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Hello. I am a 52 year old male, had my colon removed 2-5-2000 due to UC. I had 2 more surgeries for the j-pouch shortly after (3-step).   My surgeon learned at the Cleveland Clinic and has cared for me for the last 21 years and has since retired.... Dr Olaf Johansen was amazing during this time but having said that I had very few problems this entire time...an abscess that came back once...and recently maybe pouchitis....

...fast forward, I have tried 10 day Cipro treatments a couple of times in a few months.....and the most recently Mesalamine Suppositories ...

Again, my surgeon retired and I have been setup for a pouchoscopy but not until April 27th......

For the last several months, I have been basically constantly bloated, can't pass gas as easy as I've always been able to in the past...when I "go", I can never empty.....a little comes out, then it seems like a it just shuts off and no more will come out...night time is the worst as some nights I'll wake up every hour, try to go but not much comes out...get frustrated, go back to bed....repeat in an hour.

I don't think the most recent treatment helps at all (Mesalamine Suppositories)..... the couple 10 day doses of antibiotics seem to help, then back to the same symptoms afterwards....BUT....

the last couple of weeks I've just been dealing with it, drinking a bit of Pepto which seems to maybe help a bit....and what's weird is I'll have a few days of bad bloating, very little output each time...and bad nights and then it'll start improving in its own for a few days...but never gets back to where I've been for 21 years...it's weird because it's almost like it goes through a weekly cycle ....few rough days....few improving days....repeat...strange....

I don't like to just throw meds at it but it's been difficult because I have done great all this time, then when my Dr retires....BAM!!!!!😂😂😂😂

...and Covid, getting into a new Dr  has been rough.... but I'm surviving and I'm extremely thankful for how well my pouch has worked until now...

I joined this forum 20+ years ago but I don't remember my username and my old email account is long gone, lol..  I've still lurked around the forum but haven't posted in yrars...so enough rambling, just thought I would rejoin and see what the other pouchers think while I'm finding a new doctor and chasing this problem...

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If the antibiotics help while you’re taking them (do they get you to baseline?), but stop working when you stop taking them, then it might be that a 10-day course is too short, or you need to add an additional antibiotic or try a different one. If none of that works it’s possible that the pouchitis has become chronic, requiring ongoing treatment (antibiotics or biologics).

Is your appointment with a surgeon or a gastroenterologist? I’d tend to choose a gastroenterologist at this stage.

Good luck!

I would always combine Cipro and metronidazone for optimum efficiency with pouchitis. Things should improve a lot within 1...2 days and a 5...6 days course may already be enough.

Do you also have abdominal pain when you have many BM and cannot empty? Then it may also be a partial blockage. Some days with fluid nutrition only and drinking a lot of water for flushing the bowel could be helpful in that case.

Thank you for the responses. I'll try and cover them here.

As far as doctors, my surgeon took care of me for 21 years and my new doctor that I haven't seen yet is a surgeon....pretty new in practice as well so I may rethink it? I wondered if I'd be better off with a GI now. I'll consider my options and try to re-evaluate.

Also, now that I'm rethinking the last few months, when I was in the Cipro, it seemed to make my stool thicker and less bloated and emptying would be easier but nope, I haven't been back to baseline for several months....

Again, that's what's weird...now I've been chasing this without a scope due to the Dr retiring, Covid, etc...

..but it seems like now that I think about it more that even the antibiotics never got me back to baseline...just thicker stools and less gas/bloating...

And yes, I have abdominal pain. It's not constant and severe but I have tender areas if I press around on my gurgling stomach...

In fact in a few of my bad days when I felt I had to go...or else...I pressed and massaged on these tender areaa and I was able to pass stool this way...something "let loose". Does that make any sense.



I will try to get in earlier and also give my old (awesome) GI a call. He's still practicing. I used him with my UC before my surgeries and for whatever reason stuck with my surgeon afterwards but again I've been blessed with very few problems all these years.

I actually tried to contact my GI with a phone call and left a pretty lengthy voice mail describing my issues and never did receive a call back.....that's when I called my retired surgeons number and she talked with a new doctor and he has prescribed Cipro twice and I currently have Mesalamine Suppositories and  an upcoming scope.......April 27th

Thanks for the updates...one last thing...my consistency keeps changing somewhat but for a couple of days my output was pure liquid...like water but it didn't make emptying any easier...if that means anything...

And I've always taken 2-4 Imodium a day but have cut down during this as I thought I was constipated somehow originally but I don't think that is the case....



I'm leaning towards blockage of some sort, hopefully I can manage this until my scope date if nothing earlier comes up...

Ah! I have been having the same feeling exactly as you describe. I am reluctant to go to a GI because I've done so well since 1993 if you can believe it. Now I'm 50 and it's all going to hell (not really, but feels like it). This week I did this and it helped after an initial 24 hour period of the worst ever gas (not painful, just plentiful and loud). Thank god I'm working from home right now.

  1. Benefiber 2X per day (1 tsp/ half glass of water an hour before breakfast and the same one hour before dinner). Do not use Metamucil - it's a different type of fiber and has no prebiotic.
  2. Wuchaseng (Chinese herb is otherwise known as Siberian Ginseng). 4 of these 3x/day after meals. You must get this Chinese version from Chinatown if your city has a Chinatown or on the internet. Drugstore "Siberian Ginseng" is less than 5% the strength of the Chinese version.
  3. Reduce sugar consumption, including alcohol, to nearly none.

With these, I've been having a really good week and only getting up once at night as opposed to 3-4x. Also, finally feeling like the pouch is empty.

If you'd like a link to the ginseng, let me know.

Take care,

Jenn

Hi,
I’ve just read this post and I can’t believe how  my problem is very similar. I had a one stage j-pouch, as I have FAP, that was back in 1999.

I have  even very lucky so far with my pouch, but lately I’m having the exact same problem you described. I too, am at a loss at what to do.

How long are j-pouches meant to last?

Mandy

@mandyc posted:

Hi,
I’ve just read this post and I can’t believe how  my problem is very similar. I had a one stage j-pouch, as I have FAP, that was back in 1999.

I have  even very lucky so far with my pouch, but lately I’m having the exact same problem you described. I too, am at a loss at what to do.

How long are j-pouches meant to last?

Mandy

A J-pouch can easily last a lifetime. That doesn’t mean that it will always behave the same, or that issues will never crop up.

I am trying to get in to my old GI and may get in sooner for a scope but either way I will keep this updated to hopefully help others.....

....something just hit me which may be way out in left field...but I did catch the Covid back in December...only had very mild flu-like symptoms...I did lose my smell and taste for a couple of weeks but they came back 100%.

Anyway......could there possibly something tied to this stupid virus? Especially since a few of us here are long time pouchers having problems creep up recently...Have you others having similar symptoms been exposed to Covid?

May be nothing...but I was exposed December 24th to Covid and am thinking my problems started about that time......just a thought, I've heard some strange symptoms with this virus....anyone?

Last edited by Doug Kenipe
@mandyc posted:

Hi,
I’ve just read this post and I can’t believe how  my problem is very similar. I had a one stage j-pouch, as I have FAP, that was back in 1999.

I have  even very lucky so far with my pouch, but lately I’m having the exact same problem you described. I too, am at a loss at what to do.

How long are j-pouches meant to last?

Mandy

Each case is different. Some people on here have had there pouch for 40+ years and some people pouches failed in under a few months. Each case is different unfortunately.

@Doug Kenipe posted:

I am trying to get in to my old GI and may get in sooner for a scope but either way I will keep this updated to hopefully help others.....

....something just hit me which may be way out in left field...but I did catch the Covid back in December...only had very mild flu-like symptoms...I did lose my smell and taste for a couple of weeks but they came back 100%.

Anyway......could there possibly something tied to this stupid virus? Especially since a few of us here are long time pouchers having problems creep up recently...Have you others having similar symptoms been exposed to Covid?

May be nothing...but I was exposed December 24th to Covid and am thinking my problems started about that time......just a thought, I've heard some strange symptoms with this virus....anyone?

I would not be surprised.  Covid dos a lot of damage.

UPDATE: I was able to re-establish myself with my pre-surgery GI doctor for an earlier Pouchoscopy. I just finished it and here are the results.

Findings:

1) Circumferential fibrosis and aphthous ulcers in the terminal ileum at 40 cm compatible with IBD. (Biopsy)

2) Aphthous ulcers in the proximal J pouch at ileal J pouch anastomosis compatible with IBD. (biopsy)

3) Normal mucosa in the J pouch

4) Mild stenosis in the J pouch - anal anastomosis



So, waiting for biopsies but in the mean time I have to set up a CT enterography ASAP to see the health of my small intestine.

As a refresher, my colon was removed due to severe ulcerative colitis and toxic megacolon in February of 2000. I have been pretty well problem free for 21 years....now it sounds like I may potentially have Chrons...not what I wanted to hear.

He said I may need to have anal anastomotic dilation as well but wants the colorectal side to do that as/if needed. He referred me to a good one since mine retired.

Hope this helps anyone else following......and any comments, tips, etc... fire away...

Last edited by Doug Kenipe

I’m glad you’ve established a care team, Doug. It does sound like Crohn’s is a real possibility, since 40 cm seems like it might be too far up the ileum to be pouch-associated. The good news is that there is a broad set of effective IBD medications, one of which may turn out to be just exactly right for you. Good luck!

Thanks for posting the results Doug. I have been diagnosed with Crohns after my colectomy and pouch surgeries so the symptoms you're experiencing may just be that - but be assured this can be overcome because even though I was diagnosed with Crohns 25 years ago I've had no issues with it for 23 of those years. I think my old body just isn't working as well as it used to.

My biopsies came back nonspecific IBD/ pouchitis/severe inflammation....

I am still trying to get setup for a CT scan and the dialation....

This doctor call call back crap leaves alot to be desired...not too thrilled with that. I guess the days of talking to a real person are gone...they normally call back on the same day but when you're dealing with multiple doctors, you can lose 2 or 3 days easily just playing phone tag...I HATE it!!!

He has also ordered more lab test called Promethius SGI diagnostics which I'm not sure what that is

@Doug Kenipe posted:

My biopsies came back nonspecific IBD/ pouchitis/severe inflammation....

I am still trying to get setup for a CT scan and the dialation....

This doctor call call back crap leaves alot to be desired...not too thrilled with that. I guess the days of talking to a real person are gone...they normally call back on the same day but when you're dealing with multiple doctors, you can lose 2 or 3 days easily just playing phone tag...I HATE it!!!

He has also ordered more lab test called Promethius SGI diagnostics which I'm not sure what that is

Prometheus test is a blood test that determines if you have: Crohns, Colitis, or inconclusive. A lot of people do not believe in the test but some do. I believe in it, I would get it done .

It’s unfortunately common to have ‘nonspecific’ IBD diagnosed later, after initial dx is given with more conviction. IBD is probably a spectrum of disease, not the two distinct entities we’re used to talking about. Usually the distinction is supposed to be ‘geographic’: colon only, inflamed mucosa only=UC. Anything outside colon or inflamed full thickness bowel wall=Crohn’s. But it doesn’t always work that way; there’s ‘backwash ileitis’ and all kinds of other in-between weird stuff. And pathology isn’t an exact science until you’re on the slab.

I don’t think it matters what it ends up being called, as others have said. Treatment is based on symptoms and the presence of lesions, not so much their location (unless they were only in the pouch—then you often start with suppositories and foams instead of systemic meds).

Your scope gave you good reasons for the symptoms you’ve been experiencing, and yes, COVID’s immune hijacking of the body extends to the GI tract. Treat the symptoms and keep on living, regardless of what they call it, because there isn’t any benefit to doing otherwise. A good gastroenterologist can be a lifeline; sounds like you’ve got one. So glad you did well for so long; it sounds like you can again, with the right help.

Best of luck!

The Prometheus test is just a proprietary IBD serology assay. They claim to have the best algorithms for IBD diagnostics, but certainly not foolproof. Even if you wind up with a Crohn’s or indeterminate diagnosis, it would not change anything, because the treatment is pretty much the same across the spectrum. But, it does make it easier to get past some insurance roadblocks for biologics approval if you have a Crohn’s diagnosis. The main thing to know is that it does not mean they remove your pouch because of it. It might mean you have a higher risk for pouch failure, but that does not actually change anything for you.

Jan

Sounds exactly like me the past year. I had a horrible year with pouchitis and all the antibiotics didn't work. My doctor put me on entyvio, I get infusions every 2 months and for a few months it Didn't do nothing... After my last infusion in march everything has been so good! They ded an endoscopy this month to check, and all is clear and healthy! Feel better than I have in a while.  I have had my j-pouch since 2015. Even my stool has thickened and I need less toilet visits. I occasionally take imodium and metamucil when I feel I need it. For a while I thought I had to go back to an ileostomy permanently, and that is stressfull.

@Stardust posted:

Sounds exactly like me the past year. I had a horrible year with pouchitis and all the antibiotics didn't work. My doctor put me on entyvio, I get infusions every 2 months and for a few months it Didn't do nothing... After my last infusion in march everything has been so good! They ded an endoscopy this month to check, and all is clear and healthy! Feel better than I have in a while.  I have had my j-pouch since 2015. Even my stool has thickened and I need less toilet visits. I occasionally take imodium and metamucil when I feel I need it. For a while I thought I had to go back to an ileostomy permanently, and that is stressfull.

So happy you are better

                      ***UPDATE***



I have my CT scan Monday morning...don't know how long it'll take to get the results but I'm actually feeling much better.

Here's the thing....I have a friend at work who has diverticulitis ( don't know if that's spelled right) and has had several inches of his colon removed.

Anyway, he gave me a link to a probiotic he had just started taking a few weeks prior to me talking to him about my problems. It's actually a prebiotic, probiotic, and postbiotic to promote gut health supposedly...

It's not cheap but he really talked it up that it was really helping him with the gas/bloating, etc...and I decided to give it a try. It's actually a formula from a prior heart surgeon who now sells diet/ gut health supplements.....Dr Gundry.

Now....I started taking them last Saturday (today is Saturday) so I have been taking them for a week. Well, I'm here to tell you that almost ALL of my gas and bloating are gone!!! I feel so much better...almost to the point of feeling back to baseline...seriously!!!!

Now, I had my pouchoscopy a few days before I decided to try the pre/pro/postbiotic and I had to do the clear liquid diet the day before the test and a dose of Miralax/Gatorade and it REALLY cleaned me out....I felt somewhat better after that ...so maybe a combination of both?

Also, my GI said I was pretty strictured and he had to use a smaller scope than he normally uses? ...so maybe it was a combination of these that "opened me up".

Anyway, just wanted to keep the post updated, my CT scan is Monday....but for right now, I am a believer in this Dr Gundry formula.

It's called BIO COMPLETE 3...anyone here use his supplements? I guess his research is controversial but he was a pretty well known heart surgeon I guess before he started researching gut health...

Last edited by Doug Kenipe
@Doug Kenipe posted:

                      ***UPDATE***



I have my CT scan tomorrow (Monday) morning...don't know how long it'll take to get the results but I'm actually feeling much better.

Here's the thing....I have a friend at work who has diverticulitis ( don't know if that's spelled right) and has had several inches of his colon removed.

Anyway, he gave me a link to a probiotic he had just started taking a few weeks prior to me talking to him about my problems. It's actually a prebiotic, probiotic, and postbiotic to promote gut health supposedly...

It's not cheap but he really talked it up that it was really helping him with the gas/bloating, etc...and I decided to give it a try. It's actually a formula from a prior heart surgeon who now sells diet/ gut health supplements.....Dr Gundry.

Now....I started taking them last Saturday (today is Saturday) so I have been taking them for a week. Well, I'm here to tell you that almost ALL of my gas and bloating are gone!!! I feel so much better...almost to the point of feeling back to baseline...seriously!!!!

Now, I had my pouchoscopy a few days before I decided to try the pre/pro/postbiotic and I had to do the clear liquid diet the day before the test and a dose of Miralax/Gatorade and it REALLY cleaned me out....I felt somewhat better after that ...so maybe a combination of both?

Also, my GI said I was pretty strictured and he had to use a smaller scope than he normally uses? ...so maybe it was a combination of these that "opened me up".

Anyway, just wanted to keep the post updated, my CT scan is tomorrow....but for right now, I am a believer in this Dr Gundry formula.

It's called BIO COMPLETE 3...anyone here use his supplements? I guess his research is controversial but he was a pretty well known heart surgeon I guess before he started researching gut health...

Thank-you for the update hon!!! glad you are are doing better! I never heard of A post probiotic, that is pretty cool! thanks for sharing and keep us updated

  **********Another Update**********



Well, I got my results back from my CT Scan and it came back normal. Woo hoo!!! I had my lab work done on the same day but haven't heard the results yet for my blood work.

I see my GI again on June 2nd. He still wants me to get the dialation done and referred me to a surgeon where my retired surgeon worked.

They've been a pain in the butt to get something set up. I finally just got an appointment to see him on June 2 (the same day I see my GI)....just for an office visit...who knows how long the dialation will take.

Finding a new doctor has been a real "pain in the ass", lmao.

Who would have guessed that after 21 years, my doctor would retire....and only then would I start having problems.....

I understand these waiting games for a new doctor but come on...my doc retired from the same group...and I have a referral from my GI...sometimes you feel like they could care less how bad you're feeling and just say..., "We'll see you in a couple of months." Lol...good times...

Well, everything is going to be ok I believe. My CT results are a great sign. Again, I am feeling much better on the probiotic I'm taking...not baseline...but close.

Cheers!!!!

Last edited by Doug Kenipe

*****. Latest Update*****

Well, I'm still struggling with inflammation, hard to pass stool, etc.... The probiotics I have been taking have really cut down the gas/bloating...but the underlying problem still remains.

Again, I see the new (mine retired) colorectal surgeon about the dialation June 2...couldn't get in any sooner.....



But, my GI wants me to consider a biologic, and he's leaning towards Entyvio...

My blood work leans towards Crohns the way he interpreted it to me. He started me on 30mg daily of prednisone....long story short...my body HATED prednisone back when I had my colon.

I was on large doses however and ended up with toxic megacolon before I eventually lost my colon.... I have AVN in my left hip due to the steroids as well...not fun...so.....not happy to be on prednisone in the least.

So, I have to decide whether to start a biologic. He thinks doing nothing will not turn out well...my inflammation is severe...but limited to the pouch it seems???

Any thoughts on what you would do????

I thought I beat this 20 years ago...I think it can still be managed but I'd rather not lose my pouch...sound like biologic time??? Again, he's recommending Entyvio.

I always have biologics in mind as the next step I would take if my current treatment stopped working or caused significant problems. If I were dealing with the inflammation you describe I think I’d start biologics promptly. You’ll still have to manage whatever narrowings have developed (probably from the inflammation), but finding an effective biologic medication should prevent additional (and potentially devastating) narrowing.

If you were making a list of pros and cons, what reasons would you list for delaying (or declining) a biologic?

Last edited by Scott F

Thank you Scott. I am leaning towards starting one soon. My GI has already done lots of blood work, x-rays, etc as baseline before starting one. He wants me to read up on them in the mean time.

I guess my fear is the fear of the unknown....these weren't around 20 years ago...at least I don't remember them or know much about them...I "beat" UC through surgery and have lived a great life with my pouch with really only an abscess that came back once...that's really it....yep, I've had bad days here and there but thought my days on maintenance therapy were over?

So really, it's just having them recommended to me after all these years of being pretty healthy and "out of the blue" being sick again????

So the cons would be possible side effects, how my body reacts to them??....

I know basing my fear off of how the dreaded prednisone treated  me probably isn't fair but that's really it....

Last edited by Doug Kenipe

Although I never developed AVN, I also remain traumatized by prednisone. For me that translates into being *more* receptive to biologics, mainly as a way to reduce/eliminate any potential need for prednisone. Body parts (including the immune system) can malfunction over time. FWIW, as time passes and our systems age we’re all likely to need maintenance therapy for an increasing number of things. I’m glad you had such a long run of good health without medication.

@Doug Kenipe posted:

*****. Latest Update*****

Well, I'm still struggling with inflammation, hard to pass stool, etc.... The probiotics I have been taking have really cut down the gas/bloating...but the underlying problem still remains.

Again, I see the new (mine retired) colorectal surgeon about the dialation June 2...couldn't get in any sooner.....



But, my GI wants me to consider a biologic, and he's leaning towards Entyvio...

My blood work leans towards Crohns the way he interpreted it to me. He started me on 30mg daily of prednisone....long story short...my body HATED prednisone back when I had my colon.

I was on large doses however and ended up with toxic megacolon before I eventually lost my colon.... I have AVN in my left hip due to the steroids as well...not fun...so.....not happy to be on prednisone in the least.

So, I have to decide whether to start a biologic. He thinks doing nothing will not turn out well...my inflammation is severe...but limited to the pouch it seems???

Any thoughts on what you would do????

I thought I beat this 20 years ago...I think it can still be managed but I'd rather not lose my pouch...sound like biologic time??? Again, he's recommending Entyvio.

I would try biologics for sure.

Doug, I would try Entocort (budesonide) instead of prednisone, that has a mainly local effect in the bowel. I take it for 7 years now without feeling side effects, usually at a dosage of 2x3 mg per day. It does not heal inflammation but only suppresses it partially.

If that doesn't help enough biologics are worth trying.

For me antibiotics are the most effective treatment. At the moment I take metronidazone 400 mg and Cipro 250 mg at late evening, about 2 hours after the evening meal. For the first 3 days of the treatment I take them in the morning also.

I add a probiotic med (and also yogurt) in the morning with the vague hope of avoiding the overgrowth of "bad" bacteria (like c. diff) that may get resistant to the antibiotics during a longer treatment.

Presumably, the prednisone is not for the long term. The dose is high-ish, but not too bad considering what is going on with you.

I was in a similar situation with serious chronic pouchitis and I was on a rotating antibiotic regimen with “good enough” effectiveness. I was already on a biologic for my enteropathic arthritis (I had gone through 5 of them), but I got this ulcerating pouchitis anyway. My GI recommended Remicade infusions with low dose oral Imuran. My pouchitis healed and I did not need any more antibiotics. That was about 5 years ago and I am still doing well. I still have joint pain and spinal issues, but I am satisfied with how my life is going.

The only reason I did not want the Remicade was because of the hassle of the infusions and the fear of a reaction. But, I just schedule my life around those infusions and consider them my “spa” day!

So, count me in on team biologics!

Jan

Thank you Jan. It's nice "seeing another familiar face". I remember your name and responses helping so many years ago. I have "lurked" here somewhat over the years but haven't logged in in years due to forgetting my credentials and no longer having access to my old email to retrieve them.

I "re-enlisted"  for some guidance on my new struggles recently.

Even though I have been dormant on here...and healthy overall....I appreciate all who take their time to respond here. This site is awesome!! I still kind of feel a connection to each and every one of you.



As for my issues, the Prednisone seems to be settling down the inflammation ....waiting for the colorectal appointment to take care of my stenosis.....and I'm pretty sure I am going to try the Entyvio....I will keep this post updated when things change. Again, thank you all!!!

@Doug Kenipe posted:

Thank you Jan. It's nice "seeing another familiar face". I remember your name and responses helping so many years ago. I have "lurked" here somewhat over the years but haven't logged in in years due to forgetting my credentials and no longer having access to my old email to retrieve them.

I "re-enlisted"  for some guidance on my new struggles recently.

Even though I have been dormant on here...and healthy overall....I appreciate all who take their time to respond here. This site is awesome!! I still kind of feel a connection to each and every one of you.



As for my issues, the Prednisone seems to be settling down the inflammation ....waiting for the colorectal appointment to take care of my stenosis.....and I'm pretty sure I am going to try the Entyvio....I will keep this post updated when things change. Again, thank you all!!!

Your welcome, we love updates

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