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How does an ostomy work with frequent bowel movements?

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Posted 4/30/2005 1:49 PM (GMT 0)

Hello.  I've been suffering from IBS for years.  I've tried every IBS medication out there, several anti-depressants, lots of mucking with my diet, naturopathy, homeopathy, hydrotherapy and accupunture.  I've had enough of this and am at serious risk of becoming unemployed.

My main symptom is seeming to spend half my life on the toilet.  There's lots of cramps to go along with that, but mainly I can't get to work regularly because I frequently can't get out of the bathroom for long enough.

My question is this - could a colostomy or possibly a colectomy (or both) help me?  I would think that a colostomy would allow me to function again and I'd just have to run off to change bags periodically, but a doctor I was talking to told me I might spend just as much time in the bathroom with the little bags.  Is this right?  Does anyone else out there have similar experiences that would suggest that an ostomy would help or would not help me?  Any help would be appreciated.  Thanks!

Posted 4/30/2005 8:28 PM (GMT 0)
Hi Rob!
Im so sorry to hear about your situation. But it begs the question, are you ABSOLUTELY sure its IBS? I was told i had IBS for 10 years, from when i was 12, and was on the toilet all the time, had dropped tons of weight, etc. Only after 10 years and i went to a new GI and had another colonoscopy did they tell me i had Ulcerative colitis. I went back to my old GI and asked what happened and he denied up and down that the old colonoscopy had shown that. I dug through my records and found the results, and the biopsies DID show microscopic colitis. Have you had a colonoscopy? Are you bleeding? Have you lost any weight? Your life should NOT be spent like this if you have IBS...i suspect something more than that. I hope you find something to help you, but no surgeon would take out your colon with IBS as far as i can tell...i have an ileostomy now, had a j-pouch constructed and am awaiting re-connection. But to qualify i HAD to be scoped and biopsied for the 4th time, just to make darn sure it was UC...they wouldnt do it for anything else. I recommend in the very least getting a second opinion...even if you love your GI, its your body and you really want to make sure its the right diagnosis. Good Luck, let me know if you had been scoped, etc. Maybe there is another option through another GI...
`Eileen
Posted 4/30/2005 10:42 PM (GMT 0)

Hi Eileen.  Thanks for your response!

I have had a couple of colonoscopies since this began, from two different GIs and they found nothing.  I've also had an endoscopy, barium swallow and tons of bloodwork.  All came up negative, so they diagnosed it as IBS.

I expect you're right about the likelihood of me talking anyone into operating on me because of IBS, but, quite frankly, I'd be as happy if they'd do an ileostomy and were done with it.  I just talked to a friend of my parents who had an ileostomy 24 years ago and he has no complaints; his life is much better than when he was suffering from what turned out to be ulcerative colitis. 

I started thinking about colostomies last summer, after my mother told me about the above friend.  I actually got an appointment with a surgeon at that time and talked it over.  At that time he said that if my quality of life was really bad and if my GI said it was okay, he'd do it.  Flash forward to a week and a half ago when I finally decided I'd had enough and wanted to do it.  My GI was reluctant, but agreed, though he said it "may not solve" my problem.  This past week, I went to see the surgeon again, who insisted on talking to the GI.  After he did, he came in and told me the GI had said I shouldn't have it, so he wouldn't do it.  I was shocked!  I don't know what happened from one week to the next, but it really took me by surprise.  The surgeon's assistant had already booked me for the surgery and I had started to make plans with work about how to get the time off (pending talking to the surgeon and finding out how much time I'd need).

So, trust me, I *don't* love my GI.  At this point, though, I don't know that I can afford to wait for the length of time it would take to get in and see another one.  I called my GIs office on Friday and his secretary will arrange for me to speak with him on the phone on Monday morning to discuss this.  This largely explains my coming here and posting.  I'd like to figure out whether a colostomy (or ileostomy) would make sense for me (or not) and possibly be able to try to talk him into it, though I don't hold out a lot of hope.  My surgeon is at least forwarding my stuff to a group of colo-rectal specialists at a local hospital so that I can at least get a second opinion; maybe I'll be able to talk them into doing it.

I just want it to end, you know?  From everything I've heard and read, an ostomy isn't the end of the world to live with and it sure sounds better than the life-sucking condition I have now.  My job is in serious jeopardy and the rest of my life has been a series of "oh, sorry, I'm not making it today after all; my guts are acting up".  I want my life back!  Sorry for the longwinded post and thanks for listening!  If anyone has any arguments pro or con the ostomy thing to solve my problem, I'd like to hear them.

Thanks!

Posted 4/30/2005 11:13 PM (GMT 0)
Rob,
I too am sorry to hear of all your frequent visits to the bathroom, my suggestion would be to ask for a temporary ileostomy, to allow your intestines rest. I'm no doc, but I have had both, the temp one and now a permanent one. Most Doc's from where I am from, and I mean surgeons and G.I.'s, know the importance of a rested colon. Don't give up, but don't give in to something that may not be needed for the rest of your life either. I did, and now am regretting everyday I wake up with this thing. Just some thoughts for ya...Good Luck!
Tammy
Posted 5/1/2005 2:06 AM (GMT 0)
I hear what your saying and I have been there myself. But life with this "thing" hangin on my belly isn't exactly the best either.

I guess when my gut is behaving and I am only having 4-5 Bm's a day...that's not too bad. but when I have D and I'm emptying the bag non stop I long for the days of sitting on the pot. What a PITA! I'm alot quicker than I was at first but it's still time consuming and I think it was alot quicker the "normal" way.

Not to mention it depends on where they put it as to your ability to empty it sitting on the pot. I can't do that. I have to have a stool beside the pot to sit on cause my bag is so high it doesn't work to try and empty it between my legs. It's quite a challenge for me if I have to empty it when I'm not at home.

I would think long and hard before I made the move to do this. I wasn't given a choice. I have learned to deal with it but if I could I'd reverse it in a heartbeat.

Good luck in whatever you decide to do. This is a tough one.
Posted 5/1/2005 2:07 AM (GMT 0)
Rob,
i completely understand the desperation. That 10 years when they said i had IBS and i was losing it in my pants all through high school and college, i would have done ANYTHING to get it fixed. Then when i found out i had UC, and the drugs stopped working, i was gung-ho and went in to have the surgery. So i KNOW that desperation. And i ASKED for a permanent ileostomy instead of the j-pouch. My surgeon sat me down and explained the pros and cons and said i could always go back to an ileostomy if my pouch doesnt work. I am 23 now, will be 24 on May 24. I had my 1st step on Nov 16, and am going on 6 months with a temporary. Now, given that temporaries are a bit finickier than permanent ostomies, its ALOT rougher to care for than i thought. That said, its been a lifesaver for me. I was bleeding so much they couldnt control it. And for once i dont have the sick feeling and panic grip me when i have the urgency. But it is a life change, and you really dont want to regret anything. Also, you have to think about always having insurance to cover supplies, which quite frankly are ridiculously expensive. And not to mention changing appliances, and finding one that works if it happens taht you have extremely sensitive skin. I didnt have a clue i had it until i had surgery. Then tried to find an appliance to fit me. That was not fun. I think Tammy's suggestion is brilliant if you can get a surgeon to do it. Try a temp for a bit...have a rest. Sometimes that is enough to kick things back into working order. Also, im wondering if you have tried any probiotics. They get the bacteria in your gut evened out. They are good bacteria (in pill form) so you just take them daily and surprisingly it helps with symptoms some. I am on them now to prep my pouch for reconnection...and if you do find a surgeon to do this, and you have a temp ileostomy or colostomy, ask about the j-pouch. Not sure if they would do it, but it cant hurt to ask if you are in the area of surgery anyway. I really hope things look up. Ill be checking on this board to see how it goes. And by the way, the probiotic i take is called PB-8 (8 different kinds of bacteria)..but there are lots of others you can try, even Acidophilus at your local drug store would do the trick...
Let us know whats going on!
~Eileen
Posted 5/1/2005 9:33 PM (GMT 0)
Thank you all for your responses!  You've been very helpful.  My conversation with my GI tomorrow morning should be very interesting...
Posted 5/5/2005 2:59 PM (GMT 0)
Hi folks.  Well, it's taken all week, but I finally got to talk to my GI this morning.  After a nice, calm discussion, in which he acknowledged my situation and all the things (drugs, etc.) that I've tried to get my condition under control, he has agreed to talk to the surgeon for me.  He cautioned me that the ileostomy I'm asking for won't necessarily fix anything, but agreed that there was a very good chance it would allow me to be functional again; i.e. I could let stuff build up in the bag and go change it every so often, making my time in the washroom quite a bit less than it is now.  On this basis and my understanding that this is only to make me functional, rather than fixing the problem, he is willing to call the surgeon about having him do this for me.  Woo hoo!  (odd thing to be cheering about, eh? :-) )  He's too busy to do it today, but promised to call him tomorrow and, at my request, will ask the surgeon to have someone call me tomorrow to let me kwow what is happening.  I don't know whether the surgeon will agree or if I'll actually hear tomorrow, but for the first time in a while I'm feeling at least a little bit hopeful.  I'll post another update once I've heard from the surgeon...
Posted 5/5/2005 5:30 PM (GMT 0)
I'm glad to hear you got him to listen. I had to really think back to when I was having the same problem. That has been about 5 years ago. After we got that under control I never really had the D issues again. I averaged 5-6 times a day but I was ok with that. If I had to go back to that constant going and cramping , no more than get up I'd have to sit back down, I would have to say this colostomy thing is a whole lot better.

I possitively despised it at first. it takes some getting use to. But I'm doing ok with it now.

Good luck with the surgeon. I hope he has some answers and they are what you want to hear! Take care!
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