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Hi everyone I haven't posted in a while because I after loads of trying I finally got pregnant and well I've just been enjoying it Smiler

I've had an ileostomy for about 2 years now due to ulcerative colitis and I've always had some rectal bleeding and never really taken anything for it. I've developed quite a few hernias on the incision line also and scare tissue around the stoma which hurts a lot! Because of all of this I ended up in hospital last night and when the consultant came to see me about everything she said how's the rectal stump I said ok but I get bleeding she immediately said that needs to be treated with steroids or azathioprine! I really really don't want to take either because I had such a bad reaction to steroids and immunosuppressants scare the hell out of me :| Im really lost and scared as to what to do because I really want to have the reversal at some pint but probably not for about 2 or 3 years as I want another baby hopefully before I get re connected! I'm just concerned and don't want to do anything wrong and jeopardise being able to have the j pouch surgery

So basically I wanted to know if this bleeding is normal, how has anyone treated it, and can you still have the reversal done (even 2 or 3 years down the line) or does the bleeding mean I'll have to stick with the ileostomy? Also if you have the ileostomy for years before getting the j pouch done can you still have the j pouch or does anything go wrong in the mean time because I will have had the ileostomy for ummm for about 4 and a half years before having the n pouch done

Sorry for such a long message I'm just so worried and don't want to jeopardise having the j pouch surgery in the future, any advice would be great, thanks
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I would assume your rectal stump has - well - rectum and a mucosal lining - and this is usually removed when a pouch is created - just leaving the anus etc - I have not had any rectal bleeding since I had my op done almost a year ago (at University College Hospital London)I still have a temporary loop ileostomy - by the sounds of things you still have some UC in the rectal stump - but if it doesn't bother you greatly... I wouldn't think that this would affect your chances of a j pouch - but why don't you see a surgeon and discuss it? It took me nearly 2 years to get the operation I wanted!
Thanks for your reply, the last colonoscopy of whats left anyway showed up in the remaining colon but if it doesn't bother me I was hoping to not have to take any meds for it really, but good idea I think about seeing the surgeon I think that's probably wise, is it common to have some bleeding?

Also very happy to hear the operation went well for you, are you hoping to have a j pouch in the future?
Sally,

It appears you had an end ileostomy with a preserved rectal stump for future j-pouch surgery. I presume this was to preserve your fertility during your childbearing years.

So, in this case, I would say that no, prolonged bleeding like that is never "normal," but it would not be uncommon in untreated ulcerative proctitis. You can easily become quite anemic this way, and definitely not a good thing for yourself or the fetus.

I would think the best option would be to use hydrocortisone and/or mesalamine enemas or suppositories (depending on how much rectum is left in place). This would avoid systemic steroids and might just work. If the bleeding is minimal and your blood counts are stable, then it could be safe to leave it alone.

I had rectal bleeding throughout both of my pregnancies, which were both before my colectomy and j-pouch. I took 5-ASA drugs (Azulfidine) with fair results. But, bottom line, my blood counts were good. My GI wanted to avoid prednisone if possible, as it could cause electrolyte and glucose disturbances, which could complicate the pregnancy.

Hope this helps give you some insight. You may want to consult your OB/GYN for advice too.

Jan Smiler
Hi jan, again thanks for your reply, that makes so much sense now my iron level has gone down to just 7 and they want to do iron infusions at the moment because they are so concerned, I will talk to my consultant about this thanks for the advice, all the docs I have seems havnt been able to make the link!

I've tried enemas in the past and the bleeding had never stopped :/ could this mean I can't have j pouch surgery?
No, it does not mean you cannot have j-pouch surgery. Most of us failed to respond to meds to get us to j-pouch surgery.

But right now, you need to focus on your health and how that affects your pregnancy, even if it means taking drugs you'd rather not have. Your docs have to balance the risks of the drugs against the risks of letting this go untreated.

Just because enemas did not work before, it does not mean they won't work now, especially if you have not tried them since colectomy and ileostomy.

Jan Smiler
That's reassuring to hear, I really hope I can have the j pouch surgery one day, I'll bring the bleeding up with my consultant I see him next week hopefully something will work, I tried steriod enemas after ileostony surgery though and they didn't work for me the bleeding continued, maybe trying them for longer might help?

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