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J-Pouch ForumsGeneral Discussion
J-pouch redo help
Kushami ❤️
Omyst Yes I think it is residual swelling and I will not push and will stay hydrated. Thanks for the response [ more ]
Scott F Can you tell if your pouch is actually full when you try to go to the bathroom? You could have some swelling around the takedown area, leading to a partial blockage. The bloating can make it feel like the pouch needs to be emptied, but there’s not much there. It will be best if you can avoid straining to try to poop. Hopefully this will clear itself up soon. In the meantime it’s critical that you stay hydrated. [ more ]
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J-Pouch ForumsGeneral Discussion
Magnesium Issues- Help Please
grateful I take Pure magnesium glycinate (120 mg) also at night after dinner with no bad effects. [ more ]
roseviolet Peggy Schirmer, a German with extensive education in healthy living, has lots of videos on various topics, including a couple video explanations of what to look for/what to avoid in magnesium supplements. They aren't hype and she isn't selling. They can be viewed on YouTube/GutFeelings/PeggySchirmer. I've started watching them when I have time. Her explanations are clear and make sense. She says that magnesium glycinate is gentle on the gut and is good for the entire body. Mag. threonate,... [ more ]
StarryNight ❤️
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J-Pouch ForumsGeneral Discussion
Time Released Medication
Former Member I honestly would not recommend Timed release or extended release medications. That is my personal opinion. I would explain my situation to the doctor very thoroughly but some medications only have that option unfortunately. [ more ]
lclassen ❤️
Scott F If your transit time is quick then these will only work if you can slow it down. Gentle use of bowel slowers, like Imodium or Lomotil, might help. I get fine results with pantoprazole, which is extended release, but plenty of folks here report poor results. [ more ]
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J-Pouch ForumsGeneral Discussion
Chronic Low Sodium Being Driven Lower By Blood Pressure Meds
CTBarrister Just an update: my cardiologist, alarmed that my sodium level has gone below 130, has ordered me to stop taking losartan and has doubled my dosage of carvedilol from 12.5 mg to 25 mg. I guess he felt the losartan at 50 mg was a bigger culprit in suppressing the sodium then carvedilol, the beta blocker. I was also ordered to keep taking my blood pressures and get another blood test end of June. Hoping to get sodium level up and over 135 by end of June. In the interim, I am keeping my sodium... [ more ]
Pouchomarx Just keep eye on ingredients as i was using Ultima replenishments and was going to bathroom alot more and discovered the first ingredient was Magnesium Citrate which is a laxative.. [ more ]
SteveG That's good to hear. My labs are done every 6 to 8 weeks because of the ongoing biologics treatment. [ more ]
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J-Pouch ForumsGeneral Discussion
Kiwi fruit
Sara Marie I got a cereal called "Mesa Sunrise" by "Nature's Path" that, when I ate it in the evening, made it so I slept through the night without having to get up and poop. I have tried to have psyllium before bed and it hasn't worked like that so far. I'm going to keep experimenting. The 3 nights in a row I had the cereal and slept through the night, I was really tired so it could have just been that. Further testing is needed. Also, the Mesa Sunrise made for good poops the next morning. [ more ]
Chook2 Kiwi fruit with diced apple and banana in a blender with weetbix is like a enema.big bm but feel great after. [ more ]
Sara Marie ❤️
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J-Pouch ForumsGeneral Discussion
Sensitivity to common OTC medicines?
roseviolet No, never consume any sugar-free food. Soda of any kind is particularly bad for bone health. [ more ]
Former Member Do you ever drink sugar free soda??? If so, does it bother you??? [ more ]
roseviolet The artificial sugars in OTC products give me the trots. I first noticed this when taking cough syrup. I had a vague memory of reading that ingesting sugar substitutes isn't wise and another article recently appeared about this. Anyway, stopped taking the cough syrup and bought another that had some form of real sugar and trots disappeared. [ more ]
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J-Pouch ForumsGeneral Discussion
Top surgeons in Toronto, ON - Anyone have any ideas?
Hamm Hey, were you happy with Dr Kennedy? [ more ]
lysanne21 Thanks everyone for your input. I'm excited to meet with Dr. Kennedy next week! The time has come to get answers and mentally get ready for what she will say. I will make up a list of questions for her and we'll see what my future looks like... [ more ]
heyitsles My surgery was done by Dr. Marcus Burnstein at St. Michael's in Toronto. He and his team are wonderful and very dedicated. [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Incontinence
Mikah the Bike Lover ❤️
Former Member I would say its normal, I had the same issue as well. I did take anti diarrhea pills but after a while they started to clog me up unfortunately. So I wore diapers at night for a long time. I would say it takes a full year to get use to everything, that has been my experience. [ more ]
athena Accidents, or leakage? I ask because pre-pouch, anything coming out unexpectedly would be called an accident. Post-pouch, leakage is normal. What’s the difference? Liquid only, vs solids. If you have leakage of liquid at night, that’s totally normal after j-pouch and really common, unfortunately. Some people sleep on bed liners—I bought the washable hospital kind—and some wear incontinence pads (just shift more posteriorly than intended), and some stuff a bit of toilet paper or gauze between... [ more ]
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J-Pouch ForumsGeneral Discussion
Hemorrhoid surgery with J-Pouch
Ellybelly Sara Marie, sounds like I have the same thing as you. It's external, flesh color, gets itchy too. Comes for a few days and disappears. Returns when pouch is really active and can also ache then. I am waiting to see G.I. for inspection. It has me worried as well. [ more ]
Sara Marie So y’all, I was looking at the thing that was worrying me squatting above a mirror and then comparing to internet pics and I think the large thing is a skin tag not a hemorrhoid. I think those are all internal but this external thing isn’t that. It seems to start right at the line between inside and not inside the anus. It may have a fissure at its source. I will get the doc to look, but I have read that skin tags can be more easily removed. It seems to grow and shrink, too, like a... [ more ]
RHolt ❤️
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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 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 ]
See all 7 replies...
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 ❤️
See all 32 replies...
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 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 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 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 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 ]
See all 40 replies...
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 ForumsGeneral Discussion
Reversal Feb. 20
Wenwen Hey Ryan, apologies my reply is delayed as I haven’t been on here for a little bit. Sounds like you received some pretty good responses! I don’t have too much to add as far as the food goes, except that It will be a little trial and error to see how things work through your pouch. I find I can have pepperoni as long as it’s not too spicy.. I can’t do spicy foods at all.. and always make sure you chew everything very well! What caught my attention from your post was the comment about UC... [ more ]
CJCowdell Sorry for the long post. I cover eating times, immodium/lomotil & psyllium use, small bowel transit time, & iron deficiency. @Deb C Thank you for that info (5hr pre- sleep). I will try this, but it's so difficult w/family dinner at 7-8pm. Some things my surgeon told me; (1) "eat your last meal at 6pm", & (2) do not use immodium/lomotil. I'm ~3½ months post take-down (05Dec23) & struggle with waking 5-6x at night, regardless if I use any medication or not. Sometimes it's only... [ more ]
Deb C After many years of interupted sleep I started hearing about time restricted feeding/intermittent fasting. I can spend 8 hours in bed now as long as I don't eat for at least 5 hours before bedtime. Sometimes I make exceptions for special occasions knowing I'll have to accept the consequences. [ more ]
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J-Pouch ForumsGeneral Discussion
New Topic
CTBarrister You should change the thread title to "J Pouch Recipes or Foods." When I saw "New Topic", I thought this thread was going to be about the search function and posting about new topics as opposed to topics on which threads have been started. That being said, I think "J pouch recipes and foods" is a bit misleading as it carries the mistaken assumption that what is good for one person's J Pouch therefore must be good for all. Everyone has a different functionality and many posts here about diets... [ more ]
Sara Marie I like this idea! When you say they're great for bowel movements, do you mean they give you good BMs? What is your baseline for not so good BMs? Just checking, because people have so many types of issues on here. Some can't finish, some get constipated, many have too many BMs. Maybe we could have categories like recipes to firm up the stool/slow down digestion, recipes to help evacuate completely, etc. A sub category could include allergen-free recipes, avoiding common irritants such as... [ more ]
Mrs P ❤️
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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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