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Need Advice

XenophonXenophonMember
I was diagnosed with UC about 6 years ago, most likely had it for a while but just did not know what was going on. I was followed by a great Gastro, and did all the meds, the IV Remicade, everything, and it kept worsening and worsening. Last year after all these trials we went to the Cleveland Clinic and had a consult. It was determined I was definitely in need of surgery. I had the Colectomy in August of 2012 and the surgeon said he has done 7000 Colectomies and has only seen one Colon worse than mine. It was a hard surgery and recovery slow. Got back to work and had the pouch formation in Feb of this year, that surgery was even more difficult, and more complications ( respiratiory failure, bladder function loss, abscess ). Did not get back to work by May takedown. Had Takedown in May of this year and it also brought complications (illeus times 5). Got back to work ( I am a Physical Therapist 58 year old male ) in July of this year. It has not been good since May. Pouchitis, incontinence, burning diarrhea, C Diff, weakness, and on and on. I do not go a day with out bowel incontinence, I still self cath and I need some advice.
I was on Long term disability earlier this year before going back to work, and we have nearly gone broke paying for all the co pays, medical insurance, expenses, etc.
Long term disability could be resumed if I had a recurrence of the same problem within six months after returning to work ( July 13) and right now all Hospital and meds are at 100% level secondary to how much we have paid in so far.
Question: This does not seem to be working, and its been over 5 months, and if I had it reversed before the end of this year I could be back on Long term disabiliy and have surgery paid for. If I wait until after the first of the year it will be a large expense secondary to high deductibles, no time off accumulated and would have to start back on short term disability.
So; should I be doing better after 5 months?
So; what is the average clinical picture of someone at 5 months.
I am bowel inconinent 3-4 times per day, I sleep 1-1.5 hours and wake up and go back to sleep everynight, I have burning occaisonally, I still self cath, and I am tired.

Should I get pouch reversed? Get bag back?

Thanks in advance
Xenophon Smith
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Scott FScott FMember
Xenophon-
You'll get a variety of ideas here, and plenty of support for whatever you decide to do. I'd recommend that you try (to the degree possible) to separate what might respond to treatment vs. things that will get better on their own. Many folks will tell you that things keep improving ("on their own") for up to a year or more, and that's true, but quite unpredictable. What worries me (and I can't tell from your post) is whether you have (for example) untreated or inadequately treated pouchitis or cuffitis, or IPS, or...

Another consideration: if you go on LTD, do you have a sense on how the process of returning to work works (if you later feel up to it)?

It does seem a bit early to abandon the pouch, and additional surgeries aren't risk-free.
TE MarieTE MarieMember
I agree with Scott and see a lot of buzz words in your post like, "c.diff and pouchitis". I suffered with c.diff, IPS and cuffitis. They all have similar symptoms and are hard to tell apart. The longer one of these goes untreated the harder it is to get rid of. I don't know when you were diagnosed with what and where you are in the treatment(s).

Are you suffering incontinence because you still have c.diff, was it caused by it? When was your last pouch scope? What do the professionals at the Cleveland Clinic recommend? These are just some of several questions that I would ask myself if I were you.

I understand your financial concerns. I had my take down on 12/29/10 and walked out of the hospital on 1/1/11 so I didn't have to come up with our $4,500 deductible right away the beginning of 2011.

Since you had 3 surgeries I am assuming you had more problems going in than most so am thinking that you might take longer to recover than average.

Do your physicians think you should rest your pouch and try for a take down again at a later date or that you should have your pouch removed at this time?

How did you feel when you had your end ileo? If you felt better than you do now then maybe your answer is as simple as comparing now to then.

It isn't fair, none of this is.
P phonix2gMember
Hey Xeno, this is a big and tough life changing decision you are looking to make and as it is good to look for some guidance the ultimate decision comes down to you and if this decision is going to be the right one for you. There are people that will tell you to stick it out and others that would rather take the path of least resistance and not have to deal with the issues you are dealing with on a daily basis. I had my takedown in March and have been on LTD and looking to go back to work in about a week or so. I also had a lot of complications throughout my surgeries so my recovery was tougher than most. I had many infections and extreme anemia which was a tough time. I've had really bad bouts of butt burn, nasty gas pressure and rectal pain, and just had a dilation under anesthesia for a stricture which I feel helped a little but still having some of the same issues. There are also many people on here that have dealt with multiple issues for years and have stuck it out. It basically comes down to your tolerance level and if your Drs have exhausted every option for you. There are many different things to try: antibiotics, probiotics, pouch advancement surgery, etc. Like I said I would try every option as I could to keep your pouch because you are still early in your recovery and things can improve. Going back to a bag has issues in its own you have to consider also. I hope things improve for you and you make the right decision. Good luck with everything.
R RocketMember
Hi Xeno,

I feel really bad for you and I know what it is like to suffer so much you just want to be able to live your life as you want, but cannot because you are only able to do things what your health dictates, especially in this early stage.

I am not sure you are a candidtate for this but there have been tests for a procedure called Fecal Tranplant. I have attached the link to it.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3365524/

Again, I am no authority on any of this stuff so you need to get this best advice from your doctors.

Rocket

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