9 months post-takedown. Not going well

hey Daniel, sorry to hear things aren't quite right. the good news is you fought the rectal cancer. the challenging news from what little I know of it, is that the chemo and radiation might have set you up for a difficult jpouch life. at least that's what one surgeon told a local friend who had colon cancer and then opted against this surgeons reco for a jpouch. I haven't heard from him for a while and I know the first 6 months or more post takedown weren't ideal. that said neither was his experience with the ileo. he's about 60 so a little older than you.

here's my question to you. what are you eating? are you eating binding foods? this site under the information heading tab has a dietary guidelines list of foods that might be a good place to reference. also have you tried Metamucil?

when I had my colon and was battling uc, the best med was they hydrocortisone enemas. unromantic as they might be, so hopefully the localized topical application of cortisone suppositories address the issue for you.

also 9 months out, from what people tend to say, your still in the rookie time period, aka adjustment period. keep at it, hopefully the new med does the trick.

I know the hell you are probably feeling. I suggest you get a second opinion. My local GI sent me to an IBD specialist when the treatments he prescribed weren't working. I don't know your GI's background and mean no offense. If the treatment plan he has you on isn't working then maybe you need to see someone with more j-pouch experience...

They warned me the recovery could take a year.

Did he call it "cuffitis? That was my first problem. In double stapled j-pouch surgeries they leave several centimeters of the rectum above the sphincter muscles to staple the j-pouch to.  Cuffitis is ulcerative colitis by another name and it is located a very sensitive placeme use a lot.  Someone on here once calculated the size of his remaining rectum was the size of a quarter. Just a quarter but it can cause a bunch of pain.  Do you have a copy of your biopsy pathology report? If not I  suggest you get a copy. Pathologists called my cuffitis UC in their reports. There was one scope it cleared up enough to be called pouchitis. Not to minimize  pouchitis. It was awful too. I got it several years after take down.

The first problem was cuffitis and the first medication I used was what you are using. Have you tried Canassa yet? They are expensive suppositories but worked better for me. 

 Unfortunately I developed too many chronic problems and was diverted to a permanent ileostomy 5 months ago. I should have done this at least 18 months before I did. It took me that long plus my GI at the Mayo Clinic arranging a consultation with a surgeon. My husband and I met with both of them and it was time. 

I'm 60 and have dealing with this for at least 20 years, the last third of my life. You have a lot of years ahead of you and hopefully they will be better and your cancer is gone for gooid.

Daniel, so sorry to hear is.  Has anyone looked for an internal fistulia?  My son had this issue when he had his first takedown in Sept of 2014.  Now he is getting ready for his second takedown and I'm afraid of what is going to happen.  Sometimes I wonder if it is all worth it.  

I do recall it was difficult to find the fistulia.  I remember he had a capsule study, an MRI and something else, I don't recall at the moment.  But I think it was the MRI.  I remember a bunch of X-rays at interventional radiology.  Just a thought.  I hope you feel better soon.

I think it may be a matter of finding the right medication to get that pouchitis under control. Some people have had good luck with a combo of antibiotics. Hopefully those suppositories help. 

I didn't develop cancer but I did suffer from UC    I became very sick and Ultimately I needed the surgery . I had three surgeries  within 5 months  I was very weak.  I developed mercer and a few other infections  My hospital stay was over a month and than in and out of hospital.  It took me a very long time to get to where I am today. The Dr. also told me I had a poor functioning pouch. It did take a long time but I know what to eat what bothers me and what to stay away from.  I can eat things now that I couldn't eat before.  I have more better days than bad.  With the help of everyone on this site I got thru it .   So don't give up .  Pay attention to what you are eating and drinking and what bothers your digestion.  I can see you must of went thru a terrible time having the cancer .Your situation is not like mine  but I can tell you what I have done thru the years.  I do take a lot of vitamins and protein drinks to compensate what I don't eat.  I know that sugar is the enemy for the pouch.  I have also become lactose intolerant but everyone is different. I do take vsl#3 ds probiotic in the morning and antibiotics at night every two weeks for a week alternating cipro one week off  2 weeks  and flagyl one week and off 2 weeks.   I try to hold off with the antibiotics if I feel the pouchitis coming on than I start the antibiotic as needed. I also use creams that are inserted in the rectum when things get bad. I also drink plenty of water thru the day.  I know what works for one doesn't work for another so you have to try and figure out what works for you.  I haven't been able to gain weight but my numbers are better so it doesn't matter to me anymore.    I wish you health but don't give up.   It is going on 6 years since my surgery and I can honestly say that I am not 100%  but I can live my life better now than before surgery.  May you have better days  I wish you health    Grace

Thanks everyone for the responses. 

I tried metamucil for a while, and it didn't really help, but maybe will give it another go, along with a stricter diet. I was quite strict for 6 months, but it didn't seem to be doing me much good so I became less so. 

My GI is at Sinai (NYC) which I'm told is a pretty top place, and I'm quite confident that between him and the surgeon there, they know what they're doing. I was actually sent to him a few years back by my initial GI who basically said he had done what he could and thought I should see someone more expert, so sent me to the guy I see now.

Hasn't mentioned cuffitis, only pouchitis low down. I do know that one of the big problems initially was that the cancer was also very low down. They weren't sure that a pouch would even be possible, but after the therapies had shrunk the tumor, they had enough "space" left to do the pouch. So I'm thinking that I probably have quite a lot going against my pouch functioning well. Anyway, he told me to try hydrocortisone suppositories for a week - enemas used to sort out my UC really well for a while since flares were also often localized low down - but am 3 days in to using them and the burning down there is unbearable, and what's coming out seems more bloody - not in the sense of actual blood coming out as in the old UC days, but just the stool (such as it is) seeming very red as if it's bloody. Going to have to call the GI tomorrow to speak to him and see what to do.

Mt Sinai is highly regarded. stick with it, it might just be the aftermath of cancer treatments that are complicating matters presently. I personally have contemplated resorting to the hydrocortisone enemas as like you for me they were the most effective med when I had a colon, of course that was >30 years ago and meds have come a long way since then but the memory is there. my doc has said that she wouldn't be adverse to trying them. the suppositories will hopefully do the trick. good luck.

DanielR posted:

So a year out from the first surgery and 9 months from takedown, still having a really lousy time with the j-pouch. Had a first pouchoscopy on Tuesday, and GI said it looked really good apart from some mild pouchitis right at the very bottom. Problem is - that mild pouchitis is causing me hell. Cipro was working but doesn't seem to be anymore...

Point of all this is - is this it? Does the fact that the scope actually showed up that things weren't bad mean that I'm just going to have a poorly functioning pouch? Risks of that were always increased as I had to have radiation and chemo prior to the surgery. But currently finding it really hard to function properly, and getting quite depressed about it. Anyone had a similar experience and seen things turn around? 

Literally in the exact same situation, minus the cancer and cancer treatment. 9 months out, "mild" pouchitis, poorly responsive to anything. Quality of life has been very poor. I'm 22 y/o.

I think my parallel to your rectal cancer is that I had severe rectal disease and that my colectomy and jpouch surgery was done while I was in a very bad state. I had multiple post op complications and wonder if the fact that I came there so poorly meant that my jpouch has problems from its creation.

I have nothing to say other than that I feel your pain. We will get out of this.

My pouchitis has always been called "mild" by my GI after all of my scopes, yet, I have chronic pouchitis that would be a nightmare if I didn't take antibioitics.  Cipro was the first antibiotic that I used as well, and I stayed on it way too long, without rotating to a new antibiotic.  I didn't know much about chronic pouchitis then.  It's no longer effective for me, but lots of other antibiotics are.  I would suggest trying Flagyl, Augmentin, Pepto Bismol, or Xifaxan, or others might have more to suggest trying.

Try a new antibiotic first, because it will easily answer the question, pouchitis or not.  If it works, then it's pouchitis, and not another pouch issue.  Even though I do have chronic pouchitis, I would never consider my pouch a poorly functional pouch.  It actually works great as long as I'm on the meds.

Best of luck!

I think I am about to go back on cipro/flagyl. are there any antidepressants that you CAN take with on these meds??

Hi, I'm been dealing with situational depression because all my issues with UC first (for almost 2 years), my J-Pouch surgeries, and now some problems with my pouch I'm experiencing .  I'm on Paroxetine (Paxil) 40 mg a day and also Imipramine (Tofranil) 25 mg a day and doing much better emotionally.  I highly recommend you to look for Psychoterapist or Psychiatrist (in my case I needed both) to help me deal with all of this, because is not easy.

Best of Luck,

Laura

hi laura ty. I do have something but while on cipro/flagly there is no antidepressant one can take--I did talk to the pharmacist. no it is not easy my fap was when I was 40 I am now 70 and alkthough they say you cannot get pouchitis from fap  well you can and I did. we just keep fighting thanks again 

Palm, your pharmacist is misinformed. I just tried a few at random, and found zero drug interactions with Prozac, Paxil, Zoloft, Effexor, Lexapro, and Nardil.

I agree - I've tried several anti depressants over the years and had a problem with only one - Wellbutrin - and that had nothing to do with pouch.   Take Zoloft now and I think it helps - along with exercise, etc. - and also - lowering my expectations via cognitive behavioral/ meditation type thinking.  I've thrown everything in the book at it over the years and if one thing stops ....I try something else.  Sometimes changes are needed in meds or coping skills  - the old ones grow stale, etc. - there were times when I thought, "nothing is going to help- enough" - but I have always been wrong - they were dips in the road of life.  Please hang in there.  Power to the people of the Pouch!

well I was told by doctors as well as pharmacists not to take any antidepressants when on cipro/flagyl.I have to go back to the dr. have not done so yet as I am happy with my pain meds..

Palm55152,

Feeling better is the goal and I'm glad you are doing better

I have never been told not to take antidepressants with any antibiotic and have been on many of them at the same time over the last 20 years.  I've also needed to take prescription medications for years. I've had doctors of many specialties and have all of my medications at the same pharmacy during that time.  I periodically go to on-line sites and enter all of the medications and supplements I take to see what the potential risks are.  

I don't have the same medical history that you do and am not a medical professional. I am just telling you what has happened with me personally.