Is a stoma right for me?

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I was diagnosed with crohn's in august 2013 and life hasn't been the greatest. I keep struggling with infections, that feeling of needing the restroom and yet nothing happens. I feel extremely tired all the time. The medications I'm on are making me second guess their benefits. Prednisone destroyed me. 6-mp made me go bald almost. They had to extend my remicade treatment to 3 hours and afterwards I feel pretty miserable. The insomnia from the prednisone ruined me too. Im scared to eat certian foods because i dont want to flare and the joint pain gets pretty bad. I know a stoma won't cure crohns but if it makes a difference..... sorry if I'm rambling.
 
No one can answer that question for you, but most will say that you should really try all other alternatives before you consider surgery, as this surgery is major and does take a long time to recover from. It might give you your life back, and it might not. For me, it certainly made my life better, but I was in the hospital for 7 weeks, and then it took 3 months after that to get back to "normal". The stoma's been a lifesaver for me, but had I been given the choice I probably still would have tried all the meds first (I perforated my colon so had to have the surgery).

Sorry this hasn't been more helpful! I hope you get some relief soon.
 
Hi there,

Sorry to hear you are having a crap time.
Having a stoma should be a last ditch resort to making you feel better or to keep you alive, I'm not sure there are many docs that would agree to giving one unless they are sure all other meds have failed.
On the flip side though, I have a stoma after emergency surgery last year. I was very ill for years before that. I would nt recommend having one as it takes a fair bit of getting your head around although I can say I have never felt so well in myself. Yes I still suffer from crohns and I guess I always will but for once in the last twenty years I actually feel like I'm living life instead of planning my days around toilet visits and stomach cramps that would kill a donkey.
I can't give you a right or wrong answer, I suggest you speak to your doc regarding your current health, long term prognosis and your options related to that.
Keep us posted, there are a fair few ostomites on this forum and many have loads more experience and knowledge than I do. Just ask away!
Good luck
 
Thank you :) My first GI doctor found 12 ulcers in my ileum and scattered around my colon. He thought I had ulcerative colitis. (Worst doctor ever) he was retiring so he didn't care. I found my new GI doctor down in Denver and he is 10 times better. He knew right away it was crohns. I do see him tomorrow with my family. Unfortunately this disease slapped me across the face and said surprise!
 
I was diagnosed with ulcerative colitis. After all meds failed, my GI recommended a stoma. For me with UC, it meant the end of my flares and a so-called "cure." With Crohn's, however, it isn't as clear cut as that. I can only tell you how wonderful having a stoma has been for me, but again, it is a very different experience for each person.. some good and some bad.
 
Whether a stoma will help depends very much on where your disease is, and keep it in mind that Crohn's can later start to affect other areas of your digestive tract, so even if a stoma now allows all the diseased areas to be removed, you could later have the disease come back in another area, meaning you'd have a stoma and have to take meds as well. It makes a big difference when it's Crohn's rather than UC here (as far as I know - hopefully someone will correct me if I've got this wrong) as UC is limited to the colon.

I don't think a stoma should be a last resort though. I love my ileostomy and wish I'd had it earlier, but I held off (even though my surgeon had said he would do it earlier) because I thought I was supposed to exhaust all other options first. My surgeon thought that too - he said he would do it earlier, but he thought it sensible to wait and I followed his lead. I've had other doctors who thoroughly disapproved of me getting a stoma (it wasn't necessary - it was to improve my quality of life but I wouldn't have died without it or anything) and I've had doctors pity me for having a stoma, which I hate. I wanted pity for the bowel problems which I'd had previously, which the stoma has eliminated, not for having a stoma.

I'm not against trying meds though. And I think it's worth trying to find the right meds as long as that's a safer or otherwise preferable choice than surgery. For example, I couldn't stand the insomnia caused by prednisone, and I got to a point when I didn't think I could stand being on pred much longer, but my GP prescribed me Amitriptyline which cured my insomnia completely. I did have to go through a few different meds that didn't help before I found the one that worked for me, but my point is that it's worth looking around for solutions to the bad effects meds cause you and consulting with doctors about them, and that may be something you want to try before considering a stoma if you haven't already done so.

The feeling of needing the loo but not be able to go was a really big problem for me, and the ileostomy has solved that for me, along with many other problems. What other symptoms are particularly bad for you? A stoma can help with certain symptoms more than others, and since a stoma can bring problems of its own (bags leaking, having to empty the bag very frequently, etc.) it's important to know what specifically you hope will improve and what might become a problem if you got a stoma. For example, your problem with tiredness may well continue with a stoma, depending on its cause. Having a stoma may mean you can't eat certain foods.

So I probably differ from the normal view of surgery and stomas, which tends to view them as the last resort - including surgery that does not result in a stoma. Since my stoma has been much more successful than perhaps the average ileostomy, my view here may well be biased by my good experiences. But even before I got the ileostomy, I was very sure it was what I wanted, and I knew having a bag wouldn't hurt my self esteem which it (understandably) does for many - it's a big adjustment for most - so I was lucky to get my ileostomy knowing I was positive about it.

I think when someone is as certain as I was, a stoma shouldn't necessarily be the last resort. But if you have more uncertainties about it, it's not so clear-cut, and it makes sense to try less drastic measures first.

Talk to a surgeon, talk to a stoma nurse. I can definitely say that I think stomas can be incredibly beneficial, but obviously that is not always the case by any means - you have to work out what will make you happiest and think about the specifics of your situation and what your choices are.
 
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