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Crohn's Disease Forum » Surgery » Stoma Subforum » Stoma more tedious than runners?


09-22-2010, 10:25 PM   #1
Crohnadian
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Stoma more tedious than runners?

I'm supposed to be going for an ileostomy this fall/winter but I was wondering.. I hear the bag has to be changed/emptied 6-8 times a day (is this accurate?), and the docs want to leave my rectum and anus inside in case I can get a resection down the road (so this will continue to produce mucus, right?).. Isn't all this more tedious than running to the bathroom 5-10 times a day? I mean, the stoma, the wrapping, the cleaning, the leaking, lol! I'm prepared for it, and I hear such great things about the procedure, but I'm still trying to figure it out :-/
One thing's for sure.. a stoma is better than daily pains
09-23-2010, 12:16 AM   #2
Jeff D.
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I can tell you that it in my experience having a stoma is much better than running to the bathroom because for one, I don't have to. After a while you learn how to quickly change the flange. It now takes me about 5-10 minutes to change the flange and another 2-5 minutes of holding the flange so it sticks better. It takes me about 5-7 minutes per bathroom visit which it used to take me 10-20. I used to go between 5-20 times a day and now I go 3-4 times a day. My doctor said if I'm emptying my bag 6-10 times a day I need to take some Imodium. Good luck and keep us updated
09-23-2010, 10:41 AM   #3
CDDad
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Well said Jeff. And I agree that not having the urgency is wonderful. I go on my terms now when I am ready (within reason if the bag is ready to overflow )

I empty 6-7 times a day so maybe I'll look into trying some imodium. But it really has not been a bother. I empty twice at work usually and it is much quicker and eaiser than the old way.
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3 Surgeries - Hemicolectomy '08, Sm Bowel Resection '09, Proctocolectomy '10. Lets hope I'm done now!
On Protonix and Humira.
09-23-2010, 10:52 AM   #4
kello82
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agreed on what they all said. at first its all a bit annoying, but after a bit getting to know your own ostomy, you can pretty much predict everything.
even now i can almost choose what to wear based on it....if i know my stoma wont be active for a while then i can wear a regular tank top, where as if i will be out for a long time all day or if my stoma is pooing up a storm then i wear a flowy top, you know?
its nice to be able to empty before you go out and know that you wont have to go to the bathroom for a while. how often i emptry depends on my day really. if im just home then i let the pouch get as full as it wants to or just empty it when i start getting annoyed by it. but if im out then i prob will empty more often.

as far as the mucous.....i have a lot of mucous issues and unfortunately urgency with it. i get the same kind of cramps and urge to go to the bathroom just like i did before the ostomy, only thing is that its less often and not poo lol.
sometimes its just the feelin g like i have to go and nothing really comes out, and sometimes its a full on flood if i dont get to a bathroom asap. so, not gonna lie, that is an issue for me. i still have my entire colon though, so i would think if you only were left with a rectal stump then you would not have near as much mucous drainage.
though its annoying, being unable to control mucous flow is infinently better than being unable to control poo. lol tis true.
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09-23-2010, 11:32 AM   #5
Jer's Girl
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What everyone else said is true for me too, but for me it came down to pain. I have zero Crohns pain with the stoma. Also, I can eat whatever I want (except corn).
09-23-2010, 12:35 PM   #6
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i think the benefits outweigh the negatives of having a stoma. none of us would volunteer to have a little red blob attached to our stomachs unless we really needed it - but for those of us that do, whether it's temporary or permanent, we soon become grateful to it.

in my case, my stoma surgery saved my life. literally. and all the incidental inconveniences, like planning what to wear on a night out where i'll be having a meal, or making sure i'm near a loo approx half an hour after eating - they are so insignificant when compared to the pain and debilitation of aggressive and active Crohn's Disease.

i don't think i visit the loo that many more times than the rest of my family - in fact i think the kids go exploring toilets more often than i do! lol
09-23-2010, 01:27 PM   #7
Jeff D.
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Oh and I don't want to make it sound like everything has been easy peasy. The first six weeks after my surgery was hell. I honestly didn't think I would make it. The thing is that after that six week period I was fine. I now feel a million times better and I've put on about 14-16 pounds since after that six week period. I say that because I actually lost weight during that time instead of gaining weight. I weigh 125 and my 90% goal is 139 with my full goal being between 145 and 155. Take care. Remember always have hope that the future will be better.
09-23-2010, 11:05 PM   #8
Nyx
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I've never had a problem with my stoma at all. I'm almost pretty much back to what normal people do in regards to bathroom visits and poop consistency...lol (I have a colostomy rather than an ileostomy, so my poops are very solid). I eat whatever I want, and I have a little mucous output from my rectum (which hasn't been a problem, since I just let it go when I go pee, or change my bag). Probably tmi, but that's what you get on this forum!! lol

I'd never have been able to start college without my Oscar. He's been a Godsend to me for sure.
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Crohn's Diagnosis: May 2006
Current meds: none
Surgeries: Colostomy, December 2009

"Never trust a fart." Jack Nicholson, The Bucket List

Oscar is awesome! Loving my life with my stoma (with a hint of poo)!!

09-24-2010, 04:52 PM   #9
acg101
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for me the benefits outweigh the negatives of having a stoma. I used to go 5-25 times and dealing with pain and the meds.
At first, having the stoma was challenging, but once I got used to it, there are no issues.
I can do anything, eat everything, run, exercise, swim, drink wine and intimacy also is not an issue.
The people above supported me all the way throughout my stoma journey.
I am the happiest men alive, I smile and work without worry about would I make it to the bathroom.
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-Best wishes - Dan

1. Diagnosed with Crohn's UC 1995
2. Flagyl/Cipro Imuran in 80%remission 1997 2005
3. Used 5mp, asacol, 6mp, remicade, imuran, Cimzia, entocourt, Flagyl/Cipro and enemas/suppositories until 2010 with periodic relief.
4. July 9th 2010 total ProctoCollectomy surgery! Free at Last!
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