JPouch Surgery and other Ostomies Community Group
A place where anyone considering, waiting for, recovering from, living with a j-pouch or other ostomy can ask for insight and share their experiences.
Hello everyone! I'm new here, and I am really hoping to get some sweet sweet advise from as many heartfelt compassionate people that I can. Thursday October 6th, I had my final surgery. I don't remember the actual name but it involves taking down the stoma and sewing me up for good (my first surgery was a total colonectomy and the second was constructing the J pouch along with a different stoma). Since my last surgery though I've been very discouraged. I thought it was going to be a breeze. I was told that surgery number three was the easiest...well the surgery was but recovery is a completely different story.
I've had bad and okay days. My body runs on a schedule. Mornings I have frequent bowel movements and around noon I feel basically normal, and then by four or five I start going to the bathroom more than ever. That's how it's usually been these past few days.
Today was going pretty much the same way except at about five oclock tonight I was getting this really bad urgency to poop but it only lasted a few seconds at the most and so by the time I got to the bathroom I had to sit there for a bit and wait to go. It's changed so much since then that it's hard to describe exactly what's been happening, but it's 10:30 right now and I still get the urgency feeling. It's not as often, but I still have it every once in a while. When I have a bowel movement it's not a lot, but it looks gritty like it's dry. At first it was a little runny like diharia but I ate some thickening foods and now it has that gritty look. No matter what I do though that urgency feeling is still here and it has gotten really painful. On top of that my butt is soooooooooooooo sore from going so much and all that wiping! I've tried Butt Paste and Desetin but they don't do much. Although they would probobly work better if I wasn't going so often. Has anybody experienced this painful urgency sensation? What is it and how do I deal with it? I would appreciate anything you know about this. Thank you!
~Lauren
I've had bad and okay days. My body runs on a schedule. Mornings I have frequent bowel movements and around noon I feel basically normal, and then by four or five I start going to the bathroom more than ever. That's how it's usually been these past few days.
Today was going pretty much the same way except at about five oclock tonight I was getting this really bad urgency to poop but it only lasted a few seconds at the most and so by the time I got to the bathroom I had to sit there for a bit and wait to go. It's changed so much since then that it's hard to describe exactly what's been happening, but it's 10:30 right now and I still get the urgency feeling. It's not as often, but I still have it every once in a while. When I have a bowel movement it's not a lot, but it looks gritty like it's dry. At first it was a little runny like diharia but I ate some thickening foods and now it has that gritty look. No matter what I do though that urgency feeling is still here and it has gotten really painful. On top of that my butt is soooooooooooooo sore from going so much and all that wiping! I've tried Butt Paste and Desetin but they don't do much. Although they would probobly work better if I wasn't going so often. Has anybody experienced this painful urgency sensation? What is it and how do I deal with it? I would appreciate anything you know about this. Thank you!
~Lauren
I have a couple questions for you... have you tried anything like imodium to keep your frequency down? Or has your surgeon not allowed that? Imodium helps me a lot, still, and I had my takedown the end of January of this year. Also, something you must try for the butt burn is Calmoseptine. Some pharmacies carry it but if they don't, they will order it for you. It's amazing. Also, try not to drink too much without eating something with it because it will probably go right through you and that will add to the butt burn.
Try not to eat too late or you will be going to the bathroom a lot in the middle of the night.
I don't know what the urgency feeling is from but I do get that still when I really need to go and have been holding it for awhile. That feeling is gone though once I go. I sometimes go a few minutes later too because it doesn't all come out the first time.
I hope this helps a little.
Good luck!!
I had a six month recovery - and that was recovering to the point that I could get out of bed on my own, not take multiple pain killers per day, and could take the spaceship handlebars off my toilet because I could finally keep my own balance. That didn't include my body relearning how to go to the bathroom yet, but most of that urgency sensation disappeared overnight at some point between my surgery and the first six months.
At the six month mark, you will start to notice a difference, if not before.
I know it seems far away, but it's worth the patience.
At the year mark, I think you will notice things are remarkably better.
I found all of the advice on this page to be true: http://www.ucsfhealth.org/education/special_concerns_for_people_with_j-pouches/
The hardest part is the trial and error - but remember that you will eventually get there!!
I'd be happy to answer any questions if you want to message me on here - sometimes I just get on to check messages but don't read the boards. :) Either way, hope you are continuing to figure things out and do better.