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J-Pouch ForumsPouchitis
Has anyone ever had pouchitis turn back into ulcerative colitis?
O OscarThePouch
OscarThePouch Luckily nobody promised me this was the cure and they were very straightforward with me about what the risks are and the long term complications could be. I signed on to surgery because the risks sounded less bad than the severe case of UC that I had. I almost died from sepsis once from a flare up. The only regret I have is doing alternative medicine instead of proper medicine, which was tantamount to doing nothing for my illness which is how the sepsis arose. My UC dragged on for so much... [ more ]
AMB This chain has me thinking back. Many gastroenterologists used prednisone as first line and maintenance therapy for Crohn's and UC back when I was diagnosed, which was routine and routinely bad medicine for many years. The 5-ASAs were in clinical trials for UC, not super effective, and they came with probably under-reported liquid diarrhea - so what was the point? 6-MP wasn't commonly prescribed. It was so un-common that pharmacists would question me when I went to fill my script! So... [ more ]
Jan Dollar Back when I had my colectomy, Remicade was considered experimental (and not covered for treatment for UC). So, not an option at the time. I think the best solution is the one you can live with. Maybe the problem is that there is so much information to be had that it becomes a mine field. Hard not to imagine possible side effects as likely side effects. Some doctors are better than others at helping you sort through it all. But in the end, we are the ones that have to accept our choices. I... [ more ]
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J-Pouch ForumsPouchitis
Medication for pouchitis or another type of bacteria infection in the pouch
A Alice
Indiana Just to be clear we can get it in Oz but not on the Public Scheme for pouchitis so we would pay private prices which is $466 for 56 pills. [ more ]
kta This is an old post, but I wanted to add something. I get my Xifaxan from Israel Pharmacy. There, it is called Hepazek. It costs about $200 for 30, 550 mg tabs. Well worth it when I need it. My concierge doctor turned me onto this pharmacy and they are very good. [ more ]
Former Member ❤️
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J-Pouch ForumsPouchitis
Are beeswax capsules safe with pouchitis?
CK Chris KCMO
Chris KCMO I'm taking the same OregaBiotic product mentioned at the top of this post, which so far hasn't seemed to present any digestion problems. I'm going to stop taking it one week from today. I'm tempted to purchase the Visbiome product as a follow-up, as many do seem to recommend introducing helpful bacteria, though I'm leaning towards not introducing any additional just yet and instead seeing how things progress, so as to reduce the number of factors in my "experiment". If I do end up having... [ more ]
Sara Marie Thank you for the update! Which oregano oil are you taking? Are you still doing the beeswax one? I'm so glad you are feeling better! How long until your month is up? Are you planning to follow up your oregano oil regimen with some probiotics? I think I read that oregano oil can kill off some of the beneficial intestinal flora like antibiotics do. [ more ]
Sara Marie ❤️
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J-Pouch ForumsPouchitis
Undigested Food
MY Mark Y.
lclassen ❤️
Scott F If Flagyl and Cipro no longer work then it’s probably time to try some new possibilities. Rifaximin is well worth a try, as long as you can get insurance to cover it. Other antibiotics that can work include Augmentin and a few others. Some folks also get help (mainly preventing/delaying bouts of pouchitis) from Visbiome or VSL #3, but those are also expensive if the doses are adequate. [ more ]
Sara Marie I have noticed that when I got the pouch there was a gradual but constant reduction in the ability of my guts to digest various foods. I didn't discover psyllium husk powder, which helped slow the transit time, until about 18 years in. Before that, the stool pretty much always had the chewed food look. The slower transit gave my intestine a longer time to absorb nutrients and the food would come out generally more processed. I added digestive enzymes and now the food is even less... [ more ]
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J-Pouch ForumsPouchitis
off antibiotics for 3 weeks with oregano oil
C clouseau
Sara Marie I have taken Giam Oil of Oregano capsules for minor infections and it seems to clear them up. I have taken as many as 2 a day before. I don't take it long term because of its blood-thinning effects. The ingredients are vague: Oregano Leaf Supercritical CO2 extract 230mg, Carvacol & Thymol 32mg. I don't know if it adheres to the above qualifications because there is so little information, but I do know it has helped clear up minor infections. I have also found that oregano oil is great... [ more ]
Jmakled Do you put the oregano oil drops alone in the capsule and take it? Or do you put something in the capsule with the oregano oil? I am about to start my trial with oregano oil. I bought the little brown 15ml bottle of doTerra off Amazon. I cannot take the cipro anymore. It’s destroying my tendons, and as soon as I stop, my pouchitis flares up again really bad. [ more ]
Bloesch88 ❤️
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J-Pouch ForumsPouchitis
discomfort while passing stool
H HEMU
Ljz Yes- that was a typo. Yes, I put little in anus without any issues. The ointment with the 3 ingredients was meant to be inserted in anus to promote healing too. [ more ]
Sara Marie Thank you! I may try that out sometime! I usually use Calmoseptine like Lauren does, but I have wondered if there is anything better because the Calmoseptine comes off when you poop and wipe. When you said "up into Amy's" I imagine you were using speech to text and you actually said "up into the anus". Is that correct? So you put it a little ways in there. Good to know that isn't irritating. I'm so glad you have healed. Yay! And thanks for the tip! I get a sore or itchy butthole from so many... [ more ]
Ljz Those are the 2 products. No sting- thankfully! Had initially used Convatec Stomadhesive but it stung. Initially did 60/40% but I reduced amount of paste. Mixed well. Good luck! I push a dab up into Amy’s and also put plop right at anus. It doesn’t harden as much as Ilex did but best of anything I’ve tried. I do have rectal cuff but had tear and ulcerations inside and around opening. They have healed! [ more ]
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J-Pouch ForumsPouchitis
Cipro and exercise
L liza_s
liza_s Thanks for the replies! Yes I use pysillum husk. I worry the risk isn’t worth us considering an injury could disable me from my job as a chef. What alternatives are there to cipro besides flagyl? I’m happy to try flagyl as I don’t drink and I don’t remember having bad side effects when I have taken it before. [ more ]
AMB I took Cipro for probably most of the first year or two. Had tendon strain and pain but no rupture. Thank goodness. It certainly slows your output down but can also firm stool up to the point where it causes more harm than good for some. To get off Cipro I was put in Tinidazole for a while which is a next generation Flagyl with fewer side effects. Now I am on Rifaximin 550 TID which has been the best for my "floppy pouch" issue. I'm very happy to be off Cipro. Have you tried psyllium husk? [ more ]
CTBarrister I took it for almost 20 years, almost continuously, and never had tendon issues. Cipro does photosensitize your skin so if you go out in the sun you will burn much faster than you normally would, meaning use a lot of sunblock. Other than the photosensitizing of skin, the one other side effect of Cipro taken long term is being prone to fungal (yeast) infections and viral (warts) in your skin. Especially at higher dosages. I found those side effects are counteracted by rotating onto other... [ more ]
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J-Pouch ForumsPouchitis
Creon or Pouchitis with Fap jpouch
BorislavBorislav
Former Member I see you are from Bulgaria! You write excellent English! Yeah I think you have pouchitis for sure. I would get antibiotics and see if that helps. [ more ]
Borislav I was 67. 5 kilograms now i am 65.7 kilograms i eat but everything is watery stools can because is like dirrhea lost kilograms(kg) [ more ]
Former Member Oh shit that is high AF!!!!! I would say you have pouchitis but I am not sure with the lipase thing unfortunately. [ more ]
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J-Pouch ForumsPouchitis
oregano drops/antibiotic effect
R Rebe0505
Sara Marie I have used oregano oil capsules short term (like 10 days) to deal with minor infections/internal inflammation and on the skin as an anti-infective. I haven't used it for anything that would be called full-blown pouchitis. The type I have used is Gaia. https://www.amazon.com/gp/prod...ge?ie=UTF8&psc=1 Some people swear by Manuka honey as an alternative to ingested antibiotics. I have only used it for skin irritations and it works great! It's a bit sticky though. [ more ]
cindy greeley I would love to know more about using oil of oregano drops. I’ve had a J-pouch for 15 years and deal w/pouchitis and have to go on cipro. I am curious when I read the thread it dates way back to 2017 rather than anything more current? [ more ]
Jmakled Can someone please please just share the name brand of the pure oil of oregano that they have had success with to stay off of antibiotics. I am desperate for some relief and the cipro is starting to lose its effectiveness. Not to mention tearing my tendons apart. please just share a name brand. Because all brands claim to be pure high quality. [ more ]
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J-Pouch ForumsPouchitis
Pouchitis with possible Chron's
bionicbowelmanbionicbowelman
AllyKat I just finished my third loading dose. I was much happier on Entyvio. 10 years till it just stopped working. [ more ]
bionicbowelman I had my first infusion of skyrizi yesterday. Hoping this one works better than the humira and stelara. [ more ]
SteveG Yes, that initial course of prednisone really made sense. I was also recovering from a Covid infection and needed some additional weight. I hope that Skyrizi will help you too. [ more ]
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J-Pouch ForumsPouchitis
Pouchitis/gallbladder
HW Hannah welstead
Hannah welstead I had ultrascans and CT scans iv got stones just wondered if people who had suffered with it notice that there jpouch becomes irritated and infected with the the gallbladder playing up. Thank you for your reply [ more ]
tulsamom When I had gallbladder problems, the pain was always on the right upper quadrant. But it might be different for different people did you get an ultrasound? That’s usually how they can tell I think.. [ more ]
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J-Pouch ForumsPouchitis
stress related pouchitis
C ChelleC
Former Member Yeah definitely agreed!!! I went on a walk tonight and it was pretty relaxing! Maybe walking can help you too! And exercise in general! [ more ]
ChelleC I'm so happy, Mrs P, that things are going well for you. I have Cipro right now. If it doesn't clear things up, I will definitely ask my dr what she thinks of Entyvio. Thanks for the info! [ more ]
Former Member ❤️
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J-Pouch ForumsPouchitis
moving from long term antibiotics to a biologic
DJ HDJ H
bionicbowelman I moved from employee insurance to ACA in April of this year due to transitioning from an employee to a remote independent contractor. There was a lot of plans to choose from on the ACA for the state I moved, Oklahoma. I made sure to pick a plan that would cover the Stelara that I was using. I ended going with a United Healthcare plan. They had filters and stuff on the marketplace that you select to narrow down the plans specific to what you need/want, including the deductible you want. I... [ more ]
Abdulaziz Hi , how are you feeling today ? what is your current medications ? [ more ]
CTBarrister I felt the same way. I was a Long termer on antibiotics from 1995-2015. I went on Remicade back in 2015 and haven't looked back, although I still need antibiotics occasionally to supplement the Remicade. [ more ]
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J-Pouch ForumsPouchitis
Probiotic recommendation?
C CLB
Former Member Yeah never hurts to try Let us know how it goes hon! [ more ]
CLB Thank you so much for your replies! I don't have much hope for my insurance covering anything, but I will ask my Dr. about sending a letter. [ more ]
Former Member Scott F told me in the past that his insurance has covered VSL, maybe talk to Scott F on how you can get insurance to cover it. [ more ]
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J-Pouch ForumsPouchitis
Xifaxan for pouchitis
D Diesel
Indiana I want to try this one but not available in Australia unless you pay dearly, but maybe worth it for one month? [ more ]
FreeAtLast I ran out of my Xifaxan a couple months ago and sadly my Cipro/Augmentin/Pepto combo couldn't keep things stable. My copay for the Xifaxan was $0 through Walgreens, but now I'm wondering what it'll be with my new mail-order pharmacy (ldirx.com). When I had Xifaxan in the combo, I was able to keep things stable (one or two BMs per day, mostly formed) for 7-10 days before I had to add in some (yucky) Flagyl for a couple days for a reset. I'm up to about 6-8 BMs a day now, severely loose... [ more ]
Diesel Ok, thank you for the info! [ more ]
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J-Pouch ForumsPouchitis
Inflamation
SF Steven Fleischman
Steven Fleischman Hi I’m back after 4 months I recently posted back I do believe in March about my battle with pouchitis. It’s a real pain where you sit obviously, I’ve seen my Gastro doctor since then and he’s basically started me on entiva infusions was on Flagyl and have been onmesalamne 400mg 6 pills per day as I stated in the above from March of this year I had my jpouch out in in 1992 for ulcerated colitis =32 years in the back of my mine I have been thinking about talking to my Gaston doctor about... [ more ]
Steven Fleischman Hi thanks for the information I just started on the entiva infusion treatment have follow up with doctor coming up going to ent ion c oil and see what he has to say right now it feels like I’m married to the toilet 😡 [ more ]
Sara Marie I wonder about that too! Did you end up getting treated for the pouchitis and inflammation, and did it make you feel better? [ more ]
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J-Pouch ForumsPouchitis
Entyvio
G gottswood
liza_s @@Aussie do you have entyvio in Aus? I’m moving to New Zealand from the US in October and just got news I may need biologics. So trying to figure out logistics but think I could do antibiotics for the time being. Only planning on doing 3 months to start and then assess if I want to move permanently! [ more ]
Aussie1 I have had very up and down bowel control times. The "reason" for the Entyvio is to stop/reduce the antibiotic use. When I can no longer put up with the loss of control I will start a course of antibiotics. I have found that cipro X 2 daily for 3 days; 1/2 tablet X2 daily for 4 days; 1/2 tab daily for ~ 5 days and then stop works for me. I notice a big improvement in the first 48 hours. I decided on this course myself and informed my GI of the results at a routine consult. He was a bit... [ more ]
Scott F I don't think it's an Entyvio side effect - it just sounds like the Entyvio is only partially taking care of the problem, at least so far. It might do a better job over time. I've been on Cipro with or without Flagyl for about 14 years, and my GI function is excellent, so I'll be sticking with that (at the lowest effective doses) as long as it works. [ more ]
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J-Pouch ForumsPouchitis
Entyvio
A Anna625
Scott F Is this doctor a surgeon or a gastroenterologist? [ more ]
Pots Cool. Thank you. I will be pushing this when I see the good Dr. in 2 weeks. Thanks for the info. I was on Humira for 5 yrs. and this worked until I developed 998 antibodies that worked against it. I had to switch Drs and now This one wants me to do a reverse on the pouch and I don't want to! It is such a life changing thing to do, and I don't want to do that. [ more ]
Anna625 Yeah there is a whole class of biologics that are immunosuppressants that can help. [ more ]
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J-Pouch ForumsPouchitis
Advice needed - 5 month post takedown + sister wedinf
L liza_s
liza_s Thanks for the replies! I reached out to both my GIs to see if I could get started. Hoping I hear back today or else I’ll just go ahead and start the antibiotics. i have a new dietician who has a j pouch! So I’m confident I’ll find the right diet for me. However, I am a private chef ( www.Florabellefood.com ) and I am at the mercy of my clients a lot of times. I can’t always cook all day for them and then make something special for myself. Are there tricks to adding more fiber to your diet? [ more ]
Jaypea I agree with Scott's answers. Start the Cipro and take it for at least 14 days. See what happens. I have a healthy well functioning pouch and cannot tolerate too much fibre whether that be grains, nuts, lettuce, fruit etc. That gives me frequency and often horrific butt burn. I'd suggest going back to a soft diet of well cooked items. For those of us without a colon, fibre often is very nasty and works to increase bm's. Have fun at your sisters wedding. [ more ]
Scott F Some people seem to get substantially better pouch functioning on antibiotics even if the clinical findings aren’t clearly pouchitis. It’s less clear whether that gives a lasting response with a 14-day course (like acute pouchitis generally does), vs. long-term antibiotics. The biopsies will usually show mild inflammation regardless of how well things are going, so I think they can be used to justify whichever course of action is preferred. You might be overdoing the insoluble fiber - not... [ more ]
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J-Pouch ForumsPouchitis
20 years with a pouch
Eric76Eric76
Linzalisha ❤️
Former Member ❤️
Sara Marie Cancer for you too? Or just j-pouch? My takedown was in July 2004, too, or maybe August? I was too drugged to remember specifics from that time. Also the anesthesia messed with my brain for a long time after both surgeries. Cancer treatment ended in March 2005. [ more ]
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J-Pouch ForumsPouchitis
Xifaxan
J JBS
kta I get mine from Israel pharmacy. I do not think insurance covers it, but I pay $175.00 for 30 tablets. Since I rotate antibiotics, this is not too much to pay. [ more ]
Scott F Supply issues sometimes seem to plague CVS when other pharmacies have no problem. I abandoned CVS a few years ago when they inexplicably couldn’t fill my Cipro prescription for an extended period. Before switching medications you might try calling some other pharmacies in your area. They can generally transfer your prescription if you ask them to. [ more ]
AMB I get mine through a specialty pharmacy affiliated with my medical center every 2 weeks and have not experienced any supply issues. I've use a Canadian pharmacy in the past which was pretty efficient and could supply larger quantities. It took a few weeks, though. I still have some left for back-up in case there are delays on the current deliveries. [ more ]
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J-Pouch ForumsPouchitis
My current regiment
P PouchLogic
Scott F I used doxycycline for a couple of months when I had SIBO. I got a bellyache from it, which is pretty common. FWIW I choose to stay on Cipro, which works well, since being sick all the time is (for me) worse than the side effects risk. [ more ]
Jmarc Not sure if I’ve posted this in the right place….Anyone had positive outcome with Doxycycline? Been on varying amounts of Flagyl for 10 +/- yrs. Effectiveness seems to be waning. 8-10+ bm per day and more urgency. Cipro works good but concerns about long term effects. [ more ]
Former Member ❤️
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J-Pouch ForumsPouchitis
Looking for a little advise
V Vinnie_B
Golden Girl I took a heaping teaspoon twice a day. You cannot put in a hot beverage or the heat will destroy the property that makes it effective. But I am sure you could put on toast if you like. I hope it helps you. It took 2 weeks of using twice daily to rid me of Pouchitis. [ more ]
Vinnie_B @GoldenGirl Thanks for the info. How did you use it, did you just put it on food? [ more ]
Golden Girl I struggled with pouchitis off and on for years. My last bout was in 2020 and lasted about a year with me alternating between Flagyl and capri with little relief. My life was hell, I could hardly leave the house. I even considered giving going back to an ostomy. Then I read somewhere about using Manuka honey. I bought some online from Costco and took it twice a day for 2 weeks. No more problems! I have not had pouchitis since. I have mentioned it on this forum. Please give it a try. [ more ]
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J-Pouch ForumsPouchitis
Vancomycin for Pouchitis and new PSC diagnosis
F FreeAtLast
SteveG @Pouchomarx : My intrahepatic ducts had some strictures, but not yet as prominent as typical for PSC. I hope this will not get worse. Liver labs returned to normal when I had a cortisone treatment some months ago, but now they are up again. I think you don't have to worry about PSC from what your doctors said. [ more ]
Pouchomarx what were your irregularities of the intrahepatic ducts? a few years ago my ultrasound showed dilations of my intrahepatic ducts but no strictures. I saw a PSC specialist at Cleveland Clinic and he stated he does not feel thats PSC. He said it showed "mild" dilation and could have just been read wrong. liver labs have been great which led to his thinking of no PSC, its been over a year since i had liver labs but starting to get some right sided uncomfortableness off and on so i reached out... [ more ]
Pouchomarx how has your PSC been since this post? [ more ]
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J-Pouch ForumsPouchitis
T1D plus Pouchitis
Tori R2Tori R2
Tori R2 Yeah, food choices matter. I can eat pretty much whatever I like, but I am vegetarian, so that obviously directs my choices. If you are pre-diabetic, I’m assuming you mean T2D? T2D is a metabolic condition. T1D (which I have) is an autoimmune issue, which is why I assume it is somewhat linked to my pouchitis. (I find that my pouchitis gives me no trouble is my T1D is behaving. Yay!) Stay strong! [ more ]
Sarita Hi Tori, I've been pre-diabetic before, not diabetic, but I truly believe that sugar is bad for j-pouchers. I definitely noticed that sugar and gluten make me go to the bathroom more often and give me bloating. [ more ]
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J-Pouch ForumsPouchitis
Yellow Diarrhea
D Derrick
JanWillem When I had yellow output it was a problem with my gal bladder. I had some obstruction there that caused high backpain (between the shoulders). best to visit a doctor, yellow is not a good color for that type of output [ more ]
Derrick I honestly have no clue what’s going on with me. My stools(without fiber supplement have become more formed and are either like pudding/oatmeal or they come out in little nuggets. That has happened since yesterday. My frequency is up because I seem to not go a little at a time and have a little pressure and gas directly where my vertical incision was about halfway or a little more downs. The stool, although formed well, still has a honey mustard tint to it and no sure why. My thought is my... [ more ]
Derrick So now my bowels have been more formed and actually look decent but still are yellow honey mustard in color. Has anyone dealt with this issue with pouchitis? Or has there been an issue with something else for people? [ more ]
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J-Pouch ForumsPouchitis
No Crohn’s but not sure what’s going on
D Derrick
CTBarrister As I posted in your other thread, I have been in the same "gray area" as you for almost 20 years. You say that they don't think you have Crohn's - but they don't know if you do, either. But whether you do or not DOES NOT MATTER. You, I and thousands of others will live the rest of our lives in this so called gray area and the sooner you accept that, and focus on treating your inflammation, the better off you will be, physically and mentally. It's most likely pouchitis due to backwash stool,... [ more ]
AMB @Derrick - It's not such a gray area really. For instance it is no longer said that removal of the colon "cures" ulcerative colitis as had been the standard advice before J-pouch became the "gold standard" surgery. Most j-pouchers end up with pouchitis at some point - not Crohn's. Sometimes there is what's referred to as "backwash" inflammation that occurs upstream of the pouch. Here is a good article. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8239975/ "Cuffitis" is a separate condition... [ more ]
Kushami ❤️
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J-Pouch ForumsPouchitis
Dangers of Cipro?
FR Frank R
AMB Dr. Shen is my doctor. Cleveland Clinic is a good place to go. Your scope results sound a lot like mine. Cipro and Flagyl are definitely worth a try. It's usually given for a few weeks or up to a month as a short course "first line" treatment. You may feel much better quickly. I did when I first used it. And then the docs at Cleveland Clinic should figure out what's going on. It took me a few years for the pouch to settle down - Much longer than I'd expected. But things do get better. [ more ]
Frank R My colorectal surgeon performed a pouchoscopy 1/23/2024. He stated that pouch looked good. However, he indicated in test results that there was granularity and mild inflammation. The nurse practitioner prescribe Cipro and Flagyl based on my symptoms - excessive diarrhea, cramping, urge to go with no results. The "pouchitis" flareup started 3/28/2024. I have made an appointment with a GI doctor in Cleveland who is highly recommended by a New York Dr. Schen, supposedly the best GI doctor for... [ more ]
AMB It sounds as though you may be in the "antibiotic dependent pouchitis" category if the pouchitis returns when you discontinue the Cipro & Flagyl. But that assumes it is actually pouchitis and not a functional problem or cuffitis. Is the diagnosis based on pouchoscopy? Cipro carries a "black box" warning that alerts to the risk of serious side effects. My community GI was willing to prescribe though my specialist was not. I was on it for several years, unable to reduce dose below 500 mg a... [ more ]
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J-Pouch ForumsPouchitis
Can we get proctitis too?
B Bubbapup
lindaslankard Does anyone have tears, fistulas or fissure in anus wall. So painful [ more ]
Bubbapup Yea that’s what my doc said. I ended up calling the doc on call at the office today. He called in lidocaine but the doc on call didn’t want to give me nitroglycerin bc of my complicated history with my pouch. I’m guessing he didn’t want to make that call. He said he would call in a script for the lidocaine but wait until my doc could confer on Mo day. That’s fine. I’m doing the sitz baths which are helping and upped my colestipol and Imodium so I’m going a lot less, which is helping. My doc... [ more ]
Scott F This sounds like an anal fissure. The usual treatments for that are warm sitz baths, making sure the stool is soft, and nifedipine, diltiazem, or nitroglycerin (Rectiv) ointment. Good luck! [ more ]
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J-Pouch ForumsPouchitis
Long term Cipro for Pouchitis
HeatherF21HeatherF21
CTBarrister I rotated Cipro and other antibiotics continuously for over 20 years until I finally went on Remicade 9 years ago. Since going on Remicade, I have had to take antibiotics far less frequently- maybe 2 or 3 two week cycles every 6-8 months. I have treated chronic pouchitis for almost 30 years, and my overall status and quality of life is good. I did have to have a stricture dilated at the J Pouch inlet in 2021, but it's been OK since. [ more ]
AMB Returning to the original question concerning Cipro experienced. I was on it fairly steadily for about two years, punctuated with trials of XIfaxan, flagyl and Tinidazole alone or in combination with the Cipro. Tinidazole was ok for a while but when I upped it to a treatment dose I developed vertigo and light-headedness. The Cipro was my most reliable drug, and it really impacted consistency. I was happy to go less frequently, and almost "normally," bit I think some of the inflammation and... [ more ]
Karenchase I take Cipro in rotation with other antibiotics. I find I can take a 2-3 week break between cycles, and I like to do that. I can’t be sure, but I believe I have developed neuropathy in my hands and feet due to extended Cipro use. It’s uncomfortable but not debilitating. This disease has always been a merry go round of symptom and side effect management for me. [ more ]
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J-Pouch ForumsPouchitis
Scope
J Jen24
Scott F If your doctor understands that you have (or may have) chronic pouchitis and needs to sometimes monitor the treatment effectiveness or confirm the diagnosis then scopes may be warranted. If your doctor doesn’t understand chronic pouchitis then you probably need a new doctor. [ more ]
New577 I would align with a GI who has a thorough understanding of our situations. My doc and his nurse practitioner will always prescribe antibiotics whenever my SIBO flares up, usually every 5-6 months. They understand we know our own bodies, and that we are suffering and will treat on symptoms. [ more ]
Jen24 Thank you. I didn’t understand the rationale from my doctor. I have had the symptoms of pouchitis for years so I believe I have chronic pouchitis. I have been treated with Flagyl and Cipro with good results but upon finishing the symptoms return. [ more ]
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J-Pouch ForumsPouchitis
Crohns Disease, Pouchitis, or something else?
D Derrick
Derrick Steve, No I can’t other than the antibiotics were very sporadic over a 7 month period. I had them 4 times over that time and none were consecutive. So I guess it could have been the antibiotics but the entyvio has been taken consistently. [ more ]
SteveG Sorry, I meant to say cuffitis instead of pouchitis. [ more ]
SteveG Can you be sure it was Entyvio that helped with the pouchitis and not the antibiotics treatments? [ more ]
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J-Pouch ForumsPouchitis
Rinvoq
K katenet
Karenchase I have been taking Rinvoq for a few months. My GI prescribed it for symptoms consistent with “post colectomy crohns” and it looks like the signs of inflammation have been reduced, according to a recent scope. It doesn’t seem to have any side effects, but it doesn’t really help my chronic recurring pouchitis. I still take cycles of antibiotics for that. I hope this helps. [ more ]
Glenys D Hi Kate, I've been on Rinvoq for 3 months, and I'm very happy with it. Previously, I was on Infliximab infusions every 5 weeks. The problem with Infliximab was I was only symptom-free for 3 weeks. With Rinvoq, firstly it's a tablet, so I'm not going to the hospital every 5 weeks for a few hours. Secondly, I'm not having to wait 2 weeks until the next dose, because it's a daily dose. I hope it goes well for you too! Good luck! Glenys [ more ]
SteveG I tried Xeljanz a few years ago. Another so called JAK inhibitor. I don't think you should be worried too much about side effects. On the other hand it didn't help me with chronic pouchitis either.# In December I started with a new biologic called Skyrizi. I hope this one has more success. [ more ]
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J-Pouch ForumsPouchitis
Entyvio Time
PouchboyPouchboy
marz I have been On entivyo for 3 yrs. (Every 2 months) I don’t know my inflammation levels, but the blood test did show the antibodies for entivyo were showing.Previously, I was on the antibiotic rotation and ended up with c—diff. I’m happy with the entivyo and have not been offered the injections. Just wondered if insurance coverage is as good for injections vs infusions (Medicare). Has anyone had experience with their insurance coverage not being as good?? [ more ]
sudie I have been on Entivyo monthly for two years was previously on antibiotics for quite some time. Last month changed to injections every two weeks. I do it myself in the top of my leg so much better quick easy. My gastro doctor feels I would get a better coverage through the month .My inflammation levels were very high at the start toward the 500 mark now down to below 100 so happy with my progress. [ more ]
gnnelson ❤️
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J-Pouch ForumsPouchitis
Has anyone tried alternative therapies for pouchitis
F FelixGust
SteveG The taste of Flagyl was never a problem for me. There was a little metallic taste some hours after taking the pill, but only if I took the full dose. I was taking a small dose of both Cipro & Flagyl for about 3 years till recently. Right now I started a new biologic therapy with Skyrizi. During a hospital stay due to a Covid infection (my first, the problem was not flu symptoms but diarrhea as usual, associated with weight loss, circulatory problems, kidney failure) in November I was... [ more ]
Brellis @Anna625 its pretty strange that you can have a healthy pouch for 20-30 years and then it starts acting up. What did your diet look like before? and did it changes somewhat before your pouchitis started? [ more ]
loralie78 ❤️
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