Struggling with Crohn's

[Kachin]

Here's my story! I was diagnosed with Crohn's disease May of last year ( at age 27) when I was hospitalized with a complete bowel obstruction. I was hospitalized again in June with a partial bowel obstruction when it was decided I needed surgery. In July of 2013 I had a laparoscopic resection of the terminal ileum and cecum (they removed 16 inches). I currently am only taking Pentasa to help with inflammation, but also take a monthly B12 shot as well as iron and Vitamin D supplements because I am severely deficient in EVERYTHING!! My current GI doctor would like me to start Cimzia but I'm terrified of the side effects (I live in the Ohio River Valley area and teach kindergarten and have the worst medical luck). My doctor wanted me to have a second opinion and I am now scheduled to see a Crohn's specialist at the Cleveland Clinic. My husband and I desperately want to have another child ( we have a 4 year old boy) and I'm concerned with the effect Crohn's will have on my ability to have a healthy pregnancy and if Cimzia is safe for pregnancy. I feel like Crohn's has completely taken over my life! I'm excited to join this forum to learn how other folks deal with/ manage their Crohn's and to see if anyone can relate to my issues!

 

[afidz]

Hello! Welcome!
I wanted to start off by saying that some of the best doctors in the country work at the Cleveland Clinic, so it would definitely be beneficial for you to get a second opinion.
Take a look at this part of the forum http://www.crohnsforum.com/forumdisplay.php?f=45 That is the trying to conceive forum, I am sure you will find it very helpful. I have heard and witnessed the miracle of what a pregnancy does to Crohn's. MOST women go into complete remission when they are pregnant, something about the stem cells in the baby (those doctors and scientists are on to something!)I would bring it up with what ever doctor you see so everyone can be on the same page and they can help you achieve your goals
I hope you enjoy everything that the forum has to offer, if you have any questions feel free to ask!

 

[Orchid]

I'm sorry but if your Crohn's is that serious, you need a biologic because it's going to roar back into your life eventually. Cimzia is pregnancy category B, the second safest class of drugs. It means there are animal models that show no serious risk to the fetus but there aren't currently enough detailed human models for elevation to A (which is quite difficult), if anything the Crohn's is much more dangerous to your ability to conceive because if you can't nourish yourself then how can you nourish someone else who relies upon that ability? As someone else who injects Cimzia I can tell you the only thing that's happened to me are mild injection site reactions and a headache on the days I shoot up.

Please don't shop around for a diagnosis if the Cleavland Clinic doesn't tell you something you want to hear, when people do that they pay terribly down the line.

 

[Jennifer]

I agree with Orchid. If Cleveland Clinic agrees that Cimzia or another biologic is the best course of action in your case then I'd give that a shot before trying to find other answers. Crohn's needs to be treated as there is no known cure. Untreated/poorly treated Crohn's will cause more harm to a fetus than the medications out there due to malabsorption etc (except for Methotrexate which is a category X drug and should not be taken during pregnancy and one should also wait 6 months after stopping Methotrexate before trying to conceive).

 

[David]

Hi there and welcome to the community. You've received a lot of good advice thus far. I thought I'd chime in and suggest you explore the link in my signature and see if that's something you might be interested in. It's a pretty exciting treatment option in my opinion

All my best to you whatever direction you choose!

 

[Kachin]

Perhaps I should clarify a bit I'm very aware of how serious my Crohn's is and how unhealthy it would be to try to have a baby without having everything under control. My GI doctor has never cared for a Crohn's patient who wanted to conceive, so he referred me to the Cleveland Clinic so that I could have my conditioned evaluated by a Crohn's specialist who also has dealt with pregnancies. He feels Cimzia is my best option, but wants that confirmed by another doctor. I have researched Cimzia as well. I'm not searching for any specific answer, I simply want a plan for me to help get this under control the best I can and see if a pregnancy is something I can one day try for. I do appreciate the useful information, especially the link to the TTC forum! Glad I found a place to talk with other Crohn's patients