J-Pouch ForumsGeneral Discussion
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsMen's Health
I started a modified keto diet a few years ago. Not to lose weight but to feel better. Initially I cut out all sugar and carbs. Went full out keto. I lost too much weight but didn't miss the sugar or carbs. I learned a whole new way of eating. My joints didn't ache, I was sleeping better, my thinking was more clear. I now eat mainly extremely low carb and very low sugar for the most part however I am not against the occasional cookie or bowl of ice cream. It works for me and I have kept the... [ more ]
Intermittent fasting helps me feel better and it keeps my clothes from getting too tight. So I eat before 5pm and then don't have anything again until late morning. This provides the body with some rest. My colleague likes fasting for days, but I have never tried it. She swears it makes her feel great! [ more ]
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J-Pouch ForumsPouchitis
Yeah, food choices matter. I can eat pretty much whatever I like, but I am vegetarian, so that obviously directs my choices. If you are pre-diabetic, I’m assuming you mean T2D? T2D is a metabolic condition. T1D (which I have) is an autoimmune issue, which is why I assume it is somewhat linked to my pouchitis. (I find that my pouchitis gives me no trouble is my T1D is behaving. Yay!) Stay strong! [ more ]
Hi Tori, I've been pre-diabetic before, not diabetic, but I truly believe that sugar is bad for j-pouchers. I definitely noticed that sugar and gluten make me go to the bathroom more often and give me bloating. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
J-Pouch ForumsHelp! Need advice now!
It is the assistant you are speaking with and not the surgeon. They do not generally consider cases individually they go by what they are told by the surgeon. They are unfortunately too used to dealing with patients who own all of their own internal landscape and not prepping properly because they "don't like the taste" or "it makes me poop all day". If you are certain you are clear and continue to be so then do what works for you. The assistants have probably been yelled at by the surgeon a... [ more ]
Thank you guys for answering. I do feel like this doctor is asking for overkill. And not taking into consideration my system that goes down so quickly. I called the office and his assistance said I had to do all of it. But I’m not going to. It’s not gonna get any cleaner by taking another laxative and dehydrating my body anymore. There’s nothing more to come out. I’m not a meat eater, so nothing’s gonna take a long time. I have to admit I was really surprised at how rude the assistant was,... [ more ]
I have a pouchoscopy coming up next Thursday. first time he suggested the magnesium citrate. I said no way, it will put me into full IPS. so I do half of a Miralax prep: 119 Grams with 32oz of gaterade. This does the job. don’t be afraid to speak up. Doctors are used to dealing with the masses. We are all individuals and if you know what works for you, tell the doctor that’s your preference. [ more ]
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J-Pouch ForumsGeneral Discussion
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 ]
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 ]
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 ForumsHelp! Need advice now!
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 ]
👏🏽 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 ]
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J-Pouch ForumsGeneral Discussion
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 ]
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 ]
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J-Pouch ForumsGeneral Discussion
Thanks for your input……….😃 [ more ]
I have been the same way since my redo takedown in 2015, its minimal but it does suck. I put a dab of ILex on my hole and then place a small piece of gauze pad against it. It helps contain, but if next time i go poop if its stained i change it out. Thats why I am so upset as to if Ilex will ever come back. It dries and does well for me and i can actually tell if my leakage is more, but if i use anything moist or slippery i cannot ever tell . I still have some Ilex left but will run out in... [ more ]
Thank you all for your input. It will take 2 months to see a gastroenterologist 😕 The seepage causes itch beyond belief. I’ve tried everything. I just wash really well . Hopefully some cipro and that other med will cure it without surgery. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hello, oh how I do relate to your situation! I’ve had my pouch for three years and my whole life revolves around BMs. I take three immodium/day, breakfast, dinner and bedtime. I take levsin when I have IPS. I watch what I eat, how much I eat and when I eat (rarely after 6pm). I stick to two meals per day, and my food no go list is extensive. I need to monitor medications (no extended release meds for me). While I have not had pouchitis, my GI and I monitor for cuffitis, SIBO and IPS. its... [ more ]
Hi there, Im so sorry you’re having so many problems. Do you like your Dr? Important to have a good GI doc that you like and can rely on. I don’t have a lot of advice. I’m having some issues of my own. I can tell you that I take VSL #3 ( probiotic) twice a day. Expensive but has made a big difference for me. I also eat a pack of Metamucil wafers everyday. Sometimes I drink the powder. That has helped me with firming up my stool. I read somewhere that an empty bowel will cause gas. Not sure... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Try the water eneama it will help for now [ more ]
No stomach pain here. Just difficulty emptying. I strain a lot but only a little bit of stool comes out at a time. Here and there a decent amount will come out, but something is definitely off. I have a prescription for Linzess which usually helps me go, but I don't want to have to take it regularly. I will ask about Rifaxin, thanks! [ more ]
I have not had that issue. I can tell you if you are backed up and your stomach is just in agony. Go to Walgreens get an enema empty it out and put water in there. That will help tremendously To relieve yourself. The antibiotics Would defiantly back you up as well. Maybe as Doc about Rifaxin? [ more ]
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J-Pouch ForumsGeneral Discussion
F me, a dozen times a day seems high. With Codiene phosphate, and say.. one meal a day, I might be x3/4 if I am VERY lucky. I suppose on average its always SOMEthing wrong, if you count dodgy food, pouchitis, cuffitis etc. Generally though I have found the WORST thing for pouches is to graze and eat "small things very often" One meal a day, seems to work the best. Constant grazing, or breakfast, lunch, and dinner has never been the best way to go for me, naturally everyone IS different. [ more ]
So glad to hear of others' experiences. My pouch life started in 1990, so I'm now ca. 33 years into it. I've had lots of similar experiences to those of other folks here. Some pouchitis every couple of years. A handful of blockages putting me into the emergency room. Toilet frequency has stabilized to ca. a dozen times a day, and 0-3 times a night on average. This past year had to start wearing 'pads' 24/7 to keep from leaking through my undies. Still remembering the 8-week period with an... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Dr Shen is the only Dr I will go to for my pouch—here’s why. I had my k-pouch for 8 years before I started having severe pain 2 hours after eating every meal . I went to Laney clinic, palms hospital in st.petersburg fl ( where I had surgery, but they are no longer doing this surgery) and no one could find the problem. (Many cat scans and tests ) Finally got the appt with Dr Shen at Cleveland clinic and he found the problem immediately after a pouchoscopy. It was a fecalith—which is impacted... [ more ]
I have had a very positive experience with Dr. Shen. I have had my pouch since 1989, and was issue-free for 11 years, at which point pouchitis kicked in. My doctors put me on Cipro to control the pouchitis, and I was never able to get off of it for more than a month at a time. I was a patient at The Cleveland Clinic and I went to see my original surgeon (Lavery) in 2003 as a pre-op to have my pouch reversed - I couldn’t stand the side effects of Cipro any more. Dr. Lavery had me meet with... [ more ]
I've got a "floppy pouch" issue - the lining gets droopy causing various problems. Dr. Shen tightens the pouch in these areas during pouchoscopy with tiny bands - the same ones that are used to treat bleeds in the esophagus. You can't feel them and they fall off after they do their job. I think of it as a pouch facelift. It has improved my pouch function each time. [ more ]
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J-Pouch ForumsPouchitis
When I had yellow output it was a problem with my gal bladder. I had some obstruction there that caused high backpain (between the shoulders). best to visit a doctor, yellow is not a good color for that type of output [ more ]
I honestly have no clue what’s going on with me. My stools(without fiber supplement have become more formed and are either like pudding/oatmeal or they come out in little nuggets. That has happened since yesterday. My frequency is up because I seem to not go a little at a time and have a little pressure and gas directly where my vertical incision was about halfway or a little more downs. The stool, although formed well, still has a honey mustard tint to it and no sure why. My thought is my... [ more ]
So now my bowels have been more formed and actually look decent but still are yellow honey mustard in color. Has anyone dealt with this issue with pouchitis? Or has there been an issue with something else for people? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Darren thanks so much for your experience with Stelera. At my age of 76 soon to be 77 I really want to safe time and not experiment with other drugs. I have acute inflammation and have put off taking any drugs with my j-pouch since 1998. This year will be my first exploration with a biologic. I had 7 years of ulcerative colitis with meds before the surgeries . Thank you for sharing , it means so much.May you keep healthy and enrich yourself daily. I do art work to satisfy my needs for... [ more ]
I took Stelara for several years for my Chrons, this after a severe adverse reaction to Remicade. It worked great for a couple years, then dosing frequency had to be increased to double (monthly 90 mg) when efficacy diminished. Eventually just stopped taking when the drug lost any effectiveness. In consult with my GI, the risk of continued usage outweighed the nominal gains I got from continued treatment. For now, I am back on Cipro to control symptoms. Will probably begin Skirizi in the... [ more ]
Thank you Bubbapup for your helpful response. I appreciate your feedback on arthritis as well. This is the only medication I have to be experiencing and hope it works. Wishing you continued good health, thanks so much for your reply Sheila [ more ]
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J-Pouch ForumsGeneral Discussion
Small update: I am managing a bit better, but still would prefer not to have to take this medication. It has helped with joint pain (annoyingly not what I am taking it for). I will need to stick it out for six months to see whether it helps the main problem. I’ve also been getting some type of reflux, could be from HCQ or my other two medications. All have it listed as a possible side effect. Or it could be my j-pouch problems. Anyway, I’m soldiering on. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsPouchitis
As I posted in your other thread, I have been in the same "gray area" as you for almost 20 years. You say that they don't think you have Crohn's - but they don't know if you do, either. But whether you do or not DOES NOT MATTER. You, I and thousands of others will live the rest of our lives in this so called gray area and the sooner you accept that, and focus on treating your inflammation, the better off you will be, physically and mentally. It's most likely pouchitis due to backwash stool,... [ more ]
@Derrick - It's not such a gray area really. For instance it is no longer said that removal of the colon "cures" ulcerative colitis as had been the standard advice before J-pouch became the "gold standard" surgery. Most j-pouchers end up with pouchitis at some point - not Crohn's. Sometimes there is what's referred to as "backwash" inflammation that occurs upstream of the pouch. Here is a good article. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8239975/ "Cuffitis" is a separate condition... [ more ]
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J-Pouch ForumsFAP Forum
ulcers were found in my pouch aside from duodenom and stomach on prior pouchoscopy/endoscopy from 10/10/24
hi michael, the ulcers in the duodenom and stomach were clear by the next scope which was 2/29 , prior scope was 10/10/23 he didnt comment on pouch ulcers but some history/reports suggested they were in the jpouch too not just stomach and duodenom ulcers are the least of a concern. im dealing with dysplasia in the cuff/jpouch and need advancement of the mucosa and my stomach has to go. the entire thing. total gastrectomy. not in the same day thanks for thinking of me and asking --len [ more ]
Hi Len, Any update on your status? Praying for you tonight. [ more ]
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J-Pouch ForumsGeneral Discussion
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J-Pouch ForumsWomen's Health & Pregnancy
Hi, I am 10 weeks pregnant now and have been taking Imodium daily. My gp had said this is safe during pregnancy but now Google is scaring my and with having a j pouch it’s necessary daily for me since being pregnant . Has anyone taken it frequently in the first trimester and everything been ok? I’ve stopped now and I am way overthinking and getting upset that I’ve done harm [ more ]
First off, CONGRATULATIONS!!!!! Next, have you tried any natural thickeners like psyllium husk or Metamucil? You can probably get the same or similar products from a health food store too if you are worried. I agree with the elimination diet too. Try removing only one food group from your diet, keep a journal, give it a few days before expecting results, and write down how your body reacts. If there is no change then try a different food group. I generally suggest to cut out all dairy... [ more ]
Did your doc advise you to stop meds? I took a couple courses of Flagyl (first and second trimester) during my pregnancy for pouchitis. I also continued my lopranimide, lomotil, and promethazine as needed throughout. As a side note, I finally bit the bullet and gave up dairy after my pregnancy and have not needed any meds except over the counter Imodium for my pouch. If you know your trigger foods trying to cut them out could help. congratulations on your pregnancy!!! [ more ]
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J-Pouch ForumsPouchitis
Dr. Shen is my doctor. Cleveland Clinic is a good place to go. Your scope results sound a lot like mine. Cipro and Flagyl are definitely worth a try. It's usually given for a few weeks or up to a month as a short course "first line" treatment. You may feel much better quickly. I did when I first used it. And then the docs at Cleveland Clinic should figure out what's going on. It took me a few years for the pouch to settle down - Much longer than I'd expected. But things do get better. [ more ]
My colorectal surgeon performed a pouchoscopy 1/23/2024. He stated that pouch looked good. However, he indicated in test results that there was granularity and mild inflammation. The nurse practitioner prescribe Cipro and Flagyl based on my symptoms - excessive diarrhea, cramping, urge to go with no results. The "pouchitis" flareup started 3/28/2024. I have made an appointment with a GI doctor in Cleveland who is highly recommended by a New York Dr. Schen, supposedly the best GI doctor for... [ more ]
It sounds as though you may be in the "antibiotic dependent pouchitis" category if the pouchitis returns when you discontinue the Cipro & Flagyl. But that assumes it is actually pouchitis and not a functional problem or cuffitis. Is the diagnosis based on pouchoscopy? Cipro carries a "black box" warning that alerts to the risk of serious side effects. My community GI was willing to prescribe though my specialist was not. I was on it for several years, unable to reduce dose below 500 mg a... [ more ]
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J-Pouch ForumsGeneral Discussion
I have been taking antibiotics + probiotics before for about 3 years, for chronic pouchitis. That way inflammation was reduced widely. My doctors recommended to try that biologic called Skyrizi, and as my liver labs were far beyond normal (maybe as a side effect of antibiotics) I agreed. So far I'm ok with it and my liver labs have normalized. [ more ]
Hello and thanks for the update! What is the biologic you are taking? What have your symptoms been that you have had to take antibiotics, probiotics, then the biologic? Has it been pouchitis? Sounds like the antibiotic/probiotic approach was insufficient for your ailment. Do you still have any symptoms after starting the biologic? I am curious about these things called biologics. They have an attractive and yet somewhat scary name. [ more ]
Hi Sara, the effect of sodium butyrate again wasn't clear enough for me last year. So I stopped it and simply continued with antibiotics and probiotics. Since December I'm on a new biologic treatment. Still got some supplies of sodium butyrate here, so maybe I'll give it another try. Good to hear that you experienced some positive effects. [ more ]
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J-Pouch ForumsHelp! Need advice now!
I absolutely agree with everything you said.....100%. I definitely need a relationship with a gastro doctor, for sure. I will work on that tomorrow, for sure. And we are so lucky to have this support group to help us......so greatful to have you and others respond. Helps more than I can say ❤️ [ more ]
Excellent advice @scottf. i think surgeons are appropriate for post surgical care (several months at most) then my GI from the crohns and colitis center at my university hospital took over. Since they have a large jpouch cohort in addition to whatever other GI stuff they handle I am receiving excellent care the last three years post surgery. I see them 3x year in the clinic/telehealth plus pouchoscopy. They are literally a email message away for help when something goes wrong with my pouch. [ more ]
Surgeons vary a lot in terms of how much medical pouch care they provide - some are great, some are worthless, and many are in between. Most of the positive stories of surgeons providing care seem to involve patients they actually operated on. A surgeon is the doctor you have right now, so maybe that’s who to call first. Ask him if he’d prefer you see a gastroenterologist, and (if so) who he’d recommend. In most cases you’d be better off with a pouch-knowledgeable gastroenterologist. These... [ more ]
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J-Pouch ForumsHelp! Need advice now!
I know exactly what you’re talking about. It is a terrible way to live. I’ve tried every cream, ointment, etc I’ve gone to Cleveland Clinic, Vanderbilt—you name it—I’ve tried it. I wish someone would find an answer because you have no quality of life. It’s a tear in the wall if the rectum, fissure or fistula. Help us please!!! [ more ]
I’ve had 2 setons in for 8 months. I’m in constant pain especially after using the bathroom. The pain escalates more and more after each bm. The pain is like someone put a hot poker in my ass. Any thoughts would be SO appreciated. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Thank you both so much!! I will try Imodium and returning to my old supplies. [ more ]
I had the same problem. My issue was that my stoma was overactive and producing more than twice the maximum amount per day. It was impossible for my skin to heal or even attach a bag successfully for more than a day. I solved the issue with Imodium.. That slowed down the output, so I could properly attach the bag and my skin got a lot better. I know some doctors can be wary of taking Imodium with an ileostomy, so you may want to check with your doctor before trying it. If you have an... [ more ]
Hi Moirathestoma, First of first, you should contact an ostomy nurse and let them look at it, they may prescribe some ointments to you. And they may ask you replace the barrier every day until symptoms go away. I had an similar situation after second surgery, and I figured out I was allergic to the convex barrier at the end. You should try your old regular barrier, and a barrier ring. The barrier ring should prevent leakage. My symptoms went away in 3 days, after using old products and... [ more ]
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J-Pouch ForumsGeneral Discussion
Yeah magic eggs must be worth a lot lol. [ more ]
It's the magic eggs! (Must be the dark arts.) I'm glad they're not doing their thing any more. It was truly awful. Not the blood. I have never minded that. [ more ]
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J-Pouch ForumsGeneral Discussion
I know what it feels like to be wary of eating things that might cause a blockage. I've also had recent experience with a stoma and short length of bowel where I just couldn't seem to get a diet that consistently worked, and eating became a source of problems without any pleasure, for a while. I know how frustrating and miserable that can be. One thought I have for you. Many years ago I had a large abscess that was effectively an obstruction and I had to empty my pouch through a catheter. [ more ]
If you're female and the doc who gaslighted you by telling you your pain is psychosomatic is male, this fits into an old stereotype, and there is obviously some creepy sexism/misogyny in play that has been very prevalent in western medicine, but getting less so as the field is less dominated by one gender. I hate to say it, but it is something that is still experienced by a lot of women when they go see doctors. And this type of sexism/dismissal of real concerns is not limited to male docs. [ more ]
FWIW I drink water with every meal. While there may be excellent individual-specific reasons to separate them I think it’s poor practice in general for J-pouchers, who are prone to dehydration. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
There are multiple types of enzymes and it's good to try more than one, I think. Certain enzymes are geared towards certain types of food. For example, Beano (or generic version) targets beans and cruciferious veggies. I have a plant enzyme formula that targets grains and fats more, and one that is better for meat. I don't know yet which ones work except the grains one seems to help with millet and the generic beano seems to work for beans. I get better stools, less food fragments in the... [ more ]
That’s great that the psyllium really helps you. I may need to explore it. I tried digestive enzymes but I had some stomach pain. The guy in the health food store said it’s the best one, but it did have a small amount of acid in it and maybe that’s what the issue was. [ more ]
I also got my pouch in 2004. I have also had a lot of sensitivities to multiple types of food and everything just rushed through for about 18 years, then 2 years ago, I learned psyllium isn't just for constipation, it's actually excellent for slowing down guts if they're moving too fast. I have noticed that a heaping teaspoon of psyllium before meals (mixed with water) slows down my digestion and increases my absorption of nutrients. I use plain old organic, fine ground psyllium husk. I... [ more ]
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J-Pouch ForumsPouchitis
Does anyone have tears, fistulas or fissure in anus wall. So painful [ more ]
Yea that’s what my doc said. I ended up calling the doc on call at the office today. He called in lidocaine but the doc on call didn’t want to give me nitroglycerin bc of my complicated history with my pouch. I’m guessing he didn’t want to make that call. He said he would call in a script for the lidocaine but wait until my doc could confer on Mo day. That’s fine. I’m doing the sitz baths which are helping and upped my colestipol and Imodium so I’m going a lot less, which is helping. My doc... [ more ]
This sounds like an anal fissure. The usual treatments for that are warm sitz baths, making sure the stool is soft, and nifedipine, diltiazem, or nitroglycerin (Rectiv) ointment. Good luck! [ more ]
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J-Pouch ForumsGeneral Discussion
30 year j-poucher here. I tried various creams in the early days with not great results. I'm retired now so can simply rinse with home bidet and pat dry with a soft cloth I keep handy. I can manage with just wiping with toilet paper when away for the day but if I have to be away from bidet longer than that I have a squirt bottle I rinse with, then pat dry with toilet paper. If you have the means available running water gently over the area while passing stool can help dilute the acidity and... [ more ]
I use calmoseptine or zinc ointment to protect the anus (but it does wipe off so must reapply) and aloe to help heal the anus when it is already irritated. I also use "Forces of Nature" brand oil called "Fissure" to heal the anus when the aloe doesn't seem to be helping. It must be reapplied as well. I make sure to keep my nails short on my pinky finger for when the irritation to the anus is slightly inside. The bidet can help a lot when you are home. When you go out, you can take a portable... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Haven’t been on this site for awhile, but I have had my J pouch for 34 years and I am now 57 ….seeing a physical therapist that specializes in the pelvic floor is so helpful especially post menopause. Most hospital based physical therapy departments have people that specialize. [ more ]
I had my surgeries done as a teenager and don't have any comparison to what sex was like pre-j-pouch, but I did have trouble with discomfort once I became sexually active. After many years, I ended up going to women's health physical therapist, and she was able to identify exactly which muscle was overly tense and fix the problem. The difference was night and day, and I haven't had any issues with pain or discomfort during sex in the years since. SO, all that to say, it's possible that... [ more ]
Anal isn't a problem for me, don't have any interest in that, but my husband and I do have a very active sex life, and I would hate to see that suffer. I know the rectum helps support the vaginal wall, so that is the part that worries me, and is making it hard to decide between which surgery to have. I appreciate you advice. I hope things improve for you. [ more ]
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J-Pouch ForumsGeneral Discussion
I will try your suggestion. Not using paste except to fill in belly button. Problem area is right above pelvic area where i have fold everytime sit up. Thanks [ more ]
Three years ahead, I went bonkers the first few weeks when I had my temp loop. Nothing worked. I was changing the appliance several times a day. Finally a kind nurse in the middle of the night told me to abandon the paste . i was instructed to clean, dry and shave the area. I then applied the special powder (I don’t remember the name). I was then instructed to gently blow dry with heat, the ring, place the ring on, and then gently blow dry with heat the ring again to firmly seal it in place. [ more ]
I think I remember they sell this putty stuff that you can use to help with the seal. Maybe give your surgeon a call and see if they have suggestions. They would give me samples of stuff to try. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
J-Pouch ForumsHelp! Need advice now!
Regarding urinating, after my 2nd surgery, for 3 weeks I only peed when I emptied the bag sitting on the toilet. It eventually got better where I could pee standing up. Surgeon said it was not unusual since the had to "move" organs around to created the J-pouch. [ more ]
Yes, I had the same issue after surgery 2 of 3. Output got looser because now ostomy is diverted to two parts. There is a downstream(your new j pouch) not in use, so you have shorter intestine absorbing water. You will have an enema exam before your last surgery. And you will see it is a fairly long path from your stoma to your j pouch. I think you should ask your doctor if you are concerned about dehydration. Leakage only happened first couple weeks on me. I placed a pad on my bed. I must... [ more ]
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J-Pouch ForumsHelp! Need advice now!
a temp loop ileostomy surgery looming at same time of gastrectomy. fap patient with low and high grade dyspasia stomach polyps at the tip and high grade dyplastic tubular villous polyps with high grade dysplasia at the tip. surgery will happen/on horizon.
So sorry you have to face all of this. It sounds as though you're in good hands with the surgeon. The surgical approach back when you had the procedure may have been chosen for better function, because having the mucosectomy can mean more leaking. If you've not yet used the site's search function, search "advancement" - there are quite a few posts from people who've had mucosectomy and advancement procedures. Same for "gastrectomy." Maybe you'll identify members who will share their experiences. [ more ]
Wow...I didn’t understand half of that! It sounds serious...the best of luck to you and I would like to hear how it all went when you are on the other side. Take care. [ more ]
Scott 100 percent agree [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Some of the latest studies into long term higher supplementation, I thought that would be obvious. [ more ]
rcrossco_1: Where are you getting your info on Vitamin D3? You state that "they" are already saying that higher levels of this vitamin can cause arterial problems. Please elaborate. [ more ]
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J-Pouch ForumsGeneral Discussion
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J-Pouch ForumsGeneral Discussion
Hi roseviolet, Thanks for your reply. I just talked with my surgeon today, and he gave the same instructions. He asked me to take 1 to 2 immodium before meal and before bed. He also gave me Lomotil if immodium not works. Thanks again for all the replys. [ more ]
If your wet wipes contain alcohol, your butt might burn. Also, you can try taking two loperamide/immodium with each meal and before bed to see if that slows you down and then taper off later on if movements slow down. It won't hurt you long term. [ more ]
Yes it is. in time (it took me a year) your pelvic floor will strengthen so that when you urinate standing up you can hold back the BM. however, if I sit down to urinate I will almost always have a BM if there is stool in the pouch. [ more ]
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Bill Johnson founded the J-Pouch Group in 1997.
After a life long battle with Ulcerative colitis, Bill finally had his colon removed and was given an ostomy in 1993. A failed attempt for a j-pouch and then many surgeries to get back his health gave Bill the motivation to create a web site dedicated to giving support to patients who have had or are considering j-pouch surgery.
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