34 y/o j pouch failing! Surgical options?

   I am 53 y/o,  34 years now with j-pouch with 16 BM's with urgency per day as primary problem.  I realize I've had a pretty good long run with this j-pouch.  Pouchitis is apparently not treatable at this point after many years of antibiotics, etc.     No real pain issues but doc now tells me the ongoing inflammation in pouch is increasing CA risk.    Tired of searching for next bathroom!     Considering surgical options now and am looking for any advice you all have.   I understand j pouch removal can be very difficult.    Also, I'm told by my GI doc  that a new j pouch can be built possibly.   I'm open to all options at this point in my life, even ileostomy bag if it's best and safest.   I'm concerned about more loss of small bowel as I already have dehydration issues.   I am very active working out or running 8-10 hrs per week.      Thank you so much for your help!

Original Post

A J-pouch really doesn’t use up very much small bowel, and I don’t think a new pouch would change your hydration very much. I also don’t think the CA risk is very high, because there’s so little rectal cuff. The risk definitely is isn’t zero, but that alone wouldn’t push me to pouch removal. OTOH your frequency and urgency sounds quite unpleasant, kind of like UC, and well worth fixing.

The first question is whether you’ve exhausted your medical treatment options. Some folks here with chronic pouchitis have had excellent results switching from antibiotics to one of the biologic agents, like Humira or Cimzia. Have you tried any of those, or at least discussed them with your doctor? Has C. Diff been tested for and ruled out? That could easily be misunderstood as antibiotic resistance, and if your antibiotic is Cipro the C. DIff just loves to colonize a gut with Cipro in it. Finally, have you tried high-dose probiotics? I get a lot of help from a maximum dose of VSL #3 DS (4 packets/day).

It can indeed be hard to remove a pouch, because it attaches to what’s next to it, but a skilled surgeon who’s done a bunch of pouch removals should’t have a problem. I honestly don’t know if a new pouch would have the same problems. I think of replacement pouches as great fixes for structural problems, but not necessarily for pouchitis. Your doctor may have better information. A K-pouch or BCIR might have a better chance of success in your case.

Good luck!

Thanks so much Scott for your response.    Had minor pouchitis issues over the early years handled by Flagyl but I began to get really nauseated with Flagyl  more and more so over the years so they tried Cipro with short term  response.   I had concerns with Cipro long term use with all the side effects.   Haven't used that much VSL before taking just 2 capsules per day which may be not enough.    No one has discussed Biologic agents with me so far.   I will inquire.   Are you using 4 packets VSL on a continuous basis?    Thanks again!

Sean

Just a note:   I was disconnected nearly a year ago with an end ileo, and do not feel that the additional loss of those small intestines have been a problem as far as dehydration goes.  My ileo output is probably "normal" for an ileo - thick or thin,  voluminous or not, depending on what I eat.  Hope you find an answer that works well for you.

I really appreciate the help guys/gals.   You kind of feel like you are the only one out there til you see a forum like this.    I see my problems could be much worse.    Since my main problem is stool frequency, any ideas about how to help control that.   Metamucil helps to some degree and also helps with control painful BM's.   Another great idea I got from some great person on this sight.    Much gratitude. 

I take the equivalent of 32 capsules of VSL daily. I have found that the antibiotics work just as well for me taken once a day as twice a day. That creates a longer interval during which the VSL has a better chance of survival against the antibiotic onslaught.

 Thanks again for your input Scott. Did you have an opinion on antibiotic enemas or suppositories? I realize that some of the antibotic would enter the body through the pouch but I was hoping for less side effects. How many BMs per day do you have with your situation ?  Thanks again.

Flagyl suppositories have sometimes been used rectally, and they might work. Plenty will be absorbed, but side effects like nausea might certainly be reduced. The suppositories are designed for vaginal use. Have you really found the lowest effective dose? 500 mg bid would probably nauseate lots of people.

So far I have had extremely good results, but I now use Cipro, Flagyl, and VSL every day, along with psyllium. I have 4-5 BMs daily.

At bedtime I take 500 mg Cipro and 250 mg Flagyl. A while back I kept slowly lowering each one until failure, and then stabilized on the lowest effective dose. The once-daily dose is easier to space away from the VSL.

I take the VSL DS packets in Greek yogurt, two at breakfast and two before dinner. I’d need 32 capsules per day to get that dose.

Hi Sean,

My j-pouch was removed after 5+ years.  I had chronic cuffitis, pouchitis and other problems.  I religiously used VSL#3 DS,  canasa suppositories, rotated antibiotics and had numerous dilations during scopes and the last one done surgically.  I couldn't take Cipro or Flagyl due to bad side effects, for example I got C-Diff from Cipro way back when I still had my colon.

I didn't try biologics.  My cuffitis kept generating scarring at the base of my j-pouch and I had significant narrowing in the anal canal and had to give myself enemas in order to empty it.  I should have had it removed 18 months before I did.  I was very apprehensive of going back to an ileostomy. I had a terrible time with my temp ileostomy in-between the j-pouch surgeries.  Things were so bad I relied on people here that explained how much better an permanent ileo was.

I'm doing much better.  The recovery was much easier than after the j-pouch surgeries. I had some minor issues which were nothing compared to after the initial surgeries.  The healing process from the removal of my j-pouch and anal canal did necessitate me using waffle like cushions while sitting for months after the surgery.  I couldn't ride a bike for example. 

Have you tried Loperamide, prescription or OTC, in addition to the metamucil?   That might help to slow up your system more.

I am constantly vigil in my fluid intake.  Dehydration is more of an issue than when I had my j-pouch. 

Hopefully you've gotten some ideas to try before you make the big decision to have it removed. I was first diverted to a permanent ileostomy before having the j-pouch removed.  The hopes were that my j-pouch would heal without having waste flowing through it.  It didn't and 6 months later it was removed. Both of these surgeries were at the Mayo Clinic.  If you are going to have it removed please make sure your surgeon is skilled in doing so.  I have witnessed people having problems after the surgery due to surgical error. There was a woman at Mayo's when I was having my surgery that was there for corrective surgery for a botched removal. My surgeon said it is a much more complicated surgery for surgeons than the initial surgeries. 

i echo te marie:

although i differ from marie in that i got a k pouch (and am very happy to have done so) i waited woefully too long.  at least 10 years too long.  wasted a decade of my life, although let me proudly proclaim i completed a masters degree, thesis and all, during this time.

an experienced surgeon is essential.  if you need to travel to do so, do it.  you may need to vet docs.  do so.  get refs from others on this site.

this site saved me--both physically and mentally.  all of you out there are family and have been there for me throughout.  use us for support.  i'm doing quite well now, but i still check in and like to give back for all the support given to me.  keep us posted please.  janet

 Thank you so much guys for your input. The Flagyl worked for me for years to control pouchitis but I slowly developed more and more bad side effects from the drug. I asked my doctor about Flagyl suppositories but he will not prescribe that since it is not typically used for that. Somebody on the site gave me the idea of trying Flagyl enemas and I’ve had some good early success with that with minimal side effects. I think I would have trouble getting a doctor to go on board with that idea. I’ve tried loperamide and my body just adapt to it quickly.I appreciate your help.

You could probably find a doc to go along with it, but some searching and patience might be needed. Flagyl *rectal* suppositories look like they are used in the UK. As near as I can tell the only suppositories in the US are intended for vaginal use, and I don’t know enough pharmacology to know if they are likely to be equivalent to the UK suppositories, or at least close enough. From my reading the Flagyl is fully absorbed into the blood with rectal administration, so any systemic side effects (e.g. peripheral neuropathy) are likely to be identical to oral administration. The nausea, though, might well be eliminated.

I’m a bit concerned about your home-brew enemas. I have no idea what you’re suspending the Flagyl in, and I have no idea what you *should* be suspending the Flagyl in. You may be getting wildly inconsistent doses if the Flagyl is settling out of suspension.

I realize that your doc may have suffered a failure of imagination, but you’re skipping over a bunch of simpler, better understood things to try. Have you tried Xifaxan, for example? Some people get great results (and often no side effects) with it.

 I think the amoxicillin is in the same family as Augmentin, which I had used and found very successful. Well, until it wasn’t. I had also used  Levaquin, which was successful until I developed extreme tendinitis —extreme as in terribly painful and long lasting. I’m not the only one so be very careful with that medication. That said some people can take it.   in the end I got a K pouch and I am very very happy that I did. Done with antibiotics and all the J pouch problems. But understandably that’s not for everybody 

 Thank you for the input. I’m curious if people develop pouchitis with a K pouch. My concern is pouchitis is difficult to treat with me because of antibiotic resistance and intolerance. So if I get pouchitis again with the new pouch either K pouch or J pouch, I have the same problem essentially. Any thoughts? Thanks again. 

 you can get pouchitis with the K.   i’ve had my pouch for three years now and no pouchitis nor SIBO.  I had persistent pouchitis with the J for 15 years.   have not taken any antibiotic for the better part of three years. It’s wonderful.

I'm just going to throw some alternative options into the ring.

Colloidal Silver (like Sovereign Silver) you can't develop a resistance to CS. CS enemas are even more effective.

Fast - I once got pouchitis really bad due to sugar, I stopped eating all food except Greek yoghurt , VSL #3 and Indian Triphala berry powder, within 3 days my pouch was working brilliantly, maybe the best ever. If you can fast and your not under weight I highly recommend it.

Diet - cut out all sugar/starch/dairy/alcohol/caffeine

Eat simple like Paleo , but alter the diet to what agrees with you.

 

seanbo1001 posted:

   I am 53 y/o,  34 years now with j-pouch with 16 BM's with urgency per day as primary problem.  I realize I've had a pretty good long run with this j-pouch.  Pouchitis is apparently not treatable at this point after many years of antibiotics, etc.     No real pain issues but doc now tells me the ongoing inflammation in pouch is increasing CA risk.    Tired of searching for next bathroom!     Considering surgical options now and am looking for any advice you all have.   I understand j pouch removal can be very difficult.    Also, I'm told by my GI doc  that a new j pouch can be built possibly.   I'm open to all options at this point in my life, even ileostomy bag if it's best and safest.   I'm concerned about more loss of small bowel as I already have dehydration issues.   I am very active working out or running 8-10 hrs per week.      Thank you so much for your help!

How long did you get with your j-pouch when you could functional normally (I.e, work without running to the bathroom 24-7, going boating etc)? 

Having a good head on ones boat is critical to happiness in life. At least when one has a J or K pouch.  Then again that everybody loves boating. As we say on the site everybody is different

 I agree that refined sugars and simple carbs reduce the Pouchitis flares, but unfortunately cannot eliminate pouchitis.   even with four packets of VSL a day  and no refined sugar I was unable to get the better of my pouchitis. For some bizarre reason shellfish also caused pouchitis flares for me,  or at least scallops did.  janet

I did quite well with J pouch early on but I remember being treated successfully with Flagyl in the first 3 years even.    I'm afraid of same thing happening with k pouch.    Also very concerned with dehydration issues as I've had 3 DVT's and I exercise a lot sweating profusely.    Thanks for the input.    I've really cleaned up my diet but haven't completely cut out refined sugars.   No alcohol but i like my coffee.    How many out there have had success with super high dose VSL?   I've been on 2-3 capsules only per day which I realize is low.    

my understanding of how VSL works is that one needs to be in remission.  I was using four packets a day and even with diet couldn’t control the pouchitis.  was never able to get off of antibiotics and subsequently became refractory. that lead to incontinence and a nasty spiral into social exclusion, at least for a bit. 

after the K i started to have problems with dehydration, but am now figuring out how to deal with it better.   I take sulfur tabs.

Once I had cut out refined sugar I never went back. It’s been 10 years. Can’t tolerate the taste. Also when eliminated and no longer see blood in your stool you have positive reinforcement for not consuming any.   for me caffeine was not a trigger. As I said scallops were.    keep experimenting and find out what works for you. Have you tried Augmentin for an antibiotic? You might be able to switch onto it for a while and give Flagyl a break. That said, long-term antibiotics – – despite my doctor is keeping me on them for 15 years – – is not healthy in my opinion. 

 Yes I can’t imagine being on antibiotics continuously could be a good idea in the long run. I have tried Augmentin with some success short term. Yes those high doses of VSL are quite expensive so I’d like to know that they are working. I don’t keep experimenting with different things right now. Thanks again for your help

Urgency and frequency are more typical of pouchitis than pain or bleeding.

VSL has discount a discount program on their web site, and some insurance companies cover it (or can be persuaded to cover it).

It’s best not to invent vague fears about medical interventions. Long-term antibiotics can have side effects, and the side effects sometimes require changing to a different antibiotic or stopping the medication. Neverthetheless, long-term antibiotics (when side effects permit) are much better than urgency and frequency.

CTB, if your insurance actually covers VSL then that’s a pretty big benefit. If your insurance doesn’t cover it then the pharmacy can run the prescription without including your insurance, and the discount card should work fine. You are under no obligation to use your insurance for any particular prescription, especially when it’s worthless. 

Many of the discount cards out there do specifically exclude Tricare, Medicare, and Medicaid. I don’t see such an exclusion on the VSL site, but I may have missed it.

My insurance doesn't cover it.  I see what you mean about just paying out of pocket instead of using insurance to cover it.  Right now I'm able to do fine on Align, but it's good to keep up with info. on VSL if I get to that point.  Even when I become Medicare eligible, my prescriptions would be covered by Tricare.  They might be more difficult to convince to cover it.  

So glad to read all these comments. My j pouch is most likely failing due to anal stricture. Just had a surgical dilation but doctor here not very optimistic.  Headed to Cleveland as soon as I can get in. I have had my pouch for 25years

Possibly try tinidazole it is in the same family as flagyl but my son tolerated it a bit better. Pepto bismol can reduce frequency and has antibiotic properties as a bonus. If it ever comes to having a pouch redo and you are willing to travel consder Dr Remzi at nyu langone. 

Strictures can be repeatedly dilated  under anesthesia. My husband self dilated for years until the stricture finally stayed open. 

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