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J-Pouch ForumsHelp! Need advice now!
Protein Diet
B BNellNY
BNellNY Glad it was helpful. Oh gosh, good pouch function early after takedown? You mean after the colectomy? That's a while ago, all I do remember is I had VERY frequent (loose) BMs from the get go. And that lasted a while. Then for several years I had much more normal output, in terms of frequency (stool itself continued loose.) I did have some relief after the initial banding, but as I wrote, I'm afraid it didn't last very long. The reason my GI at Weill Cornell sent me to Dr. Shen was because I... [ more ]
Pouch2021 BNellNY, Yes, very helpful. Thanks for sharing. Can I ask did you ever have good pouch function (eg early after takedown)? Did you have near immediate relief with banding? Finally, what were/are your symptoms of FPC and what is your stool consistency like? I need to keep mine watery to empty. Thank you for entertaining all my questions! I haven’t found anyone else with experience with FPC and banding. [ more ]
Mrs P ❤️
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J-Pouch ForumsGeneral Discussion
Pouch Excision Surgery
FF F'ing Fistula
roseviolet FF, glad to be of help. If you have other concerns or questions, ask away. I was fry happy to have it over and done. Thinking about it was worse than actually having the surgery. --Rose [ more ]
F'ing Fistula Hey Roseviolet, That's really useful, thank you .. just looked at the post you mentioned, d'oh, sorry I rehashed an old question! I thought I'd looked through most of them but I somehow missed that one, which is identical to what I was asking, I didn't mean to be that lazy! Thanks for pointing me in the right direction, I was very close to just buying a doughnut cushion 🤣 shows what I know! I'm glad your op went well and you had a good recovery tho 👌👌 FF 😊 [ more ]
roseviolet Click on General Discussion. Then do a search for "failed j-pouch, needs excision." When the entries for that come up, scroll down to Roseviolet, which is me. I went through quite a bit of info here. Do NOT get a donut cushion. It will pull apart your butt cheeks and break open your stitches. You need a waffle cushion. Your hospital should give you one to use and they will send you home with it. There are those who thought the butt closing was painful, but in my case it was nothing more than... [ more ]
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J-Pouch ForumsGeneral Discussion
.
FM Former Member
Jaydog I switched surgeons. I had an emergency surgery to remove my colon at a local hospital. I then went to Cleveland clinic for steps 2 and 3. Best decision I could've made. [ more ]
CTBarrister Most people do 2 step surgeries where their step 1 and 2 are your 2 and 3, so not sure any answers you get will be that helpful or will necessarily be applicable. My opinion is step 1 of 3 isn't the big step, its steps 2 and 3, which is like anyone doing steps 1 and 2 choosing their first surgeon. As for switching surgeons between steps 1 and 2, it's not a big deal because step 1 of 2 and 2 of 3 is the totally key step. But if you do switch you will have most likely another 3 months with an... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Second j-pouch
J Julesbirch
Kushami Hello Jules, I was wondering what happened with your surgery. I am in a somewhat similar position and have had so much trouble deciding what to do. My pouch failed after 15 years. Cheers, Sarah [ more ]
Scott F Jules, the stretching that the surgeon is referring to is likely whether the remaining intestine will reach the lower pelvis after the failed pouch is snipped off the end. As long as they don’t pull it too tight, impairing the blood supply, it would likely work fine. They would have to have your permission to explore that option during surgery. It’s uncomfortable to enter surgery without knowing exactly what will be done, but sometimes that’s the only way to get the best possible result. [ more ]
Julesbirch Thanks for the advice Scott. My current pouch is also very dilated so don’t think they can fix it. My surgeon said she can try to form another one but not sure if it will stretch enough so thinking I might go with the end ileostomy. Thanks for for the info Bill. I was never given these options so not sure if there are any surgeons here in south Australia that perform these procedures but will keep researching! [ more ]
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J-Pouch ForumsGeneral Discussion
How best to take psyllium to slow output?
Pammy SuePammy Sue
Kushami Hello Pammy Sue, Here’s my regime: Smooth Metamucil (must be smooth version; coarser powders didn’t work for me) 2 tsp mixed with as little water as possible (just enough to enable you to swallow it comfortably) Mix and gulp down quickly before it solidifies Take right before eating Take before main meals and any snacks with fibre Avoid drinking large amounts of liquid with meals [ more ]
TCM Same here: no colon since 08. But each body is different . [ more ]
FelixGust TCM I have no colon so that probably makes huge diffrrence. If I drink liquids al9nr they undoubtedly go straint through like drain cleaner [ more ]
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J-Pouch ForumsGeneral Discussion
Gastroenterologist in Sarasoto Or Manatee County, FL
BarbieGBarbieG
JoniC I just moved to the Sarasota area and my GI in Pittsburgh recommended Brent Murchie at Florida Digestive Health Specialists. I wanted a female doctor so I see Jasmine Dukandar in the same practice and so far I am happy with her. [ more ]
Former Member Oh great! We are both around the same age and we had our surgeries around the same time! That is soo cool!!! And we both had a two step!!! COOL! Your welcome! And Yeah that doctor is great! You will love him! Definitely message me sometime and we can hang out, I am 28 years old, very near your daughter's age, we can compare notes lol. [ more ]
mary beth My 24 yr old daughter is moving to Sarasota in October and I popped on here to find a GI knowledgeable about J-pouch and found this! She had her 2 surgeries in 2014 as well. She’s doing well but good to know there’s a Dr not too far away. Thanks for the information! [ more ]
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J-Pouch ForumsGeneral Discussion
Intolerancies
G GerdMüller
SteveG @GerdMüller I agree to Scott F that your apparently food related problems are not necessarily intolerancies. Perhaps it is a kind of irritable pouch / bowel syndrome which is just showing up clearer if you eat certain foods. As you said pouchoscopy showed no signs of inflammation, so it is not a pouchitis (by the way, why did they three pouchoscopys this year if everything looked all right?). But you could rule out that there is still some invisible inflammation by taking budesonide... [ more ]
Drbev603 Thank you all I think I need to be followed by a GI THAT does this type of surgery! My surgery was done at a previous facility . I'm trying to get my medical records. I'm not sure i have a J-pouch. When I saw it during a lower Gi xray, it looks just like a bladder Thanks for all of your help! [ more ]
Drbev603 ❤️
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J-Pouch ForumsGeneral Discussion
Simponi and Continued Ailments
C capper
capper After my first 200mg dose of Simponi last week (maybe more), I haven't noticed anything but perhaps more difficulties. Do any / many of you get the non-stop noisy / gurgly stomach sounds often? It seems this is a regular thing with me. I'll be laying down in bed and my stomach won't stop with the noise. [ more ]
capper My doctor and the nurse with the biologic company recommended I take an extra dose of the Simponi to make sure I got enough. I did! [ more ]
Scott F I don’t know why the injection malfunctioned, but I wouldn’t worry too much about it, especially since it was your first dose. If an appreciable amount of medication was wasted then the Simponi will just take a bit longer to work for you, and if it turns out to have been a small fraction then the effect will be insignificant. When I first tried Remicade many years ago I asked the nurse to flush the line with the last of the Remicade into me, since I figured the tubing contained several... [ more ]
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J-Pouch ForumsGeneral Discussion
Potential Cancer risk in the Cuff area of the J-Pouch?
BS Ben S.
clwakley I had the j pouch after many years of ulcrative colitis due to colon cancer. I was scoped every year and 5 years later the cancer returned in my rectal cuff. I now have a perminent ileostomy. [ more ]
Pouch2021 I agree with Jan. There is a lot of variability, both between patients and institutions on cancer surveillance. Someone who had dysplasia at colectomy and still has a cuff will likely need frequent scopes/biopsies. I developed a severe UC flare in my rectal stump between stage 1 and 2 so my CRS dissected out all rectal mucosa and stapled my pouch as low as possible to the anal sphincter. Across several scopes they have confirmed no mucosa left. I didn’t have dysplasia before and have no... [ more ]
Drbev603 ❤️
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J-Pouch ForumsHelp! Need advice now!
Pouch-Vaginal Fistula
G Gremlin
Caty Hello, People deal with medical issues on their own terms. I've been in your shoes; it's a difficult decision to give up a j-pouch and go to a permanent ileostomy. In 2007 after 16 years with the j-pouch and complications from a vaginal/j-pouch fistula, I had my j-pouch removed, my anus closed up, and now have a permanent end ileostomy. My ileostomy is on the left side of my abdomen just BELOW my waistband. The ET nurse and I found the perfect spot together. If a person is working with an... [ more ]
F'ing Fistula Hey Gremlin, I know this post is a couple of years old, I was just wondering if you're still around and how you're doing now? My situation and feelings about it are very similar to yours, I've been struggling with my fistula for about 2yrs now and it's still getting worse. The psychological side effects of a complication like this are almost as bad as the physical ones and like you, I've had real trouble trying to talk to anyone about it in detail. Anytime I have actually tried no one seems... [ more ]
Gen Hello! I don't have any suggestions, just commiseration. I had a minor fistula that I lived with for about 10 years (my surgeon did not recommend intervention), until it spontaneously healed (no idea why)...for about 2 years. Unfortunately, when it recurred about 6 months ago, it was much worse and is causing me considerable grief. (Also chronic yeast infections--anyone else dealing with this?) I am also sort of avoiding dealing with this medically as I'm afraid the doctor will finally... [ more ]
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J-Pouch ForumsGeneral Discussion
One month post takedown.
NickMNickM
Kushami ❤️
Former Member @CTBarrister I buy SmartBran from Wholefoods on Amazon. It is free delivery after 35 dollars. To my surprise, I found a few items there that are cheaper than my local grocery store, and combine my order to get free delivery. I tried All-bran cereal too. It was not easy to digest, so it does a great job of slowing down digestion, but I cannot eat for hours after eating that. Smart bran has wheat bran, oat fiber, psyllium seed husk, oat bran and whole oat flour, so I find it easier to eat and... [ more ]
NickM Hey CTBarrister, thanks for the advice, I’ll look into getting that, just been having the regular oatmeal at the moment. tried the psyllium husk the last few days, really made a difference with consistency and helped to thicken things up. Got the best night sleep since takedown too. had one to two drops of blood, last few days, noting substantial. Surgeon doesn’t seem too alarmed as it’s only 4-5 weeks since take down but he’s arranging a pouchoscopy just to be sure. great advice on here,... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Grapes??
Mema 1Mema 1
Former Member ❤️
Mema 1 Thanks PouchLogic, I remembered that I used to use grape juice a long time ago so that's what I did and thankfully it opened up. [ more ]
PouchLogic Flush it out. If you are still passing stool then try to continue drinking and hopefully flush whatever is bothering you out. Go slow and try not to make it worse if it is a blockage but fluids are a safer bet. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Blockages
H happytimes
skn69 PSJ, I had surgery last week. They had to go in for other reasons as well (phantom gallbladder pains that turned out to be stones, inflamation and infection in the common bile duct) and a cyst by the liver. While my surgeon was in there he inspected my historic occlusion site (an old colostomy site) that tends to build adhesions and block me. There were some so he zapped them and he found a new site, just below my liver that had adhesed a loop of bowel to my liver...everything was done... [ more ]
CTBarrister PSJ: I am kind of in the same situation with my J Pouch inlet stricture. I have the big black blockage cloud hanging over my head, and am relying on Remicade and Entocort to keep the inflammation down at the stricture site so that food can pass. The truth is that I have been strictured in that area for a while, and no blockages so far. I did have around 4 blockages right after surgery due to adhesions and/or surgical swelling including the dreaded NG tubes and the usual "fun and games". My... [ more ]
PSJ Good to know Scott but it seems I was "lucky" in that the blockage was due to inflamation that steriods and Flagyl seem to have fixed so far. Everything looked much better yesterday on my scope. I hope it stays but I will be much more aware of what I eat from now on. [ more ]
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J-Pouch ForumsGeneral Discussion
Jpouch overtime
C Chook2
CTBarrister Butt burn after takedown is actually due to excessive alkalinity in the stool as opposed to excessive acidity. The colon regulates the pH of the stool and that function is slowly (SLOWLY) assumed by the J Pouch. In some cases it fully adjusts, as I said in my case may have been 3 years. In some cases it never adjusts completely and probably in some cases very little or not at all. It's one of those things that could take a lot of time, and instant results reasonably shouldn't be expected. [ more ]
Ryan138 I’m almost at 14 months and still use calmoseptine on the daily…..I guess some of us just have more acidic output than others… Or maybe we just have extra sensitive skin down there… all I know is calmoseptine is NOT recommended as a mayonnaise substitute [ more ]
Former Member ❤️
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J-Pouch ForumsHelp! Need advice now!
Keep the j pouch?
SL Susan L
Susan L Andreita, My surgery went fine. The surgeon saw something odd that wasn't there one month prior for the pouchoscopy. There were 4 tribeculations on the pouch. They weren't there before. She showed me pictures of them. Hopefully time will heal them and strengthen my pouch. Have you ever heard of anything like this? How did your surgery go? Susan [ more ]
Taichitwin Hi Andreita, I wondered if I could send you a private message? I'm sending you healing thoughts and energy! 🙏🙏 [ more ]
Andreita @Susan L how are you? How did your surgery go? Who is your surgeon? Here's a little bit of my story. I don't know if it's relevant but I had a J-Pouch redone last week with Dr Remzi. I'm waiting for take down and I hope it will be well. My J-Pouch wasn't punctured though, in fact he was able to keep it. In my case, the rectal cuff was too long and my J-Pouch somehow twisted. [ more ]
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J-Pouch ForumsGeneral Discussion
Homemade electrolyte drink.
C Chook2
SteveG Baking soda (sodium bicarbonate, chem. NaHCO3) can help against heartburn, it neutralises gastric acid. It also helps to improve the body's acid-base balance and it is said to have anti-inflammatory effects. After reading this first post I've found an old package at home and I add half a tea spoon to my drinks about twice a day to see if it helps me, but it is difficult to say. You should have it at least one hour before or after meals, because as said above it neutralises gastric acid which... [ more ]
Chook2 There is a drink called st mark's solution.Ive stopped drinking this because one of the bottles I made up nearly exploded and I still drank it but it was revolting but gave me a huge clear out like an enema,I think the lemon was off..Ive found a 99% sugar free premix which seems better.I think the baking soda thickens things but I don't know. [ more ]
maddie18 Hi How does baking soda help? [ more ]
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J-Pouch ForumsHelp! Need advice now!
What does c. diff feel like with JPouch?
S Sunflower70
Sunflower70 So, just to close the story on this, in case anyone reads this in future and has a similar issue -- It's not c diff. The pain was from a lot of gas plus probably some inflammation.I'll know more after I see the doctor but the tests today confirmed it's not c diff and that the pain I'm having isn't dangerous. That's a relief! [ more ]
Sunflower70 Thanks for the quick replies. Very grateful to have a little company right now. Jan -- I can't take Cipro because of a drug interaction and I have had a bad reaction to Flagyl (heart palpitations) in the past. So I wound up with Augmentin which I haven't taken before ever. Part of what I'm feeling now feels like painful gas, which is odd since I very rarely have that, and certainly not for hours. Have had my pouch for 5 years and pouchitis twice -- each time it cleared up quickly. Once,... [ more ]
Jan Dollar Sure it could be C. diff, and Augmentin would make it worse. But it does not sound like it is worse. Why did your doc not prescribe the typical antibiotics: Cipro or Flagyl? Since you were going with the assumption of pouchitis, those would be the go-to antibiotics. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Have you had surgery for stricture?
S 1993SPouch
Glenys D Hi Jen, Yes, the stricture was very small and I was passing undigested food. I definitely think trying the FODMAP diet is worth it. But it would be helpful to discuss it with a dietitian. I hope it works for you. [ more ]
1993SPouch Thank you for your response! Can I ask you if the stricture was ever this small and is it a balloon dilation or something else? I'm also passing lots of undigested food so perhaps low fodmap should be a consideration. [ more ]
Glenys D Hi Jen, I had my pouch in 1992 and have had recurrent strictures at the anastomosis. The surgeon does a dilation of the stricture every 12 months and that seems to work. At one stage he was considering major surgery but then I started the FODMAP diet and the symptoms improved so much, no further surgery was needed. So it might be worth getting a 2nd opinion? Hope it all works out okay. Glenys [ more ]
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J-Pouch ForumsHelp! Need advice now!
j-pouch/spasms
P Phil1010
Phil1010 Thanks, Jen. You know, I have always wanted to enjoy pot, as most everyone else seemingly does. Yet every time I've tried it, I just sit there, waiting for its effect to wear off. It just doesn't agree with me. But yours was a good idea. [ more ]
1993SPouch I have those and it turns out I have a stricture at the outlet of the pouch so I imagine it is spasming due to trying to get stuff out that is very small. While you are waiting for a solution I recommend something I never thought I would ever take and that is vaping marijuana. High THC. It stops the spasms for me while I wait for my surgical consult for the stricture (thanks for the delay covid). It's the only thing that works to stop them within minutes. Of course, I'm high as a kite and... [ more ]
Phil1010 Thanks. I'll ask about that. [ more ]
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J-Pouch ForumsGeneral Discussion
Fatigue: Jpouch or something else?
ValenValen
Jaypea At this stage in the pandemic my first question is "are you vaccinated?" Having cold symptoms and fatigue would point me in the direction of getting a Covid test. If you are fully vaccinated those symptoms could be a case of the dreaded "rona". [ more ]
maddie18 Hello All, When we say we have jpouches and our systems are normal just like someone who is intact are we speaking that we still have our entire small or large colons intact? Can we relay what part of the intestines are missing. My entire large colon was removed at the age of 21. I had just turned 21. I have not had a solid sleep in 35 years due to multiple nightly trips to the washroom. My bowel movements are always liquidy. I would relate my fatigue to these reasons. Let's try not to put... [ more ]
Jan Dollar I agree. There really is no “normal j-pouch fatigue.” People with j-pouches get fatigued, just like anyone can be afflicted with fatigue. The causes are myriad. Yes, having a j-pouch may make you more susceptible to some causes, like dehydration, poor sleep, and pouchitis. Often, the fatigue resolves before you figure out what the cause was. Life stressors and anxiety can come and go, leaving their effects on our bodies. Generally, if I am fatigued, I just take heed, slow down and get some... [ more ]
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J-Pouch ForumsGeneral Discussion
Help to find a way forward
FM Former Member
skn69 I don't know your story or your history but I feel your desperation...you are sick and tired of being sick and tired...you are fed up with the pain and exhaution. I've been there, I've lived in...often...frequently and more so than many. But I can honestly say that it gets better. I can say that there are times when it is worse but the absolute worse thing that you can do is to give up hope and stop fighting. There will be a time when you will look back on this and wonder how you managed to... [ more ]
NMGuy I had chronic fatigue for 4 months after one step. I agree with others; pain after loop Ileostomy does not seem normal, see your doctor. All those drugs also have side effects, but not sure about the pain you described. Others in this forum may have better advice... [ more ]
Jan Dollar While I cannot say it is normal to feel terrible post j-pouch, it is fairly typical to struggle for months with chronic fatigue. Some of us cope better than others. Clinical depression and PTSD are pretty common. Be sure to tell your doctors how you are feeling so you can get a proper diagnosis and treatment. Being young can make it more difficult too, as you are at an age when you should be looking forward to a bright future, not worrying about the next health crisis that may hit you. Lean... [ more ]
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J-Pouch ForumsGeneral Discussion
Seafood
B BK 123
CTBarrister Jumbo stuffed shrimp from Bin 100 in Milford CT. Pouch-friendly and very good. Served over a Spinach, Potato and Cauliflower Mash with grape tomatoes. [ more ]
CTBarrister Oysters Rockefeller from Bin 100 in Milford, Connecticut. An American classic since being created in New Orleans in 1889 and still classic 132 years later. This is a J Pouch friendly food which may require a few extra chews due to the spinach content. [ more ]
Drbev603 ❤️
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J-Pouch ForumsGeneral Discussion
Great News !! After Colectomy and J-pouch
R Reneawes
Drbev603 Thanks CT! [ more ]
CTBarrister One of the things I have noticed on this website, and also on the thyroid cancer website when I posted there while treating, was a tendency by many posters to make anecdotal or circumstantial conclusions as to cause and effect relationships between some event or circumstance and a health outcome. I think it's a natural human tendency to indulge these kinds of things to blame a diagnosis on some event or causal factor without really knowing if it's true or not. Just for example, after I was... [ more ]
Drbev603 ❤️
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J-Pouch ForumsK-Pouch Korner
Are BCIR's actually "better" than K-Pouch's?
DLightDLight
JanW2 Hi David, Sorry it took me awhile to look at this, you wanted follow up on how long it could take to empty the K pouch. In my case minimum of 15 minutes, normally 20/25, and up to 40 . And this would be about 10 to 12 times a day. I got almost no sleep at all. I needed to use an enema bottle to thin things out to pass food. I was restricted to very low fiber foods.When my K was removed 3 blockages were taken out and many adhesions, so I’m sure this had quite a lot to do with the issue. A... [ more ]
jan15 posted info in another chat room. let's get back to David's questions on this thread. ok? This excellent symposium--“The First Annual Dr. Victor Fazio Symposium in Diagnosis and Management of Ileal Pouch Disorders”--was held 17 and 18 Sept 2021. Links to the two half day discussions are listed below, as is the agenda. The symposium is intended for medical practitioners and for patients, so please do not think it will be only medical terms beyond your grasp. I did not zoom into all of the... [ more ]
skn69 Hi David, I am one of the oldies on here, 42yrs with my K pouch and quite a few revisions to be able to keep it (essentially due to my underlying disease, Ehler's Danlos syndrome which keeps my body from healing correctly so things come 'unglued' or fall apart easily). I LOVE my K pouch. It is not just a lifesaver but a life changer. I couldn't, at 18 deal with the idea of an outside bag. I couldn't deal with another ostomy...I had had a colostomy at age 2...not a great success and I got... [ more ]
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J-Pouch ForumsGeneral Discussion
Total Colectomy after RNY Gastric Bypass
W wbtn1963
Drbev603 No, I had my pouch in 1991 and a Gastric Sleeve in 2014. The blockage was at the collar where small intestine is connected to my rectum....+ lettuce, raw carrots and scar tissue. [ more ]
FrankB So you had colectomy, Bypass and J-pouch correct? Is the J-pouch the reason of your blockage? [ more ]
Drbev603 Correct. But I have always been eating salads and raw vegs and I was never told no to! It is a no-no! My floor nurse had a J-pouch and also was hospitalized after a salad after 7 years. The Immodium will also control your looseness. Even a half may be enough. I wear a long liner pad just in case. It's manageable . Still way better then before the surgery🥰🤞🙏 [ more ]
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J-Pouch ForumsGeneral Discussion
Do you eat eggs?
C Chook2
Lesandiego I'll eat them to help clear out the plumbing when I find myself straining. [ more ]
Chook2 Avocado on toast is good with some salt. [ more ]
Mrs P I do like a toast w/peanut butter or a bagel w/cream cheese. They just don’t keep me full enough. Well, maybe the bagel. I do try to watch my weight so I steer away from a lot of “bread”. I have never liked the consistency of oatmeal. I wish I did. I do like bananas, but not every morning. Still looking for other ideas… Thanks! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Anal fissure
S Shellybean
Klwombat Has anyone else tried the ilex cream as described? Did it help?? [ more ]
hanras I have reoccurring anal fissures, now with an external/internal fistula next to the rectum. It is soo bad! I get no relief, and dont you dare mention proctofoam!! That stuff is the worst! I use hemp oil or CBD oil on the outside, and just barely inside. My dr will do scope and insert botox and cortisone every 3 months to help with the pain, inflammation, and bleeding. I notice when i flare it is very painful clear up to my lower back and gas is incredibly painful to pass. [ more ]
Former Member From time to time I experience an anal fissure , which always appears to be at the same spot within the wall of the anal sphincter. What you're about to read may sound uncomfortable but to alleviate the discomfort and excruciating pain; I can assure you, it isn't. I've had great success by applying ilex protectant paste to the inside of the anal sphincter. When a fissure is suspected, after cleansing and after a BM; I wrap a wet wipe around the tip of my finger and insert it into the anus; I... [ more ]
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J-Pouch ForumsK-Pouch Korner
K-Pouch Reversal
B BillCo
BillCo Hi Marsha! Nice to hear from you! I have heard that Dr. Shen is part of Dr. Kiran's group now, although I have not met him yet. Dr. Kiran did my corrective surgery a little more than a month ago. Until last week I apparently had an infection and was in terrible pain, making me doubt whether I made the right decision. (I was thinking about having a reversal.) I just finished a round of antibiotics and things are MUCH better! Pain is all but gone and my stoma and pouch is behaving better than... [ more ]
marz Hi Bill I just read your post and was wondering how you are doing? I was just in NY for my annual k-pouch scope with Dr. Shen. I know Dr. Kiran is the one to see if there are problems, so I hope he was able to help you. Dr. Shen actually left Cleveland Clinic for NY because Dr. Kiran was in NY. They are a great team. Marsha [ more ]
BillCo Hi Shimm! Sorry I didn't get back to you sooner. My surgeon wanted to arrange a visit with a hernia surgeon, but I wanted someone more specialized. So, I have surgery scheduled with Dr. Kiran in NYC for late August. We'll see if that is the answer to the problem! Thanks for your thoughts! Bill [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
pelvic organ prolapse
P Pouch2021
skn69 Not directly but indirectly related...I have had my K pouch collapse numerous times and as my surgeon said 30+ys ago, it pulled everything down with it (it actually just sat on my bladder and made my life miserable)...they did open surgery at the time and put my pouch back up on the wall and put my 'organs on a shelf'...the expression that he used, not me...I have just had my pouch picked up again through laparoscopic surgery 3 days ago (along with a couple of other organs swept and dusted). [ more ]
Drbev603 OMG! You poor thing!! How horrible? Have you gotten a second and maybe a 3rd opinion? Is you provider a big med center with alot of experience?? You might want to find one and definitely a new surgeon!! You are in my prayers. [ more ]
Drbev603 ❤️
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J-Pouch ForumsHelp! Need advice now!
Painful skin tags?
LH Liz H.2013
twinkie ❤️
skn69 Skin tags, if that is what they are, can be easily and quickly burnt off by a competent dermatologist. I get a lot of them around my neck and have been having them removed regularly over the years. That said, if they are granulation, little white bumps or occasionally red ones that grow only on the red tissue, (something that I get a lot of on my stoma because I have a k pouch with an abdominal stoma that I intubate through) due to the constant rubbing of the catheter. I burn them off... [ more ]
Mrs P ❤️
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J-Pouch ForumsK-Pouch Korner
BCIR- K-pouch- T-Pouch
J JRK
dgs Yes, there is an excellent K-pouch surgeon in San Diego! I've had several revisions in the last 43 years and all done with Dr. Jonathan Worsey at Scripps Clinic , La Jollla. My first revision was with Dr. Launer, now deceased, and his partner Dr. Worsey, who also worked at the Cleveland Clinic with K-pouches, etc. Wishing you well! [ more ]
JRK Thanks. Joel [ more ]
DSL Alabama Hi Joe, I do not, however, I found great doctor recommendations from local chapters of the ulcerative colitis and Crohn’s foundation support groups. They should be on Facebook and / or you can contact the foundation. Good luck! [ more ]
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J-Pouch ForumsHelp! Need advice now!
New member, Old poucher, new problems....
Doug KenipeDoug Kenipe
1993SPouch https://www.j-pouch.org/topic/...6#672785578330031216 Hi. Yes, I hadn't had one for a decade. But just yesterday had one and it looks like I have a very tight stricture on the outlet of the pouch. Less than 5mm. So I have a surgical consult. I'm 50 so I'm leaning toward taking out the j-pouch. I'll find out more in the next two months! FYI - the reason I didn't have a scope is that I was never having any issues with my pouch until now. G.I.'s told me if it ain't broke, no need to scope it. [ more ]
Sara14 ❤️
Scott F If you don’t have a regular ophthalmologist you *might* get reasonable attention at an ER (yes, I know how awful that sounds) - especially if you can go to a teaching hospital. They’ll generally have an ophthalmologist on call, but it could be a long, expensive process. Alternately you might get results by pressing for an urgent referral by the doctor who is telling you to stay on prednisone. I hope the whole thing turns out to be no big deal, but hope isn’t a strategy. [ more ]
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J-Pouch ForumsPouchitis
Stricture Dilation
K katenet
Drbev603 ❤️
Mrs P Well that is good news!! Me and Prednisone had a long ugly relationship many years ago. I don’t want to go there again. I am going to ask my GI about Cipro. I haven’t tried that for a while. I can’t take Flagyl. Gives me terrible headaches. [ more ]
CTBarrister Entocort aka Budesonide should not be compared to Prednisone or other steroids. It's a "designer steroid" mostly absorbed in your gut. Only 10% of the dosage is systemically absorbed. "Moon face" comes from Prednisone which is fully systematically absorbed. It's unlikely you will have those kinds of side effects with Budesonide. [ more ]
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J-Pouch ForumsGeneral Discussion
Needing to lose weight
B Bubba1028
Chook2 Yeah I find soups are good for losing weight and eating vegetables. [ more ]
skn69 Hi Heather, Firstly, you have been through the mill! I guess that once our bodies decide to attack us, they really do not go lightly! As for the mesh, I do not know if it is the cause of all of my abdominal pain or not...I do know that I have a lot of abdominal pain (surgery tomorrow) and they will find out why shortly... I think that in my case it was a lifesaver. No sutures would hold my hernias together...they would just rip right through...so the mesh was a Godsend. As for the exercise... [ more ]
Chook2 I'm wanting to get fit again.bit worried of lifting heavy weights or doing an exercise.might buy a cross trainer.this is a great thread . [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Fibroid / Pelvic Cyst
SpookySpooky
3Cutedogs Hi! I had issues with ovarian cysts through the years... A couple were quite large and had to be removed through a c-section type incision. I have not had a peritoneal cyst. I had a complete hysterectomy 2 years ago and (knock on wood) have not had any issues w/ my pelvic floor or J-Pouch. Please keep us posted! I will be thinking of you and sending positive thoughts! [ more ]
Kh1988 Hi there! I am also dealing with a possible peritoneal inclusion cyst. It was found on a CT right after my first j-pouch surgery. That was in 2019. Had an MRI spring of 2021 and it was there. Just had an ultrasound and it’s still there. They don’t act concerned and I really don’t have any pain from it but it does concern me a bit. My ultrasound says there’s a small nodular component within the cyst. I guess that seems a little abnormal to me? Not sure what I’m going to do about it…. [ more ]
Suzanne Schodlbauer I also have a very large fibroid pendulated from the outside of my uterus that is compressing my urinary bladder. I have other large fibroids inside my uterus, enlarging it. The ovaries are unable to be visualized, due to the size of the uterus. Sometimes I feel pressure and an uncomfortable feeling in my suprapubic area and have frequent urination and incomplete emptying sensations. I would really like to have a hysterectomy and oorphorectomy. I have had my J-pouch for 19 years and it is... [ more ]
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J-Pouch ForumsGeneral Discussion
Canadian jpouchers question!
I igotanewlife
igotanewlife Thank you everyone for the great replies and information. I agree that emptying the pouch 6-10 times a day is tediulous as having the ostomy and esp if your out working, you have to be extremely conscious of what you are eating not to excite your bowels and have that constant balance of nourishment and not over eating. I am extremely fortunately that so far I have been able to work with minimal restrictions but it can be tough to pay for supplements out of pocket which is the reason I ask... [ more ]
CTBarrister This is the guy, he is Yale's top Advanced Endoscopist: https://www.yalemedicine.org/s...hiruvengadam_muniraj I am sorry to hear you have missed a lot of time from work. I have been fortunate in that regard. I am taking off the days on which I am getting dilated, but since I get 25 annual paid vacation days and probably will not use them all in 2021 (just too busy to take vacations), I should be slapped hard if I complained about that. I do realize I am more fortunate than many others with... [ more ]
Drbev603 ❤️
See all 11 replies...
J-Pouch ForumsPouchitis
Feeing great on antibiotic! Long term use?
S Scott21
SteveG I've been taking Cipro & Flagyl quite often during the last two years. It seems to be the only thing that really helps for chronic pouchitis. Many of the modern meds like Remicade failed. What worries me is that my liver blood levels are often increased, most significantly gamma GT and alkaline phosphatase. That may indicate an upcoming chronic liver's disease, a so called PSC. Has anyone experienced that in a similar way? Those blood levels are sometimes in the normal range, like this... [ more ]
kta I used Cipro for about 15 years until a new doc put me on a rotation of cipro, augmenting and xifaxan. I have never had tendon issues, but do remember one post years ago from a person who did. I hope things go well. [ more ]
CTBarrister I used cipro for 25 years without tendon damage.....it's a possible side effect not a probable one. [ more ]
See all 12 replies...
J-Pouch ForumsGeneral Discussion
Gelsectan
R RB15
SteveG I hadn't heard of it before reading this post, but it sounded good. I ordered a small package and tried it for 14 days, one capsule with breakfast and one with supper. I cannot tell it made a difference for me. Just started the next antibiotics course as things got a bit too runny. [ more ]
RB15 Aw thanks for the replies Jan and Scott! That’s great reassurance and i will give it a shot and see how i get on. That’s another insteresting study Scott, and i’ll report back if i find it somehow improves pouch function or at least makes me feel less bloated and in pain. Thanks again 👍🏻 [ more ]
Jan Dollar From what I can determine from reports Gelsectan is primarily for treatment of symptoms, particularly diarrhea, due to IBS. Studies are small, but promising. It seems safe for pretty much anyone, unless you have intolerance to any of the ingredients. In regard to using it for treatment of diarrhea due to having a j-pouch, there is nothing in it that would replace the function of a colon, which is primarily to absorb water. The small intestine will adapt, but this takes time and there is... [ more ]
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J-Pouch ForumsGeneral Discussion
How to get Calmoseptine/diaper rash cream out of underwear
FM Former Member
Drbev603 I would suggest habd washing stain with concentrated DAWN; The follow with washing suggestions. I wear thin pantie liners in case of accident anyway.🤯? [ more ]
Former Member Thanks Chook! I have an old school washing machine haha! And good idea! I usually just put extra soap in there but the conditioner you mentioned must be better! [ more ]
Chook2 Front loader washing machines are best.and adding fabric conditioner takes smells away. [ more ]
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J-Pouch ForumsGeneral Discussion
Lactose Free Ice Creams
CTBarristerCTBarrister
CTBarrister My father has been aggressively trying just about every lactose free and non dairy ice cream on the market and he decided on two that he really likes. The first is Ben and Jerry Creme Brulee Cookie Non-Dairy Ice Cream, made with Sunflower Milk: The second is Planet Oat's Blueberry Crumble which is made with Oat Milk: For those of you who were offended by my post about Rebel Ice Cream which is using a sugar substitute (albeit a natural one), both of the above products are using real sugar as... [ more ]
CTBarrister My father and I haven't had any issues with the Rebel Ice Cream. Ben and Jerry's Non Dairy Almond Milk Ice Cream uses good old fashioned sugar, so no such worries would exist. I like the taste of it, but the texture of Almond Milk Ice Cream is different. Lactose Free Cow's Milk ice cream is truer to the texture of other Cow's Milk ice creams. [ more ]
Scott F I stay the heck away from sugar alcohols, though they may work fine for you. “Erythritol side effects typically include digestive problems and diarrhea . It may also cause bloating, cramps, and gas. Additionally, erythritol and other sugar alcohols frequently result in more water in the intestines, causing diarrhea.” [ more ]
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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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