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Hello this is my first post my j pouch is about 1 year and 2 months (when it was constructed) and its been connected and working for just about 10 months. these last 10 months have been very challenging, a small portion of my anus and what's left of my rectum still has pretty severe active disease but my surgeon was hopeful as I am young 25 years old that it wouldn't be an issue. Since the surgery my number of bowel movements has always been high the lowest being 8 on the rare good days if I stopped eating very early As well as eating much smaller portions. I wasn't really keeping track of my bowel movements but the average has always been 12+ This would soon be followed by what I think was the beginning of pouchitis showing up. The symptoms would come every month urgency would increase and I wouldn't be able to hold my bowel movements at times especially at night, In the beginning this would go away on its own in about two weeks with salofalk suppositories being the only medication I would take. About 4 or 5 months ago I had another pouchitis flare that was more severe and was not going away on its own I was scoped and it was confirmed pouchitis. I was put on metronidazole 2 tablets 250mg 2 times daily and cipro 500mg 1 or 2 times daily (I forget) every 12 hours for two weeks. That seemed to clear things up in about 3 days but soon after I was off the antibiotics the symptoms quickly returned and I got back on antibiotics about 1 or two months later, The symptoms started clearing completely after 5 days but this time my doctor put me on metronidazole 2 tablets metronidazole 3 times daily along with cipro 1 tablet 500mg twice daily every 12 hours. After I came off them you guessed it the same thing happened.

I pushed through two months of torture I was getting up to go to the washroom so often 20 times at night alone and up to 50 times some days within a span of 24 hours, the last 2-3 weeks of the flare I barely got any sleep and cant even count how many times I went to the bathroom in my pants. I am missing school and work and haven't been able to do much this last year I really need to get this under control or I'll have to go back to the bag I cant gain weight I'm 128 pounds at 5ft10.  I started Entyvio infusions almost a month ago two infusions so far and I was also put on prednisone 40mg and it did not do much of anything, the only thing that works so far is antibiotics I'm back on them today is the 6th day my symptoms are 90 percent better but I still have rectal pain and some urgency with slight incontinence if I eat a lot close to bedtime. I know I cant stay on antibiotics forever they can have serious side effects, I would also  like to mention I was on entyvio 4-5 years ago before my ostomy surgery I waited 3 year and a half to have my jpouch done because I was always worried of how damaged my rectum was, it never stopped bleeding I don't know if I was ever a candidate for this surgery because of how diseased my rectum and part of my anus was..

I would like to know if there's any way I can keep pouchitis from coming back or at least keep it controlled when I get off the antibiotics. I've seen a lot of people on here talking about low carb diet, my diet is mostly protein but I would have rice and potatoes I noticed people on this forum say that rice and potatoes along with most carbs can feed bad bacteria and cause pouchitis  easily since we do not have a colon. Do I need to stop all fruits and starchy carbs and stick to protein and vegetables what about legumes? also I would love some natural recommendations I heard a lot about oil of oregano on here and should I be on a good quality probiotic once I'm off the antibiotics, thank you very much for your time sorry for the long post. 

     

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I’ve been on Cipro continuously for 15 years and metronidazole for about 8 years. I found a low enough dose that side effects haven’t been a problem, and the antibiotics have kept my pouchitis under good control.

A very low carbohydrate diet might help you, though it didn’t help me. It might be worth a try, but it really means *all* carbs.

Good luck!

Thanks for the reply I'll definitely talk to my doctor about a lower dose to keep things under control, did you figure the dose out yourself through trial and error? I tried telling my Ibd nurse about this she said to always do the full two weeks because of risk of the risk of becoming resistant to the antibiotics. Being at a lower dose/shorter period makes more sense to me

From what I was told you can't really tell if the Entyvio is helping until after the 3rd or 4th infusion, so you need to mange things with additional means during that time. Sounds like they tried you on prednisone for that, but you could also take antibiotics during that timeframe as well I'd think to get it under control. Any reason they tried prednisone and not budesonide? They put me on budesonide in the interim before Entyvio takes hold and that has worked really well for me.

@Lion posted:

Thanks for the reply I'll definitely talk to my doctor about a lower dose to keep things under control, did you figure the dose out yourself through trial and error? I tried telling my Ibd nurse about this she said to always do the full two weeks because of risk of the risk of becoming resistant to the antibiotics. Being at a lower dose/shorter period makes more sense to me

I worked out the lower doses in collaboration with my doctor - we gradually lowered the dose and waited each time to see if symptoms recurred. I didn’t reduce the duration of treatment at all, since by that point I’d realized I needed continuous treatment.

Pouchitis isn’t a conventional infection caused by a single bacterial species - that’s the situation that is very prone to the development of antibiotic resistance if the treatment is stopped too soon. Pouchitis antibiotics can lose effectiveness over time, though, at least when used continuously for chronic pouchitis, which is why it’s recommended that antibiotics be rotated every few weeks. This only works if you can find several different antibiotics that actually work for you, which I was not successful at. Fortunately I’ve done well without antibiotic rotation, though I had to add metronidazole after 7-8 years of just Cipro.

@DJ H posted:

From what I was told you can't really tell if the Entyvio is helping until after the 3rd or 4th infusion, so you need to mange things with additional means during that time. Sounds like they tried you on prednisone for that, but you could also take antibiotics during that timeframe as well I'd think to get it under control. Any reason they tried prednisone and not budesonide? They put me on budesonide in the interim before Entyvio takes hold and that has worked really well for me.

Thanks for the reply I'll definitely mention budesonide next week when I see my Gi and stay hopeful that the next two infusions will do the job

@Scott F posted:

I worked out the lower doses in collaboration with my doctor - we gradually lowered the dose and waited each time to see if symptoms recurred. I didn’t reduce the duration of treatment at all, since by that point I’d realized I needed continuous treatment.

Pouchitis isn’t a conventional infection caused by a single bacterial species - that’s the situation that is very prone to the development of antibiotic resistance if the treatment is stopped too soon. Pouchitis antibiotics can lose effectiveness over time, though, at least when used continuously for chronic pouchitis, which is why it’s recommended that antibiotics be rotated every few weeks. This only works if you can find several different antibiotics that actually work for you, which I was not successful at. Fortunately I’ve done well without antibiotic rotation, though I had to add metronidazole after 7-8 years of just Cipro.

Thank you I'll mention this to my doctor, good to know I have these options if Entyvio doesn't kick in but its still early

Additionally it may help to avoid pork, as it is not easily digestible. And having red meat not too often.

Budesonide is a good idea, it has less side effects than prednisone, I'm taking it for 10 years now at a reduced dose. Though it only reduces inflammation and does not have that strong effect like antibiotics for me.

If you should decide to take antibiotics regularly, finding a sufficiently low dose is advisible to reduce side effects as Scott already said. Taking a probiotic in the morning and antibiotics (Cipro & Flagyl) at late evening is what I stick to for the last years. It may seem a little paradox, but I hope to keep antibiotics resistant bacteria from spreading by flooding the bowel with harmless bacteria.

Hopefully Entyvio works for you in the end, for me it didn't.

@SteveG posted:

Additionally it may help to avoid pork, as it is not easily digestible. And having red meat not too often.

Budesonide is a good idea, it has less side effects than prednisone, I'm taking it for 10 years now at a reduced dose. Though it only reduces inflammation and does not have that strong effect like antibiotics for me.

If you should decide to take antibiotics regularly, finding a sufficiently low dose is advisible to reduce side effects as Scott already said. Taking a probiotic in the morning and antibiotics (Cipro & Flagyl) at late evening is what I stick to for the last years. It may seem a little paradox, but I hope to keep antibiotics resistant bacteria from spreading by flooding the bowel with harmless bacteria.

Hopefully Entyvio works for you in the end, for me it didn't.

thanks for sharing, are you still having carbs in your diet or avoiding any specific carbs?

@AMB posted:

Regarding diet, not all carbs are created equal.  Trying to find which carbs may be causing difficulty is worth the effort. Check out the FODMAP diet. It has been studied extensively for IBS, used for IBD, and some pouch doctors (mine included) are recommending it.   Here's some info https://my.clevelandclinic.org...2466-low-fodmap-diet    

Thank you, I'll try it out and be patient with eliminating and adding new foods one at a time to actually see what my body agrees with   

Hello Lion, feel I would like to try help with a suggestion of taking manuka honey daily?

My son had j pouch surgery just at end of May, few months ago.  He was doing very well, then at 7 weeks post op, suddenly went to inflammation and rapid fluid build up, then to serious sepsis within a few days.  Thankfully 2 drains were successfully put in and saved his life.   

Since he got home from hospital he has been taking manuka honey daily, as he heard it has been successfully used for pouchitus and keeping infection levels down.  Also takes probiotic.

He has recovered incredibly well from sepsis, and doing well 9 weeks later...with daily dose of high strength manuka honey and probiotics.

Just wanted to pass that on for your interest and hopefully be a help for you also.

All the best.

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