I had severe UC for many years with a periodic flare-up here and there until I eventually went into a continual flare-up mode.  After trying several treatments that didn't work (the last of which was Entyvio infusions), over the course of several months, I was at my wits end with repeated ultra-urgent bathroom breaks, and many "accidents" where I didn't make it, so I was advised by my top notch gastro surgeon at Cleveland Clinic to have a 3-stage Proctocolectomy (removal of entire colon and rectum) done, which included the creation of the J-pouch. 

My first surgery was in May of last year (2017 - age 60) after which I had the ostomy bag to contend with all the time, including at work, but I figured out how to deal with it.  My second surgery was in mid October followed by the 3rd/last surgery - the illeostomy reversal/closure - in mid-December. 

My surgeon told me I should have a standard 4-6 week recovery after the second surgery but didn't feel good and dealt with fatigue so stayed off work for the full 8 weeks until my last surgery. My surgeon told me all along that I should expect a 2 to 3 week recovery, after the reversal/closure surgery, but I experienced severe fecal incontinance, in addition to not feeling well and fatigue, for about 3 months, so my surgeon put me on 3 anti-diarrheal medications - Imodium, lomotil, and liquid opium.

The medications helped a little but didn't solve the problem and still couldn't go back to work after about 4 or 5 months, so my gastroenterologist directed me to go to physical therapy for biofeedback therapy - anorectal-feedback treatments, which involves neuromuscular conditioning to essentially re-learn the muscular actions needed to defacate.

I completed the therapy about 3 weeks ago with "some" improvement - basically I get through the day with about 10 trips to the bathroom with no accidents (some leakage), but am up about 6 times through the night with diarreah - most of them where I didn't make it.  So here I am 6.5 months later with severe incontinence predominately at night and still not feeling well at all - especially through the mornings where I'm trying to take a nap or two to catch up on the sleep I missed.  I have gas quite a bit and my stomach makes lots of noise much of the time and I still have the fatigue.  I take iron pills for the fatigue which helps a little, but they're recommending iron infusions, which I was reluctant to do but after some research I'm going to ask for it. 

There was much discussion throughout about my diet and I met with a dietitian at the hospital, but it doesn't seem to me that my diet is the problem.  If I don't eat after a certain time like 7 PM until morning, that helps some but still have the problem.  There does seem to be a few "trigger" foods, so I try to stay away from them - especially in the evenings/nighttime - chocolate, candy, ice cream, etc.  I am low-moderate weight for my age of 61 at about 173, while my normal weight over the last several years has been more like 185.  I take a daily vitamin, drink a low-sugar, nutrition/protein drink (was Ensure, then Boost and now SlimFast), generally try to go light on sugar, meat, dairy, processed foods, and fried foods, and I was told to eat a lot of salt.  I've been back and forth a few times with regards to being on a soft/low fiber diet or regular/higher fiber diet where I would take Metamucil, but generally on a moderate diet and don't take the Metamucil.

I am seeing my gastroenterologist today so wanted to get this out.  Don't know why I waited so long to post, but would greatly appreciate and and all advice, as I would very much like to get better and get back to work.  I had a great job with a great company but have lost my specific position now and may not even get any position with them if I don't get better soon.   Thank you!

 

Original Post

I’m sorry your recovery has been so difficult, Arthur. A couple of things come to mind that might be worth your consideration. I’ll just list them, in the hope that one or more may prove useful:

  1. Was your anal sphincter pressure measured? A test called anal manometry can do that.
  2. Have you been tested for an infection, like C. diff?
  3. What is the consistency of your output? The right things to do are different if it’s pure liquid vs. pudding vs. solid.
  4. Have you tried a course of Cipro or Flagyl, in case this is pouchitis?
  5. The dietary salt advice you got sounds a bit careless. It’s true that you shouldn’t restrict salt, but I hope you’re not consuming too much.
  6. During these many bathroom trips, are you emptying a substantial amount of material, or is it small amounts? I’m trying to distinguish between too much output vs. inadequate pouch capacity.
  7. Gas can be challenging for many of us, since farting when away from the toilet is just plain risky. What have you tried to decrease gas?
  8. Has your pouch been looked at? If so, how did it look?

You might add Metamucil, especially after your evening meal. I was instructed by Mayo professionals to take Imodium as an appetizer and Metamucil as dessert. They had me mix it in a little applesauce and not to drink much fluid around then. 

Have you been tested for c.diff? I had it in my j-pouch along with cuffitis and had problems that sound like yours. You didn't mention having spa pouch scope yet. You could have pouchitis too. Those are the main things you should be checked for.

I'm sorry about your work situation. Hopefully you will soon be able to sleep more. That alone could make you fatigued.

Scott F posted:

I’m sorry your recovery has been so difficult, Arthur. A couple of things come to mind that might be worth your consideration. I’ll just list them, in the hope that one or more may prove useful:

  1. Was your anal sphincter pressure measured? A test called anal manometry can do that.
  2. Have you been tested for an infection, like C. diff?
  3. What is the consistency of your output? The right things to do are different if it’s pure liquid vs. pudding vs. solid.
  4. Have you tried a course of Cipro or Flagyl, in case this is pouchitis?
  5. The dietary salt advice you got sounds a bit careless. It’s true that you shouldn’t restrict salt, but I hope you’re not consuming too much.
  6. During these many bathroom trips, are you emptying a substantial amount of material, or is it small amounts? I’m trying to distinguish between too much output vs. inadequate pouch capacity.
  7. Gas can be challenging for many of us, since farting when away from the toilet is just plain risky. What have you tried to decrease gas?
  8. Has your pouch been looked at? If so, how did it look?

For the first manometry quite awhile back, there was a lot of pain and they couldn't  complete it, and the more recent one I believe was ok. No C. diff. Consistency has been extremely watery until a couple of weeks ago and now is a little thicker - kind of grainy or lumpy with tiny lumnps, but still very thin.  Did not try Cipro or Flagyl.  Yes, I forgot to mention that I was diagnosed with pouchitis and cuffitis.  No I don't really over do it with the salt. 

Usually not emptying a lot each time but maybe once out of the 5 times I get up at night, there's a pretty good release but always feels like a stream of water through a hose, with some "grit", if you will.  I don't think the output quantitiy is a problem.  I was tested for that awhile back when my output was a lot more and they didn't think it was a problem either.

I don't really pass gas much, just a lot of gurgling inside and a periodic release when I'm going to the bathroom, but when it feels like I'm passing gas at night in bed, that's when I have an accident.

Yes, I had 2 pouch scopes and the first one was fine.  The second showed ulcers around the sutures so they prescribed and anti-biotic for that.  The doctor made a comment though that the anal cuff was "either cut too short or I strained too hard".  I looked up the short cuff and sounds like there used to be a problem with that and if too short it caused incontinence, but that they normally completely remove it these days and not a problem because of the new pouch surgery techniques.

Thank you so much for your help!

 

TE Marie posted:

You might add Metamucil, especially after your evening meal. I was instructed by Mayo professionals to take Imodium as an appetizer and Metamucil as dessert. They had me mix it in a little applesauce and not to drink much fluid around then. 

Have you been tested for c.diff? I had it in my j-pouch along with cuffitis and had problems that sound like yours. You didn't mention having spa pouch scope yet. You could have pouchitis too. Those are the main things you should be checked for.

I'm sorry about your work situation. Hopefully you will soon be able to sleep more. That alone could make you fatigued.

Didn't seem like the Metamucil did much for me but good to know.  They always want me to drink a ton of fluid - especially G2 garorade and if its water they want me to put salt in it, but I don't.  I never understood that since I've always had extremely watery stool.

No C. diff.  Had the pouch scope and was diagnosed with pouchitis and cuffitis (see my other reply) .  Well, I'm off to see the doctor now.  Thank you so much!

I use NUUN tablets for hydration.  They don't have sugar and are not a syrupy taste.  A bicyclist on here recommended them to me.  I order them from Amazon, NUUN and ebay - whoever has the best price at that time.  They have other ones that have vitamins and caffeine. I didn't care for the vitamin one and it wasn't for dehydration.  The caffeine one was ok except for caffeine is dehydrating.  Just a suggestion as this way is more economical that G2 etc.

I think the most common surgery is still the double stapled procedure, using a bit of retained rectum to staple the j-pouch to, vs the hand sewn surgery. I wish I'd had the hand sewn one since all of my rectum would have been removed. They aren't too common because of potential incontinence for one thing and it requires greater surgical skill than the double stapled one.

I'm interested in what your doctor says and hope s/he is able to help.   

Arthur Lee Wiseman posted:
Scott F posted:

I’m sorry your recovery has been so difficult, Arthur. A couple of things come to mind that might be worth your consideration. I’ll just list them, in the hope that one or more may prove useful:

  1. Was your anal sphincter pressure measured? A test called anal manometry can do that.
  2. Have you been tested for an infection, like C. diff?
  3. What is the consistency of your output? The right things to do are different if it’s pure liquid vs. pudding vs. solid.
  4. Have you tried a course of Cipro or Flagyl, in case this is pouchitis?
  5. The dietary salt advice you got sounds a bit careless. It’s true that you shouldn’t restrict salt, but I hope you’re not consuming too much.
  6. During these many bathroom trips, are you emptying a substantial amount of material, or is it small amounts? I’m trying to distinguish between too much output vs. inadequate pouch capacity.
  7. Gas can be challenging for many of us, since farting when away from the toilet is just plain risky. What have you tried to decrease gas?
  8. Has your pouch been looked at? If so, how did it look?

For the first manometry quite awhile back, there was a lot of pain and they couldn't  complete it, and the more recent one I believe was ok. No C. diff. Consistency has been extremely watery until a couple of weeks ago and now is a little thicker - kind of grainy or lumpy with tiny lumnps, but still very thin.  Did not try Cipro or Flagyl.  Yes, I forgot to mention that I was diagnosed with pouchitis and cuffitis.  No I don't really over do it with the salt. 

Usually not emptying a lot each time but maybe once out of the 5 times I get up at night, there's a pretty good release but always feels like a stream of water through a hose, with some "grit", if you will.  I don't think the output quantitiy is a problem.  I was tested for that awhile back when my output was a lot more and they didn't think it was a problem either.

I don't really pass gas much, just a lot of gurgling inside and a periodic release when I'm going to the bathroom, but when it feels like I'm passing gas at night in bed, that's when I have an accident.

Yes, I had 2 pouch scopes and the first one was fine.  The second showed ulcers around the sutures so they prescribed and anti-biotic for that.  The doctor made a comment though that the anal cuff was "either cut too short or I strained too hard".  I looked up the short cuff and sounds like there used to be a problem with that and if too short it caused incontinence, but that they normally completely remove it these days and not a problem because of the new pouch surgery techniques.

Thank you so much for your help!

 

Well I had a couple people respond to my initial post and I replied to them, primarily answering their questions as I did above here for Scott, but didn't receive any responses after that.  At any rate here is my update.

I saw my gastro doctor who is a "J-pouch specialist" and he reviewed my CAT scan and said he saw something so we scheduled a manometry test and then an MRI. The manometry test was my third since my last surgery and I flunked all of them, because when they put the balloon in and inflated it, it never felt like I had to defecate at all and he had to stop inflating when the pain was too great.  They seem to think it's still a paradoxial problem and should schedule more physical therapy even though I went through several weeks of physical therapy and they said I was working fine now in that regards.

So I was kind of hoping for something from the MRI but just found out that they did not see anything wrong.  I am more frustrated than ever now and my symptoms are actually getting worse.  I'm having more frequent abdominal pain that I believe is mostly gas because I feel stuff moving around inside me and lots of intestinal noise, and then after a few minutes, the pain goes away. There is also some blood in my liquidy stool sometimes so I definitely need to contact my doctor again.  My blood tests confirmed that my iron levels are very low so looking forward to getting the approval tomorrow for iron infusions, as my fatigue is really bad everyday now - noting that I'm up going to the bathroom 5 or six times a night/morning so don't sleep much and try to nap late morning when I can.  Thank goodness for disposable underwear.  I go through about 6 of those a night and generally 2 or 3 of the pads during the day.

I would greatly appreciate any input that any of you might have at this point as my doctors seem to be running out of ideas.  Thank you. 

Arthur, perhaps you could try adding some soluble fiber, like Metamucil, a couple of times daily. It won’t fix your sphincter, but it might thicken things up enough to help your sphincter deal with it. I’m not sure what’s going on with your sphincter, but it has to be working right for the J-pouch to do its job. Good luck!

Hi Arthur,

I am really sorry that you are going through such a horrible time.  I read your story and it sounds very difficult.  You mentioned that your doctor diagnosed you with pouchitis and cuffitis. Has the inflammation/ulcers gotten under control?  Do you still think that you have active pouchitis?  Many on this site seem to have received Cipro and Flagyl with positive responses, some folks are on those two medicines for a long period of time to combat pouchitis.  Other J-Pouch folks have tried biologic drugs like Humira to help inflammation.  Going to the bathroom 15 times a day seems unsustainable.  Would you ever consider going with a permanent ileostomy?  It could be too early for that decision - but it does seem like you have that as an option down the road if necessary.  Hopefully you can get the pouch under control and you feel better soon.

Having blood in your stool along with an iron deficiency doesn't sound good. Do you kniw what is causing the blood? I suspect cuffitis but this is based on my own experience. That and you are having so much pain. 

Have you tried Super Digestive Enzymes for the gas? There are several brands that make them like Solray. Think of a super better beano. Also coukd you have abdominal adhesions contributing to your pain? 

I know your doctor is a j-pouch specialist but I think s/he needs to refer you to another specialist for a second opinion. I don't know where you live but suggest you go to the Mayo Clinic, where I went, or Cleveland Clinic. 

Have they considered nerve damage at your back door? It sounds very painful 

Add Reply

Likes (0)
Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×