Azathioprine/Pregnancy & Right Hemicolectomy Operation

[kelster]

Hi,

I am hoping to hear from some of you that may have been in similar situations that I am in.

I am 33 and have had Crohns diagnosed when I was 21. I have never been admitted to hospital because of my Crohns and any flare ups I have had have been a few days maximum.

5 years ago my specialist told me to get an operation as I have 20 cms of bowel that is narrowed and the only way to fix this is to operated.

I decided again the operation and seen a dietician - from then on I cut out things like peppers, tomatos, fruit with skin - anything that is hard to digest.

I am on 150mg of Azathioprine a day. I then lived with my Crohns managing it by my diet and medication. I have only ever been on steroids once and that was before my medication.

I decided to come off Azathioprine in 2012 because my symptoms had more of less gone then I gradually started to weaken and had sharp pains in my right hand side where the narrowing is.

I was sent for an MRI scan in April 2013 where they basically confirmed about the strictured part of my bowel as 'severe'. The crohns is only in my right side where my large bowel joins the small. My options were basically get a right hemicolectomy or try infliximab! I decided the operation was the best way but went back on Azathioprine. A few months later I was feeling fine again! Therefore I guess the medication is definitely working.

To add to this, we want to start a family this year. My specialist recommends I get the operation before I try. I am struggling to get my head round getting this operation when I feel fine and am controlling it.

The surgeon suggested I don't get it if I don't need it.

I worry about getting pregnant while on Aza but my specialist says this will be fine - but I have heard some stories about birth defects.

I also worry if I don't get the operation and go ahead with pregnancy could this worsen the narrowing and risk my bowel perforating?

My thoughts are if I have never came off aza I'd have never got the MRI scan so never be in this situation.

Hoping someone out there may have had something similar...

A very confused lady
:confused2:

 

[EmilyElizabeth]

Hey Kelster, I'm sorry I don't have any advice for you because I haven't been in a situation like yours, but thought I'd respond anyway because at least I understand your concerns because I think the same way that you do when it comes to my crohns. For example, I've never been hospitalized, never steroids, and yet when I was diagnosed my doctor said "I can't believe you put up with all that pain, your intestine is extremely scarred and has narrowed." He wanted me to go on a biologic because he was like you might as well, but I take a more conservative approach. I'm on Aza, and I think it is working for the most part. I watch what I eat, if I flare it only lasts a couple days and I can get it under control. Also, I am trying to get pregnant. I realize that because I am underweight and have this illness, it will probably take longer than most, but it's only been a few months so I'm hopeful.
It's a difficult situation that you face, because you realize that you will more than likely need to get this operation at one point or another, so one line of thinking is why not get it over with and you'll have a (sort of) fresh start. On the other hand, surgery they say can have implications toward getting pregnant, because they could inadvertently damage your fallopian tubes etc. However, that is probably something that happens a very small percentage of the time. Maybe someone who has had surgery then gotten pregnant will respond and give you a better idea good luck either way,

 

[lgpcarter]

This is a tough one! I was on Remicade when I wanted to TTC the first time and decided to go off even though my GI insisted it was safe. I had also been on Aza, but am a very bad pill taker (always forget) so I had stopped it a while ago. I had been in remission at this point for a few years and was feeling generally well. I don't (at least I don't think) have too many issues with scarring and strictures, but I do have several fistulas and have had a couple of abscesses. I had a healthy pregnancy (after 2 miscarriages unrelated to Crohn's) and a great vaginal delivery of a healthy baby girl. She is two now. That's the context for where I am coming from.

My GI told me about 1/3 of patients get better, 1/3 get worse and 1/3 stay the same during pregnancy. That is definitely something to consider. Pregnancy would complicate a surgery, for sure. How long have you been stable and feeling better on the Aza? Would they do a repeat MRI or any other tests for you before you TTC to see if they can get a better idea of the situation?

You have two conflicting medical opinions - maybe you can see someone else? I was lucky to have a OB who knows a lot about IBD. Maybe you can get another opinion - either surgical or GI or OB before you proceed? Is there one of your docs whose opinion you respect more than the other? I love my GI and trust his opinion. I mean, I do what I want in the end, but I definitely respect his expertise and his knowledge of me and my disease so in a case where I am on the fence about course of action, I usually go with what he recommends.

Surgery can impact fertility, but there are treatments for that. I do know people who have had abdominal surgery and gone on to conceive easily.

Sorry this was so long - hope some of it was somewhat helpful!