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Same amount of Bowel Movements?

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Posted 6/3/2012 8:53 PM (GMT 0)
The major reason I haven't given in to surgery (the bag) so far is that I have 15-20 Bowel movements per day, and  the Dr. said there is no guarantee that I won't still have 15-20/day after surgery. Why would I want surgery if that's the case. Help...need input and other peoples experiences please.  
Posted 6/3/2012 9:25 PM (GMT 0)

Do you have UC or Crohn's?

Are you talking about surgery for a permanent ileostomy or a permanent colostomy or a J-pouch?

I had Crohn's Colitis and now have a permanent ileostomy [bag] and I empty 4-5 times a day while standing up and I am in and out in no time flat.   Maybe an extra time or two if I am going out and want to avoid using a public restroom to empty while I am out.

What I do now is a walk in the park compared to what I went through before when I was chained to the bathroom for almost as many times a day that you describe. 

Others will have to fill you in about a colostomy or a j-pouch.  However, I have read here that j-pouchers still go several times a day.   I was not a candidate for a j-pouch, but would have declined as I was so completely done with going the "old" way and do not miss it for a second.    BTW, that is just my opinion and not a recommendation to anyone else as it is a very personal choice.

Just do your research on all procedures and you will then be able to make an informed decision.  The archives here have volumes of information.   Many other folks will be along shortly to offer their help to you.

Good luck and keep us posted :-)

Posted 6/3/2012 10:01 PM (GMT 0)
Hi and welcome! I have a permanent ileostomy due to Crohn's and only empty the bag when I go to the bathroom to pee. I've never counted how many times per day that is, but it's nothing compared to the 20+ trips per day with Crohn's. Plus, with an ostomy, there's no urgency to go to the bathroom, so it can wait until a convenient time, which was not the case when I was sick.

Hope that helps!
Cecilia
Posted 6/3/2012 10:37 PM (GMT 0)
Frequency isn't the only thing to consider. There is also:

Pain
Fatigue
Anemia
Medicine & side effects
Risk of secondary diseases

Depending on which disease(s) you have and what type of surgery you are able to get, you will have a different outcome. So which do you have?
Posted 6/3/2012 11:12 PM (GMT 0)
If you are considering j-pouch surgery with UC, which is what I have, it's almost certain you won't go anywhere near 15-20 times a day.  I go maybe 5 now.  One in the morning, once after each meal and once before bed.  Maybe a couple extra if I eat late at night or if I eat a lot of veggies/fruits. 

Like others have said, it's a walk in the park compared to a UC flare.

Posted 6/3/2012 11:18 PM (GMT 0)
Thanks for the quick reponses. Sorry, but I'm very ill informed judging by the terms people are thowing out here. To give some brief answers...I have UC. Have had it for 14 years, with constant flares for the last 3 years. I'm currrently on Remicade infusions every 6 weeks. Been thru Prednisone (which is taking my left hip) Asacol, 6MP, Rowasa, Enema's, and many natural things.

P.S. Where are these "archives" where I can educate myself?
Posted 6/3/2012 11:44 PM (GMT 0)
I'll try to explain some of the things that everyone's talking about. :-)

A j-pouch is when they remove your large intestine and connect your small intestine to your anus.

If you don't have UC in your rectum, then you can have your large intestine removed and get a j-pouch, which is a 2-3 step surgery. Before the final surgery to connect the small intestine to the anus, you would have a temporary ileostomy. But, once you're connected with the j-pouch, you would go to the bathroom normally and would not have an ileostomy with a bag.

A proctocolectomy is when they remove your large intestine and rectum, and you get a permanent ileostomy, which is where they pull the end of your small intestine through your tummy and a bag goes on top of it.

The way the bag sticks to your stomach is with a peel and stick wafer that has a hole in it for the stoma, which is the small intestine part that sticks out - it's about the size of a small strawberry and resembles one, too. The bag snaps onto the wafer and has a velcro closure, so when you sit on the toilet, you empty the contents of the bag in between your legs, wipe the end, and re-velcro it.

To search the archives, type a word like "j-pouch" or "ileostomy" into the search bar at the top right of the screen under "Join Healing Well" and it will pull up posts containing those words.
Posted 6/4/2012 2:19 AM (GMT 0)
I just wanted to say that with UC you can still get the j-pouch even with rectal involvement of the disease. They somehow strip the first layer off or something while preserving the sphincters and muscles which removes the part the illness was effecting but keeps the stuff you need to attach the pouch, retain continence, etc. This was my situation as my UC was pretty much the rectum, sigmoid, and a little bit of the descending colon, but that rectal involvement caused me the most grief!

I would say I go 6-8 times a day, maybe a couple more or less depending on what or how much I eat. It's never an issue though. It's like I just go while I'm already there to pee anyway. I don't have pain, accidents, or urgency. If I'm out and feel like I'm going to need to go, I can wait...even an hour or more sometimes of I need or want to for whatever reason. When I had my ileostomy, I basically just emptied when I went to pee and that was it unless I made an extra trip before bed or before working out or something just to make sure the bag was empty on those occasions. For the ileostomy, I think learning what you are getting into as far as care and maintenance of the stoma, changing the appliance, etc. is a much greater consideration than how many times per day you might need to empty the bag. It's not too difficult once you have a routine down, but there is an adjustment period where it feels like a lot to learn.

If you can give us some more specifics on which surgery you are considering, then we will be able to provide some more specific feedback.
Posted 6/4/2012 1:27 PM (GMT 0)
Like many others who posted, I have Crohns Colitis (possibly UC) and chose a permanent ileo because I didn't want to have to deal with still having urgency and frequency. I'm SO GLAD I chose this. It is the best thing I've ever done for myself. I empty usually most times that I go pee, and again...I can wait until a convenient time. No one can tell I have the pouch, and I've worn leotards and tights (I'm a dancer) and even I can barely tell it's there!!! 

Like someone else mentioned, you have to also think about the other things you'd be giving up with surgery: no more meds, no more fatigue, no more pain, no more prednisone!, no more compromised immune system. You don't realize how much those things affect your life until you don't have to live with them anymore. It's been 2 years for me and I still marvel at how I managed to live that way for so long...but while I was going through it I didn't realize how awful it truly was.

It is up to you what you'd like to do but we're here to help regardless of what you choose.

Posted 6/5/2012 1:09 PM (GMT 0)
Lot of good responses here .... also just wanted to reiterate that if you've been sick for a long time w/UC or Crohn's then you've probably lost perspective on just how bad you feel all the time. It's amazing how much healthier I am since my surgery, and there's no urgency at all -- much better quality of life. I realized just how sick I really was when I got better.
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