Severe Crohn's Disease: Possible ileostomy in future

Hi Everyone! (sorry for the novel in advance...)

Just want to get my story out there. I have severe Crohn's that I was diagnosed with at 12 years old (am now 26, so had it for 14 years now). First showed up in the typical spot for Crohn's; in my ileum. A couple of torturous years and a few medication attempts later, I had a foot of my small intestine removed. I was able to keep symptoms minimal for about 8 years after with steady medication (Humira) and was able to finish high school with a relativley "normal" life. Now it has showed back up with a vengeance and I have been struggling with a severe flare for the last 2 years or so. According to my GI and Colon and Rectal surgeon I now have Colo-Rectal, Perianal Crohn's. Stricturing/scar tissue in the anus that I have to get digitally dilated every 6 months so I can poop ok (which is very painful). So basically from the descending colon all the way out is inflamed. The last 2 years have been hell dealing with this as an adult. Switched from my double dose of Humira that I'd been on during my better time, to trying a dosage study for Cimzia. That was no fun at all. Now I'm on a double dose of Cimzia (which was a pain getting approved thru insurance) that is keeping me barely above water. I make urgent bathroom trips every 1 to 2 hours. There have been a few times where I haven't quite made it all the way to the bathroom, which can be very frustrating. I'm in a considerable amount of pain right before, during, and after a bowel movement. Have frequent fevers, fatigue, vitamin deficiencies, and all other variation of annoying problems that come with inflammation and reactions to medications that I'm sure a lot of you have been familiar with. My GI is talking about trying another study, different medication. I'm trying to keep down a full time job that I need to pay the bills. I'm really getting sick of living this way. My entire life revolves around whether there's a restroom where we're going and how accessible it is. I'm afraid to move up at work or finish school or really live my life because of this. Plus my poor husband has to put up with me and my health issues (he hates that there is nothing he can do for me). My Colon and Rectal surgeon has vaguely mention having to do an ileostomy (or temp ileostomy) if meds are not successful. Upon hearing this the first time at the beginning of my flare, I was really upset. But now after feeling like this and the struggle it has brought, it would be so worth feeling better. Vanity aside. This is something I see coming up in my near future (the next year or two). Reading about your experiences has been very helpful for me emotionally: Seeing other people who have gone through the same type of thing. I plan to talk to my surgeon and GI after this next colonoscopy to see exactly what my surgical options are so I can fully research everything and decide whether I want to attempt further meds or have a procedure done. With Crohn's I know I will never be totally out of the woods, but if this could give me another 8 or so years of liveable, enjoyable life it would totally be worth it to me. Who has experienced an ileostomy w Crohn's and how has it been? How was it adjusting to life with it? How was your self image/sex life affected? Anyone had a flare during a period after their ileostomy and was it hard to deal with?

Marissa

Welcome. I am sorry for all you are going through. I have not had that particular procedure yet but there is a surgery section here and I think thru might be helpful there. Wishing you the best.

ronroush7 said:

Welcome. I am sorry for all you are going through. I have not had that particular procedure yet but there is a surgery section here and I think thru might be helpful there. Wishing you the best.

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Thanks for the welcome! Maybe I'll check that section out...

I had a temporary ileostomy for about 11weeks after a resection surgery. I felt healthy when I had the ileostomy. Was able to eat vegetables(Brussels sprouts!) and ethnic food(Indian!) that I hadn't been able to in years. I ran, hiked, rock climbed and had lots of energy. It was an adjustment getting used to the bag. I had leaks, clothing options narrowed and it was something I was almost constantly aware of. However, with how miserable I was before, I really wasn't living life. The bag was high maintenance but it gave me health and a life back. I've had the reversal done and am back to be limited on what I can eat.

Cool. Most people seem to say their life was overall greatly improved after their ostomy. I think my surgeon may be interested in doing a temporary ileostomy to let inflammation heal. I'd be scared things would just flare right back up once I was reconnected. Was the transition smooth once reconnected or was it rough readjusting again?

It was rough readjusting. My sphincter muscle was not used for 10weeks so it was rough going for about a week. Not just with urgency but actual rectal pain/irritation. The longer you are disconnected the harder the recovery after reversal. My colo-rectal surgeon said those that have it the roughest are those who have been disconnected for 6months +. He also told me of a patient who had the reversal after about 3 months but the inflammation came raging back and they had to do a full colectomy and permanent ileostomy. I don't know if she was on any medication like Humira or Remicade. I feel i am still adjusting somewhat.

Eridon2002 said:

It was rough readjusting. My sphincter muscle was not used for 10weeks so it was rough going for about a week. Not just with urgency but actual rectal pain/irritation. The longer you are disconnected the harder the recovery after reversal. My colo-rectal surgeon said those that have it the roughest are those who have been disconnected for 6months +. He also told me of a patient who had the reversal after about 3 months but the inflammation came raging back and they had to do a full colectomy and permanent ileostomy. I don't know if she was on any medication like Humira or Remicade. I feel i am still adjusting somewhat.

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I hope that things stay good for you. Yeah I feel I would be like the second one you mentioned...flaring right back up after recconnection. Not to mention I already have a lot of problems in the anal/rectal area. Just end up with a permanent ileostomy. Seems like a decent amount of people opt to just keep it instead of the trouble of reattaching. But you never know...

mnharcrow said:

I hope that things stay good for you. Yeah I feel I would be like the second one you mentioned...flaring right back up after recconnection. Not to mention I already have a lot of problems in the anal/rectal area. Just end up with a permanent ileostomy. Seems like a decent amount of people opt to just keep it instead of the trouble of reattaching. But you never know...

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Hi mnharcrow

I think you should definitely get an ileostomy. I am kind of similar to you in that I originally had crohns in my terminally ileum and then about four years ago it spread to my colon and perianal area where it had never been before. I also got to the point where meds just done nothing for me and I was on the maximum of everything I could be. Whilst having the ileostomy was meant to be temporary because my large intestine is still there I have chosen to keep it. I had no quality of life before and was constantly sick even though I was very strict with my diet. I hope that in ten fifteen years time crohns medications will improve or because I have had the bag for so long that my crohns will not return or be a lot milder. At the minute I take no crohns meds just imodium to slow things down because so much of my intestine has been removed.

Wow I can't even imagine only being on Immodiom. I've been on Crohn's meds the entire time I've had it, even in "remission" time. Yeah that's where I see this going soon, is an ileostomy. The severe flares I've had, meds have no affect or just an "eh, I'm not dying" affect (how the cimzia is now). I've never responded really well to meds during active Crohn's. I think I'm trying Entyvio next (have you ever tried it?). But I imagine I'm gonna have to get over my 26 yr old female vanity so that I can have quality of life. And I'm sure my husband will be supportive as always. Was it easy to adjust to the bag, and how long did it take before you were comfortable with it?

mnharcrow said:

Wow I can't even imagine only being on Immodiom. I've been on Crohn's meds the entire time I've had it, even in "remission" time. Yeah that's where I see this going soon, is an ileostomy. The severe flares I've had, meds have no affect or just an "eh, I'm not dying" affect (how the cimzia is now). I've never responded really well to meds during active Crohn's. I think I'm trying Entyvio next (have you ever tried it?). But I imagine I'm gonna have to get over my 26 yr old female vanity so that I can have quality of life. And I'm sure my husband will be supportive as always. Was it easy to adjust to the bag, and how long did it take before you were comfortable with it?

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I originally had a temporary ileostomy during my pregnancy about four years ago. Like now I only took imodium and no crohns meds and felt the best I ever had. At the time I had spoken to my consultant about keeping the bag as I felt great and didnt have to take any horrible medications. At 36 weeks pregnant the baby caused my stoma to prolapse and blood flow to my stoma was compromised so the baby was sectioned another part of my small intestine removed and the stoma reversed.I regret that it was reversed but all I cared about was that my son was healthy and he is three now so I am very lucky. I only have this stoma a year and I have had my problems with leakage and prolapse but none of that is anything compared to what I went through when I was sick. I only have 160cm left of small bowel so my output would be high compared to others with ileostomys. I also have had quite a few surgeries so thats why my stoma prolapses. I dont know how many surgeries you have had or if you have a lot more small bowel left than I do so you could have a lot less problems than me. I do find it hard sometimes with clothes but thats more the prolapse. I am 33 now and was 29 the first time I had an ostomy. My disease started when I was 10 and progressively got worse over time the bag is the only thing that has ever worked for me. Both surgeries when I had the ileostomy placed the areas of crohns were removed from my small intestine.
Do you know how much small bowel you have?
Do you know how much of your small intestine is diseased?

Nosebag said:

I originally had a temporary ileostomy during my pregnancy about four years ago. Like now I only took imodium and no crohns meds and felt the best I ever had. At the time I had spoken to my consultant about keeping the bag as I felt great and didnt have to take any horrible medications. At 36 weeks pregnant the baby caused my stoma to prolapse and blood flow to my stoma was compromised so the baby was sectioned another part of my small intestine removed and the stoma reversed.I regret that it was reversed but all I cared about was that my son was healthy and he is three now so I am very lucky. I only have this stoma a year and I have had my problems with leakage and prolapse but none of that is anything compared to what I went through when I was sick. I only have 160cm left of small bowel so my output would be high compared to others with ileostomys. I also have had quite a few surgeries so thats why my stoma prolapses. I dont know how many surgeries you have had or if you have a lot more small bowel left than I do so you could have a lot less problems than me. I do find it hard sometimes with clothes but thats more the prolapse. I am 33 now and was 29 the first time I had an ostomy. My disease started when I was 10 and progressively got worse over time the bag is the only thing that has ever worked for me. Both surgeries when I had the ileostomy placed the areas of crohns were removed from my small intestine.
Do you know how much small bowel you have?
Do you know how much of your small intestine is diseased?

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I had a resection at 14yrs old (1 foot of small intestine removed), and scar tissue obstruction (caused by 1st surgery) removed at 15 yrs. And rectal/anal scar tissue removal a little over a year ago. So I'm only missing about a foot of small intestine at this point. According to my last colonoscopy I have no active Crohn's in the small intestine. It's all from the descending colon down. I think I could do very well considering my first resection seemed to tide me over for 8 or so years before my next severe flare. I've never been totally symtpom free but I was doing well enough to live a mostly normal life through high school and a couple of college years. But when it flares, it doesn't play around lol. This is only my second flare of I'm sure much more to come. It has been much harder to deal with as an adult than it was as a child. Given me a new appreciation for my parents and what they had to deal with, and that they were so supportive/positive/never made me feel bad for putting them through that (though I know it's not my fault). It's nice to hear from someone who was diagnosed at close to the same age I was. I know you must have gone through a lot of pain and struggle to have that much of your small intestine removed. I'm glad you're sharing all this with me. Nice to talk to someone I can somewhat relate to. .

I've had crohns for about 10 years. 4 years ago it got really bad and I had my large bowel removed and an ileostomy. I didn't want to, I was told I had no choice as I didn't respond to the prednisone, or the infliximab, and my then GI doc didn't know of other possible causes/treatments (meaning MAP, which it turns out I have, although according to Prof Borody there can be other infectious causes of crohns inc Entamoeba histolytica, Mycobacterium tuberculosis, Mycobacterium bovis, Strongyloides stercoralis. Borody's clinic test for all of these).

I hated it. It sometimes leaked, and felt really un-feminine (I'm not saying it is, it is just how I felt). I got a reversal fortunately, but of course, the crohns never really went away. Fast forward 4 years and I now have a small fistula and a perianal abscess (which I think is healing now). That led to me getting MAP testing (my GI is a non-believer I think. I have to face them on Thur to try and convince them to prescribe anti-map abx).

Anyway, as I said I tested positive. I think it might be worth getting tested for. If you do have an infectious cause, getting an ileostomy isn't going to solve things long term. Crohns can affect other organs, and I still felt huge fatigue when I had the ileostomy. It also made me complacent with diet and things, which can really make things worse (certainly in the case of MAP, sugar, grains, even fructose in significant amounts, I have found all makes things worse. I have found Wahls Paleo diet really helpful in terms of the number of bowel motions, though I am also taking herbs to try and address MAP).

Of course, you may not have MAP, or one of these other things. But it may be worthwhile exploring if surgery is on the horizon and other things have not provided relief/a solution.