a ton of people buzzing around, nurses, patients, doctors, receptionists, etc. Dr. D walked over to the open door of my exam room and in his booming voice said, “All right Carly! Ready to get pregnant?” And slammed the door behind him. I can only imagine what everyone standing in the hall thought.

What it’s Like to Get Remicade (at Least, for Me.)

Hallelujah! Yesterday I had my Remicade treatment, and I feel SO MUCH BETTER. I’m sure the instant results are largely due to the 40 mg of Prednisone they give me when I arrive, but I don’t care – I feel nearly whole again.

I remember the first time I had to get Remicade I was terrified, and afterward realized there was truly no reason to be scared, so I thought it’d be worthwhile to tell what really happens during a treatment. Maybe it could make someone else less scared. For me, it’s been a great course of treatment that has helped me live my life, and even have my daughter, so I’m grateful to it.

Remicade is a biologic infusion. Rather than a medication that I get at a pharmacy, I have to actually go into the hospital and have it delivered via IV. The entire thing takes about 4 hours door to door, but the infusion itself takes about 2 hours. The first few times, though, take longer because they go much slower on purpose, just to make sure there isn’t a reaction or something. I, like most people, go every 8 weeks. In between, I don’t take any other medication.

When I arrive at the hospital, I go to Outpatient check-in. They make sure my perscription has been called in and that my insurance is going to cover it, and then give me a patient bracelet and files to take upstairs. Once upstairs, they set me up in a room (although it’s been 3 years, so by now they just tell me the room number and I set myself up…all the nurses know me by name.) I get comfy in a chair or on the bed, usually plug in my laptop to work, and wait to get hooked up.

First I’m given the 40 mg Prednisone, and for the first year I was also given Claritin to ward off possible allergic reactions, but that’s no longer necessary since I’m doing fine. While that kicks in, the nurse goes to the pharmacy for my IV bag of Remicade. Somewhere around then, the nurse also starts my IV. Here’s a photo of what I look like hooked up. The IV insertion hurts a bit, but no more than when they take blood. The more experienced nurses know how to do it quickly and relatively painlessly.

I think that it all looks worse than it is…but if you want to feel sorry for me, feel free to send chocolates or money.

So, usually around this time, breakfast is delivered. Living in Philadelphia means that sometimes you get scrapple. Talk about terrifying. Luckily, yesterday was just eggs and sausage. I took a photo of that too…enjoy!

 

About an hour after the Prednisone, the Remicade arrives and is hooked into the IV.

The drip is totally painless, and I don’t feel it at all. When it’s done 2 hours later, I press the button for the nurse who removes the IV, I usually wait a few minutes in the chair or bed to make sure I feel okay, and then I head back to my life.

Usually that evening I feel energetic and happy (because of the Prednisone), and have a restless sleep (Prednisone.)

Wall St. Journal Article Today on Crohn’s and Genetic Link

An article in today’s Wall St. Journal focuses on the genetic reasons behind Crohn’s disease, and the hope that finding those reasons will lead to the cure. I was pointed to the article by this blog: http://livingwithcrohnsdisease.blogspot.com/ which seems to be a good resource.

Thank you to the Wall St. Journal and reporter Shirley S. Wang for covering this.

Famous People with Crohn’s

Famous people with Crohn’s – it’s an extremely popular topic on many IBD related sites. I think there are a number of reasons for this, but the first and foremost is a little dark – when someone famous gets “your” disease, chances are more attention will be paid to it, and that can only be positive – does that mean more money will be spent on finding a cure? Does that mean some of the stigma will be erased? Look at what Michael J. Fox has done for Parkinson’s.  (I read one of his books btw, an inspiration for anyone with a medical condition.) What Pamela Anderson has done for hepatits. What a slew of other famous folks have done for a slew of cancers. You never want to wish a disease on anyone – but if you must, please oh please let that be a beloved and outspoken celebrity.

My Google search on Crohn’s this morning yielded this story, about a top draft pick at Alabama who found that he doesn’t have Crohn’s disease, though he thought he had since 9th grade. I’m happy for him that he doesn’t have it – and I’m glad that this story is shedding some light on the disease anyway.

Mayor of Boston Thomas Menino was diagnosed a few years ago, coincidentally a few months after I had been, and I believe at the same hospital. He didn’t go very public with it – I am not certain if he’s ever publicly confirmed it. I guess the stigma remains, even for the famous and powerful.

I think the most famous person who is outspoken about his Crohn’s is Mike McCready of Pearl Jam. He’s done a lot to spread awareness, and I wish there were more like him.

Big Chunky Schmooshy xoxoxo

I realize my last post may have been a bit of a downer. Obviously that’s life, up and down. But mostly I deal well with all of this (I think I do anyway) thanks to a combo of stress relief via my hobbies, a satisfying and challenging job, and most of all my supportive family and friends.

I got the best BEST hug from my daughter this morning before I had to leave for the airport. I wasn’t even going to be able to see her because I was leaving before she usually wakes up, but when I snuck into her room to give her a kiss she was already awake. So I got a big beautiful hug and gave her a ton of kisses on her chunky schmooshy cheeks before she became engrossed in her dad’s Looney Tunes and I had to get in the cab. That and – of course – the kiss and hug from her daddy – really made my day and will make this two-day business trip so much easier.

The Ache

Six days and counting until my next Remicade, and I’m living on Tylenol, which is waging a losing battle on my joints. Today has been difficult because I am traveling for work with my laptop, making me ache even more. I seem to have wicked BlackBerry thumb, and my shoulder is revolting from a combination of purse- and baby-wearing.

Last night as we put the baby down, I realized I hurt too much to lower her into the crib, and my husband had to do it. That was really hard. She shrieked and started to cry (she’s used to our nightly routine, and couldn’t understand why I wasn’t the one putting her down.) I like having every minute – no, every second – to be able to hold her before I absolutely have to let her go to sleep, and I didn’t like giving up even that second.

So, this is the Crohn’s sacrifice for me. I know it’s different for everyone. I had coffee with a good friend yesterday who also has Crohn’s, and described to me an awful experience involving a store that wouldn’t let her use their restroom. Everyone has their awful days and their excellent days, yet somehow it’s kind of nice to know I’m not alone in it.

And yet, standing in the hallway outside my daughter’s room last night, I felt lower than low. If I can’t give my baby girl one last hug goodnight, what kind of mom am I?

Stupid Crohn’s.