Pain & Urges

I feel your pain and believe I'm in the same boat as you. I'm at the end of my rope with the pain and urges, I've even taken to wearing depends every day because I have a no to little control over my bowel movements. For pain, I take vicadin every six hours.

I'm thinking about having a permanent iliostomy and colomosty bag. The number of times I've soiled myself is countless.  I don't want to live like this anymore.

The-SilMarillion, I’m so sorry to hear about the problems you have been having with your j-pouch.  You undoubtedly have made attempts to resolve the problems and perhaps have had second opinions from doctors who deal with j-pouch problems.  When your j-pouch goes, so does the natural opening you were born with.  Alternatives to the conventional ileostomy that avoid having an external bag are the k-pouch and BCIR.  You may want to research these two procedures online before proceeding with surgery.  I opted for a BCIR when removal of my j-pouch became necessary and am very pleased with the resulting quality of life it has given me.  The BCIR is done by Dr. Ernest Rehnke in St. Petersburg, FL.   Best of luck with whatever you decide to do.

Bill

Country,

 

I have a similar problem to yours. My pouch is 19 years old, and about 2 years ago I started having these urges/pains as you describe. I don't actually soil myself, but feel as though I might. I don't think this is pouchitis (in my case). I think it is cuffitis. I was able to treat it successfully twice with Proctofoam but recently this past October it just didn't want to heal and I did start to soil myself with the urges. I went on a 10 day course of Cipro and that fixed the problem completly. It is back again now, 6 months later. I am trying again with the proctofoam.

Maybe this can help you also? 

p.s. I don't take flagyl because it makes me feel really nauseated and sick, worse the the ailment I am trying to cure. But cipro has always been very quick acting for me.

 

Hope you're feeling better soon,

keep me posted

 

C-jay

I'm so glad to hear I'm not alone! I so appreciate your input and information. Items for me to look at. I don't have problems with control (yet) and fight like a dickens to not take any pain pills but when I have weeks like I have these past few weeks it's tough. People don't understand when I tell them, I feel better when I don't eat and have to plan my day on where I'm going and what I'm doing with eating or not eating. Someone had mentioned to me I may need dilated as this morning the damn seemed to have broken. However, I was passing before today so I'm a bit confused with that one. So many questions and so many what if's!! I can't imagine just taking a walk, not thinking about the urges, where the nearest bathroom is, making sure I have a pad on and defiantly making sure I have some butt cream on!!  Oh don't get me wrong I'm much better than before surgery but oh the life of just taking a walk.....

My quality of life is pretty poor these days. I dread eating becuase of the pain and discomfort it causes l, along with the urges and soiled underwear. I can't go an hour without the need of a bathroom, or having a leakage.

I think that if I go the route of a permanent iliostomy this will give me some of my life back.

yep...this is me too!  Started about 3 years ago, prior to that I suffered with pouchitis, then c diff and then ugh...everything in between.  I too am ? quality of life.  Bottom hurts so stanking bad right now that tried to go shopping with husband this a.m. led me to the bathroom 2x.  Don't even want to eat.  Started taking a plant based protein drink with tons of probiotics again.  Just finished 90 days of cipro, botox injection for fissure and still not feeling much better.  Wt. is down and fatique is immense!  Can't sleep at night becaus of bowel pain,  in j pouch, intestine, and rectum.  Hernia area starting to hurt now too.  Normal...I don't remember what that feels like.  

For the burning and icthing I have found a product call calmoseptine- it's available at Walgreens or your pharmacy can order it. It works wonders. Give it a try.

tried it!!! went through a whole tube of it.  still no relieve but I'm sure going to the bathroom 14 x a day isn't helping.  tried just plain old diaper cream too.  Years ago I had an allergic reation to zinc oxide..or so I was told zinc oxide...but gave all these products another try again out of desperation but still alot of redness and burn.  so I'm just coating the fissure with vaseline for now.  but thank you anyway!

I'm sorry to hear that the calmoseptine did not work for you. I go through a tube a week BTW. Another item I've found that helps with the burning and icthing is a. Anti fungal foot cream, it's possible you also have a yeast infection and this will take care of that.

Zinc oxcid is a pretty pure substance.  Could it be the aloe?  I'm terribly allergic to aloe.  Perhaps vasaline might help.  What we did to help with the butt burn is before my son went to the bathroom, he would put the Vaseline on and then when he was done, put more on.  This way the skin was always protected.

 

Thank you SilMarillion, I do use Calmoseptine regularly and love it. When times are real bad I add a layer of Dibucaine Ointment 1% under it to give a numbing effect. I'm going to be checked next week to see if I need dilated. I kind of hope that's it as it's a quicker fix in the hospital. Summer's coming and I want to be able to walk around move without the intense urges, pain and occasional accident to cause irritation!!

Just as a follow up. I will have surgery next Thursday (4/16) for scar tissue inside where I was connected inside the rectum that has me about closed up. He said he would have to scrape as he couldn't do the finger exam. I'm looking forward to the surgery in hopes it allows me to get a bit of a life back and eat more than mashed potatoes :-)

HOpe your surgery goes well. What do you mean when you say you will need to be dilated?