Any other ileostomates here with Crohn's?

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!

Hi jtaylor,

I have been a crohns sufferer for 21 years now and has resulted in permanent ileostomy my surgeon also removed my rectum in July of this year. I had my entire colon removed as well and was never an option for a reversal for me. Chat to your surgeon in detail before you have any reversal surgery as I have been told that it is rarely sucessful to have reversal surgery when you have crohns. I am back on meds but not for the crohns, once I went off all crohns meds my joints became increasingly sore to the point I could barely grip with my hands or walk without severe pain so now I have been diagnosed with RA and on methotrexate injections for that and morphine patches, I also now suffer with iritis so I have eye drops to help that or at least until the methotrexate starts working. Hope I was of some help to you and any other questions please feel free to ask away. Take care

JTaylor,

I'm very sorry to hear that the Crohn's has returned. My gastroenterologist told me that if the disease ever showed up in my small intestine, she would put me on something to try to get it into remission, like Humira. I only had it in my large intestine and rectum, and those were removed 3 years ago. So far, it has not shown up in my small intestine.

I hope the Cimzia works well for you.

Take care,
Cecilia

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Dx'd Crohn's in '99 at age 28. Proctocolectomy and ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.

Hi Iam currently taking Pentasa 500mg 3x day i was offered Humira but never took up the offer im saving that one as my last resort!!! Soon after my op in jan i was put on Remicade to help heal a fistula it was great but sadly i got a reaction on the 2nd dose really though that would be my wonder drug.im not really happy on pentasa though as its giving me joint pain but ill speak to my GI and get it changed Bevx

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jtaylor-

I also have Crohn's. I had a total proctocolectomy, so reversal is not an option for me. Before surgery, my Crohn's was just in my colon, so my surgeon was pretty optimistic that getting an ileostomy may get rid of my crohn's for good, or at least a number of years.

Unfortunately, my crohn's came back within a year, in my mouth and end of my small intestine. I am now on Humira once every 2 weeks (it is working, but not well enough to get me into remission, so my dr. is trying to get my insurance to approve Humira every week. I think once that goes through, I will feel better.)

I also just started Entocort, which is a steroid that does not have any of the side effects that prednisone does, but I am not sure if it is working or not as I just started it 2 days ago. When I paid for my prescription of it--a month's worth of Entocort--the lady said "that will be $50," and I was surprised because I have great prescription coverage and usually only pay like $5-$10 for my meds. I said "Oh, is it not covered by my plan?" and she said "Oh, yes it is covered--if it wasn't it would cost you $1,000!" I blurted out "Oh My God!" because I couldn't believe it...when I looked at the price it was indeed $940...wow. I mean, what is this gold in a bottle??

Anyway, sorry for the digression, just had to share that...my doc said that if Humira stops working that Cimzia is my next option. So, I don't think it is strange that you are on it---it is much like Humira and the other biological drugs.

Good luck. :) Hang in there.

-E

I was diagnosed in 1989 and had a proctocolectomy in 2008...I am not on any drugs but know that if I notice any symptoms I will be on one immediately. The theory is that if you've gone 10 years without small intestine involvement you should be okay, and for the last 10 years my problems have been colon/rectum with fistulizing Crohn's (originally in small intestine, tho).

I'd follow recommendations of your GI, since ulcers on your stoma are a major sign of the disease. You feel as good as you do because of your ostomy, so don't let that fool you:( If you were connected, you'd probably be running to the bathroom a lot, too:(

This just shows us how different this disease can be from one person to another...sorry to hear you are having problems, keep us posted!

I've had Crohn's since 1970 and was back and forth on meds until 1981 when I had multiple surgeries ultimately resulting in a sub-total colectomy and temporary loop ileostomy. Since then I have been on no medication for the Crohn's. In 2000 I had a total proctocolectomy and had the loop ileostomy converted to a end ileostomy because I had gotten to the point where my GI could no longer scope all of what was left of my colon and a BE revealed some filling defects which were characteristic of colon cancer. Due to the growing risk of developing colon cancer with no easy way of detecting it, my GI recommended having the rest of my colon removed. The main discussion I had with the surgeon was whether or not to remove my rectum. His advice was to remove it and eliminate any possibility of colorectal cancer showing up in the future. I remember asking "Won't that make it more difficult to screen for prostate cancer down the road?" His response (remember this is a GI surgeon) was "Nah, they have PSA tests for that. Besides, you're young (I was 44 at the time), you don't have to worry about that for 20 years." So I had the surgery (no sign of colon cancer, by the way) and remained medication free. Two years later my PSA started climbing and after several years of CT-guided biopsies got a positive diagnosis of prostate cancer. I had a radical prostatectomy two years ago and have remained cancer free thus far. I'm on blood pressure medication and cholesterol medication but still not taking any meds for the Crohn's. Your mileage may vary.

Hi all! I'm posting this for my husband, Tony, 'cause he's at work. Tony has had Crohns since '96 and after meds and pred. failed had a permanent ileostomy (reversal not possible). Still has his rectum, however, his GI team want to remove it in the not so distant future to elim. cancer risk. I'm glad I read this thread b/c we never thought of the problems detecting prostate cancer later on.  He was symptom free for exactly 9 years and then developed a blockage from strictures n had 2 have surgery in 2001. Developed HUGE abdominal abcess that turned out 2 be fistula in 2004.