I don't know how you persuade your doc - you might have to change docs. FWIW, that much gas would probably be a nuisance with an end ileostomy, too, so you still would benefit from resolving it.

Is it possible that you still have C diff? It's a difficult infection to cure, it often recurs, and some of the tests for it can give false negative results.

They've run more tests than I can count and c-diff has been done several times. I can't take it any more and have taken to literally punching my abdomen as hard as I possibly can to get the gas to shut the heck up. It works sometimes but I think it just makes me feel better. I have left bruises when it gets bad.

My surgeon says I probably have adhesions but he won't do anything about it. Both he and my GI say I just have to live with it but I can't. I'm a burden and feel worthless so something has to give. I NEVER had this problem before the surgery, NEVER!!!

I generally don't condone doctor shopping, but in this case I believe it is justified. You cannot force your surgeon to do surgery, so no point trying. There are a few members here who had to interview a number of surgeons before someone agreed to pouch removal. If your problem is adhesions however, more surgery could make things worse. What treatment are you on for your psoriasis? Did you know biologics can treat psoriasis, IBD and related arthropathies? If you've already gone down that path, then pouch removal may be your best bet, or maybe at least pouch disconnect.

jan

My heart aches for you.  I've lost my career along with l lack of quality in my  life and I am an inactive CPA. I have other health problems contributing to my permanent disability.  

I got c.diff from taking Cipro.  That was back when I still had my diseased colon. I had it more than once then and had a long 9 months on and off of flagyl before I kicked it in my j-pouch.  I probably had it months before going to the surgeon for my first anniversary of my take down.  I went back to my GI then as I had cuffitis.  He took a stool sample during a pouchscope and that's how I found out I had c.diff too.

I don't know what kind of test they are giving you for c.diff.  The testing I've had always needed to be done 14 days after I was off of antibiotics.  I think you need to find a new GI.  My local GI referred me back to an IBD GI specialist at the Mayo Clinic when conventional treatment didn't work for my cuffitis.  IMO good doctors refer their patients when they can't help their patients anymore.  He said he was a generalist and I needed a specialist.

I also have chronic abdominal pain and have been on Norco ever since my take down 4 years ago.  I've had 5 open abdominal surgeries including my hysterectomy.  After they've done small bowel studies they concluded I don't have strictures or other problems, other than pain, from my adhesions.  I was also told to expect partial obstructions in the future like have every now and then.

It's impossible to tell what is causing your pain without proper testing.  You could be as I am and have many problems going on at the same time. I still find it difficult to figure out what is wrong as I usually have several things at the same time. I have chronic cuffitis, recurring pouchitis, IPS, adhesions and partial obstructions sometimes.  

IMO you need to at a minimum get off of CIPRO.  Either wait 14 days to get tested for c.diff again or go right on flagyl or vancomycin right away.  I rotate off and on flagyl and augmentin for my pouchitis/IPS as all my doctors say to never take CIPRO again.  

Are you using probiotics?  Could you be having a yeast infection going on in your body because of the chronic CIPRO use? There's a mirad a things that could be going on at the same time.  Again I really empathize with you as we have similar occupations.

I've been off Cipro for over a year and I have taken many probiotics with VSL#3 the main one since before my take down. I've been scoped, had blood tests and stool samples, just about everything that can be done. My surgeon was voted the best for colo-rectal surgery for the past 6 years. No one wants to step on his toes. My current GI was the successor to the GI I had for 17 years and knows his stuff. I had a GI in between that had me on the Cipro for a year until he scoped the pouch and voila, no pouchitis.

Not only have I tried ALL the biologics for my psoriasis, I was in the clinical trials for Imitrex. Only one, Enbrel, is approved for PUSTULAR psoriasis, the rest are for plaque psoriasis or psoriatic arthritis. We only got the insurance company to pay for it by having my GI prescribe it for what we thought was Crohn's. Idiot drug companies think their biologics won't help those with UC - SURPRISE, they worked for me!!

I'm back to taking more and more meds and I'm done with it. I'm not taking any of them anymore because they don't do any good. I'm just a medical nightmare that I think has hit the wall. I didn't want the first surgery and actually refused it 3 times before consenting. I knew what the outcome of a perforated colon but I also knew that they had to abide by my wishes and make me comfortable. I knew if I went through with it this is what would happen. It was the worst mistake I ever made having the first surgery. I have no life, my husband of 27 year and I are hardly speaking, and I have no job or prospects for one. So much for 6 years and 15 years of experience! I'm really trapped. I tried to trade in a car I'd waited 8 years to get and absolutely love for a cheapo VW Golf TDI (used) because I figured I can make the low payments on it along with rent on a very small apartment. This is only if I stay in this state. I'm just feeling really screwed and alone.

Sorry if I upset anyone, I'll delete the posts if asked.

~T

Don't worry about upsetting us here. It is OK to vent your frustration about your problems. We may not be able to solve them, but at least we can understand and support you.

I certainly understand the dilema of having rock star doctors who cannot get you turned around to living a reasonably happy life. Their greatness makes others who might be willing to help shy away. One issue is that there is a perception is that if "the best" could not fix you, how can they. All I could suggest is to keep seeking new surgical consults. It certainly seems as if you have been very compliant with trying any and all possible treatments offered. There should be one surgeon out there willing to at least disconnect your pouch, if not remove it. Have you considered consulting at Cleveland Clinic? They even do remote second opinions, where you have your records sent for review and recommendations.

Jan

I'm sorry I misread your post and thought you were still on the CIPRO.  My 39 year marriage has been suffering too.  He moved into another bedroom because I was up all night going to the bathroom and have insomnia spells.  I get blamed for waking him up. He knows I am trying hard to get some quality of life back but is still a jerk about it all. Jan has a good idea about sending your tests and whatever to the Cleveland Clinic.  Mayo reviews patients records too.  I just happen to live closer to them.  

It's good you have a rock star doctor but maybe it's gone to his head.  He isn't the only good surgeon.  Sometimes the back up singers break out with solo careers.  My surgeon wasn't at Mayo's but he did his fellowship, or whatever it's called, at the the Cleveland Clinic.  Mayo said he did a good job constructing my pouch.  In other words it's not his fault that my pouch is  dysfunctional.  I have other autoimmune diseases. I hope that you can find a solution sooner than later. 

Just my opinion - because I know that adhesion lysis surgery can create more adhesions - but IMO it is totally worth a try to go through laproscopic adhesion removal surgery. If that is the cause of your issues, you will know shortly after it is done. Better than doing nothing and not trying. I, and several others, have had successful adhesion lysis procedures done. Was getting a blockage every few months in my first year. Since then - no complete blockages, very few what seem to be partial blockages.

Steve

I've been trying to have my pouch out for 14 years. They keep trying more things. Sometimes they work, sometimes they make me more miserable. Good luck trying to get it removed. I live in fear of what will happen to me when this med stops working. I guess I could Dr shop but if and when the time comes these r my doctors who know my history and I feel comfortable with them. 

PS

Didnt see your post about adhesions.

I had the surgery, took 6 months and lots of tests to convince my surgeon to do it. I literally could not eat, it got to that point. Yes, non stop gas can be a cause. Your system trying to push things thru. 

Although I still on occasion have problems they r no where like they were before. I had this surgery 4 years ago.

You need to either push your surgeon in this matter or find someone else. 

In the meantime, use a heating pad. It should help.