Any other ileostomates here?

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Regular Member

Date Joined Feb 2009
Total Posts : 39
   Posted 11/23/2009 8:01 PM (GMT -7)   
I'm sure you're out there, I just wanted to ask a few questions. I had a subtotal colectomy with an ileostomy this last July due to my battle with Crohn's and was originally hoping to have a reversal in January. After about 2 months I started to notice some canker-sore looking things appearing on my stoma as well as continued bleeding from my remaining sigmoid/rectum. I went in for an ileoscopy after that and my doc found some ulcers and inflammation in my ileum and determined that the disease had spread to my remaining intestine. Due to this discovery my reversal is postponed indefinitely, which I'm fine with because I really just want to feel good and be able to live my life. I've felt great since the surgery, been gaining weight and I've been pretty much symptom free aside from the continued bleeding and very minor abdominal pain.

So anyway, my questions: What meds, if any, are you taking for Crohn's? I'm going to be starting Cimzia tomorrow, does that seem rather extreme for someone without major symptoms? Is my situation unusual? It seems like I don't hear of many ostomates forced to resume medication after their surgery. And finally, is there any hope in a situation like this? I'm afraid that I'll start to deteriorate again any day. Would love to hear some success stories if anyone has one.

Thanks in advance, and sorry for the long post!

Veteran Member

Date Joined Dec 2005
Total Posts : 1768
   Posted 11/23/2009 8:27 PM (GMT -7)   
I would say your symptoms are major compared to mine, and I'm on Humira. Of course CD is different, and some of us are on meds for different reasons (I'm on Humira because I was getting obstructions at least twice a year for numerous years).

I think there is an ostomy forum, and they may be able to answer your questions better than I can, but I thought I'd give you my 2 cents!

I hope things turn around, your doctors control the active disease, and you become more symptom free!

31 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05, Bilateral pulmonary emboli 10/09
Currently on Humira, Omeprazole, Effexor, Seroquel, Calcium, Vit D, sublingual B12, Coumadin

Regular Member

Date Joined Apr 2006
Total Posts : 164
   Posted 11/23/2009 9:35 PM (GMT -7)   
I will be getting surgery soon and I found the ostomy forum helpful. You should check it out.

Veteran Member

Date Joined Mar 2009
Total Posts : 1118
   Posted 11/24/2009 9:36 AM (GMT -7)   
Hi iam taking Pentasa at the moment was on remicade but more for help with healing fistula had to come off that due to reaction the doc wasn't going to give me anything for crohns i had demand something and was given asacol first but made me ill so now on pentasa 500mg 3 times a day.Bev x P.S do pop over to the ostomy forum loads of info on there.
Diagnosed with crohn's at 13 now 42
resection, right hemi 1993 In remmision from 93 till last sept with no meds or docs
2 resections small bowel  and fistula jan 09 and given temp stoma.  reversal 1st week of Jan. Meds:Pentasa 500mg 3x day,  B12 shots, every 3 months, iron syrup,loperimide,folic acid,  citalopram 60mg (for Anxiety.)

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