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J-Pouch ForumsGeneral Discussion
20 years trial error this is what I suggest
F FRH
Adventurecookie ❤️
FRH please my conversation has now turned into blockage discussions and hydration and suggestions that don’t relate to my first post. Either start a new conversation or help those with a different issue in the correct area of forum. For one thing cranberry juice is NOT the same as water for those experiencing burn. It is highly acidic and totally counteracts my suggestion and experience that took me a full hour to post here in hopes of helping others. Why bother! But now that I have to... [ more ]
FRH The conversation was started by me with my experience. If others have different suggestions or debate my help new conversations can be started to not confuse those wanting to continue referring to my experience. [ more ]
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J-Pouch ForumsGeneral Discussion
Thinking about a J-Pouch
J JPouchWannabe
FRH It’s so difficult to answer this. I have a J-Pouch 20 years and have had a lot of issues (rectocele cystocele and prolapse (all three) pretty miserable as far as what I’m able to eat. Irritation. Incomplete emptying. That being said I hated the “bag” and still can’t bring myself to go back to it even though doctors have said it might be better. I am thankful to feel whole again on the outside but the compromise is really having to watch my diet and to be frank it’s quite exhausting, no... [ more ]
Mary2017 Your welcome. I hope you can update us when you can, would love to hear your update [ more ]
JPouchWannabe Thanks for your in put. All of your experiences help!! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Going from J pouch back to ileostomy
JM Jim M
LORI726 That makes a lot of sense. I might have stayed there for a year if I had that many bowel obstructions! So painful. Glad things are improved now! That is no way to live. [ more ]
duck11 No major complications, but I did have an endless ileus, my guts took almost 4 weeks to wake up, but I think my surgeon, whom is nothing short of a hero to me, kept me in to save my mental health given where I came from going into that surgery. I had over 45 bowel obstructions in 2-3 years and so so so many ER visits and hospitalizations, dismissals and even hostility from other health professionals who weren't skilled or knowledgeable enough to diagnose my rare problem, accusations of being... [ more ]
DanniO ❤️
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J-Pouch ForumsGeneral Discussion
Crohn’s Disease in Jpouch
A AL77
Mary2017 Okay, just remember that doctors dont always know everything and its important to trust yourself on what you feel is best for you as well. I try to always follow that inner voice I have and its been a great help for me. Listen to that inner voice. [ more ]
Mary2017 Yeah I mean that I think you are a perfect match for the person that wrote this post just in case they get in your situation too. Sorry the j-pouch did not work out for you! And sorry you have Crohns I hope the ostomy will be great for you like it is for me [ more ]
AL77 I’ll see how the Infliximab infusions go and listen to my doctors on what they think my success rate will be if I reconnect to the jpouch. [ more ]
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J-Pouch ForumsGeneral Discussion
Scared of Upcoming Ileostomy
JH Jen H
Scott F There are some folks who need lots of hydration with temporary (loop) ileostomies, but most have more reasonable needs. What is true is that without a colon we need to become knowledgeable about how our new plumbing manages fluid, and what tools work best for us to take proper care of ourselves and avoid dehydration. This is often a combination of strategies, but drinking enough is quite important. [ more ]
Sara Marie I didn't have the ORS but maybe it would have been a good idea. Currently, I make sure to have extra electrolytes regularly, especially when the stools are watery, but not necessarily every day. [ more ]
Sara Marie ❤️
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J-Pouch ForumsPouchitis
Has anyone ever had pouchitis turn back into ulcerative colitis?
O OscarThePouch
OscarThePouch Luckily nobody promised me this was the cure and they were very straightforward with me about what the risks are and the long term complications could be. I signed on to surgery because the risks sounded less bad than the severe case of UC that I had. I almost died from sepsis once from a flare up. The only regret I have is doing alternative medicine instead of proper medicine, which was tantamount to doing nothing for my illness which is how the sepsis arose. My UC dragged on for so much... [ more ]
AMB This chain has me thinking back. Many gastroenterologists used prednisone as first line and maintenance therapy for Crohn's and UC back when I was diagnosed, which was routine and routinely bad medicine for many years. The 5-ASAs were in clinical trials for UC, not super effective, and they came with probably under-reported liquid diarrhea - so what was the point? 6-MP wasn't commonly prescribed. It was so un-common that pharmacists would question me when I went to fill my script! So... [ more ]
Jan Dollar Back when I had my colectomy, Remicade was considered experimental (and not covered for treatment for UC). So, not an option at the time. I think the best solution is the one you can live with. Maybe the problem is that there is so much information to be had that it becomes a mine field. Hard not to imagine possible side effects as likely side effects. Some doctors are better than others at helping you sort through it all. But in the end, we are the ones that have to accept our choices. I... [ more ]
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J-Pouch ForumsGeneral Discussion
And the answer is ... rectocele and cystocele!
S SeattleJane
Mary2017 I learned something new. I would have thought the vaginal canal would need to get checked for HPV or STDs [ more ]
Pouch2021 I’m a bit confused. I had a rectocele but it went away when I had my rectum removed and pouch created. Jane and Jan, do you mean you have an out-pouching or weakness in your J pouch wall that protrudes vaginally? I also have a cyctocele and tried a pessary but it was not compatible with the pouch—the pessary compressed the pouch even further which would have made it impossible to empty. Jane, you will usually need a urogynecologist for cystocele management, not a general gyn. @Mary2017 7... [ more ]
Jan Dollar Jane, I am glad you are finally getting some pieces to your puzzle. Sure, it is not a cure, but some insight goes a long way to reducing frustration. At least it is nice to know you are not crazy. Hope your holidays are pleasant and full of hope! Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Jpouch and Wegovy/Ozempic
J juliemk3
jcoach Shawn G, I noticed you stated you had a problem with obstruction due to huge stress. Is that a thing? Can stress cause obstructions? Why I ask is…I’ve recently been under a huge amount of stress and beginning to experience a slow down in stool output and a thicker consistency. So you have me curious as to whether stress can effect your bowel output? Welcome any input you may have on this. Thanks 😊 [ more ]
jcoach kta, Thanks good to know. Thanks for sharing as you’ve got more time than me. I started Mounjaro in June 2023. Still on just 5 mg. Hoping to stay at this dose. I do occasionally still have some nausea the day after shot but mild. Have lost 27 lbs. in 28 weeks. So far no obstructions or problems with pouch. Though I’m a little nervous as I’ve just recently this week noticed for the first time a reduction in my output of stool. Consistency has thickened. I’m gonna try increasing my water and... [ more ]
kta I posted above after just starting Tirzepatide. It has now been almost 11 months and I have had no problems with the pouch. I did stop Lomotil because my gut slowed down, but have had no constipation or blockages. I have also lost 50 pounds. There was a bit of nausea at first. That is now gone. [ more ]
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J-Pouch ForumsOstomy & Skin
J-Pouch Issues - At what point did you decide to go back and get a permanent ostomy?
Mikah the Bike LoverMikah the Bike Lover
CJR Caty, Thank you for sharing your story & experience. I am in a similar situation and symptoms. J pouch was fine until last few years, but now never out the loo, pain and lost a load of weight, restricted diet....I miss all food so much. Time to make a series decision. God bless you [ more ]
Mary2017 So happy to hear that! Thank-you! And your welcome! Anytime! [ more ]
Kushami ❤️
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J-Pouch ForumsGeneral Discussion
Digestive Enzymes: some results!
SM Sara Marie
Mary2017 Oh good! I am happy you emailed the doctor, I hope he gets back in touch with you. Honestly calling may be better, but you know your doctor more than I do. Oh good, with OPC, how often is that? Perfect! I am glad your dating entries, I was not sure if everyone dates their entries- I think its important to date them so you can see how far you have come for sure. I am glad you are doing that! Where do you keep your journals? Bookshelf? And it sounds very peaceful to journal while drinking tea... [ more ]
Sara Marie I just emailed the doctor this morning and I haven't heard back yet, but I hope I will soon! This conversation helped me remember to do that, so thank you! I guess I think of myself as having quit cigarettes since it's not habitual. I used to have them around all the time and smoke them every day and that's when I thought of myself as a smoker. Now I don't keep them in the house. If I smoke, it's strictly OPC (other people's cigarettes). I date the entries. I thought that was mandatory with... [ more ]
Mary2017 ❤️
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J-Pouch ForumsGeneral Discussion
Does water actually dehydrate us?
PouchomarxPouchomarx
Pouchomarx i pretty much always urinate when i poop which is several times a day. I have peed standing up before but i tend to clinch so i dont have an accident because if i relax too much trying to pee i might poop..lol. so i just pee whats in the bladder when i sit to poop [ more ]
Jan Dollar Poucho, I think you are taking the kidney doc’s instructions too literally. When they say water, they mean fluids. So that includes all fluids, except maybe milk, which is more of a mixed bag. Milk is also considered a food because of its high protein content, so it does add to your kidney “work.” You basically need to be sure your urine is dilute and that you fill and empty your bladder several times a day. That is the best way to determine your hydration level. Jan [ more ]
SteveG If you drink too much water that is poor in minerals (or even distilled) that can draw minerals from your body and harm you that way. But you would have to drink lots of liters and really overdo it to get there. Did you add all kinds of drinks (tea, coffee, ...) to your daily intake of 1 liter? That would be very little. I like to add a little bit of fruit juice to my water, that makes it more tasty and helps me to drink enough. I think it's about 2 liters a day in winter and up to 1 liter... [ more ]
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J-Pouch ForumsGeneral Discussion
Abdominal gas
N Nancydiane
Jan Dollar It can take a year or more for your gut to adapt to the lack of a colon. Most gas is produced by bacterial action on undigested carbohydrates. Much of this is fiber. Some people find that probiotics are helpful. Others get relief with short courses of antibiotics. Avoiding foods that are most gas producing is another tactic. The main thing is that it is an evolving process, and the fact the it is always changing can be quite frustrating. I found that my function improved over several years. [ more ]
Nancydiane Thanks she is prescribing a medication to help with gas told me to not do psyllium too soon and.to use lomotil instead of Imodium. [ more ]
Mary2017 ❤️
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J-Pouch ForumsPouchitis
C.Diff
vanessavyvanessavy
vanessavy UGH! I was in the ER two times this week. Last one I thought I was having a heart attack and I couldn't breathe. Scary few days. Anyway.. I picked up c.diff along the way. I have blood, severely bad cramping (I call it rectal cramping in my abdomen since I have a stoma) and intense gas. Since I have my rectum and anus removed I get this fluttering of massive gas that tries to push out of a closed up area. That is my #1 sign. And I am suffering bad. The blood and the cramping. Sucks.. I have... [ more ]
TE Marie When I have c.diff my frequency goes up and the consistency becomes more watery to water. I eat lite during the day and it so it gets worse as the day goes on, in the late afternoon, evening and into the early a.m. I didn't extend like a balloon, that I noticed, but I wasn't dressed in work attire either. Are you having pain too Rocket? The stool test is the best way to go, and not to hard for j-pouchers to produce. If you aren't taking antibiotics you should be able to do the test at the... [ more ]
Rocket Thank you Vanessavy. I have an appt with a GI/Nutrionist on November 5th. I have asked to be tested for Lactose Intolerance though I hardly ever touch milk products and c.Diff. I just want to get to the bottom of this why after I eat lunch, I have so much Gas that my gut is exentended like a ballon. So I have to pass it. An hour or so later, the same thing. An hour later than that, the same thing. Its like a bomb explodes in the bathroom. Normally, I pass some stool with it after the 2nd... [ more ]
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J-Pouch ForumsHelp! Need advice now!
RV Fistula
C colitisfree
Andreita I'm currently dealing with a RV right now. I'll have my J-pouch excised next week and get a permament ileostomy. [ more ]
Doug K Dr. Remzi is a super surgeon and a great guy. He has an enormous amount of experience. He did all three surgeries for me. I would recommend him. [ more ]
Mary2017 I am sorry you are going through this! I would strongly recommend Dr. Remzi [ more ]
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J-Pouch ForumsGeneral Discussion
Website Question
R roseviolet
roseviolet Thank you for checking, Jan. Am hoping that Bill puts it back the way it was. It's hard to improve upon perfection! Or "if it ain't broke, don't fix it!" 😄 [ more ]
Jan Dollar I heard back from Bill J and it is indeed an update. He is still tinkering with it. Jan [ more ]
Jan Dollar At first I thought it was on my end too, since there had been recent OS updates on my devices. I agree that the new formatting is clunky. I will send Bill J a message about it and see what I can find out. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Loop Ileostomy and End Ileostomy
A AL77
Mary2017 I hope you can let us know what happens in 2 weeks. I hope your story has a good ending. Best of luck [ more ]
AL77 Wow, me too. I am dealing with the same problem. I have 3 setons in me since August. My surgeon says I have perianal Crohn’s Disease. My bottom has healed since I was diverted. In a couple of weeks I have to go back to see him, he said he will be doing some kind of minor surgery down there don’t know exactly what, maybe some tissue repair, I don’t think he is removing the setons right now, I have to continue the Infliximab infusions. Down the road I may be able to reconnect to my jpouch but... [ more ]
LORI726 I kept having problems with perianal fistulas. I am a pharmacist and I lost faith in the drugs. After I developed antibodies to remicade, nothing else seemed to work for me. There are a whole bunch of new medications out there so maybe something would have worked. I was just tired of being a patient and I found it extremely stressful not knowing if/when I would end up with a perianal abscess from the fistulas developing new tracts. I also despised the setons. I know people live with them in... [ more ]
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J-Pouch ForumsGeneral Discussion
Recommendations for experienced J-Pouch G/I specialist in Seattle, Cleveland, Florida or St. Louis
S SeattleJane
SeattleJane @Mary2017 Thank you for your suggestions, it was very kind of you to offer suggestions, especially for the folks in Florida. [ more ]
Mary2017 There are some good doctors that are well versed about J-pouches in Florida like Dr. Jospeh Cody at Florida Medical, as far as Surgeon goes- I would recommend colorectal surgeons at Baycare. However, I hear very good things about doctors in New York especially Dr. Remzi for Colorectal surgeon and Dr. Bo Shen, their both in New York [ more ]
SeattleJane @Mary2017 Good question. I would like to be in the care of a G/I doc who is well versed in jpouch issues, ideally a G/I doc and/or clinic specializing in patients with jpouches (if such a person or clinic exists?). As for a surgeon, I am not currently in need of one, but I am prone to small bowel obstructions so it would be helpful to establish a relationship with a j-pouch surgeon if/when the need arises for another rebuild. Thanks for asking. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Abdominal Pain - Possibly from Adhesions
S SJAN810
SJAN810 ANDRINA, Sorry to hear you are having trouble too! Are you in the hospital for the blockage? What has your doctor recommended that you to do to treat it & avoid it in the future? I was on biologics for ulcerative colitis before my jpouch surgeries but now every test that's been done has come back normal...no obstruction, no inflammation, etc., so there hasn't really been a reason to try them again. I do take probiotics. It's hard to know whether they're doing anything for me or not. Have... [ more ]
Andreita I had my reversal done in May 19 and I'm currently suffering from inflammation and an acute blockage. I'm not sure what I will do next but I hope you find a solution soon. Have you been on biologicals and probiotics? Sorry if I missed it if you mentioned it already. [ more ]
SJAN810 It’s been almost 2 years since I started this thread and I’m pretty much in the same place I was when I started. On 2/26 I had a rough night…severe abdominal pain, a panic attack which caused me to pass out and end up on the floor twice. Last night (3/7) I had severe abdominal pain again. I’ve had the same lower right side pain for almost 2 years. Usually it is mild to moderate but every few months it becomes severe, 10/10 level pain, which only gets better after a BM (I often have to use... [ more ]
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J-Pouch ForumsMen's Health
Being gay with a j-pouch
L LIGuy11
Nuhorn This may need a new thread, but(t), any suggestions on plugs that work well, especially good sizes to start with? The array I see out there is pretty dizzying and some seem too advanced for beginners. [ more ]
LIGuy11 Yeah, one would think in a day and age when penises can be made into vaginas and vice-versa that we could at least figure out a way for those of us who are gay to have intercourse with a j-pouch. I guess there aren't enough of us to warrant any research into this... [ more ]
Former Member ❤️
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J-Pouch ForumsGeneral Discussion
newbie
A abbyann1
Mysticobra Wow. A pouch at 76! Amazing. I hope things smooth out for you. No advice. Except give it more time. I'm sure others that have alot more experience than I will advise better than I ever could. Richard. [ more ]
Scott F Some of us do have food sensitivities, but I think the variability you describe is more often the randomness of small intestinal output without a colon to stabilize things. When you say "in the bathroom all day" it's hard to tell whether you're able to empty your pouch properly, whether you're having urgency or not, and whether your stool is liquid or not. Gas is also sometimes the issue. In any case, the most general solutions that many J-pouchers employ are fiber, bowel slowers, and... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Partial blockage
B Brellis
SeattleJane Hi, Has your doc ordered a simple CT scan of abdomen/pelvis with IV contrast yet? Maybe that was part of the hernia work up - I know nothing about what's involved with that. The value of the CT scan with IV contrast is it shows if you have a partial blockage. You could call your doc on Monday and ask they put in an order for that diagnostic. Or, if you want clarity sooner, a trip to the ER might be in order. The ER admitting folks just need to know you have a j-pouch and are afraid you might... [ more ]
Mysticobra Sorry. That sounds serious. E. R. trip? I know when one is coming even if it's partial. But I have an ileo. I ate some leftovers yesterday. And everything I ate has a tendency alone to cause one. So I only had tiny portions of each. Chewed well. Drank a lot of water. It started anyway. But I got lucky. Been 16-17 hours since I ate. 4-6 after I knew. Couldn't find mirilax. I use a tad. Not a cap full. Works just as good. So I put a heating pad on high on the bulge for five hours. Having an... [ more ]
Brellis Im afraid that this never will solve by itself and my mind starts to think catasthrofic thoughts and just feel so sad… the buldge is still as much as it has been for a whole week now. The left side of my stomach is soft and the right side with the buldge is much more tense and swollen.. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Intense Overnight Gas, almost no matter what - Please help!
V VHDan
Mary2017 I honestly think that gas is going to be a part of our lives. The colon absorbs gas so since the colon is gone- were always going to have extra gas unfortunately. I think its just a matter of accepting. What helps my gas is Maalox, its treats painful gas too! https://www.webmd.com/drugs/2/...alox-ms-oral/details [ more ]
scallop Of the foods you mentioned I only eat broccoli and occasionally teeny amounts of cauliflower but I might as well give beano a try. Thanks! [ more ]
Scott F Not all fiber is created equal. When I eat broccoli, cauliflower, cabbage, Brussels Sprouts, etc. I *always* take Beano to reduce the gas. Gas can fill up a pouch pretty easily, and then there’s no room for poop. [ more ]
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J-Pouch ForumsGeneral Discussion
GLP-1 interesting mechanism
thumprharethumprhare
Sara Marie The article makes GLP-1 sound like it has a positive influence on many organ systems. What about removal of the colon creates this need? Also what weight problem are you talking about? Too much weight or too little? What would cause a doctor to prescribe this and does insurance cover it? Thanks! [ more ]
Sara Marie ❤️
thumprhare Read through my sausage fingers and auto correct errors. They beat me everyday! [ more ]
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J-Pouch ForumsGeneral Discussion
Complex Fistulas
A AL77
Cheryll Hi ATL, Yes, I have a j-pouch - I'm not sure why I'd be posting here if I didn't. If I didn't have a j-pouch, I would not have fistulas, crazy how the world works. Stool and puss continue to drain from the fistulas after the setons are removed and healing multiple fistulas can take 2-3 months. I do have some minor leakage due to a swollen sphincter area because that's where the setons were tied. I'd be shocked not to have any stool leakage because of my current diet, I'm eating low fiber... [ more ]
AL77 Hi Cheryl, Do you have a jpouch? If you do have you had increased stool leakage since your fistula surgery? I’m asking because the anal muscles can get damaged from the fistula surgery. [ more ]
lindaslankard Oh my, I had no idea that the process to get rid of the fistulas is so complex. I don’t know which is worse. I’m definitely stressed besides the pain and discomfort. Thanks for help [ more ]
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J-Pouch ForumsGeneral Discussion
Loop Ileostomy - Jpouch Disconnected
A AL77
Mary2017 I personally would not suggest a unused J-pouch to stay intact if you are not using it, temporary is fine but not for years on end. I would either get connected or opt to have the J-pouch taken out. I have an end ileostomy and the output has slowed down significantly! I am even less dehydrated than before. I would suggest an end ileostomy for sure. If you have any questions, feel free to pm me anytime. [ more ]
Scott F You can search for and read many dozens of posts here about various experiences with loop ileostomies. The majority that I've seen are negative, in various ways, though some folks do fine (and we have to keep in mind here that folks who are doing fine tend not to post about it, or even visit the J-pouch forum). [ more ]
AL77 Is there a higher output with a loop than and end Ileostomy? [ more ]
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J-Pouch ForumsGeneral Discussion
Just wondering what other jpouchers would do
chili123chili123
Jan Dollar I would take the meds, and I have. Biologics were experimental when I had my colectomy and j-pouch. Remicade has done a great job of inducing remission of my chronic pouchitis. I wonder if I might have avoided colectomy if biologics were more available at that time. My new GI was telling me that the bigger issue now is that biologics are not started early enough. I have been on one biologic or another for at least 15 years and I have had no side effects. Jan [ more ]
Scott F I'd take the meds. The misery from strictures isn't hypothetical, and your body has already expressed what happens without medication. Most folks eventually need some medications to manage this or that, whether or not they have a J-pouch. [ more ]
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J-Pouch ForumsGeneral Discussion
Anyone on Farziga w a jpouch , any dehydration and/or itching in the privates? Ketodosis? Asking because I think I have ckd chronic kidney disease
Len78Len78
Pouchomarx im 54 ans thin. I was diagnosed with stage 2 CKD about 2 years ago. My egfr has flucuated from 83 to 70 and creatinine has gone up and down around the cutoff of 1.23. My nephrologist stated for me to drink at least 2-3 liters of fluid a day. i am also on 12.5 mg of Atenolol for blood pressure. i had my first pouch in 2008 and my redo with mucousectomy in 2015. Since then i have always had some leakage and occasional bleeding. I do notice when i do alot of exercise like several miles on the... [ more ]
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J-Pouch ForumsGeneral Discussion
STEVIA issues ?
PouchomarxPouchomarx
Pouchomarx Ive read Body Armor is a good source of hydration but they have Stevia in them. ingredients just say "Stevia sweetner". [ more ]
twinkie Use all the time w/ no issues. [ more ]
lclassen As Jan said, sugar alcohols are a known problem. The issue with stevia is that the majority of the time, stevia is combined with a sugar alcohol - often either xylitol or manitol, etc. So be very careful in looking at the ingredients. I steer clear of stevia for that reason. If you can find pure stevia it should be ok, I think. [ more ]
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J-Pouch ForumsPouchitis
Entyvio
G gottswood
liza_s @@Aussie do you have entyvio in Aus? I’m moving to New Zealand from the US in October and just got news I may need biologics. So trying to figure out logistics but think I could do antibiotics for the time being. Only planning on doing 3 months to start and then assess if I want to move permanently! [ more ]
Aussie1 I have had very up and down bowel control times. The "reason" for the Entyvio is to stop/reduce the antibiotic use. When I can no longer put up with the loss of control I will start a course of antibiotics. I have found that cipro X 2 daily for 3 days; 1/2 tablet X2 daily for 4 days; 1/2 tab daily for ~ 5 days and then stop works for me. I notice a big improvement in the first 48 hours. I decided on this course myself and informed my GI of the results at a routine consult. He was a bit... [ more ]
Scott F I don't think it's an Entyvio side effect - it just sounds like the Entyvio is only partially taking care of the problem, at least so far. It might do a better job over time. I've been on Cipro with or without Flagyl for about 14 years, and my GI function is excellent, so I'll be sticking with that (at the lowest effective doses) as long as it works. [ more ]
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J-Pouch ForumsOstomy & Skin
excision surgery
P Pouch2021
Mary2017 Oh that's amazing!! I am happy you gained 12 needed pounds. I love how you said needed lol. Be careful with working out with your ostomy, working out can cause issues like hernias so be careful. I use a ostomy belt at all times. I love the wrap idea you mentioned So happy your well dear!! Why did you have to get your pouch excised? [ more ]
n/a Hi - I had my jpouch removed in '18 (1 year after it had been disconnected). I posted my experience with the removal at the Cleveland Clinic, if you'd like to take a look at it. https://www.j-pouch.org/topic/...al-date-and-time-set . The Cleveland Clinic team was just great. I did travel about 2-1/2 hrs to have the removal done there, and while travelling did have its inconveniences, I felt the Clinic was well worth the trips. I'm doing well with my end ileostomy, it's so nice to feel good... [ more ]
Mikah the Bike Lover ❤️
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J-Pouch ForumsPouchitis
oregano drops/antibiotic effect
R Rebe0505
Sara Marie I have used oregano oil capsules short term (like 10 days) to deal with minor infections/internal inflammation and on the skin as an anti-infective. I haven't used it for anything that would be called full-blown pouchitis. The type I have used is Gaia. https://www.amazon.com/gp/prod...ge?ie=UTF8&psc=1 Some people swear by Manuka honey as an alternative to ingested antibiotics. I have only used it for skin irritations and it works great! It's a bit sticky though. [ more ]
cindy greeley I would love to know more about using oil of oregano drops. I’ve had a J-pouch for 15 years and deal w/pouchitis and have to go on cipro. I am curious when I read the thread it dates way back to 2017 rather than anything more current? [ more ]
Jmakled Can someone please please just share the name brand of the pure oil of oregano that they have had success with to stay off of antibiotics. I am desperate for some relief and the cipro is starting to lose its effectiveness. Not to mention tearing my tendons apart. please just share a name brand. Because all brands claim to be pure high quality. [ more ]
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J-Pouch ForumsPouchitis
Medication for pouchitis or another type of bacteria infection in the pouch
A Alice
Indiana Just to be clear we can get it in Oz but not on the Public Scheme for pouchitis so we would pay private prices which is $466 for 56 pills. [ more ]
kta This is an old post, but I wanted to add something. I get my Xifaxan from Israel Pharmacy. There, it is called Hepazek. It costs about $200 for 30, 550 mg tabs. Well worth it when I need it. My concierge doctor turned me onto this pharmacy and they are very good. [ more ]
Former Member ❤️
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J-Pouch ForumsGeneral Discussion
Marijuana
JesseP22JesseP22
CTBarrister True, but 2 imodiums do not help me get to sleep. 2 gummies helps me sleep and also slows down the bowel movements equivalent to effects of 2 imodiums. I don't get up at night to move my bowels any more. It's called 2 in 1 action. So the gummies are worth more. [ more ]
Pouchomarx Two Imodiums are so much less expensive than 2 gummies..lol [ more ]
Mysticobra Thanks CT. I just wanted to clarity I'm not against its use. I just ramle a little.... Well. Way too much. P. S. I donated to norml back in the 70's. They sent out a little MJ leaf pin. In gold. Not real gold. Wish I knew where it was now. I was proud to wear it. Nowadays it wouldn't be seen as radical wearing it but I wore it all the time. Lol. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Help, I'm becoming incontinent
Mema 1Mema 1
MChi I buy my vsl online at https://shop.vsl3.com/vsl3-c2.aspx, with a $5 off coupon when using the promo code "DOCTOR". But, if that isn't affordable, then I have also used Inner-eco liquid probiotic. I buy it from whole foods or natural grocers stores for about $25 per bottle for 30 servings. [ more ]
Scott F Soluble fiber (like Metamucil) helps many J-pouchers by thickening the stool. Stool that’s less liquid is less likely to leak, and can be easier to hold in. The fiber develops a gel-like consistency when mixed with water. It tends to thicken watery stool to that gel-like consistency, and also thins hard stool to that same gel-like consistency. [ more ]
CTB23 ❤️
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J-Pouch ForumsGeneral Discussion
Infliximab Level Low
A AL77
Jan Dollar Good point about possible antibodies, especially with infliximab. As one of the earlier biologics it is based on mouse protein, and not fully humanized. Because of this it is more likely to cause antibody production. Perianal disease is particularly difficult to treat and it takes a long time. Jan [ more ]
Pouch2021 If IFX drug level is low it will typically reflex (lab will add automatically) to check for antibodies. If you've formed autoantibodies to the IFX than increasing the dose won't help. If you don't have Abs to the drug than increasing the dose may improve level and response. Also, it is important the drug level was drawn as a trough, usually collected off the IV before they give you the infusion to indicate the lowest level of drug in your system before the next dose. If drawn at any other... [ more ]
Scott F The medication is much more likely to work effectively if the blood levels are adequate. You may be getting partial benefit at the current dose, but it sounds like you need more. [ more ]
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J-Pouch ForumsGeneral Discussion
LOSING WEIGHT HAS BECOME IMPOSSIBLE
NicholleNicholle
Nicholle Thank you [ more ]
kta I am taking a generic Monjourno and have lost 50 pounds since February of this year. I want to lose 10 more but seem to be at a standstill. Who knows what the future holds? These drugs are new and most people who go off them gain the weight back. Medicare does not cover them so they are not cheap - as in not sustainable long term. I do know of a doctor who now just does one dose a month to maintain. That is down from four doses a month. I went to this under the guidance of a diet specialist... [ more ]
Nicholle Thank you for your post. I think with hard work and determinaton we can all get past some if not most of our challenges. I definately gets more difficult with age but I see plenty of people my age and older that seem to be in shape and have unlimited energy. I will aim for that and be happy with where I land. Thank you for the Redd Foxx memeory too I loved that show and all the great characters Lamonte Aunt Ester. [ more ]
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J-Pouch ForumsGeneral Discussion
Can I take Metamucil and Pepto Bismal?
JS Jason Song
Scott F CT, there are numerous ways that probiotics + antibiotics might work just fine. I’ll suggest just a few, which should hint at a much more complex system than “antibiotics kill all probiotics, so why bother?” Antibiotics (and Pepto-Bismol) are actually quite selective. They kill some bacteria species (or strains) readily, and they are completely harmless to others. In between are dose-dependent effects, bacteria that are killed at high doses only. Antibiotics (and PB) don’t have a perfectly... [ more ]
CTBarrister Scott, I am not understanding the science behind your post. If you take PB 3-4 times per day you are killing whatever bacteria is trying to populate the bowel. It makes no sense to me as a strategy to take probiotics with PB or antibiotics and I was specifically told not to by my Doctor. When we tried VSL #3 it was cold turkey. That being said I do try to eat a lot of natural probiotics but spending a lot of money on something from which you are getting a seriously diluted effect (if any)... [ more ]
Scott F While it’s true that antibiotics (or bactericides, like Pepto-Bismol) can reduce the efficacy of bacterial probiotics, it’s neverless quite a useful combination for some of us, myself included. It works best if the probiotic is spaced as far away in time as possible from the antibiotic (or bactericide), and it may require a higher dose of probiotic. I need a very high dose of VSL #3 DS, and the need for that might well be due to the Cipro and Flagyl I also take. So, for example, I take VSL... [ more ]
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J-Pouch ForumsMen's Health
The Gay Guy Chronicles: Sex, Dating, and Life with a J-Pouch
Heath DHeath D
RHolt @iitm500, thanks for your honest response and describing your approach. I have a younger brother who had 90% of his colon removed (sigmoid remaining) due to Lynch syndrome and colon CA (we have that in our family) and he is gay. He has some mental health issues and I am not sure he will be in a relationship again, however, it is good to know that it is possible, even with a J-pouch, to be the receptive partner if he ever met the right understanding, caring person. I really appreciate you... [ more ]
ittm500 I’m very open about all of this so happy to answer questions. I started with smaller dildos and worked my way up. Half the battle is learning how to control your muscles and relax. It wasn’t until after 2 years of trying (keep in mind this was also several years after the actual surgery, so it was fully healed) I finally cracked the code and figured out what worked to relax. I just exhale and pretend the breath is going all the way down and out my butt lol. I don’t think any of it was about... [ more ]
Scoobshags ❤️
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J-Pouch ForumsHelp! Need advice now!
Bactrim
Mema 1Mema 1
Jan Dollar By the way, you can buy bottles of loperamide OTC on Amazon, but I am not sure I would trust them. They are sourced from China and it is not clear what is in them. Jan [ more ]
Jan Dollar No, I just reduced my dosage gradually over the nearly 30 years with a j-pouch. I take a “holiday” from it from time to time to see if it really makes a difference for me. Turns out I still need it. Jan [ more ]
Mema 1 Thanks, Jan, I'll get some and try it very soon. Do you only take 4 because of the Remicade? [ more ]
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J-Pouch ForumsPouchitis
off antibiotics for 3 weeks with oregano oil
C clouseau
Sara Marie I have taken Giam Oil of Oregano capsules for minor infections and it seems to clear them up. I have taken as many as 2 a day before. I don't take it long term because of its blood-thinning effects. The ingredients are vague: Oregano Leaf Supercritical CO2 extract 230mg, Carvacol & Thymol 32mg. I don't know if it adheres to the above qualifications because there is so little information, but I do know it has helped clear up minor infections. I have also found that oregano oil is great... [ more ]
Jmakled Do you put the oregano oil drops alone in the capsule and take it? Or do you put something in the capsule with the oregano oil? I am about to start my trial with oregano oil. I bought the little brown 15ml bottle of doTerra off Amazon. I cannot take the cipro anymore. It’s destroying my tendons, and as soon as I stop, my pouchitis flares up again really bad. [ more ]
Bloesch88 ❤️
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J-Pouch ForumsGeneral Discussion
Recovering from takedown
aka KNKLHEADaka KNKLHEAD
Pouchomarx KNKLHEAD...sent you a few pm's [ more ]
aka KNKLHEAD Yeah, I think you can wait as long as you want from redo step 1 to take down. For you, it sounds like you could use a good break .. and it is likely you'll feel better and better. Since you take pain meds now, I hope that after a redo you feel well enough to get off them. Obviously, if you need them, you need them! I think I was good to drive three weeks or so from take down, but don't recall it being an issue, and after 10 days out from takedown, no pain meds, I'm sure I will have no issues... [ more ]
CeeeeCeeee I kept my baggie for a full year before having the takedown because it worked best for my work schedule. My summers were opportune for surgery/recovery because I was teaching. Looking back.....more than 10 years ago......I'm really glad I waited. My J-pouch was well healed and I had no issues transitioning to a connected system. I had no problem accepting the ileostomy because I finally felt so healthy compared to the years I lived with ulcerative colitis. In fact, if I needed to have a... [ more ]
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J-Pouch ForumsHelp! Need advice now!
dehydration
P Phil1010
Phil1010 You're correct, Scott, about coffee. Though a diuretic it still has water, as one med journal noted. Get this. In my third hospitalization a physician told me to drink no water at all. I was there, he said, because I had flushed all my sodium out with H2O. He advised any liquid but that: tea, soda, coffee, whatever, just no water. I rather swiftly ignored that, I do drink water and I still dehydrate but not nearly to a hospitalization point. Only the salt tablets have retained the water I do... [ more ]
Scott F Coffee is *not* “very dehydrating.” It is considerably less hydrating than water and most other beverages because of its diuretic effect, so it’s far from an ideal rehydrating solution, but it’s best not to spread myths about it. Some folks get dehydrated from drinking too little, some get dehydrated from losing too much (from frequency and/or poor water absorption), and some have a combination of these. It’s best to work out what’s causing a hydration problem before proposing a specific... [ more ]
Mary2017 Since you have dehydration issues. I would develop a plan on "How to drink more water". First: Coffee is very dehydrating because it is a diuretic. I would give up coffee but if you cannot give up coffee, I would drink a cup of water behind every cup of coffee to replace what you lost. I always put salt in my water to help me retain the liquid much longer. Maybe that can be something you can try? Drinking water: before during and after every meal will help as well. Drinking water behind... [ more ]
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J-Pouch ForumsGeneral Discussion
Pouchoscopy prep question
B Bubbapup
Dahlia @Bubbapup Hi I've had yearly pouchoscopy 's with sedation. Prep is liquid diet in afternoon, tap water enema in pm and 2hours before procedure. My previous surgeon said the preps for people with colons are risky with dehydration in jpouch patients. And always request a pediatric scope! I always request IV fluids to limit dehydration once IV is in. Good luck! [ more ]
Bubbapup I get mine every 5 years or unless I am having symptoms and they need to take a peek. I feel like the only good part is the sedation! Lol [ more ]
Jan Dollar I don’t think I am tough at all, but my pouchoscopies are nothing like a colonoscopy. I have been getting them without sedation since 1995 without issue. Definitely more comfortable since I have been in pouchitis remission. Anyway, I get mine about every 3 years or so. My biopsies have always been negative for dysplasia. Enjoy your Thanksgiving everyone. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Lifting weights and exercising
J Jaydog
Former Member For me the first thing to go when I got sick with quick onset uc was my muscles that I had worked hard on.I was just flapping skin and bones.which taught me it's not the size of your muscles but the inner strength that's important and doing too much weightlifting releases the stress hormone cortisol that causes inflammation.I will still lift weights but I will take it alot easier and mainly walk as walking strengthens your core and helps with digestion.walking pretty much does a full body... [ more ]
atimko I had my pouch done while in the Army. once I recovered from the surgery, i was able to do all the things that were required by the Army. I spent a further 5 years in the Army before retiring. I am not a big weightlifter, but don't see any issues with you doing it once you have recovered. The only limitations i ever have is that if i am doing an outdoor activity, i always want to make sure there is a bathroom available. [ more ]
Former Member I think he was talking about me to you. He has said things like that to me in the past before. I wish people would not do things like that but oh well lol. [ more ]
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J-Pouch ForumsGeneral Discussion
Chronic Anemia
A AprilLS
Lana Hi, Its frustrating dealing with health issues. I haven't been on this site in years but felt the need to respond to your message. I have chronic iron deficient anemia. I have FAP and my polyps were found in 1998 when I was 35 yrs old. I had a total colectomy with a temporary stoma. My reversal was done 2 months later, successfully. 2 years later I had to have my gallbladder removed. The next 2 years, my GYN followed me very closely (at my request) . I was having menstrual migraines 9 days... [ more ]
RHolt I so sorry you are going through this and your quality of life is not good. I also have chronic anemia from what my GI suspects is Crohns and I need iron transfusions. It seems that your periods are complicating your anemia. One option (although I definitely understand you don't want more meds) is to take a low-dose estrogen-progesterone tablet daily and stop your periods altogether. I did this for many years because my periods were so bad and the hormonal fluctuations caused breast pain. [ more ]
Jan Dollar You may want to search the Women’s Health forum for topics on hysterectomy. I believe there have been a number of members who have had a hysterectomy post j-pouch. I think the main issue is adhesions that may be present from prior surgery that complicate the surgery. Jan [ more ]
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J-Pouch ForumsMen's Health
J-Pouch And Prostate Cancer
M MikeEJ34
MikeEJ34 Hey Ed! Thanks for the update. Sorry to hear about the biopsy being positive for cancer. My father went through this process and successfully got a prostatectomy at the Mayo Clinic September 2020. You will prevail! We look forward to future updates! God bless, Mike 972-809-3640 MichaelEJohnson4@gmail.com [ more ]
Ed55 This is Ed. Going back to my original post, I opted for the transperineal route for the biopsy. However, even with this route, it is necessary to insert an instrument into the rectum/pouch to generate a real time image to merge with the MRI image. So for me, there was still the issue of having to insert an instrument that could be larger than the diameter of my anastomosis. I found a doctor at the Cleveland clinic (Dr. Z. Schwen) who was familiar with this issue and he was able to perform... [ more ]
Former Member ❤️
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J-Pouch ForumsPouchitis
Are beeswax capsules safe with pouchitis?
CK Chris KCMO
Chris KCMO I'm taking the same OregaBiotic product mentioned at the top of this post, which so far hasn't seemed to present any digestion problems. I'm going to stop taking it one week from today. I'm tempted to purchase the Visbiome product as a follow-up, as many do seem to recommend introducing helpful bacteria, though I'm leaning towards not introducing any additional just yet and instead seeing how things progress, so as to reduce the number of factors in my "experiment". If I do end up having... [ more ]
Sara Marie Thank you for the update! Which oregano oil are you taking? Are you still doing the beeswax one? I'm so glad you are feeling better! How long until your month is up? Are you planning to follow up your oregano oil regimen with some probiotics? I think I read that oregano oil can kill off some of the beneficial intestinal flora like antibiotics do. [ more ]
Sara Marie ❤️
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J-Pouch ForumsMen's Health
Prostate Cancer Found in My J-Pouch!
J Jfill21
JimJimJimJim For anyone with a jay pouch who finds themselves with Prostate Cancer. I had a J-pouch fitted in 1995. In 2014 I was diagnosed with a large aggressive Prostate Cancer. It completely filled the right side of my prostate. It had also grown into the left side. It had also grown outside my prostate in two places, including up and around my Seminal vesicles. I had radiation and hormone therapy. 27 years after my J-pouch operation, and 10 years after my prostate cancer diagnosis, at age 79, my PSA... [ more ]
Jfill21 Just an update—I had the pouch excision/Barbie butt/permanent end ileo surgery two weeks ago. The procedure was performed at CC Main Campus; we live in Virginia. I have three words—“I am happy.” The surgery was a beast as everyone who has experienced it will attest. I went in strong and healthy, with the exception of the known presence of prostate cancer in my pouch. I was told afterwards that I had had very few hiccups given the complexities and opportunities for set-backs. I lost a liter... [ more ]
Jfill21 The saga continues--pouch excision surgery is in 5 days. I was in Cleveland yesterday for the pre-ops. I met with my surgeon, the stoma nurses, had an MRI and labs. I was told that my case was brought before the tumor board twice, plus consultations with pathologists and radiation oncology on the best way to move forward. Fortunately, the cancer was found on the backside of my pouch. Had it been on the front, next to my bladder, the surgeon was going to recommend removing it as well. That... [ more ]
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J-Pouch ForumsFAP Forum
Blood test for fap when to make it
BorislavBorislav
Mary2017 ❤️
Mary2017 Wow, thank-you for sharing this story! That sounds very traumatizing! I am sorry to hear all of that. I am glad you got your colon/rectum out, I hope your kids will be okay. [ more ]
Lana I have FAP and I may be the 1st in my family. I am 61 yrs old but had j pouch surgery at age 35. My kids were 17 & 13 and because the genetic doctors could not identify the gene at that time, my kids had to have upper endoscopy and colonoscopies. Neither had polyps. The doctors recommended repeating these tests in 5 years, etc. I just had genetic testing this year and they identified the APC gene that causes colon cancer along with 2 other cancer genes. My kids got testing and neither of... [ more ]
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J-Pouch ForumsGeneral Discussion
Constipation with J-Pouch
P PARRR
Phoenix29 Thank you @Petey12 [ more ]
Petey12 Please read SJAN810 reply and click the link to the anorectal manometro test. In there they also list treatments of biofeedback and pelvic floor therapy which I highly recommend. It has helped me greatly understand what was going on. It is common with pouch surgery for muscles to be damaged, and therefore not function correctly. There are many things that can go wrong but there are therapies for them. Most doctors are like “it’s pouchitis so take Cipro” but there may be more to it. I also... [ more ]
Mziada ❤️
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J-Pouch ForumsGeneral Discussion
Sleeping through the night
Mema 1Mema 1
ibirdie ❤️
Mema 1 Wow, thanks so much for all the information .... you're incredible! [ more ]
Scott F Psyllium is the most common soluble fiber used by J-pouchers. Not everyone does well with it, and some find it gassy, but it does tend to thicken and bulk up the stool. I’ve used it every day since my surgery 17 years ago. Alternatives to psyllium include Benefiber and CItrucel, and some folks do better with one of those, while others do best without soluble fiber supplements. Some doctors apparently recommend taking these with smallish amounts of water, but I think that’s bad advice, and I... [ more ]
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J-Pouch ForumsPouchitis
Undigested Food
MY Mark Y.
lclassen ❤️
Scott F If Flagyl and Cipro no longer work then it’s probably time to try some new possibilities. Rifaximin is well worth a try, as long as you can get insurance to cover it. Other antibiotics that can work include Augmentin and a few others. Some folks also get help (mainly preventing/delaying bouts of pouchitis) from Visbiome or VSL #3, but those are also expensive if the doses are adequate. [ more ]
Sara Marie I have noticed that when I got the pouch there was a gradual but constant reduction in the ability of my guts to digest various foods. I didn't discover psyllium husk powder, which helped slow the transit time, until about 18 years in. Before that, the stool pretty much always had the chewed food look. The slower transit gave my intestine a longer time to absorb nutrients and the food would come out generally more processed. I added digestive enzymes and now the food is even less... [ more ]
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J-Pouch ForumsGeneral Discussion
Itch in Ostomy opening
S Sfitz27
Mary2017 Hey! I have a stoma as well. Which foods are you eating when the itchiness occurs? How much water are you drinking? Are you taking anything to bulk up your stool? Sometimes taking stuff to bulk up stool will help in itchiness. Do you put anything around your stoma as a barrier? I use stoma paste or vaseline as a barrier around my stoma before I put bag on. I definitely need the questions above answered so I can give a well thought out answer for you. [ more ]
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J-Pouch ForumsGeneral Discussion
Just had surgery- anybody get diverted to a stoma, then reconnected?
I ian337
AL77 Hi, I also had my jpouch disconnected. I underwent fecal diversion due to fistulas and perianal inflammation. I currently have a loop illeostomy and have to continue Infliximab infusions to heal the fistulas. I might be able to reconnect to the jpouch at some point. How is the jpouch working right now? Any problems? [ more ]
ian337 That is great to hear. Without developing ileus I think I would have recovered much faster. My problems stem from the small bowel scar tissue and not the pouch so I’m finding I’m not dealing with any bad burn as well and I’m able to pass some gas without the toilet (I’m I’m careful!). Just waiting for the “capacity” of the pouch to get better and some minor cramps when I have to go which seem a little stronger than before so I’m still going more often which I’m hoping will gradually subside. [ more ]
Former Member ❤️
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J-Pouch ForumsMen's Health
Anal sex after totally colectomy.
M mikethechampion
Chris Jones I would not. the chances are to high for damaging the thin layer of colon you have left where they reconnected you. You don't want to mess with something like that. [ more ]
Jan Dollar No, but she could certainly ask her doctor. She can also request copies of medical records. She does not have to have a specific reason. She could just say she wants them for her own file. It is not unusual for someone who had surgery as a child to have questions later in life. Jan [ more ]
mikethechampion yes she has had regular check ups but she honestly has no idea if she has a rectum or not and is to embarrassed to ask her mom. This may sound stupid but is that something she could check herself with a physical exam? [ more ]
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J-Pouch ForumsGeneral Discussion
Ilex Skin Paste
A AL77
r39530 Ilex was recommended to me by the nurses at Cleveland Clinic back in 2002 when I had my J-pouch surgery, and I used it for 20 years. I agree that nothing works as well as Ilex, but since it disappeared from the market I have tried at least a dozen different alternatives. The best I have found is Medline 'Remedy' Silicon cream. It has 12.5% dimethicone where most others only have 2%-5%. I believe this is what makes it a a more effective moisture barrier than other creams (not as good as Ilex,... [ more ]
AL77 That stinks, there is nothing even close to that paste. It got rid of butt burn completely and sealed in the leakage very well too. What product do you use now? [ more ]
Pouchomarx NOBODY REALLY KNOWS... it sucks cuz thats only product that dries for the most part and was using it for 15 years now. surprised the site is still active and emails are not bounced back which gives some hope.. was told they had ingredient issues after covid but then heard someone bought them and were possibly going to revamp production again but that was months ago. theres a guy on the FB group in Europe who lives by their plant and he said nobody has been there for a long time and no cars... [ more ]
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J-Pouch ForumsGeneral Discussion
ANYTHING OUT THERE SIMILAR TO ILEX ?
PouchomarxPouchomarx
Veggiescott Yeah, I’m thinking Brivol is a scam also -even though they canceled my order I’m still watching my credit card activity to see if it’s been charged, so far it has not but will continue to monitor it [ more ]
ELH Update: Brivol Ilex order is a scam! My credit card has not been charged by Brivol and I still haven't had any communications from them. I canceled my credit card with my bank and will be issued a new one. The weird thing is that Brivol had my credit card number before I had a chance to give it to them. I've never dealt before with this company. Go figure. [ more ]
Ljz I looked at Brivol when unable to get Ilex directly and was suspicious. Looked up their address in Miami which is same address as Costco gas station. Was afraid a scam so didn’t order. Keep us posted - hope I am wrong and your product arrives soon! I know we are all sleeping a little better now that we’ve scored 2 tubs of Ilex. Hope and pray to not have shortage again any time soon! Was traveling last week before shipment arrived and had packed my last tube of Ilex in checked baggage- sadly... [ more ]
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J-Pouch ForumsMen's Health
Sexual Function for Males who have had Jpouch Surgery
F Future_Jpouch_Patient
therealstinger thats funny, try Trimix injections , you will last 2 hours at least. lol [ more ]
therealstinger Yes I had issues from impotence and I started taking Viagra which helped a lot. Tried Cialis , they worked for awhile then only gave me a half erection after my body got used to those meds. Now I take Trimix shots and have no issues with the Trimix injections. Sex life is wonderful now. Its a choice of Cancer of removal of the colon replaced with J-pouch. Not all men get these issues after surgery. But I was one of the (65% guessing) that did get impotent. It was depressing at first until I... [ more ]
lavisingh204 Im a jack rabbit in the sack. its all mental [ more ]
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J-Pouch ForumsGeneral Discussion
Am I really ready for J-pouch surgery?
C Casie130
TE Marie It is good to be skeptical when making this huge decision. I had conscious sedation over 14 years and saw my colon sick and then bounce back. I knew what it looked like inside. During my last test I saw that part of my colon was BLACK and dead inside. The rest of it didn't look well either and my GI took around 30 biopsies. I didn't have any polyps, just one ugly mess of a colon. I'd been in the flare from hell for 6 months. My GI set up for a CTscan 2 days later. When I had my follow up... [ more ]
Disneynut I'm sorry Dog Day and vstRN, I didn't read your whole stories, but were yours emergency surgeries? Where were your surgeries done? I know the success rate is much higher when it isn't emergency surgery and when done by an experienced surgeon. She needs to make her decision based on comparing apples to apples. I hope I didn't offend, because I feel very bad for your situations. [ more ]
vstRN I would try the fecal transplant and worms in a second (and I'm a vegetarian too)! I'm pretty fresh out of surgeries but I really really wish I had waited on this and exhausted more options. It does sound like you are emotionally ready for this and I think it is wonderful that you are confident you want this done. I made the decision because I was scared, felt guilty and was just so emotionally beaten down from a 2 week stay on a med/surg floor with horrendous room mates. When my kids would... [ more ]
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J-Pouch ForumsGeneral Discussion
Has anyone treated SIBO successfully?
FM Former Member
New577 Early on I thought I had pouchitis. I tried Visbiome, it did not help, so I abandoned it as a therapy. My GI explained to me that the small intestine (specifically the pouch) was going to get populated with bacteria that was never meant to be there, and thus probiotics to counter that bacteria. I never understood the whole science behind it, and never understood how a hydrogen breath test diagnoses SIBO but the 1-2 month course of bactrim for my UTIs ended it and it has not returned. I’ll... [ more ]
Scott F Docs are telling J-pouchers to take probiotics because studies have shown that probiotics reduced incidence of pouchitis. VSL #3 and Visbiome are lableled specifically for J-pouchers. I understand that Dr. Shen may now be recommending a different approach to his patients, but let's not overstate this. There's plenty of uncertainty here, and humility is warranted. I'm not aware of evidence that probiotics (or yogurt, for that matter) cause SIBO. [ more ]
Pouchomarx just curious if you were on probiotics before you were diagnosed with SIBO? cuz probiotics are not meant for the small intestine and can cause SIBO actually. Not sure why docs are telling jpouchers to take probiotics. Dr Shen states not to and instead do green tea extract instead [ more ]
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J-Pouch ForumsGeneral Discussion
MRI Defecography notes
S SeattleJane
SeattleJane @Pouch2021 Thanks for your comments, they are truly helpful and I appreciate your taking the time to post. I am sorry you have had more than one defecography, but your experience and willingness to post provided me with new info - there is more than one kind of paste. That's helpful to know. And thank you for the other test comments. If yesterday's test doesn't yield any "aha" information, next up on my dance card is the anal manometry test in early January. After yesterday's abysmal... [ more ]
Pouch2021 Hi Jane, I'm sorry you went through this and hope you do find some answers. I always found these functional tests a bit unhelpful particularly when not performed under realistic conditions. i've had a few defecographies and they were all on a cammode though with the exception of one, they used contrast material that was so thick I would have never been able to expel it. Regardless of the sitting position it was just too thick and sticky. I felt like you did during anal manometry testing with... [ more ]
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J-Pouch ForumsPouchitis
Pouchitis with possible Chron's
bionicbowelmanbionicbowelman
AllyKat I just finished my third loading dose. I was much happier on Entyvio. 10 years till it just stopped working. [ more ]
bionicbowelman I had my first infusion of skyrizi yesterday. Hoping this one works better than the humira and stelara. [ more ]
SteveG Yes, that initial course of prednisone really made sense. I was also recovering from a Covid infection and needed some additional weight. I hope that Skyrizi will help you too. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Metamucil Use with J Pouch
F Frustrated
Sara Marie In my experience, psyllium works right away, not over time. If you're not seeing any difference, you may need to take a larger amount. I take a heaping teaspoon with water before my breakfast (oats) and that is sufficient, however, before meals that move quickly through (veggies, meat, etc.), I need 2 t with water before eating. You may need even more because of the missing gallbladder? And I might require less because I'm kinda on the small side (5'2", 110lb). [ more ]
Nancita 👏🏽 What a wealth of info here! Thanks all! I’ve had my j pouch for a few years after surviving colorectal cancer, then lost my gallbladder. Loose stools are bad enough but that combined with increased butt burn from all that bIke releasing w/o the gallbladder is very uncomfortable . Thanks to this topic ( and my gastro doc) I started taking Metamucil fiber a few days ago and hope it will help mitigate all the bile acids and slow down my active j pouch. So far I don’t notice much... [ more ]
Frustrated ❤️
See all 35 replies...
J-Pouch ForumsHelp! Need advice now!
Metamucil didn't work
MediMedi
Nancita I have a J pouch after having colorectal cancer 10 years ago- 2014.I wanted to share my Metamucil journey in the hopes of Helping anyone else searching on our website for tips and tricks. I became desperate to find a solution for the frequency of stools and how loose they were as no matter how I adjusted my diet or used anti-diarrhea medicine, The frequency and unpredictability of my bowel movements was severely limiting my ability to basically live, leave the house, go on trips Etc. I work... [ more ]
Bobish Cheers both, I use the 'my protein' version because it's cheap and the company is well known for simple honest quality supplements (amongst the UK body building community at least). So far I've had mixed results with a teaspoon twice a day (4 times my usual dosage). First day was great, second day uncomfortable with regular toilet breaks. Maybe it will settle down, I've been meaning to pay with dosage level for a while. Will let you know the outcome. Also I'm tempted to try benefiber at some... [ more ]
naplis In case you want to try the exact psyllium product I referred to in my post, it is "Yerba Prima Psyllium Whole Husks Colon Cleanser". It is marketed for heart health. The ingredients list: "Psyllium seed husks". That's all. I started with 1 Tbsp and worked up to 2 Tbsps over a year. Best of luck! [ more ]
See all 12 replies...
J-Pouch ForumsK-Pouch Korner
removal of gallbladder years after having K-pouch
L lcolche
Shavon Just in case someone is looking for updated information on this topic. I had my gallbladder removed at Northwestern in Chicago by Dr Teitelbaum. He consulted with Dr Strong who used to work at Cleveland Clinic with Dr Dietz. It was laparoscopic and I didn’t have any issues. [ more ]
jan15 That makes sense. Thanks for explaining. Be well and peace [ more ]
Kim S I’m don’t think Dr. Dietz can be officially listed at Langone until he completes the credentialing process that dr’s go through when they move to hospitals in another state. Based on Facebook comments, it should happen in October and folks who have been in the queue are getting ready to schedule appointments as soon as they open up. He has already communicated his scheduler’s name and contact info to existing patients. [ more ]
See all 23 replies...
J-Pouch ForumsGeneral Discussion
Getting depressed about my ongoing anemia
R RB15
R227 Thanks for getting back to me RB15, much appreciated. Sorry to hear you're still experiencing anaemia issues, I'm sure it's really exhausting constantly having to have infusions like that. Especially if you're not feeling much benefit from them. I hope your anaemia improves, and that the crohns gets under control too. My anaemia has improved in the last four months - but the only thing different is that I completely gave up alcohol. I can't think of anything else that's changed in that time,... [ more ]
RB15 Hi R227, sorry for the delay in replying, i missed the email notification. So since that post i got diagnosed with Crohn’s disease unfortunately, so i guess that could certainly be a factor to the anemia as i was losing blood too. However, i have been on Stelara now for 8 months and it is working well to the point that i bleed seldomly now, but still have the same rate of anemia. Which leaves me to believe that maybe it has been an absorption issue all along, maybe due to the Crohn’s or the... [ more ]
Drbev603 ❤️
See all 48 replies...
J-Pouch ForumsMen's Health
J-pouch and prostate cancer
J jdhalf
Former Member Glad your okay [ more ]
MikeEJ34 Thanks for the update! Not getting ahead of yourself and worrying is absolutely way easier said than done, but it’s still a true statement and one I hope you can manage to accomplish! 😊 We’ll certainly be praying for you! We look forward to your next update! God bless! ❤️ [ more ]
Pouchomarx Had my appt friday. PSA is now 2.78, and FREE PSA was 30% which is considered abnormal with Cleveland Clinics chart of 2.6. My urologist stated lets get PSA again in 6 weeks and if its any higher he could order a prostate MRI so we can see if anything looks suspicious. If anything is there and PSA goes up then consider doing a biopsy. He knows about my jpouch and cant do biopsy the normal way so said he doesnt do the biopsy but the interventional radiologists do them transuretheral. Actually... [ more ]
See all 55 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Menopause and pouch problems
L LisaT
Sara Marie I didn't end up coming off HRT but I did reduce my estrogen and progesterone dose and this helped me in the reduction and frequency of PMS symptoms that include lower back pain and butthole irritation (especially hemorrhoids). I wonder if you're having an increased sensitivity to foods or a reduction in your production of digestive enzymes? I have been experimenting with those lately and they have helped reduce bloat and I feel like I'm getting more nutrition/energy from my food. That paired... [ more ]
Allison My pouch has been going crazy in the last year during perimenopause. I'm getting a lot of bloat and not going to the bathroom as much as I used to during the day, but going all night. I go to bed looking pregnant then wake up after several trips to the bathroom looking normal again. Anyone have any tips? Does it settle down once you're in menopause? [ more ]
Sara Marie ❤️
See all 11 replies...
J-Pouch ForumsGeneral Discussion
My Wife's Continued Issues
D DRS
kta Dr. Diane Bai in Tacoma has been amazing for me. After my old doctor retired, I tried a few different GI docs and neither of them had the gift - kind of an inate understanding of what I needed. At the time, I was having a lot of GI issues. She has been a godsend for me. [ more ]
tf If anal fissures I use a compound cream called Diltiazem 2% ointment. Very helpful to me. Best of Luck you have a lot to think about and I pray u find the right Dr and treatments. [ more ]
Sara Marie ❤️
See all 3 replies...
J-Pouch ForumsMen's Health
Weightlifting and Male Hormone Replacement
donn369donn369
Justcantlose75 Also because u have a pouch and that it’s made out of ur small intestine your small intestine is NOT made to hold stool so there for u must get it out of u ASAP so that means people DOUCHE your ass.. lol get it out of there ASAP and I PROMISE IT WILL MAKE A WORLD OF DIFFERENCE... [ more ]
Justcantlose75 Please take hormone replacement single blend cypinate or enenyhanate is fine stack with Decca or prope does wonders.. when U have uc. It lowers ur test count bring it to normal standards anywhere between 6 to 800.. plant base diet forsure oatmeal twice a day stay disciplined and all will be MUCH better... [ more ]
THE KID ❤️
See all 35 replies...
J-Pouch ForumsHelp! Need advice now!
What is everything that might cause chronic constipation with a j-pouch?
S SeattleJane
Maverick Plus Seattle Jane, do a search on this website. There must be a few discussions on pouch prolapse. [ more ]
SeattleJane @Jan Dollar Thanks for the head's up about the threads on this site that will explain j pouch prolapse. I will look them up and read them. I am able to do an internet search on anal manometry and find good descriptions, but zero on j-pouch or pouch prolapse. To answer your question, I don't think anything was ruled out as far as previous adhesions are concerned, (but maybe?) and I also don't know if she looked as far up as the spot above the pouch. All she said to me when I groggily woke up... [ more ]
Jan Dollar There have been a number of threads here that discuss pouch prolapse, fewer about anal manometry. I am not sure how your GI office handles patient communications, but you can certainly ask for these diagnostic procedures without getting an office appointment with your GI first. I am used to email communication through a patient portal and phone/video appointments. The defography would be scheduled with the radiology department. Your GI may need to refer out for the manometry, such as a... [ more ]
See all 12 replies...
J-Pouch ForumsPouchitis
discomfort while passing stool
H HEMU
Ljz Yes- that was a typo. Yes, I put little in anus without any issues. The ointment with the 3 ingredients was meant to be inserted in anus to promote healing too. [ more ]
Sara Marie Thank you! I may try that out sometime! I usually use Calmoseptine like Lauren does, but I have wondered if there is anything better because the Calmoseptine comes off when you poop and wipe. When you said "up into Amy's" I imagine you were using speech to text and you actually said "up into the anus". Is that correct? So you put it a little ways in there. Good to know that isn't irritating. I'm so glad you have healed. Yay! And thanks for the tip! I get a sore or itchy butthole from so many... [ more ]
Ljz Those are the 2 products. No sting- thankfully! Had initially used Convatec Stomadhesive but it stung. Initially did 60/40% but I reduced amount of paste. Mixed well. Good luck! I push a dab up into Amy’s and also put plop right at anus. It doesn’t harden as much as Ilex did but best of anything I’ve tried. I do have rectal cuff but had tear and ulcerations inside and around opening. They have healed! [ more ]
See all 29 replies...
J-Pouch ForumsGeneral Discussion
Anal sex
M Mrigor
Former Member Anal sex is a no go for us. That can permanently damage the pouch and cause permanent incontinence. Please do not risk that, you have been through enough already. [ more ]
Sara Marie Scar tissue may affect how the massage feels as well. [ more ]
Mrigor ❤️
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
Pouch redo with Dr. Remzi
M Momof2
Ljz YIke’s! Had not heard that BCIR not being done anymore nor did I hear that regarding K pouch. I think Dr Dietz is last I heard doing k pouch. Really makes me hope J pouch redo goes well if in fact this is the case. [ more ]
Pouchomarx Just be aware the BCIR isnt really performed any longer. Even the kpouch is hard to find a surgeon these days. [ more ]
DanniO ❤️
See all 18 replies...
J-Pouch ForumsOstomy & Skin
Anal skin breakdown and butt burn
B Brad9481
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 ]
See all 18 replies...
J-Pouch ForumsPouchitis
Solving pouchitis!
FM Former Member
FelixGust To be honest I can't really remember Sarah. I suspect each different product has suggestions on daily quantities on the packaging and then I blended them all together and those kinds of quantities [ more ]
Sara Marie So I guess you mostly just experimented with the individual herbs, determined whether they were helpful and how much was right for you, then added them all together in your own special blend? [ more ]
Furious Pouch ❤️
See all 33 replies...
J-Pouch ForumsGeneral Discussion
A Little Frustrated / Helpless Feeling
C capper
kta For the burning - there is an oral medicine that absorbs the acids in your stool to stop the burning. It is called cholestyramine powder. When I first had my pouch, things just would not heal because I had such acid stools. My doc prescribed it and it worked wonders. I was able to heal and get off the med. [ more ]
Scott F When my life started to be dominated by gas (that of course I had to get out of my pouch frequently) my doc diagnosed SIBO. A couple of months of doxycycline took care of it. These days a shorter course of rifaximin seems to be more common, and has fewer side effects. [ more ]
capper Further to my current condition... This is one of the main issues I am dealing with these days. I just ate a big lunch. About 90 minutes later I started feeling a desperate need to have a bowel movement. I went to the restroom and instead of having a large pastey bowel movement, it was extremely loud and gassy, messy but a limited amount of output. In better days, it would be a larger BM and nowhere near the amount of gas and noise to go with it. I assume this is the result of inflammation... [ more ]
See all 12 replies...
J-Pouch ForumsWomen's Health & Pregnancy
frustrated with a bartholins cyst or fistula
roxzroxz
roxz I just finished 21 days of Flagyl and the swelling is mostly gone, but there is still a hard tubelike lump that occasionally drains pus, thankfully not stool. Sometimes it burns, sometimes it hurts or itches. MRI in 3 days will be interesting if they see anything going on. Like everytime I finish antibiotics I fear everything will come back with a vengence. [ more ]
Shannalee Shortly after my anastomosis/j-pouch surgeries in 2000 I developed a recto-vaginal fistula, so I had stool coming out my vagina for several years. Just as I was coming to grips with having to wear a tampon 24/7, I had a pain that literally felt like my organs were being re-arranged. Next thing I knew, no more! I believe God healed me. You really need a relationship with the Lord to get through this. He loves you! I still have struggles, sometimes more than others. Like lately, I’ve been... [ more ]
Sideshow Bob Check with your Gyn, even if just a phone call. MRI is pretty accurate in detecting fistulas. [ more ]
See all 3 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Vaginal birth or c section
C Ciara93
Former Member PERFECT!!! My doctor told me to do the same. [ more ]
Sara Marie ❤️
JPouch2017 @Ciara93 I don’t remember my pouch/incontinence being a big issue after my C-section. I had all of the regular symptoms that anyone would post C-section. Mostly I remember the trapped air under the shoulder thing being painful but other than that, it wasn’t more or less hard than my vaginal delivery’s, just different. Good luck!! [ more ]
See all 10 replies...
J-Pouch ForumsK-Pouch Korner
Continent Ileostomy WOC Nurse Questions/Feedback
E ET_RN
skn69 A little addendum to my previous post: Some of the things that we never tell Continent pouchers: 1. your stoma is part of your body, it is not made of artificial tissue, therefore it will react to everything you eat or do. 2. If you are dehydrated your stoma will shrink. It will get tight and difficult to intubate. Use more lube. It may even crack and bleed. As long as it is just a few drops of blood, you should be ok. 3. Your stoma will react to your meds. If you take antihistamines... [ more ]
skn69 Thank you for taking the time to ask, ET_RN, I'm one of the oldies here. Almost 45yrs with my K pouch and still learning. I also took the incredibly stupid plunge and moved to Paris 40yrs ago, where no one even knew what a K pouch was. The only surgeon who I ever met who had done one, 'didn't believe in them' and tried to remove mine at every turn. I was number 13 on my surgeon's list of Kock pouches made. That said, he had a fantastic team and a great stomatherapist. She sat with me, showed... [ more ]
skn69 ❤️
See all 7 replies...
J-Pouch ForumsHelp! Need advice now!
Facing surgery, have questions!
TheRealBrettTravisTheRealBrettTravis
Deb C Have you tried an enema then using a catheter to see if you can get more complete emptying? [ more ]
Doug K Hi - sorry you are suffering so badly. So the problem seems to be that you are having trouble emptying the pouch fully, and getting backed up and it’s causing acid reflux and an overall feeling of illness. That sounds hellish. The doctors don’t really know exactly what is causing your inability to empty, but that inability to empty is what is causing your reflux (potentially). The doctors are recommending to give you an end ileostomy to get you feeling better, but they don’t have a pinpoint... [ more ]
Jan Dollar This is a tough one. Sure, there are other options, like a pouch redo. Not many surgeons have experience with it. Plus, with a Crohn’s diagnosis, you cannot really risk losing even more small intestine if the second pouch fails. With Crohn’s, preserving your small intestine is a priority, because you are at a higher risk for future bowel resections. You’ve been on lots of different meds, so I don’t know what you have not tried. Still, I do not blame you for wanting to be sure that permanent... [ more ]
See all 4 replies...
J-Pouch ForumsWomen's Health & Pregnancy
FAP and natural pregnancy. Is it possible?
FAPqueenFAPqueen
Rachel Isobel Just seen your post today. So my comment may not be relevant anymore but no harm in sharing. My mother had her colectomy in 1959 was told she would never conceive. She went on to have 5 children, I am the only one with FAP. So you would more than likely be able to conceive naturally. I have chosen not to have children, I am 57 now and very happy with this choice. My mother is still going strong at 86, although she had a Whipples procedure in 1989 due to severe FAP manifestations everywhere. [ more ]
lablover Hands on your back. [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Hemorrhoids in a J-Pouch?
BS Ben S.
Sara Marie Agreed! Hemorrhoids are not funny! [ more ]
Len78 Hemmorroids not humorous lol [ more ]
Len78 I don’t have a rectal cuff anymore since transanal mucosectomy done 4/17 via minimally invasive surgery so I don’t have the issue of humorous anymore the pouch is handsewn to the anus now due to fap and a risk of high grade dysplasia /cancer which thankfully came back benign len [ more ]
See all 18 replies...

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William J. Johnson
bjohnson@j-pouch.org

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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