Chronic pouchitis for 16 years

Steve,

Your history and description of your symptoms and the described areas of inflammation is very similar to mine. My treatment was a bit different. I was on antibiotics continuously for well over 20 years. I rotated cipro, flagyl, xifaxin, augmentin, keflex, tinidaziole and other antibiotics throughout that period of time. Eventually, although the quality of life was good, the area of inflammation increased. I went on Remicade in 2015 and had significant improvement of the pouch inflammation. And, to answer your question, because of Remicade, I eventually was able to wean off antibiotics COMPLETELY, after being on them continuously with no break for over 20 years. I am the guinea pig on this. However I only was able to get off them by going on Remicade.

Why haven't you been put on Remicade, Entyvio, Stelara or some other biological drug?

There are some people who can get off antibiotics without inflammation returning and some who can't.  I would suggest yours is antibiotic dependent chronic refractory pouchitis/ileitis and you may need to be on a biological drug.

The ileitis you describe is consistent with backsplash stool, although I am sure you know this.

Hello CT,

thanks for your answer.

The immunosuppressive drugs you mention - I've been on all of them and on azathioprine and Xelianz also, none of them made a significant difference to me. Luckily there were mostly no harmful side effects also, except some fever and bad blood levels with azathioprine.

My GI doc says at the moment there is nothing else worth a try and that I should wait for a new drug to come along.

There have always been long terms in those 16 years (let alone the years of colitis) when I was without any drugs except supplements and iron / B12 infusions, as I could get along more or less well with the constant inflammation. But of course I know that this can not be a permanent solution. On the other hand I'm neither convinced that immunosuppressive drugs are a sustainable way to go.

I had a couple of examinations at hospital last year and the final recommendation was to have a surgery for ileostomy (non-permanent). That's why I decided to do a longer term antibiotics therapy first, as a surgery may always have unwanted side effects.

What you describe as backsplash stool is a jamming because the pouch is too small to hold all stool, I guess. That's the same picture I have and probably the reason why bacteria can grow at the end of the ileum, where they shouldn't under normal conditions. I will give cholestyramine a try when I go off antibiotics again in some days. Transformed bile acid may cause inflammatory effects, but it may as well be the bacteria themselves and an immune reaction because of a weakened bowels mucosa.

I hope you'll have a good time with Remicade further on and that inflammation doesn't return.

Steve

Backsplash stool is due to there being no backsplash valve in the J Pouch as there is in the colon. That means whenever you apply muscular pressure to the J Pouch so as to have a bowel movement stool goes in 2 different directions- out through the rectum and up into the ileum. The colon had a valve to prevent this action. The J Pouch does not. Hence ileitis above the pouch is common for someone who has had the Pouch for a long time. My ileitis above the J Pouch inlet was first seen 15 years after I got the J Pouch. It's essentially an inflammation due to excessive bacterial traffic in that area. 

My ileitis was found already 1 year after the pouch worked. It hasn't changed so much since then, there are some more fibrinous layers and pseudo-polyps.

The question is, why for some people the pouch works and for us there is a colitis-like inflammation. It is supposed, that the danger for chronic pouchitis / ileitis is higher if you had a colitis over the whole colon (I had even a backwash ilitis as the Bauhin's valve you mentioned was also affected by inflammation, and therefore a short piece of the ileum was removed during pouch surgery).

Steve

Steve,

I fall into the group you mentioned that had inflammation in the whole colon before it was removed. I could only live with UC for 20 years before my colon was removed (dissolved in my surgeon's hands). What I have now is better- much better quality of life than when I had UC. I feel like I traded up in diseases from UC to what I have now (chronic ileitis, Crohn's or choose your label).  I also have never had bleeding with the pouchitis/ileitis whereas I had severe pain and severe bleeding with UC. It's definitely a trade up situation for me.

That sounds good, CT.

For me it was more of a trade down. I had 3...4 BM per day back in colitis times, no blood as far as I can remember, only diarrhea all the time.

Now at the moment I might be even a little better off being on Cipro 2x500 mg, Flagyl 2x400 mg and Budesonide 2x3 mg. There is no real urgency to go to the toilet, and 3...4 BM per day while feeling well overall is the best I've experienced in all those years with the pouch.

But I have to try without the antibiotics again. Probiotics didn't seem to help me so far. I've tried VSL#3 more than 10 years ago for some weeks. Nowadays there are plenty of probiotics offered in web stores. With even more sorts of bacteria than VSL#3. But only certain stems and only aerobic ones. Perhaps one day there is an individualized bacteria treatment for IBDs, but that's a wide field to be explored.

Steve

@SteveG posted:

But I have to try without the antibiotics again.

You actually don't HAVE to try, and as long as you are feeling good, I would not go cold turkey but try a slow wean and see what happens.  A slow wean is necessary/mandatory for the Entocort/Budesonide.

I was never off antibiotics for well over 20 years.  I would try to go off for a week and get really bad urgency and frequency and go right back on.  After a while I stopped trying.  If a stove is hot one does not keep putting his hand on it.

I was finally able to slow wean off antibiotics with Remicade.  I was surprised I was able to do it, but its now been over 3 months and I am OK, after 20 plus years of continuous antibiotics in dosages higher than what you are taking.

You can possibly bide your time with the current regimen for a bunch more years until new treatments come along. As long as you are feeling good that's what counts.  And get scoped every year.

CT, perhaps I should have said that I "want" to try without antibiotics. On the one hand I'd like them to stay effective and on the other there may be some things I can do better. The cholestyramine is something I already tried in the past, but only for a short time and not directly after an antibiotics reset of the microbiome. So beginning today I'll see where it gets me.

I'll continue with the Entocort as it has proved to keep the inflammation on a lower level and stabilize my health. And if things go wrong I can return to the antibiotics, I have them at home for such a case.

My scopes are about once a year, it's always the same story. Astonishingly in the last part of the ileum inflammation is a little more severe than in the pouch. I'm curious what the next result will be like, now that I use the antibiotics more often. No doctor ever told me to have antibiotics for a longer time, except once for 4 weeks Flagyl before the therapy with VSL#3. Flagyl alone was not nearly as effective as the combination with Cipro.

But you're right, buying time is a strategy and there are always advances in IBD treatment.

Steve

@SteveG posted:

CT, perhaps I should have said that I "want" to try without antibiotics. On the one hand I'd like them to stay effective and on the other there may be some things I can do better. The cholestyramine is something I already tried in the past, but only for a short time and not directly after an antibiotics reset of the microbiome. So beginning today I'll see where it gets me.

I'll continue with the Entocort as it has proved to keep the inflammation on a lower level and stabilize my health. And if things go wrong I can return to the antibiotics, I have them at home for such a case.

My scopes are about once a year, it's always the same story. Astonishingly in the last part of the ileum inflammation is a little more severe than in the pouch. I'm curious what the next result will be like, now that I use the antibiotics more often. No doctor ever told me to have antibiotics for a longer time, except once for 4 weeks Flagyl before the therapy with VSL#3. Flagyl alone was not nearly as effective as the combination with Cipro.

But you're right, buying time is a strategy and there are always advances in IBD treatment.

Steve

Steve, do you think you might want a permanent bag if your pouchitis does not get under control? I hear some people do that when it gets out of hand.

Hello Lauren,

that's of course an option. I've been recommended a temporary ileostomy first, so I could see if I get rid of inflammation and don't need to take drugs all the time. I could go back to the pouch if it has no success. In the long term a permanent bag would be the better solution compared to a temporary, but that could wait. I've also heard of people whose inflammation stopped immediately after ileostomy surgery.

For now I am thinking of trying a longer term antibiotics therapy, knowing that there may be side effects or a clostidia infection as in February. I don't like the thought of a bag so much as I already had one for half a year.

Steve

@SteveG posted:

Hello Lauren,

that's of course an option. I've been recommended a temporary ileostomy first, so I could see if I get rid of inflammation and don't need to take drugs all the time. I could go back to the pouch if it has no success. In the long term a permanent bag would be the better solution compared to a temporary, but that could wait. I've also heard of people whose inflammation stopped immediately after ileostomy surgery.

For now I am thinking of trying a longer term antibiotics therapy, knowing that there may be side effects or a clostidia infection as in February. I don't like the thought of a bag so much as I already had one for half a year.

Steve

Yeah, I understand fully. At least you have other options. Hopefully you do not need a bag, but if you do, I am sure you can handle it

hi steve, i had colectomy in 1998 and have had pouchitis since 2004.  i was always going to the toilet 15-25 times a day (4-6x at night).  but i managed.  for the first 10 years i just ignored it (part my fault and part fault of passive drs).  but then i started cipro like you. i recently started stelara w/ budesonine in october 2019.  by february i was off both budesonine and cipro.  my toilet stops have gone down to 8-12 a day with usually only 2 during sleep.  probably the biggest notice i had re: how it is working was i just went for a couple 8-10 hour hikes in the mountains last week and could had no toilet stops and no sever cramping.  so i would say -- check out stelara. 

of course i have some other issues re: chron's. i.e. the scar tissue from surgery is increasing and i have developed the lung condition bronchiactasis.

so viel gluck.  dave.

Hi dave,

as I wrote to CT I have already been trying stelara, but I didn't benefit from it.

Although I have a constant moderate inflammation I usually get along with 6-8 BM per day (often no BM during night, I take one pill of loperamide before going to sleep, and eating nothing after 6...7 pm seems a good idea).

My GI doc suggested now to take the antibiotics every month for 5 days, even if it would not be really necessary. I notice little side effects from them, but in the normal dosage I get an oedema in the legs after several days. That's probably why my weight goes up so fast.

As you said you may be lead to ignore chronic pouchitis if you get along and doctors are also helpless. It is only since the last 6 years that I visit a local GI doctor regularly. Before that I took no budesonide and had about 8...10 BM per day.

"Viel Glück" also to you (hope the German vowel doesn't get shredded)

Steve

Hey there Steve, I hope you are feeling better!  Our pouch stories pretty much mirror each other.  I thought I’d throw my two cents in to see if maybe it could help you. How are you doing with the cholestyramine?

I too struggle with chronic pouchitis, the only abx that helps me is metronidazole (or tinidazole) but I prefer metronidazole as luckily, I have little side effects from it and it always works for me (knock on wood!).

I pulse metronidazole one day a week (2000 mg/ 500mg q.i.d).  I used to only take it when things stared flaring but now I just do this one day a week and will stretch to once every two weeks if doing really well. Your doctors suggestion of pulsing 5 days a month might work really well for you!  I then use Allimax Pro (allicin from garlic) 450mg q.d. the rest of the week. Pretty much any anti-SIBO herbal helps me but not enough to knock things down to a low enough level.

I also rinse my pouch with clean water every night with a 100 ml syringe (rinse twice). I swear this helps flush bacteria out but since we are dealing with microscopic bacterial luminal type stuff with immune system wonk thrown on top, a water flush isn’t going to eradicate but it allows me to sleep through the night (I also take 4mg loperamide nightly).

I find great benefit using metronidazole topically IN the pouch (40mg gel compounded q.d. at night after rinsing) which works great. I only do this 2x a week to keep the “bacteria” down and I hope to only use topical eventually. I did have “weird white growths” on the sides my pouch (saw via scope). It was not c diff but probably some sort of yeast overgrowth from using topical too frequently. Taking saccromeyces b. has seems to make them disappear and I’m sure using it less helped that too.

I have tried bile acid sequestrants (cholestyramine). Similarly, psyllium and guggul help too. Although the resin sequestrants work well, I feel they don’t address the root cause, which seems to be the overgrowth of bacteria; "SIBO" of sorts in our pouches. The overgrowth inflames the pouch which prevents the re-absorption of the bile acids in our ileum (pouch) and battery acid butt burn ensues and then the bile acids add to the inflammation, etc…etc…it’s a vicious cycle.

I agree, sequestering the bile acids does help but when I take them I feel like I swallowed a beach ball and I already have enough issue with hindered digestion and not absorbing fat soluble nutrients.  For me, keeping the bacteria down seems to be the better option.  But they might work really well for you!

I see my western-come-functional doc regularly for my IBD (my gastro is pretty useless but I do need scopes) so this is my ad-hoc treatment protocol.  What seems to work for one doesn't always work for another. As all of us with pouches know, this will surely ebb and flow as we live life.

Onward!!! 

Some great reads:
“Interaction of Gut Microbiota with Bile Acid Metabolism and its Influence on Disease States”  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5203956/

(There is mention here of treatment with ursodeoxycholic acid to increase secondary bile acids for prevention of pouchitis but I have not tried this … yet.)

“Topical metronidazole treatment in pouchitis”  https://pubmed.ncbi.nlm.nih.gov/8036463/ 

Hi ccolby,

unfortunately the cholestyramine did't really help me. I startet with 2 g three times a day to the meals and increased to 3x4 g the next day. That was already too much, the stool seemed more fatty and flatulences increased. So I continued with 3x2 g for some days without having noticeable benefit and aborted it again. I feel I'm doing better without it.

I'd be a little sceptic using an antibiotic only once a week, as it may provoke a bacterial resistancy. At the moment I alternate between Xifaxan in the morning and metronidazone / cipro in the evening, as I found that only the last two mentioned still left over too much flatulences. I read a study abstract recently that suggested cycling between two antibiotics daily makes it hard for bacteria to adapt themselves.

Anit-SIBO herbs like allicin may be worth a try, I did't yet. What I did try was sodium butyrate 3x2 capsules á 600 mg per day, and it helped me great for several weeks. I even could abort the budesonide during that time (something that did't work any other way except with the antibiotics). That was already some years ago, and it stopped working so good when I got a stomach flu. After that the effect was much weaker.

I also used the sodium butyrate for enemas, but not often. Applying enemas with a syringe as you mentioned is an easy way to do it, with little effort and cleaning. Perhaps I'll try an enema with water (about 1% of isotonic salt level added possibly) at night. I did so some years ago several times, but mainly because of an anal fissure that I misunderstood as cuffitis at first, and it was always helpful.

Topical use of antibiotics is something I thought about, but did not try yet. And I have little to no side effects from the pills.

Could the “weird white growths” you describe be ulcerations of the mucosa that are common for CU? I always see white spots (and also some pseudo polyps in the terminal ileum) during pouchoscopy.

The studies you cite are interesting, especially the first one, but the question is when they find a medicine or an individualized therapy for IBD patients. Till that we are bound to the trial and error principle.

Steve

Budesonide worked well for me, but I could never wean off completely, even if on rotating antibiotics, so antibiotics alone were not enough. 

I stayed on the antibiotics and budesonide and I started azithroprine (Immuran) and once the Immuran has built up I weaned off the budesonide. Things were great. But when I tried to get off the antibiotics, no go. Neither antibiotics alone or Immuran would do the trick, but together are a charm.

Relative to the antibiotics, flagyl was my poichitis go to for 20+ years, but once my pouchitis turned chronic, I had a bad reaction to it and Cipro (it’s cousin) didn’t do the trick. I do 2 weeks on Levoquin and 2 weeks on Xifaxin. The Xifaxin isn’t quite as effective but it does the trick for 2 weeks at a time. I’ve been on these 2 antibiotics,, rotating every 2 weeks for about 9 years, no issues losing effectiveness yet. 

best of luck!

Thanks JJA, the same to you.

I had the same impression of Xifaxin. As only treatment it wasn't effective enough. In alternation with Flagyl /Cipro it seems to be a good combination.

Cortisone could always only inhibit inflammation partly for me. As budesonide (Entocort) it has at least little side effects and a retarding effect. It stabilizes my digestion and prevents it from getting out of control too quick.

Steve

@SteveG posted:

Hello Lauren,

that's of course an option. I've been recommended a temporary ileostomy first, so I could see if I get rid of inflammation and don't need to take drugs all the time. I could go back to the pouch if it has no success. In the long term a permanent bag would be the better solution compared to a temporary, but that could wait. I've also heard of people whose inflammation stopped immediately after ileostomy surgery.

For now I am thinking of trying a longer term antibiotics therapy, knowing that there may be side effects or a clostidia infection as in February. I don't like the thought of a bag so much as I already had one for half a year.

Steve

Are you doing better???

Lauren, at the moment I'm feeling good, but it's only three days that I finished the last antibiotics cycle. I think it depends a lot on the microbioma that establishes after such a therapy.

Steve

@SteveG posted:

Lauren, at the moment I'm feeling good, but it's only three days that I finished the last antibiotics cycle. I think it depends a lot on the microbioma that establishes after such a therapy.

Steve

I am soo happy you are at peace right now. I apologize if you already mentioned this previously but have you tried probiotics??? It works for some people but not everybody. 

I've tried several probiotics, including VSL#3 many years ago. Right now I take a supplement with 20 stems from Amazon, but it's difficult to say if there is a positive effect. At least it is no harm also.

Steve

@SteveG posted:

I've tried several probiotics, including VSL#3 many years ago. Right now I take a supplement with 20 stems from Amazon, but it's difficult to say if there is a positive effect. At least it is no harm also.

Steve

Dang, you have tried a lot of stuff. I am glad you are doing better though, I hope it continues. I hope you will not need a bag in the future but if you do, I definitely think you are strong enough to handle it