Crohn's and colostomy bags

[mharvey90]

So, I had an appt. with a surgeon a couple of weeks ago discussing my Crohn's. And I've stopped responding to medication and I will be getting surgery in May (have to wait til my classes end.) And my dad and I asked about the chances of ending up with a colostomy bag after surgery, and the surgeon gave us this crazy look and he said "there's no chance that you'll have one at all. It definitely won't happen." This was really strange to me, because when I got my ressection in 2002 when I was 12 years old, the doctor told me parents that there was a pretty decent chance that I may end up with at least a temporary colostomy bag. Luckily I didn't.

So I'm just wondering how many of you with Crohn's...not colitis....have or have had colostomy bags? Or know someone who does? Or have anything to say on colostomy bags and Crohn's...because I would at least think that the surgeon would at least kind of have to say that there's a small chance of one...to cover his butt haha. It makes me feel a lot better that he said that, but it was just a little confusing to me. I thought that risk is always involved.

Btw, I have about an 18cm stricture in my terminal ileum area right now. I had about 15cm of my terminal ileum removed in 2002 as well.

 

[Jennjenn]

I am also surprised that they would not say that there is a small chance of even a temporary one. With any surgery comes risks and possible complications. I know all too well, and I am sorry I am not trying to sound like a negative person. Fortunatley it all worked out well in the end for me even though I still have a lot of difficulties.

 

[imisspopcorn]

I'm surprised too....They always have to outline all the risks etc to cover their butts so to speak....I just want to say that I'm pulling for you and I hope everything goes as planned. It is good that the surgeon is so optimistic.

 

[Pirate]

My first GI had the same attitude towards this. He did everything possible to avoid it and it worked for 22 yrs until he retired. My new GI is great, but I think she might be leaning a little more to giving me one if it gets super bad. My last stricture was only 9 cm, so she suggested Remicade. So far so good.

 

[Nyx]

I have a stoma, his name is Oscar the Brain (he looks like a wee brain!). My surgery was an emergency so I just kinda woke up with one! Turned out to be the best thing that's ever happened to me. I'm currently not on any Crohn's meds, I feel fantastic, and it was really a small lifestyle change, once I got over the initial shock of it. I have to admit that had I been given the choice to have one or not, I wouldn't of had the surgery (I was relatively naive about the whole thing, and of course there's the stigma attached to it to consider). But, now that it's done, it's really good for me and my health. Mine's also permanent because my disease is all in the lower part of my GI tract so I can't have a resection done.

If you have any questions about it specifically, feel free to contact me Good luck!

 

[Lele]

Hello Cindy! My name is Leanna I just came across your forum and was wondering if I could ask you a few questions . I've had Crohn's disease for 20 years now. ( diagnosed at 3 , now 23) and recently started developing severe rectal abscesses . I was recently hospitalized and the doctors have decided that it is time to give me temporary colostomy bag to let my colon heal . They're not going to remove anything but I'm extremely terrified and was wondering if you could tell me about your experience .

 

[shamrock15]

A lot of crohn's surgeries don't involve ostomies. I have had 6 surgeries to date, the last two were for a temporary ostomy and then its removal. The context - I was scheduled for a resection after about a year on constant mid-grade dose of pred, frequently higher, attempts with dilatations. The resection went as planned, but within about hours the sutures pulled through the resected area because of how weak the constant pred had made the tissue.

Like Nyx, it was actually a welcome change once the reality of it had settled in. Even though I am now 8 years away from its removal, there are still some things about it that were really beneficial. At some point I will probably end up with the bag again as I have a persistent rectal stricture. Not bad enough to really worry about right now, but it needs dilatation every couple years. Now though, I am not really too worried about a bag if I need it.