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My take down was 8/20/2012 and things have only gotten worse - just in a different way. I had to start out 2/13/11 with a colostomy because I was misdiagnosed for over 21 years - great! I got C-diff, had a TON of complications, including peritonitis after the first surgery, and spent 3 1/2 months out of 8 in the hospital. When the pathology came back, it was UC so I had to have MORE surgery. I was so extremely ill that when the colon came out I was on TPN for 4 days prior to and 8 days after the surgery. More complications followed. We planned the j-pouch for 9-12 months down the road but I had to have it ASAP so spent my 25th wedding anniversary having surgery. I then went into renal failure, had to have fluids 3 times a week, and finally had the take down Aug. 20, 2012 but with MORE complications requiring surgery. I didn't want to have any surgeries to begin with and refused the 1st one 3 times before I finally got nagged into it. I wish I'd never done it.

Now I have VERY VERY noisy bowels, still got to the bathroom 4 times an hour, and have terrible pain. I don't have pouchitis, take VSL#3, Beano, and anything else to stop the gas but nothing works. I don't eat all day because I don't want to deal with the issues then am up 1-4 times at night. I can't get anyone to treat the pain because in our government's infinite studpidity they've decided it's SO much more important to protect those few people who ABUSE the drugs and die than to protect the MILLIONS of us who need them to LIVE!

I'm an accountant and I don't see myself ever returning to work if I can't stay out of the bathroom and my guts make LOUD noises in the middle of meetings with clients.

I want my j-pouch reversed because at least with an ileostomy I won't have butt burn, make horrible noises in the bathroom, and can actually function. I've talked to my surgeon and my GI over and over and they keep telling me I'll be happier with the J-Pouch. This is MY LIFE and I think I have a right to choose how to deal with a lifetime of curses heaped upon me.

Anyone have any ideas how I can convince them to reverse the surgery so I can have a life? I'm 47 and miserable.

~T
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Hi T, I feel for you. There are all kinds of situations on this site: those who want a permanent ileo and are getting resistance from their docs, those who are supported, those on the fence, etc. A lot of postings are under "Ostomy And Skin." I am having my pouch removed in January. My GI has seen me at my worst and agrees that the ups and downs are taking a toll on me. My surgeon agreed to remove the pouch he created - but he was sure to let me know that this will be the first pouch he's removed that he put in Roll Eyes Anyway, you may want to start keeping a list of your symptoms as well as reasons why your pouch is hard for you take. This is good for you as it will serve as a reminder regarding why you want this surgery and also confirm that yours is not a knee-jerk reaction to a temporamental pouch. It can also serve as something very tangible when you are pleading your case. You may want to tell your docs that, while a fine working j-pouch is great, yours isn't working fine. I even told my surgeon that his beautifully constructed j-pouch just doesn't like me. I never put his work down; why should I? He did a magnificent job. My body just isn't cooperating. I suspect that the "pouch pushing" that docs do is related to the desire for positive research results and, just maybe, their taking their poorly functioning pouches personally. I hope you get the results you're looking for soon Smiler
Thanks, I've been asking for this for 18 months and all I get is NO. I'm taking so many medications and I'm tired of it. I didn't want the darn thing to begin with because I was tired and ready to go but got talked into it after a few weeks. Doctors seem to have a real issue understand living and HAVING a life. My husband doesn't understand either so I have zero support. Right now I'm gurggling away so loud it can be heard 15 feet away and they wonder why I want this over with.

I guess I'll just have to demand it be done and if they won't listen, change doctors and surgeons. I hate this disease and I hate what it did to me in the past and continues to do to me today.

I don't know how much more I can take.

Thanks for listening and for the advice,

~t
sorry you are suffering. Can you get second opinions with another gi and another surgeon? I too had found some medical professional ere way too "pro pouch" despite problems. And I do believe some docs don't want to be viewed as having a pouch failure in their records. So time for second opinions for you. It is YOUR life.
good luck
I could see giving you a year to try to adjust, because it is presumptuous to think that at, say, 4 months post takedown or even 8 months to a year, that that is where you'll be FOREVER. Most people continue to see changes for the better even past a year. I'd say 2-5 years is more like it. I count myself lucky, because by 4 months post takedown I was in nursing school and working 20+ hours a week and doing remarkably well... but I know that not everyone experiences that.

However, that being said, it's your body, and you're unhappy.

Your GI and surgeon are not the only GI and surgeon in the world. My father has a very bad habit of getting in with a doctor, finding he doesn't care for them or click with them, then not ever trying to find another one when he's unhappy and just complaining about it all the time (I'm not saying that's what you're doing, just that you've been with people you don't see eye to eye with, likely, after a long time)... I do know that there are limitations occasionally to what you can and can't do with your body and healthcare (insurance, proximity to better doctors, etc.), but I would try my best to find someone more sympathetic to your issues, if at all possible. If they are staunchly against removing the pouch, and you talk them into it, will you even want to be under their care afterwards? It's something to think about. I don't know if I would, in your case, plus people say pouch removal is a difficult surgery, so I'd research around to find a surgeon adept at that, too.

Good luck, though. I hope you find relief in some way, shape, or form.
I have no problem getting pain medication from my Internist. She understands my pain and my GI has no problems with me taking several Norco daily as it slows down my GI system which is helpful for my dysfunctional pouch. I have chronic cuffitis and pouchitis plus adhesions from 5 surgeries.

I understand you have gas pain and frequency and noise problems plus butt burn. Have you tried to slow down your system with anything like Imodium, the prescription form is Loperamide, and/or Metamucil. I too am an accountant and understand why the noise and gas is such a problem to deal with at work. I'd like to suggest that you eat small amounts during the day and eat your evening food so that you are done eating at least 5 hours or so before you go to sleep. One time getting up during the night isn't as bad as 4 times. Our colon was our Muffler and that is why you are hearing so many sounds. If you had an ostomy you would still hear the noise Frowner If you eat small amounts of protein during the day I believe the noise will decrease. I also preferred "Super Digestive Enzymes" to Beano. I used the brands "LifeExtensions" or "Solray", they come in gelcap form and worked better for me. Something else that helps with gas is yoga like moves to get it out! Gas rises so you need to get your rear positioned higher than the rest of your body. I get on all 4's and then collapse my front arms and head down to the floor leaving my butt in the air. You can make it a good stretch too. Some people find laying on their stomach's help to move the gas too. You can bend over while sitting on the throne as well. Finding a way to physically move the air through your system works. We don't have the contradictions in our large intestine to do it anymore. These are things they don't tell us about when they say they are going to "cure" us with the surgeries.

Please schedule an appointment with your regular doctor to discuss your pain. My GI doesn't see me often enough to prescribe pain relief. The new regulations make things more difficult in that I have can only get a prescription for one month at a time and need to pick up the next months prescription at her office. My doctor said to make sure and pick it up on time. It doesn't bother me as much as it makes me mad that my 83 year old father that needs someone to push him in a wheel chair and valet parking to get to his doctor's second floor office. Others can pick up your prescription for you but I live 3 hours away and everyone dad knows works during the doctor's office hours. (Sorry, end rant about the new laws.)

I hope something I've said can help you. I know this all sucks. None of us wanted the surgery either. I don't know how many times we have to pick ourselves up and dust ourselves off and start all over again. It is getting harder and harder for me each time, but each time I find the will to do it.

Take care Smiler
Last edited by TE Marie
Keep looking for a surgeon. Don't let them tell you how to live. I had to go to 4 - that's FOUR - surgeons to find one who agreed pouch removal was my choice. That was almost 11 years ago and never a problem since. Please PM me if you have questions.

If you know you want an ostomy keep after them. See more doctors. Don't keep quiet. YOu are right - it is YOUR choice.

Jill - pouch free since 2003 at the age of 31

You know your body best and no one should be allow to tell you to 'live with it' or put up with it just because they are too tired or lazy or convinced that their choice should be yours...you are your best advocate...Fight the good fight...Find a different doctor and get that pouch unhooked or removed or whatever it is that you need to be alive and free again...

Sharon

ps...At some point you have to put it on paper and send it to them, they listen to 'paper' better than people!

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