Skip to main content

Hi everyone. I have had my j pouch since 2012. My ulcerative colitis was so bad that the doctor who did my surgery said it was the worst case he'd ever seen in his 30+ years. I got my entire large intestine removed and the doctor told me I literally had a week to live if I didn't get the surgery when I did. Even though I am happy to be alive, the surgery was without a doubt the biggest mistake I've ever made. 

I go to the bathroom close to 30 times a day, and that's on a good day. I am a professional magician so this effects my shows. I also can't keep a regular job because I'm in the bathroom so much. I have CONSTANT gas, my stomach doesn't stop making noises, I'm always feeling the urge to pass gas but can't. I haven't gotten a complete nights sleep since I got my illeostomy removed. I get maybe 3 hours at a time then I'm back in the bathroom. And having insomnia doesn't help either.

I don't eat junk. I eat healthy, I try to at least. I am a bit overweight, but every time I try to exercise, I can go for about 10 minutes or so at a time and then it's back to the bathroom. 

What can I do? This had ruined my life. I have thought about reversing the j pouch but I don't have health insurance. Medicines like beano and gas x don't work on me. I literally need to take half a bottle in order to feel any effect. I've tried everything. I honestly want to end it all sometimes. Any suggestions on what to do?

Original Post

Replies sorted oldest to newest

wow that sounds terrible mate, No way you should have to suffer like that.  Have you seen a Doctor?  It doesn't sound like the pouch is functioning at all, maybe you have an issue like pouchitis?

 

Beano etc only works on gas the food produces,  doesn't sound like the food you eat is inside you long enough to produce gas, so it wont work.  Id guess you need antibiotics or some other intervention to calm that down. 

 

its does sound miserable though, so please do seek proper medical assessment.  People here can give you lifestyle advice and maybe even help with difficult decisions and offer support, but they cant replace a specialist in this situation.

 

You really do need to get it checked out.  Good luck and please let us know how you get on

Hi Chris... my heart goes out to you.  You should not be going through this.  Something sounds wrong.  I just add to the others with the same questions...have you seen a good gastroenterologist and had a scope done.  I'm not familiar with the US and health insurance as we are in Canada.  But they can't leave a guy living like that.. right now your lifestyle is one of disability.  Is there some aid for that to meet your expenses?

You probably will not like my answer. It does not sound like there is anything you can do to improve your situation without seeing a doctor and getting appropriate treatment. Anything other than that is a waste of time and looking for false hopes. All that over the counter stuff is for maintenance, NOT treatment. If you cannot afford health insurance, why not sign up for ACA coverage and assistance? There is still is time, as Obamacare is still in effect. But, you cannot delay.

Jan

Last edited by Jan Dollar

Add Reply

Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×