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J-Pouch ForumsHelp! Need advice now!
Over active j-pouch
Kushami @Andrew Fletcher , are you in the UK? If so, the nurses at St Mark’s can help. Scroll down to the heading that says “Pouch Service”. https://www.stmarkshospital.nh...ices-a-z/stoma-care/ Have you tried smooth Metamucil (fine psyllium husk powder), a teaspoon mixed with minimal water right before main meals or fibrous snacks? It can have a very nice cushioning effect and cut down the number of bowel movements (BMs). [ more ]
Kushami ❤️
Scott F That’s a lot of loperamide and codeine. Have you tried delaying bathroom trips? Over time by gradually, gently increasing the interval between trips you can generally increase your pouch capacity. This is sometimes called “stretching the pouch.” Psyllium fiber can add bulk to the stool, which might enable you to gradually reduce the loperamide and codeine. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pelvic Floor overtensed
JacobW Does anyone have experience with Botox to help relieve symptoms? Just confirmed through manometry I have similar pelvic floor issues. Biofeedback has a long waitlist, and I'm looking for some relief until then. Currently working with Dr. Kiran and Dr. Shen at Columbia Presbyterian in NYC and am scheduled for a 50% Botox injection next week. Any help is appreciated, thank you. [ more ]
JacobW Love to hear that! [ more ]
NikiasVW https://www.j-pouch.org/topic/...8#724729909443105758 Hi, I'm doing so much better nowadays, out and about living life! Still trying to figure out what foods work or don't for me. But back at work and sports. Most importantly I can finally show up like I want for my litle daughter ❤️ [ more ]
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J-Pouch ForumsPouchitis
20 years with a pouch
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
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 ForumsGeneral Discussion
TransAnal mucosectomy via Tamis completed a month ago
New577 Having ongoing cuffititis, my GI took out two inflammatory polyps at my last scope. Since you seemingly no longer have any colon tissue remaining, I doubt polyps will be an issue for you. congrats on the surgery. Glad to hear there an alternative out there to remove the cuff, which could some day be in my future if I do not get this inflammation under control. [ more ]
Len78 scott, thank you i will still be contacting the drs office. sometimes i see what looks like a little streak or small circular pieces not that large i dont know if its safe or valid to call them clots within the stool... im also alittle paranoid. my stay in hosp was complicated by 3 weeks, ng tbe, ileus/peri rectal abcess. but i got my jpouch sewn to the anus now and im down the dentate line. a 5cm cuff was quite a long cuff when typically they 2-3 cm i never had an ostomy so i think thats... [ more ]
Scott F I don’t think there’s likely to be any connection between the blood and polyp recurrence. I’d guess you’re still healing. It would be reasonable to message the surgeon to ask, though. This will more likely be productive if you provide complete information about the bleeding: color, quantity, frequency, is it well-mixed into the stool vs. separate, etc. I know it’s very difficult to estimate blood quantity, but even a broad range is better than a shrug. [ more ]
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J-Pouch ForumsGeneral Discussion
Sibo
New577 I have SIBO 2x/year. First time confirmed with breath test, subsequent times by symptoms. i could never get xifaxin approved by private insurance and Medicare part d cost is prohibitive. I have discovered that 14-21 days of bactrim will reset my microbiome imbalance. my GI is comfortable with the 2x / year antibiotic treatment, so… wash, rinse, repeat. I guess if I gave up sugar I would probably avoid it, but since sweets are the only real food pleasure in my life these days, I’m not giving... [ more ]
pouchmonkey Hello! I haven’t been active here for awhile, I stumbled across this thread googling long term SIBO pouch solutions-looking for something that works besides endless rounds of Xifaxan-is there a specific plan or protocol specific for J-pouchers I could download or read? So much conflicting information & searching online just turns into instagram ads promising gut health with weight loss & clear skin…I’d love some real advice with a plan & timeline if it exists! @vanessavy is your... [ more ]
Ginnylee ❤️
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J-Pouch ForumsHelp! Need advice now!
Increased urgency & frequency
JacobW Hi VB, This sounds so similar to me right now! Curious how you're doing now and where the stricture was? Thanks [ more ]
Terradon Thanks for letting us know! Always good to hear how it turns out. [ more ]
VB_93 Thanks all for your replies on this matter. Just an update - I have since had a scope done and it showed a very significant stricture that was so tight they couldn't actually pass the scope through! Hence the feeling of not being to completely empty and frequent visits to the bathroom. I am awaiting a dilation procedure for this and my GI seems to think this will resolve the issues I am having. I hope this helps anyone else who may be in the same boat and experiencing the same symptoms. Kind... [ more ]
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J-Pouch ForumsGeneral Discussion
Symptoms of blockage or partial blockage?
Mysticobra Try a heating pad if you know you have one coming on. Don't eat more! If it gets bad go to the er. A full blockage can kill. Quickly. You'll know by the pain if you have one. You'll get bloated. And the pain is distinctive. Once you have one. You'll know when one starts. Richard. [ more ]
Jacqueline I realised now I've had a couple just lasting a day or a night.No bowel movements for a few hours pain to left and above old stoma area and especially in upper mid back.I try to stretch do some child's pose or even better...bottom In the air elbows ,down as well as drink warm water and massage tummy. [ more ]
JeffDC I got my first partial obstruction several weeks ago. On a Monday, I noticed that my numbers of bms were reduced, with thicker, more solid poops. By Wednesday, I had some strong pain right at my old stoma site. So I went to my GI late in the afternoon, and was sent to the ER By this time, the pain had spread out across my a lower abdomen. I am not sure what it was that caused the blockage. It wasn't dehydration or any food that I know of. But it was good for a three day vacation at a local ... [ more ]
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J-Pouch ForumsGeneral Discussion
Something that Has Helped my Pouch... and Bathroom Dreams
Jacqueline Yes I think it's to stop us going in bed [ more ]
ElmerFudd I had to jump on here and add a post about a couple specific bathroom dreams I’ve had recently. The funniest one… I was in a mall or something looking for a bathroom (to poop, of course). I looked in like 4 different ones but they were full or there was some other reason they wouldn’t work. Finally I was at a food court and asked a guy working there is there was a bathroom. He said yes and pointed to where they were, although I couldn’t see them from where I was standing. He said, “We are SO... [ more ]
Mark234 ❤️
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J-Pouch ForumsGeneral Discussion
paradoxical sphincter contractions?
JacobW Hi there, how are you doing today? I'm also a patient of Dr. Shen and Dr. Kiran and Dr. Shen believes I'm dealing with something similar. Uceris, Valium suppositories haven't worked. Thanks [ more ]
pouchington thanks guys. damn pelvic floor issue. jeepers... [ more ]
Jan Dollar The suture line could be bumpy, particularly if you have staples. The cuff would be between the suture line and the anal canal. I certainly would trust what Dr. Shen tells you, as he definitely is the expert on all things j-pouch. You could easily be mistaking one thing for another, as I am sure that your finger has not been up as many butts as Dr. Shen's (or any GI for that matter). Pelvic floor dysfunction is no picnic, and topical cuffitis treatment would not likely help in any... [ more ]
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J-Pouch ForumsGeneral Discussion
Can only empty pouch when cramping??
JacobW Hi there, I'm a month post-takedown and your symptoms remind me of how I felt with my loop ileostomy (and current struggles with new J Pouch). Curious how you're doing today! [ more ]
Jan Dollar Perfect attitude! Also, for many of us we just had to unplug from all the information on the internet, because it is too easy to see ourselves in every catastrophic outcome. Not a good place to be when you need a positive attitude. With every procedure I had, I would go into it with every confidence that things would be OK. Even when I had complications (and I had my share), I just KNEW things would work out. They did. Be prepared for the worst, but hope and expect the best! Jan [ more ]
KeepMovinOn "trying to remind you not to borrow trouble" - good advice. My mind is going pretty crazy these days with trying to make sure I am making the right decision for my family and kids. They lost a lot of time with their mom last year and I am just now starting to get back to myself. Wanting to make sure I research as much as I can to make the right decision and keep improving in quality of life rather than going backward. Stress hormones are not good for anyone, though, are they? Sometimes I... [ more ]
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J-Pouch ForumsGeneral Discussion
Reaction to Certain Foods
HeatherV I swear my food tolerances change even by the day. I can eat the exact same things two days in a row and have completely different outcomes. Capper - I’ve noticed that if I eat 3-4 twizzlers at night, I’m up less to go to the BR! I guess it’s like eating marshmallows before an ostomy change (I hated those days) also - I usually don’t get the tenesmus until the evening hours. and I can’t figure out a rhyme nor reason for it. [ more ]
Sara Marie ❤️
capper I don't generally find that eating a greasy slice of pizza is more troublesome for me. I was just referring to the fact that I don't seem to absorb the grease! Blueberries are usually a regular part of my diet. 80% of the time I use the frozen cultivated ones and either put them in my oatmeal in the morning or add them to my smoothies in the Ninja. Obviously, fresh is better. And when given the option, wild blueberries are better than cultivated (kind of like farmed vs. wild fish). However,... [ more ]
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J-Pouch ForumsPouchitis
My current regiment
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
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 ForumsGeneral Discussion
First week of functioning J pouch after take down
Former Member ❤️
JacobW Hi Carin, I had my reconnect a month ago and my symptoms right now are very similar to yours. How are you doing now? [ more ]
Carin Thank you so much for that assurance! My Dr. now has me taking Benifiber 3xa day and Imodium at least once a day. I’m 3.5 weeks out now. It’s getting a little better, but still difficult to be out in public walking for too long. Like grocery shopping sucks. But its sooooo helpful to hear these troubles will go away and life will get to normal. Thank you! [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-pouch surgery and Long Covid
George Shaikh I’ve tried physio cHiro and massage for a year. Not much help. Doctor thinks it’s inflammation somewhere caused by covid. I limit my Advil. And Tylenol no help. So for me it’s pointing towards inflammation. However, two of my doctors say they don’t know much about Covid in a caring way. That’s better than someone giving ‘Inflated’ info. . I have not ruled out acupuncture but with the frequent bowel movements I and long covid, I don’t have much time left in the day. I am grateful for the good... [ more ]
Sara Marie I'm so sorry that is happening! As you probably already know, Advil (NSAIDs in general) can cause adverse reactions in some people's pouches, which could be the source of the low back pain. I have had it from pouch inflammation before. I have also noticed that pain killers (even acetaminophen) make my pouch mad with repeated use. Have you been to acupuncture? A knowledgeable Acupunturist can help balance the immune system to clear up stuff like long covid. They might have dietary... [ more ]
George Shaikh After the Advil starts to wear off I get nasal congestion, headache, fatigue and what’s weird is lower back pain. I’ve never had a back pain issue. The fatigue can even come after a nap. These symptoms are daily. [ more ]
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J-Pouch ForumsGeneral Discussion
Cardiovascular Health of Those With IBD
Former Member ❤️
CTBarrister Thanks Rose. It's extremely difficult to lose a parent, especially one who was your best friend, mentor, and next door neighbor, and someone you did things with socially, like go out for beer and pizza with other friends, and weekend day trips. The aftermath- dealing with funeral arrangements, bills of the parent, cleaning out his condo, selling his car, and other Estate issues, is not easy either. I have gotten through most of it, but it's really, really time consuming and energy draining. [ more ]
roseviolet CTB, condolences on the loss of your father. You watched over him well and he was fortunate to have such an educated son keeping an eye on things. --Rose [ more ]
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J-Pouch ForumsGeneral Discussion
Nice research on pouch imaging from Dr Holubar and colleagues at the Cleveland Clinic
tulsamom ❤️
Former Member Thank you for the info. Very much so. It took 8 hours for them to unstick all the little pieces from my organs and I had an accidental perforated lung. Mine was left too long. Best of luck to you. [ more ]
Kushami As far as I know, they are unconnected. I didn’t have mega-colon, and it’s not mentioned in the research paper on megapouch by Shen and Sashi as a risk factor. So I don’t think you are at any greater risk of getting megapouch than the general j-pouch population. I’m sorry to hear you had mega-colon. Did that complicate surgery? [ more ]
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J-Pouch ForumsGeneral Discussion
Aloe Vera Juice
Sara Marie Thanks for the update! I found it helpful for a while but then it started to wear on my kidneys, so I have put it on hold. I think it could be an "as needed" supplement for me for acid reflux. It definitely helped with that. I never stopped applying it topically, just stopped with the ingestion of it. I liked the idea of it helping with wound healing for internal stuff, but am taking other things for that at this time. [ more ]
Chook2 This has been a game changer for me ,BMs have lessened and everything runs alot smoother.people comment on my skin looking better. [ more ]
Chook2 After day two im noticing better skin and pouch function.would recommend trying. [ more ]
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J-Pouch ForumsGeneral Discussion
Take down
Nancydiane Thanks I appreciate your response good to know things improve with time. [ more ]
Kushami I hope it all goes well, Nancydiane. Slippery mucus on its own is quite different to faeces, even the looser bowel movements you get with a j-pouch, so don’t look on problems with mucus as indicating future problems with incontinenece. Having said that, in the early days of the pouch getting connected, most of us have had to deal with small amounts of incontinence. But as your body adjusts, and you learn your new diet, this usually improves. Some people pop a folded piece of toilet paper or... [ more ]
Kushami ❤️
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J-Pouch ForumsGeneral Discussion
Just went to Cleveland clinic
Kushami @chili123 , how are you going? Did you try psyllium or loperamide? How did your scope go? [ more ]
Scott F The group here seems more or less evenly split over sedation for pouchoscopy. Certainly if you can’t tolerate it while awake then sedation is necessary. Each of the drugs has a different purpose, though they can all help with frequency and its consequences. In addition to managing whatever underlying problem you’ve got (e.g. antibiotics for pouchitis, mesalamine for cuffitis, whatever), there are a few basics: psyllium (Metamucil) can bulk up the stool and make it easier to hold and less... [ more ]
chili123 Thank you!! I'm ready for relief. So glad you found what works for you. I bought some so will give it a try [ more ]
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J-Pouch ForumsOstomy & Skin
Anal skin breakdown and butt burn
Jgrant Hi, I know I’m very late to this discussion, but I’ve had a lot of bile salt diarrhea, and the pain is indescribable. I had my ileoanal anastomosis in the 1980’s and just recently found a product that works incredibly well. It’s made by Medline, and it’s called Olivamine Calazime skin protectant paste. You can find it online. I got mine from a colorectal surgeon when I was having trouble with fissures brought about by a combination of SIBO and retrograde cricopharyngeal disorder (I can’t... [ more ]
ElizaB Thank you for your prompt reply. I will start it today...fingers crossed it helps out because I am at the end of my rope with this recent episode! [ more ]
suterd I use on top of each other in the morning before work if I am running late. I try to use the ketoconazole first normally and wait about half hour and then the triamcinolone...it is thicker. Then head off to work. In evening I do ketoconazole when I return home and the other before bed. So I try and do some space between. Hope it works for you. Unless I am having lots of issues, it works. Went to dermatologist when the surgeon was horrified about my butt. But even with occasional issues,... [ more ]
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J-Pouch ForumsGeneral Discussion
Severe gas pain- can’t stand up
FelixGust Have you thought about diet and what might be causing gas? [ more ]
Mysticobra This! "it’s like you swap one thing for another. At least I’m not going in my pants all the time. There’s that" Otherwise I have no advice other than what was given. It hurts. And it sucks. Agree 100%. Richard. [ more ]
Kmiller I stand up, bend over like to touch my toes for about ten seconds then sit back down on the toilet. Generally I can feel the pressure and hear the gas gurgle on through. This helps me release it 99% of the time. [ more ]
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J-Pouch ForumsGeneral Discussion
K Pouch
Cathy Cooperman I’m writing to tell everyone to do their research before they do any of these surgeries. I was going to do the K pouch surgery. I could barely get info from NY surgeon. His office refused to speak with me about complications. They said let’s just talk about positivity. I followed up with another surgeon who told me that not only would I have the initial k pouch surgery but three more surgeries would have to be done. Thanks but no thanks. Too high risk. I feel like I escaped a bullet. [ more ]
Scott F There are plenty of K-pouchers here, Cathy. Instead of posting this in “General Discussion,” though, maybe post your question (and read prior threads) in “K-pouch Korner.” [ more ]
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J-Pouch ForumsPouchitis
Vancomycin for Pouchitis and new PSC diagnosis
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 ForumsGeneral Discussion
Leakage after emptying
Kmiller Do you have issues emptying completely? My doc told me I actually have constipation issues and the leakage is overflow from that. Just slight irrating leakage. I take miralax daily now and it has made a huge improvement. [ more ]
Trojan I recommend trying the cotton ball. I've been doing this for the last month. For me it was uncomfortable at first (and still is a bit), but a big improvement on the sore skin from just using pads and constantly feeling wet between my cheeks. [ more ]
Bubbapup I could try the cotton ball idea, but I think I’d feel weird with it there? Idk. Prob worth trying. Doc says to increase colestipol to 6 per day (max dose) and I did that today and it cut my trips to the bathroom down a lot. He suggested I continue with my current regime but didn’t have any other suggestions, just told me that the bile can be indeed just really acidic. He suggested I call my surgeon- maybe they might have suggestions. I feel like it’s not surgical though. Thoughts on if they... [ more ]
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J-Pouch ForumsGeneral Discussion
gallbladder,dilated bile ducts, and psc concern...
CindyO Thank you so much! [ more ]
Pouchomarx Dr Raymond Onders at University Hospital in Cleveland I did end up with a small hernia last year from the gallbladder surgery that he fixed a few months ago. It was from the gallbladder incision and it was just a fat sac with no intestine in the hernia, which was good and made the surgery easier. [ more ]
CindyO Can you tell me who your surgeon was for gallbladder? [ more ]
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J-Pouch ForumsGeneral Discussion
Anyone else having trouble buying Ilex?
Former Member ❤️
ken31cay I posted at the end of the following thread about an iLex alternative that works virtually the same for me as iLex does: https://www.j-pouch.org/topic/...ative-search-results It is a mix of Convatec Stomahesive and CeraVe Ointment. [ more ]
grateful Thank you Ken and Pouchomarx. Same here!!! It’s like gold to me too. I get by, but there just isn’t anything like Ilex. Wishing you both the best and lots of Ilex to buy. [ more ]
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J-Pouch ForumsGeneral Discussion
Loop iliostomy
Nancydiane Thanks. Changing every day seems to be helping. I do apply heating pad for a few minutes . Thanks [ more ]
Kangaroo Like New577, I found heat helpful. I put a heating pad on the area for about 15 minutes after I changed my bag. [ more ]
Trojan I know how utterly miserable it is dealing with these appliance issues. At one point I nearly smashed my bathroom up in frustration, and I'm never normally that kind of person. Somehow, taking it day by day, I eventually got through it. Best wishes. [ more ]
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J-Pouch ForumsGeneral Discussion
Anal stenosis issues after pouch redo
seanbo1001 Thank you very much for your input Trojan. That helps greatly. [ more ]
Trojan The anastomosis is where the bottom of the pouch is connected to the rectal cuff, roughly an inch or so inside the anus, at least in my case, and that's what constricts. I self-dilated this for about 10 years, mostly once every couple of weeks or so, to stop it shrinking. I'm told the reason they shrink is that scar tissue from the previous surgery has a tendency to want to shrink. Like you, I've also recently had a pouch revision after my pouch was diverted with an ileostomy for 2 years,... [ more ]
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J-Pouch ForumsGeneral Discussion
Pain behind old stoma site- nerve entrapment
DanniO ❤️
Trojan Just a thought, but I think it's possible for a bowel to get a twist or kink in it, at the site of an adhesion. I suppose the section of bowel that was previously a stoma might be a bit more susceptible to this, and that this could happen at any time after surgery due to the bowel moving about. This is a fairly uneducated guess, though. [ more ]
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J-Pouch ForumsGeneral Discussion
Bleed after run smells bad
Sara Marie Everyone else seemed to get it. I might just be thick! I'm having a little bleeding/hemorrhoid activity after a lot of biking last week. Ouch! I even have a special bike seat that doesn't put pressure on the perianal area, but I think it wasn't the pressure, I think it was the hours in my soggy, sweaty drawers. It was a long fundraising ride out in the country and we had to drive to get there and back, thus the hours of sweaty drawers. It was beautiful, though. Hope this heals quick! It... [ more ]
Jacqueline Sarah yes I'm talking about excercise. Sorry might be an Aussie expression [ more ]
Jacqueline Thanks for your replies [ more ]
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J-Pouch ForumsMen's Health
Diet
Jaypea I started a modified keto diet a few years ago. Not to lose weight but to feel better. Initially I cut out all sugar and carbs. Went full out keto. I lost too much weight but didn't miss the sugar or carbs. I learned a whole new way of eating. My joints didn't ache, I was sleeping better, my thinking was more clear. I now eat mainly extremely low carb and very low sugar for the most part however I am not against the occasional cookie or bowl of ice cream. It works for me and I have kept the... [ more ]
Sara Marie Intermittent fasting helps me feel better and it keeps my clothes from getting too tight. So I eat before 5pm and then don't have anything again until late morning. This provides the body with some rest. My colleague likes fasting for days, but I have never tried it. She swears it makes her feel great! [ more ]
See all 2 replies...

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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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