J-Pouch ForumsPouchitis
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J-Pouch ForumsPouchitis
Thank you for the positive news! I am seeing minimal improvement in two days but it is improvement. Will give it a bit more time. I haven't tried Imuran yet. Thanks again. [ more ]
Worked fast for me-could see improvements within a couple days. Good luck. I think in recent years they have been doing trials of using entocort as a long term treatment for UC vs a short term. If they saw positive results, may be an option for long term use with pouchitis. I moved on from Entocort to Immuran and although entocort was very helpful, I am doing even better on Immuran. [ more ]
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J-Pouch ForumsPouchitis
Gee, I would think it would depend on what supplements you took. There are so many and some can contain all sorts of strange things. Jan [ more ]
Chad, I take supplements and never have any problems; however when I drink alcohol I do. Seems what works for one doesn't necessarily work for another. Cipro seems to be the only thing that works for me, especially with nighttime incontinence. I'm only about 1 1/2 yrs out from my Jpouch and it's not been easy figuring out what works and what doesn't work in regards to nighttime incontinence, which is my only problem. Let me know if you how things work out for you. Chris [ more ]
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J-Pouch ForumsPouchitis
If you've had gastritis before then that would be my first guess. It could also be a peptic ulcer, and there are other possibilities. Perhaps you could place a phone call to your doctor and discuss whether a visit is necessary. If you treat a peptic ulcer as gastritis you might just mask it. [ more ]
It gets me up at night a bit more than normal. In the day I'll go more but that's just because trying to relieve the pain...not an urgency. Today it's been more burning so maybe it's a gastritis flare up? In the past with gastritis my symptoms were mainlt nausea which is why I thought pouchitis and not gastritis. [ more ]
You can't fight it on your own without knowing what you're fighting. This doesn't sound like pouchitis to me, since you haven't described any connection between the pain and pooping. Lots of us can start antioibiotics without an office visit, but that's usually after we've established a clear pattern that is very likely to be pouchitis again, and reached an understanding with our doctor. [ more ]
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Hi Shaney, Yes things did calm down and my pouch was fantastic for four months - then I developed an abscess and turns out I have a fistula - so back to an ileostomy while this heals (I hope) though I will likely need a repair. Best wishes and hope all settles down for you. [ more ]
Hey Tshirt and Sunny, Just wondering how you both have made out? I and just a month takedown to my pouch and things have changed for me too. Things were great and I started taking VSL3 Probiotic and have felt different and BM's are different ever since. Do I need to just deal with these things for a while? Thanks so much! [ more ]
This my first time to this forum I think it's helpful for older and newer jpouchers ... My jpouch is one month old today and Yesterday I experimented with lactaid milk for the first time with plan crispix cereal and I don't think it agreed with me to well I had quiet a few BMs and burning being I don't really know the symptoms of pouchitis I was very scare I may have had between the urgency frequency and burn .... Has anyone else experienced this before with lactaid milk? [ more ]
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J-Pouch ForumsPouchitis
The headache with Lomotil might be from the atropine. It might be worth trying Imodium instead. [ more ]
Does anyone get severe headaches from lomotil? My stomach was killing me from Cipro so I stopped on my own. I am now taking 8 turmeric capsules a day and 4 packets of vsl3 ds. This is the first time in weeks, my stomach has not ached 24/7 and I have not been in the bathroom every hour with God awful cramps and pain and horrible sounding stomach noises. I have also started a gluten free diet and I am watching alcohol intake and carbs and sugars. [ more ]
i rotate antibiotics a month on each one and with phylum husk i am doing better than i ever was.. [ more ]
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J-Pouch ForumsPouchitis
Just as an offering of something that finally worked for me, the best probiotics that I have used are Dr. O'hhirra's probiotics. I managed to finally transition OFF of anti-biotics both times with his formulas. There is a regular strength and a "Professional strength" I would start with the regular and then move up to the professional. When having pouchitis, I avoid all dairy, gluten and then take these 3 times a day. When off or pouchitis, I still avoid dairy and gluten and take 1 a day. [ more ]
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J-Pouch ForumsPouchitis
I know the feeling, I took to many antibiotics, Cipro and Flagyl. Now I am on my second month of Humira. I would like to hear some success stories with anyone taking Humira. [ more ]
Well, I'll just add an update in case it's helpful to someone else. I was told I was having a camera endoscopy. Wrong. It was a barium small bowel serial X-ray. Anyway......Many days before the exam, I returned to my very strict NO carb NO sugar diet and added boswellia (new for me). All symptoms virtually vanished before Xray day. Five days later I went to my GI for results and got a completely clean bill of health. All symptoms were gone by then. I think the GI doctor was relieved. She... [ more ]
Oh my, I can NOT begin to tell you how relieved I am to come across this post. I've not been around for a few years as after I discovered pouchitis, again through this forum, I responded beautifully to antibiotic treatment and the same diet as CTBarrister. I've only needed antibiotics a few times. I went in for a check after feeling symptoms, fully expecting to walk out with the usual minor pouchitis diagnosis and an Rx for antibiotics. Nope. I could have written Dawn B's original post here. [ more ]
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J-Pouch ForumsPouchitis
Chlorine in tap water is harmful to the probiotics. Try distilled or filtered spring water. [ more ]
Results, again mixed. I have stopped my routine of pepto caplets and lomotil every 6 hours, and take neither of those anymore, after a long tapering period. I changed my routine to a round of Cipro/Flagyl for a week, then a maintenance schedule of VSL#3 / Rowasa enemas. I also started taking fish oil and culturelle as part of maintenance routine. I make this last as long as possible, and I do still believe the VSL3 enemas are beneficial to this regime. Rowasa alone has always been beneficial... [ more ]
And pouchboy! �� [ more ]
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Kemli thanks for all the information will give it a try. Mary [ more ]
I glad it's all working. I tried it all as well, paleo diet, homemade kefir, working out, you name it but for me nothing natural worked. Bummer [ more ]
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You can take up to 3000 mg daily. I take 1500 myself [ more ]
Also, it's important to distinguish between 1) getting no benefit at all from Cipro or Flagyl, and 2) getting benefit that only works while taking the antibiotic. If it's #2 he might need longer courses of antibiotics. I have to stay on them all the time, but I am quite well as a result. [ more ]
I'm waiting for call back from MD so I will ask about that. Thanks for suggestion! [ more ]
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J-Pouch ForumsPouchitis
Interesting news! Glad to hear it is working for you. Keep reporting back. We need all the ideas we can get. Jan [ more ]
Hi Linguist, Thought I'd check in after a few months of *crickets* and lo and behold, someone noticed . Yes I'm still taking the lactoferrin, but have incorporated it into my antibiotic rotation. Not because the lactoferrin stopped working (it still works great), but just a means to "hedge my bets" as I don't want to discover down the track that it either a) Loses effect due to resistance or b) Has some other negative long-term effect that we don't yet know about due to lack of studies. So... [ more ]
Alan, there is no evidence that I'm aware of that antioibiotics cause pouchitis. They can have all sorts of side effects, they're not very good for a robust microbiome, and they shouldn't be taken unnecessarily, but they aren't responsible for everything your imagination suggests. [ more ]
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Thanks for your input. I just completed my 3rd Remicade infusion. I think it is beginning to help. I will check in with my GI doc for a checkup as I get my infusion in an oncology infusion center. My main problem is my poor veins so last week I had a port put in so I could take my 3rd infusion without being stabbed multiple times to get a working vein. Have fun at your reunion and continued success with your thyroid cancer treatment. You have a lot going on. [ more ]
I am actually writing this from the Remicade room at my GI's office in New Haven and I am getting infused as I write this. This is my 6th infusion and 3rd at the increased dosage of 900 mg. I seemed to be doing much better coming into this infusion than my last one when I was shaky the last 2 weeks prior to the infusion. In the last 2 weeks, I was much more stable than I was in the 2 weeks prior to my last infusion June 30. I had my blood labs done on August 18 and the liver chemistries are... [ more ]
Thanks everyone! Confirmed with my doc and have eliminated it from the rotation. She did not suggest trying tinidizole because of my reaction to flagyl. For now, rotating between xifaxin and Levaquin. [ more ]
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J-Pouch ForumsPouchitis
Exactly! We are all different. Many of us try to slow things down in order to be able to leave the house and live a normal life. Some improperly seek bowel movements similar to that with a colon and rectum. Others are troubled by constipation or poor emptying issues. Stool sitting in the pouch for prolonged periods does promote excessive bacterial growth. That is true. The key is finding that balance. Jan [ more ]
I say this strongly due to the FACT of experience of myself.. Before i started irrigating my pouch would become infectected which i believe is called pouchitis antibiotics back and forth.. NUTZZZ... Get the poison out my man is my advice and only my oppinion from MY experience.. Good luck brotha [ more ]
I believe ALL with this condition NEEDS to find what works for the that individual... This absalutely works for me... Yes it will adapt eventually...100% i dont believe so..... I have yet to hear�� [ more ]
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Sounds like a good plan to me! Jan [ more ]
FYI...doc isn't concerned at this point since I'm having no symptoms. He said to come back for another blood test in 2 months for a more comprehensive panel. [ more ]
Thanks Scott....that's pretty much what I read online too. My doc ordered it since I was having tingling in my toes and fingers. Could have been medicine related or totally nothing, but he ordered a full panel of stuff. I'm still waiting to hear back from him. I mentioned the Lupus because my grandma had it and I mentioned Crohn's, because I've had docs going back on forth UC vs. Crohn's for a while. After my adhesion surgery when they got to look at everything inside, the surgeon said there... [ more ]
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J-Pouch ForumsPouchitis
Another thing to understand is that you do not become immune to antibiotics. Bacteria that is exposed constantly to antibiotics can become resistant to them by mutating to adapt to them. This is why they can lose effectiveness and why rotating antibiotics or taking them intermittently is favored. How long does this take? It varies. It can be decades, years, or months. Or, it may not occur at all. If you are lucky, perhaps a long course of 4-6 weeks will cause a asting remission. Jan [ more ]
"Antibiotic-dependent pouchitis" just means that the pouchitis can't be controlled without continuous (or nearly continuous) antibiotic therapy. Folks whose pouchitis is sensitive to a variety of antibiotics usually rotate between several different antibiotic choices, switching to the next one in rotation every week or two. This is thought to reduce or prevent the development of antibiotic resistance by the gut bacteria. Some folks here have done this for decades. Some of us have fewer... [ more ]
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I have been on pouch for the last two months. Frequency is around 20 and unrelenting . Also developed fissures and hence makes the whole process painful. The Sigmadoscopy suggests pouchitis. Anyone can offer advise on how to handle this trauma? [ more ]
Trojan, it seems as though you have unique insurance issues. I have not heard of being sent to different underwriters for additional or chronic treatment. As for myself, my GI has always been good about authorizing antibiotic scripts to have on hand for travel. The last thing you want is to be "stranded" in a foreign country without appropriate treatment. Even in Europe, getting prescription meds is a hassle. In the Czech Republic I could not even get a decongestant without a prescription. I... [ more ]
I am someone with chronic pouchitis that has also travel extensively internationally (China, Thailand, New Zealand and more). Sometimes I have been on excursions that are remote with no chance of getting any meds I might need. So I always pack with anything I think I might need. For me that is enough Cipro to cover whatever type of flare I might have for the duration of the trip, Tucks wipes, Gold Bond powder, pepto, cold medicine (both daytime and nighttime versions), Imodium and Tylenol. [ more ]
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I tried to have my Dr write me a scrip for VSL#3. Insurance wouldn't pay for it. Found out I could buy it cheaper at Costco. Hope this helps [ more ]
I pressed the issue with CVS corporate and they dug up a discount program (Argus) that will lower the VSL cost to be in line with other local pharmacies. Argus doesn't cost anything, so it may be useful to others. It's certainly more convenient than changing pharmacies. [ more ]
I'm so sorry I missed the top where you said DS!!! I do remember that the mail order option also saved money. if you are not locked into CVS compare with the other pharmacies in the area. I have saved a lot sometimes going to a small pharmacy not a big chain but it depends on your area. [ more ]
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Hi Francois Thank you for your message and best wishes. There are a few side effects, like irritation, nausea, but as I can see nothing major, so fingers crossed. This coming Friday is D-Day when I'll know whether I'll be taking part or not and I was told that if I do and the treatment is successful they will keep me on it. I'll keep you posted with what happens and I hope I don't get the placebo ! I was on antibiotics for my pouchitis which really did work. Take care Marty [ more ]
Hi Marty. Got my J-pouch surgery back in 2008 and have been having chronic pouchitis for years now, sometimes without severe symptoms and sometimes with. VLS3 has not protected me, it seems. I am living close to Paris (France) and here my gastro thinks it may take a while before Alicaforsen becomes available. Still, I am really interested in what it will do for you. Who knows, I might be able to buy and import some from other countries. Did they mention any potential side effects to you ? [ more ]
I'm about to start a clinical trial for chronic pouchitis with alicaforsen enema. This is for people who are dependent on anti-biopics to control pouchitis. The trial involves stopping antibiotics for 2 weeks and then being screened and then using an enema every night for 6 weeks while being in close contact with the medical team. If the treatment is successful the enemas only need to be administered every 2-3 months or so. This would do away with the use of antibiotics, so fingers crossed. [ more ]
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I understand the pain, well I don't understand but I have seen it. My wife has a high tolerance. I thought she was dying. She couldn't move, vomiting, sweating, etc. I'm glad you pulled through. Thank you for your tip in the grape juice. We will add that to our arsenal. Yes, the pepto like I said has helped so much. Chewables When she gets home I'll ask her how many and how often. best of luck!!! [ more ]
I've had one small bowel obstruction and I almost died ... Hospitalized for a month and I can honestly say that I've never experienced pain to that extreme... EVER!!! I did learn after all was said and done... White grape juice breaks up the obstruction so now I always keep a bottle in the house! I live on Lomotil and Imodium has never helped me. I may try Pepto. Before my reversal (when I had the OSTOMY) I took Pepto and it helped a lot!!! Thanks for the reminder �� This site is great!! [ more ]
Also, please hit me up. After a lot of years, I've learned some. She's been successful. Delt with her first and only blockage recently. Figured out what caused it. ..... Extended periods of time not eating, followed by a salad. No medical intervention, other than a drive to ER, IV, X-ray, and magically it cleared itself out. My honest opinion was her moving around, and car ride helped. But I'm no doctor. [ more ]
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Most of the IBD drugs are off label for pouchitis. The Drs bill them for UC or CD. I'm using Entyvio now with good results. [ more ]
Hi, I know this topic is way too old but I amcurious about the use of rebamipide in IBD. It is said to help mucosal healing throughout the gastrointestinal tract. I believe it may be used as an adjuvant drug along with regular therapy. I guess it's worth to give it a shot. Rebamipide is available in a few countries only and India is one of them. Luckily, a friend of mine is India now and she is coming back to Istanbul, Turkey in a week. I have antibiotic-refractory pouchitis. I have been on... [ more ]
I'm actually not sure if it's even approved in the U.S. for anything. The studies they've done with this have primarily been in Japan. I wonder if they have done more studies there since this one. I did email one of the Japanese physicians whose name is on the report, but haven't heard anything back. It may be beneficial; it just needs to be made available, provided it is safe. [ more ]
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If you feel fine when on antibiotics, and you feel like you have pouchitis shortly after stopping them, then you probably have pouchitis again/still. Hopefully a more aggressive round of antibiotics can get it to go (and stay) away. There's no reason to wait, unless your doctor thinks a test for C diff is advisable. Some of us have to stay on antibiotics all the time, but it's premature to assume that's your situation. [ more ]
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I usually go at least 8x per day. 1 during the night. 2-3 before work, 2 during working hours, 1 after dinner 1 before bed. Throw an extra 1 or 2 occasionally I take 2 lomotil 4 X per day. Metamucil morning and night. [ more ]
Dear Scott, Thanks for the response. I'm pretty good during the day but sphincter control is weak which is awkward when I'm not near a bathroom. Accidents happen. My sleep is interrupted several times during the night but the problem is worst from about 5 to 10 PM. The amount I eat at dinner doesn't seen to make any difference. I avoid high fiber foods and limit intake of raw fruits and veggies. I'm taking Lialda (related to Asacol) twice a day. Also, Immodium before meals and Lomotil when... [ more ]
Ten could be a bit of a nuisance, less so if they are all during the day, leaving your sleep uninterrupted. It's above average for a healthy, well-functioning pouch. Are you experiencing any urgency or leakage? Most find that much more troublesome than the number of bathroom trips. What happens if you delay a trip to the bathroom? I can't tell what medicines you've tried, so I can't make any useful suggestions along those lines. [ more ]
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I had similar symptoms for a couple of months, three years ago. Went to the doctor, where I was it was most likely a mild flare. I knew it didn't feel the same as usual, but figured he knew what he was talking about. Matters progressed until I was in severe pain, vomiting, etc. After five days in the hospital trying to get things moving, they discovered through testing that I had a complete blockage caused by adhesions wrapped around the small intestine (I had my colon removed 15 years ago). [ more ]
I too have had problems for the past couple of years feeling blocked and needing to strain. I have had my Jpouch since 1991. I never really noticed that many problems with it until the past five years. I had a balloon dilation procedure a little over a year ago, but I never noticed much difference afterwards. Lately I have been doing something similar to what Wes mentioned, but not with a candle. I purchased a set of Hegar dilators on the web. You can find them starting around $20. They... [ more ]
Is this method still working for you? When you shave the candle is it the length and width of your thumb? Do you insert it in a glove or something for fear it could break off and do you move it around at all or just let it sit? Also do you purchase a fleet enema and just fill with warm water? I'm having so many issues with a stricture I'm desperate to try anything. [ more ]
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J-Pouch ForumsPouchitis
Once a week aspirin should be OK as long as you do nothave GI symptoms. While it will affect your platelets and make bleeding more brisk, it will not necessarily cause pouchitis. But, all bets are off if you begin to have symptoms. All pouches have some level of constant inflammation, so what is worth treating depends on the degree of inflammation. You were placed on a version of mesalamine, which is for IBD, so I would suspect your inflammation is not the minor, subclinical type. Still, if... [ more ]
My doctor put me on Apriso (because Flagyl makes me sick). He wants me to come back after 2 months. I hope Apriso will do the needful. Just trying to avoid another Pouchoscopy, I would keep monitoring for any bleeding. If that happens I am planning to take the Cipro. [ more ]
Mayer, there are two schools of thought on pouch inflammation with no symptoms. Some folks consider silent inflammation as a problem worth treating, and others consider it as a "normal" finding, not worth treating. It's a bit of a nuisance to treat, since the only way to tell if the treatment is working is yet another pouchoscopy. I'm not enthusiastic (for myself) about treating things unless they are causing a current (or at least well-understood) problem. What does your doctor recommend? [ more ]
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Pepto Bismol *is* an antibiotic, with some advantages and disadvantages (just like every other med). I suggest you stay within the labeled dose. It's generally very well tolerated, but there have been occasional reports of bismuth toxicity from it. [ more ]
PB long term is a way better option than Abs long term...I hope the PB continues to help, good for you. Your body will be much better off the ABs...I got symptoms of thrush down my throat etc every time I finished AB's. Also, Cipro can affect your tendons so you may feel achy when you come off them. Good luck. [ more ]
On a whim (and because I read about it being used by some on here), I decided to pick up some Pepto Bismol at Walmart the other day ($1.96 for 40 of the generic caplets is awesome!) and lo and behold it works! No more frequency issues, bloating, gas, urgency, etc. I've been off my antibiotics for about 4 days now, taking 2 PB caplets in the morning and 2 in the evening. My poop is black, but it doesn't bother me. Anyone else taking PB in place of ABs, and if so how much? Anyone on PB long... [ more ]
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J-Pouch ForumsPouchitis
Not for the same reasons but yes. I lived off of a semi-full fluid diet for months...my pouch was twisted an I could not transit solids safely. It took about 48hrs for my body to stop asking me for solids and then it became 2nd nature. That said, I have put myself on to liquid diets to clear myself out for extended periods of time without any difficulty..you just need to maintain hydration, protein and vitamins...a liquid supplement or gummy vit might be needed to keep strength and energy... [ more ]
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Thank you so much!! It really does help. Good luck with your surgery [ more ]
The Cleveland Clinic offers financial assistance for extreme financial hardship as well as Special Medical Circumstances for treatment that can only be provided by CC. You can get more info online www.ccf.org/financialassistance or call 866-621-6385. I am a new patient of Dr Shen and l live 1,000 miles away. His staff works very hard to accommodate patients from all over the world. After the initial consultation, they will try to schedule all tests & procedures within a week or so in... [ more ]
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What is a fecal transplant or inplant? [ more ]
not to get into a pissing match here, but I find it fascinating that my doc at UCSF in the same department shared with me a marginally different view of FMT. I asked her opinion a few months ago ahead of one of my frequent dilation pouchoscopys and she opined that while FMT holds great promise for solving the cDiff problem, she is less convinced of its utility in other venues. she expressed firm belief in the microbiome being the underlying issue in our issues, and that introducing FMT would... [ more ]
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Bag balm used on cow udders and can be bought at Walgreens works wonders. Been using it for years. No burning and heals any irrritation within a couple of hours. Has been a lifesaver. [ more ]
thanks guys and girls for your recommendations - greatly appreciated [ more ]
Barrier cream is a must after every time! I like Bepanthen. But if the burn really strikes, I opt for a cotton bud with a little lidocaine cream on it.. Pop it up there and you'll be instantly comfortable again [ more ]
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Wow, Stormwatch, I'm sorry for all that you've been through! I think you're right that issues like pouchitis can be caused by not emptying our pouches well enough (there are many other triggers as well, but I have no doubt that's one of them!) It's interesting that you mention sitting on the toilet backwards - have you ever heard of the Squatty Potty ? It's a little stool that's meant to lift our knees into a more natural position for evacuating our bowels (or j-pouches, in our case). I... [ more ]
List of antibiotics I've tried (but not chewed in paste or taken in liquid form) since 2000: Flagyl, Cipro, Levaquin, Amoxicillin, Tequin, Zyvox, Xifaxin, Augmentin. After cultures were taken I was told Augmentin and Cipro. They didn't work until randomly, just as a hail Mary pass(I had just noticed that I hadn't digested spinach!) I chewed the antibiotics. [ more ]
If you decide to take your antibiotics the way I described (Cipro tastes terrible. Augmentin tastes not so bad) and you improve within days, please let me know? Dr Peter Rubin confirmed my pouchitits is non-existent. The reason is the fact my intestines weren't absorbing antibiotics. I am 90 percent better now. That should motivate people at least to look into this with your doctor. I could not leave my bed a yr and a half ago. I had pouchitits and rectal abscess. I go to the bathroom about... [ more ]
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Janine, I see a ND regularly and I have always used Wild oregano oil and Grapefruit seed extract for antibiotics. I also use a probiotic from Dr. Dadamo (blood type diet) who makes specific probiotics for your blood type. I have seen good results taking 2 capsules 2x a day. I feel if we constantly take cipro or regular antibiotics it will always distrupt our delicate GI systems bacteria. Kim [ more ]
In an effort to boost my natural probiotic consumption, I had two sauerkraut meals this week, one with kielbasi, the other with pork. I bought a new sauerkraut brand I never tried before, called Saverne. It was quite good, made with craft beer and a little on the sweet side. I Hungarianized the sauerkraut as I had seen my mother do many times, by adding a dollop of sour cream and paprika to it, and then the meat, and letting it all simmer together. It's very good - and a truly underrated but... [ more ]
Thanks, Sharon! I definitely suspect hormones, and was *so* hoping I'd go back to "normal" after getting the IUD removed. I think you're right, I'll just have to be more diligent of watching myself when I'm in that mid-cycle danger zone. I just went on cipro for the 2nd time and it helped immediately, but I don't want to have to take it every month if I can help it! [ more ]
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The Enteragram is helping me with my pouchitis. So glad my Mayo Dr. Talked me into it. Been on it 6 weeks. [ more ]
I tried it but it did nothing for my pouchitis . I'm glad it's working you some of you. I believe the packaging says it's used for IBS. Perhaps your experiencing IBS of the pouch and that is why it is helping? [ more ]
very interested in this, as I had heard they were trying this for pouchitis. but when I asked my GI who is relatively research advanced, she kind of waved me off, questioning the value of food type products. good to hear some positive stories, maybe I will insist we give it a try. surely it must be better than popping antibiotics. also curious had any of you tried VSL#3? I tried it for a month and saw zero benefit, similar fail with a shorter course of Florastor. [ more ]
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Pretty much immediately when I tried it [ more ]
Remicade was necessary because my annual scopes showed that while the other meds (antibiotics, entocort) were treating the symptoms, the inflammation was not getting better. Since I had dysplasia in my colon and the rectal cuff is left in when they perform the surgery, inflammation isn't a good thing. It's generally not a good thing but the preoperative diagnosis of dysplasia in the colon makes it an ever bigger concern. The Remicade which I started November 2015 cleared up the inflammation... [ more ]
ctbarrister, Glad to hear that you are doing so well. Just a curious question, why Remicade? are you still dealing with crohns? You are happy with your j-pouch? was a good decision for you? I will be having surgery soon that will end up with a j-pouch,,,,,at least that is what I am leaning towards Thanks for the help and info [ more ]
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Definitely don't need that in my life. [ more ]
Lactulose is a prebiotic, not a probiotic. It's an indigestible sugar. I have taken it and I find it to have a powerful laxative effect on me. Be careful with the dosage because it will really make you crap a lot. [ more ]
Hi, I've had my j pouch since 5/14 & many things have been tried. I don't know what lactulose is but I have controlled gas with probiotics that are for my blood type by dr. Dadamo & & liquid probiotic from my ND. Also I swear by 1/2 tsp of pysillum husk powder & 1/2 tsp of slippery elm powder before you eat or when you have loose stools. Originally you might experience gas but as you take every day the stools form, digestion slows down & then gas disappears. I also never... [ more ]
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One possibility is that you might have gotten a common viral GI infection or food poisoning while on Cipro. [ more ]
Update - about an hour after posting that I went it was normal! ("Normal" for me these days is small, formed pieces kind of like cheetos.) I've since gone twice more with the same results, now I'm thinking the gas and discomfort is a side-effect of the Cipro and I should just ride it out. But if anyone has input I'm still curious! [ more ]
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If the pouchitis/cuffitis is from ischemia (insufficient blood supply) then medications are unlikely to do the job. OTOH it sounds like antibiotics used to work for you, which doesn't fit well with ischemia, unless Shen believes the ischemia has developed somehow after a delay. If it really is caused by ischemia then the hyperbaric chamber might help by increasing the oxygen in the blood that does get there, but you might ask him why any improvement would be expected to continue after the... [ more ]
Hi, I was recently at Dr. Shen for my first visit. I have been having Chronic Pouchitis ever since my pouch was formed. I have tried multiple meds to treat it but none have worked aside from antibiotics which are no longer effective. I went to Dr. Shen because I wanted to see someone who specializes in pouches. He found on the pouchoscopy that the main area of inflammation was the cuff (Severe Cuffitis) and because of that said I have ischemia related pouchitis. I also have mild pouchitis in... [ more ]
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J-Pouch ForumsPouchitis
Hello, I haven't been on this forum for quite a while. I have had pouchitis twice since my surgery in 2001. Perhaps I had it more often but it was subclinical. I think I am having it now. I have multiple other problems as well. I was diagnosed with CLL - chronic lymphocytic leukemia and SLL -small cell lymphocytic lymphoma which may have to be treated because of a SBO I had recently which may be related to the proliferation of enlarged lymph nodes in my belly. I also have a MAC bacterial... [ more ]
We are successfully treating my chronic, retractable pouchitis with a 2-prong approach-I rotate antibiotics every 2 weeks (Levoquin & Xifaxin) AND I take Immuran to suppress immune response. These antibiotics alone were NOT cutting it, but after being on the 2 prong treatment for over a year I stopped the antibiotics for awhile as I was trying to fight off what I thought was thrush (turns out it wasn't). Lo and behold, pouchitis symptoms started to creep up, so I need both but when on... [ more ]
Cheers, I experienced a similar situation as you. I had a flu bug about a month ago that ended it in a awful case of Pouchitis (in my case I had all the symptoms). I tried CIpro (it works sometimes, other ones not) with no luck, then my doctor put me on Flagyl (made me too sick). Finally after feeling terrible for weeks, the doctor put me on 40 mg, Prednisone (which I know is not a good way to treat Pouchitis, but I was desperate) and I started to feel better, my inflammation reduced... [ more ]
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J-Pouch ForumsPouchitis
Hey everyone, just an update. I have been taking two sachets of VSl #3 morning and two at night and they have effectively taken over and now things are much more normal. I just wanted to add that i have been seeing some very positive results from l-glutamine (5g powder day and night) and i have read in several places that it has been used to recover from anti-biotics, chemo and stress on the body. I can report that it is helping my tendons,ligaments and muscles and even really helping with... [ more ]
Absolutely probiotics can cause gut symptoms. Mostly gas, but also diarrhea. It varies person to person and with each strain of probiotic. But, don't expect quick positive results from probiotics. It can take weeks or months for probiotics to colonize. As for diarrhea from Cipro, sure. Why not? ANY antibiotic can cause diarrhea as a side effect. Like any other med, side effects vary person to person. But, it is more typical during treatment. If the diarrhea persists, testing for C. diff is a... [ more ]
Just trying to get my head around why i have watery diarrhea post cipro. Keep thinking back to everything going haywire when i started VSL#3, but i thought to myself that's impossible, probiotics help not make things worse. So i did a bit of searching and found this "Healthy bacteria may also produce gas and diarrhea -- but usually not for long. Until the "good" bacteria get a strong hold on the yeast environment caused by the "bad" bacteria, you may experience a bout with diarrhea -- if you... [ more ]
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J-Pouch ForumsPouchitis
I used to use paragoric liquid which is very similar. It was mainly used to help thicken the stool. It worked well for me to help do that, for several years, however I did not have pouchitis at the time. I was trying to thicken stool to reduce incontinence due to a damaged sphincter. [ more ]
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J-Pouch ForumsPouchitis
Yes, I meant cuffitis, not pouchitis. My brain was wandering while I was typing. Doh! Jan [ more ]
Scott, thanks, I'm gonna call my doc tomorrow and see what he can do for me. [ more ]
Brad- I think Jan meant to write that bleeding is usually indicative of cuffitis rather than pouchitis. It's not a perfect indicator, but unless a pouchitis ulcer has opened up a small blood vessel, "painting the toilet red" is most likely cuffitis. If you've had successful cuffitis treatment before perhaps your doctor would prescribe it again (without a visit while uninsured). Even if you've never had it before you still *might* be able to get a prescription with a phone consultation. FYI,... [ more ]
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J-Pouch ForumsPouchitis
There's no particular reason you can't take prednisone and an antibiotic at the same time, though you may have trouble figuring out what's helping. Have you tried any other antibiotics besides Cipro and Flagyl? Prednisone is an unusual way to treat pouchitis. Have you had a pouchoscopy to better see what's actually going on? Treating pouchitis based on symptoms is fine. If the antibiotics don't work then ensuring the correct diagnosis becomes more important. [ more ]
Hi guys, I really need some help. I been dealing with Pouchitis (we think it is because my symptoms) and after trying Cypro (worked for a while and then not anymore) and Flagyl with no success, my GI doctor put me on steroids (started with 40 mg and down to 20 mg now). I think my inflammation is better because in general, my condition has improved, but I'm still dealing with so much soreness, burning sensation on the Jpouch, pressure, bloating that makes me think is bacteria overgrowth that... [ more ]
prednisone is the only thing that has been working for me. I came off it two weeks ago when I started Cimzia since then I have been in terrible pain most nights. I don't want to go start back on prednisone my face has been swollen for months but if the pain does subside I may be back on it shortly. 40mg usually knocks out the pouchitis completely after three days. [ more ]
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J-Pouch ForumsPouchitis
Hello Do you take VSL#3? It helpep me very much to prevent pouchitis Eitan [ more ]
others know more about pouchitis. but I don't think pouchitis just comes and goes without some meds. I mean theres a big debate about pouchitis, Jan and others have posted a bunch of different academic papers, there's almost a belief that there are different phenotypes. but I digress, if it was just in passing, its possible you simply ate something that irritated the pouch, so yeah maybe you inflamed it a little ie gave it "itis" but to my mind that's not pouchitis. [ more ]
So today things have been great. No urgency and much fewer trips to the bathroom. I did call my doc yesterday, but she is out of town. Still haven't heard back from the nurse practitioner. Wonder just how much experience she has with jpouch cases. Maybe I was just having a couple of bad days? Can pouchitis come and got like that? Dang this confusing stuff! [ more ]
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J-Pouch ForumsPouchitis
prior to having my colon removed, hydrocortisone enemas, unpleasant as they were, were the most effective med for me. mind you this was 30 odd years ago, so that might be less relevant to todays discussion. that aside, I did ask my doc recently if she thought it might be a worthwhile treatment option and she agreed that it might be worthwhile to try. we haven't, but she wasn't against it. I am a little surprised by the thinning comment and fear of creating incontinence. [ more ]
LJZ, I used cortifoam for a few years when I still had my colon and was not informed of any risk of it leading to potential incontinence (and knock on wood have not had issues in that department outside of active flares). In the time I took it I had no negative side effects, and LOVED it after a history of dealing with retention enemas. Did your doctor tell you that it could cause a risk of incontinence with a j-pouch? I'd be very curious to know. Good luck! Janine [ more ]
I have used Cortifoam for cuffitis, but stopped because of concern over it thinning the tissue down there and the possibility of it leading to incontinence. I do believe it got rid of my Cuffitis and bleeding, but am having other issues now and thinking of returning to use it. Any information on possible negative side effects of cortifoam, especially any possibility of it leading to incontinence would be greatly appreciated! Ljz [ more ]
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J-Pouch ForumsPouchitis
Flagyl 500mg is without a doubt the worst tasting med on the face of the earth. However, it is the only broad spectrum antibiotic that continues to work for me. If I don't use Flagyl I start burning, it feels like a match was lit in my rectum and other symptoms surface. So for me it is Flagyl. Good news it is cheap [ more ]
I've actually gotten to the point where i can't even think about taking Flagyl without gagging. I start gagging when I pick up the bottle. Funny, huh? Sadly, it's the only thing that resets my system for another 8-10 days. [ more ]
Thanks I am the same have had this since day one, surgery was still the right move �� [ more ]
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J-Pouch ForumsPouchitis
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Bill Johnson founded the J-Pouch Group in 1997.
After a life long battle with Ulcerative colitis, Bill finally had his colon removed and was given an ostomy in 1993. A failed attempt for a j-pouch and then many surgeries to get back his health gave Bill the motivation to create a web site dedicated to giving support to patients who have had or are considering j-pouch surgery.
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