Calmo
Visbiome

Skip to main content

Topics

Sorted by last update

J-Pouch ForumsGeneral Discussion
What are strictures/narrowing?
F Fredz
CTBarrister AMB, I only just saw your post now. That's interesting and I will ask myGI which type of anastomosis my surgeon did, as my surgeon passed away in 1996. As a matter of interest my pathology report on my recent pouchoscopy just came back and here is a redacted version of it. These issues being described and the polyp are all at the inlet area that was strictured: Surgical Case SURGICAL PATHOLOGY REPORT 1. SMALL INTESTINE, INLET J POUCH, BIOPSY: - GRANULATION TISSUE AND FIBRINOPURULENT EXUDATE... [ more ]
AMB Regarding inlet strictures, the explanation I received is that this can be simply a mechanical issue for some. There are two surgical approaches to connecting the pouch to the small bowel - an "end to end" anastomosis which results in a straight channel and a "side by side" anastomosis which takes a bit of a turn. Either can result in their own type of stricture which may require endoscopic attention. I have a side-by-side, have been balloon dilated once - no inflammation involved in my case. [ more ]
CTBarrister Here is a diagram of the J Pouch enabling visualization of Afferent Loop: [ more ]
See all 12 replies...
J-Pouch ForumsGeneral Discussion
Poop less often
A AustinA711
rcrossco_1 NOTHING beats Codeine Phosphate, either 30mg or 60mg. Makes rubbish like Lopermide feel like Paracetamol vs Fentanyl for pain! I took Codeine for many years, and I had a few chicks who actually had NO idea I had ever had surgery at all. It basically gave me almost a normal persons life. Naturally you have to be sensible, too much and you get blocked, which isn't much use for a pouch which relies mainly on gravity! [ more ]
SteveG It's a good idea to drink little with a meal. Otherwise you would thin down your digestive gastric fluids. If you add supplements to some already chewed food into your mouth, enveloping it a with food using your tongue, it should be no problem getting it down with no or little water. [ more ]
Kushami Seconding the suggestion to separate drinks from food intake – a couple of sips won’t make much difference, but a glass will, in my experience. Also avoid foods that consist of fluid plus chunks – sorry that sounds horrible but I don’t know how else to say it! So a broth-type soup with cubes of vegies floating in it. A broth or puree on its own is okay for me, it’s the mixing of solids with a lot of fluid that caused problems, whether that was how the dish was or whether it was mixing a... [ more ]
See all 12 replies...
J-Pouch ForumsGeneral Discussion
Bloated
M my5grandsons
Sara Marie I have had this before and I drank a lot of water (and hot herbal tea) even if I vomited it up. I also did a lot of moving around to try to get the kink out. My obstructions aren't actually a foreign object in the intestine, but rather, a kink caused by the adhesion to the body cavity at the site of the old ostomy site. They have always resolved within a few hours due to the above actions, however, I would go to the ER if it hasn't resolved yet. [ more ]
AMB Sorry you have experienced this. Sounds like an obstruction or partial obstruction. When it happened to me, I was told to get to the ER, then to stay on clear liquids for a few days and then advance to liquids for a few days more before trying solids. You didn't say if your pouch was emptying. If you are unable to empty your pouch or keep liquids down your doctor will probably suggest the emergency room. [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Heat!!
Y ytcrockpot
ytcrockpot Humidity is a killer, must find a cooler place for next summer, maybe Alaska or Australia lol [ more ]
Sara Marie I'm a room temp water drinker. Cold water usually feels bad to ingest. [ more ]
Mysticobra I drink anywhere from 60 to 80 ounces a day. That does not include coffee or a soft drink I may have. I don't think they count. Lol. But I'm not working. When I was working I know I drank at least two gallons. A day! Most at work. I'd down a 20oz bottle at once and go get more. I don't need as much now. And Scott. My urine is clear. That is the best indicator. I totally agree with that as a benchmark. Just wondering how many people drink room temperature water as I do? Or cold water? I can't... [ more ]
See all 32 replies...
J-Pouch ForumsGeneral Discussion
warm water enemas
S scallop
Pouch2021 Thanks Sara Marie for the recommendation. The weight gain isn’t for lack of eating, other than perhaps not eating as much as I should during a busy work day, as I can really put food away. Completely omnivorous and eat a varied diet of largely unprocessed food though I have a soft spot for salty kettle chips. Eat full fat cheeses, nuts, tons of avocados, cook mostly with olive oil but do not avoid butter. Love shellfish raw and cooked. Eat spicy Thai and Indian. Honestly the foods that most... [ more ]
SteveG It's up to you what position you prefer. You can go down on hands and knees while doing the enema, I just squat a little and lean forward. It takes only a few minutes, you could even adjust the speed by opening the valve only partially. Of course with that 1 liter cup and the hose it is not an ideal mobile device. [ more ]
Sara Marie How long does that take? Do you lie down while it's draining into you? I saw that set up was available at the drugstore but it looked like so much gear. I was looking for something that would be small and packable, though your method sounds pretty gentle. [ more ]
See all 21 replies...
J-Pouch ForumsGeneral Discussion
Ilex update
PouchomarxPouchomarx
Pouchomarx I have been searching for something comparable as its very expensive too, but i have found nothing even close to it.. [ more ]
CTBarrister I am wondering if it might make some sense for Ilex to sell to a bigger company that does not have the same prioritization issues with their suppliers. The email you posted kind of begs that question. I suspect someone at a bigger company who read that seemingly widely circulated email might be thinking the same thing, and formulating an offer to purchase Ilex while knowing that they can cure those supply chain issues in a way that Ilex cannot. It seems like that possibility is more likely... [ more ]
Pouchomarx I really hope they dont go under. This is the only product that i like, there are no others that compare unfortunately.. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Side effects of Meds
P Pals
Pals thank u for the response up to This point my j pouch is not bad. It is the medication for UC is where my issues are coming in to play [ more ]
ytcrockpot I’m so sorry to hear you’re going this. Having complications with the J-pouch is bad enough. The medication side effects are crazy nowadays. What you describe sounds like side effects from biologics. I’ve been doing this JPouch thing for 42yrs now and only within the last 10yrs have I struggled with inflammation and now that I’m older (60) it’s really hard. I tried biologics which made me deathly sick. yes Biologics and steroids work, is it worth the side effects? That’s how I look at it. [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Losing hope - any ideas?
I ItHurts
ItHurts Thank you everyone I have started pelvic floor therapy (2 sessions so far) and will look into a second opinion with Dr Holubar. [ more ]
Glenys D Sorry to hear about your situation. I've had improvements with seeing a pelvic floor physiotherapist. I hope you find some help soon. [ more ]
Kushami If you live in the US, another possibility for a second opinion is Stefan Holubar, at the Cleveland Clinic last time I checked. [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Methotrexate and joint pain
ehbraunehbraun
Glenys D Hi, I've found that without Methotrexate, I have joint pain. But I had to stop Methotrexate as it lowered my White cell count. I was taking it in conjunction with Biologics. So now I am trying Naturopathic medicine to help with the joint pain. We'll see how it goes! [ more ]
Pouch2021 Hi Ellen, Our immune systems change over time and as we age. Often rheumatologic diseases, including enteropathic arthropathy, can lessen in severity or burn themselves out. It is not uncommon for patients, even those with severe RA, to require less medication over time or even be able to taper off completely. I can’t speak to if this is the case in IBD. Glad you’re feeling better. [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Anyone doing a ketogenic diet with a jpouch?
F Fredz
Jaypea No I know I am not in ketosis as I do not eat enough fat and include too many sugars in my diet. For example yesterday I ate completely carb free until dinner when I had sushi. As I mentioned I do not follow the ketogenic diet strictly as I don't need to manage my sugars. I do it because it makes me feel terrific and when I want carbs I eat them! Works for me. [ more ]
Fredz Great to hear! But you do notice that you are in ketosis and running off fats? [ more ]
Jaypea I try to follow a keto diet as much as possible. I started it after being tested for celiac (I'm not) as I had horrible stomach cramping, intermittent bloating then diarrhea, joint pain and insomnia. As soon as I cut out carbs (and sugar) I felt immediately better. Far more energy, no more joint pain and my thinking was more clear. I did lose a ton of weight and now have to be very very careful that I don't lose too much. I'm now 3 years in and enjoy the occasional scone and sandwich with... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Sex
A AustinA711
Former Member Oh dear!!! Its not recommended, all I can do is say that. I wish you would not do that do though. [ more ]
AustinA711 Late reply, but I am able to and it is great. Took me a little while, but slowly training my body and going slow has done wonders. [ more ]
Former Member ❤️
See all 23 replies...
J-Pouch ForumsGeneral Discussion
Stoma vs pouch output?
MJ Manoj Jain
Manoj Jain Thank you @New577 this is all super helpful. My BMs still remain less during the day. While I’m still figuring out my diet, whenever I feel heaviness in the abdomen area, I take Duphalac which helps in passing applesauce type consistency BM. Hoping this to get sorted soon. [ more ]
New577 it was two years ago, and 10 days after takedown at the stoma site from a undiagnosed fistula. I was leaking stool from my abdomen after the surgical staples were removed. That’s how I knew I was in big trouble. Remember, solid BMs should not be your goal. Loose applesauce type consistency should. It takes time for you and your pouch to figure out what to eat, when to eat and out much you can eat. another member described the early days as being terrifying, as our bodies and our brains are... [ more ]
Manoj Jain Thanks for your response. @New577 did you have more solid stool or the frequency reduced when you had a leakage issue? I don’t have any pain or fever as such after 7 days of take down but from last 3 days (since I was advised to start soft diet), the frequency has been very less, hardly 1-2 solid BM which gives a lot of irritation and burning sensation. I’m keeping myself fully hydrated throughout the day so hoping things will fall in place soon. [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Keto diet
H happytimes
Fredz Hey! Were you able to eat a moderate protein/high fat keto diet with a jpouch? My conern is that too much fat will cause loose stools. I knew it adjusts for normal people, but was unsure if it did for us with a jpouch. But you were able to do that without loose stools? Thanks! [ more ]
skn69 Hydration is a very individual thing...it also depends , I think, on the age of your pouch and if you have pouchitis often. I put pay to poucitis about 25yrs ago so I dehydrate less. I also rarely over-hydrate because I have low blood pressure and over-hydrating can be dangerous in that case...it washes out too many mineral salts from your bloodstream...and your BP could bottom out. So I drink what my body asks for and no more. I have a large class of water, 1 of orange or tangerine juice... [ more ]
Molina Recently joined this site, and am loving all the information! Wish I joined sooner. UC, 2008 J-pouch, 2013? (I block it out, I don't know why) [ more ]
See all 28 replies...
J-Pouch ForumsGeneral Discussion
Do I need to worry about gallstones and kidney stones?
F Fredz
Scott F Individual factors matter a lot, and oxalate metabolism is complicated, but basic chemistry has the last word. Lots of people think they are well hydrated but aren’t, and some are just unlucky. [ more ]
Fredz So comforting to hear! Thank you [ more ]
Fredz Thanks a lot, Scott! I appreciate you answering every question I have, you should be paid for your activity. Yeah, I read on the fb grouo that many people have problems with kidney stone and many of them stayed well hydrated. I assume oxalates and many other factors like genetics are at play as well? Must be a ton of kidney stones from people doing ramadan. [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Stool Color
D Derrick
New577 In the beginning, it freaked me out a little but now I pay little attention to it. the only thing I will add is that the darker the color the longer it has been in my pouch and less likely to cause butt burn. The lighter the color means it’s passing thru me quicker and therefore more acidic/caustic, and more butt burn. HTH [ more ]
Derrick Works for me! Yea it takes about 5-6 hours between bowel movements from eating to start passing or more. The consistency is great so glad that doesn’t determine much! [ more ]
Scott F I don’t think there’s much useful information in stool color from a J-pouch. It often looks rather like the food we’ve eaten, and even when it doesn’t it’s generally not worth your attention. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Need new GI Chicago area
clz81clz81
samwold I see a colorectal surgeon named Scott Strong with Northwestern Medicine downtown. He is fantastic! [ more ]
Mary O I liked Laura Yun MD at Northwestern. I moved out of the area last year, but if I were still in Chicago, I'd still be seeing her. I do not have chronic pouchitis but have a myriad of other issues. She was very helpful. [ more ]
Nicholas I’m with Dr. Hanauer at Northwestern. He was originally at UC, but when he moved to NW, I followed him there. I also have a j pouch with chronic pouchitis. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
IBD Podcast
R R227
R227 Hi Wendy - thank you, I'd be very grateful to have you share your story. I'll send you a private message. Richard [ more ]
Sara Marie ❤️
Wenwen Hey there! I may be interested.. diagnosed in 2006, after being misdiagnosed for four months.. total colectomy in august 2006, after trying mass doses of prednisone, cyclosporine, and remicade, which failed. Post op infection.. in hospital for two months after colectomy. Take down and j-pouch surgery February 2007. Overall has been good for the most part. However, have had numerous flare ups.. blockages.. etc. which have increased over the years.. just recently found out from last scope that... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Fatty Liver Disease?
samwoldsamwold
CTBarrister I have been told I have fatty liver, and you have identified the treatment for it: eating the proper diet and getting proper exercise. If changes with your diet are messing up your GI, see a registered dietician for advice on a proper diet strategy. In my case because I battle chronic inflammation in the J Pouch inlet and lower neoterminal ileum, I eat a low carb low sugar diet, but such diets often compensate by not being as low as needed in fats which will accumulate in your liver. A... [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Best Jpouch surgeon doctor in New Jersey
P positive13
BK 123 I had mine done by Dr. Suraj Alva, who is part of Bertram Chinn's practice (based out of Edison NJ and Overlook Medical Center in Madison NJ. Dr. Alva is very attentive and thoroughly listens and responds to concerns. He is also very comforting. https://findmyamgdoctor.atlant...er/Suraj+Alva/641787 https://findadoctor.atlantiche...rtram+T+Chinn/639239 [ more ]
Len78 Rolando rolendelli in North New Jersey Morristown 435 South Street He gave me a jpouch back in 2001 when he practiced at temple hospital in North Philly [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Mri enterography
C Cb2009
Cb2009 Thank you again. I was just doing my own research on causes of treatment refractory Cuffitis and fistulas and abscesses came up so I just wondered if that can be ruled out with this test too. Looks like in any case I’ll probably be trying biologics next because I haven’t responded to anything else. [ more ]
CTBarrister Fistulas are commonly associated with Crohn's and yes, the MRI Enterography should have visualized any. [ more ]
Cb2009 Thank you CT. Ok so it didn’t show anything. Sounds like then they were probably looking for crohns or crohns like inflammation. Any idea if it would have shown if I have any abscesses or fistula near the pouch or cuff? Is that ruled out with this test? [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Calcium Supplements/Osteopenia
M msh98991
msh98991 Good advice! Thx, Scott! [ more ]
Scott F It’s usually best to change one thing at a time, if you can, to best understand what caused the results you see. Nevertheless, plenty of supplements can cause diarrhea, so it might not be just one thing. I’d also suggest you take dietary supplements with food, as that sometimes improves absorption and decreases side effects. [ more ]
msh98991 Thanks for the suggestion! [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Gastroparesis
A Alaine
Peti I was just diagnosed with gastricparesis my physician suggest waiting 6 months to see if it goes away before treating it. I have constant Neusea , no appetite . he said he doesn’t want to treat with meds due to side affects to pouch but suggested Botox injection ….. I am limited on info due to just being diagnosed [ more ]
Alaine Thank you for all the help, I’m getting my gastric pacemaker next week. [ more ]
Bubba1028 My mom has it and has a pump. Super rare and she’s had no problems once she had the thing put in. She says she’ll eventually have to have the batteries changed or something. Once in a great while the timing will get messed up and she’ll have to get it reconfigured - or whatever you call it- so it stimulates her stomach to empty regularly. She knows it’s messed up bc she feels so sick to her stomach and can’t keep anything down. The draw back to getting it done is that she can never throw up... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Recurrent Nausea and Vomiting
ktakta
kta From an observer perspective, it is interesting that migraines can cause so many symptoms. I had an amazing student a few years back that suddenly got debilitating migraines. She could not even walk. The family finally went to Boston to participate in a trial. She was accepted and eventually went to her prom on her own to feet. I do not know many details, but am so glad she regained function. Thanks for all the replies. [ more ]
roseviolet Migraines affect the whole body rather than just the head. Body aches, body weakness, sleep disturbances, nausea, vomiting, gut disruption, sound & vision sensitivity, lack of energy, anxiety etc. can all be part of migraine. [ more ]
Maverick Plus I'm sorry you're going through this. I have migraines, and the first time I had one, I vomited, but not anymore. It's interesting that there is such a thing as migraine of the gut. If it was a quick motility issue, you would feel nausea all the time, not intermittently. So I'm backing away from the motility hypothesis. I hope your new treatment plan works for you. [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Evening pain.... normal?
JW Joe's wife
Joe's wife I looked up the exercises on line, it's says walking is also good for this issue and he does a lot of that... thanks for the info.... [ more ]
New577 Pelvic Floor Therapy is a fantastic idea. My GI offered it to me 6 months post takedown. Unfortunately it was next to impossible to get an appointment with a therapist. There was like a 6 month waiting list. By the time my name came to the top of the queue, my pelvic floor had recovered sufficiently that I felt I no longer needed it. [ more ]
Sara Marie ❤️
See all 8 replies...
J-Pouch ForumsGeneral Discussion
MSM
jrwsjrws
Sara Marie I just looked MSM. It looks like it can be used topically, too, to help the joints in a form called DMSO. Curious if anyone in this group has tried that and what were the results? [ more ]
Sara Marie I'm commenting to hear what people have to say. I have not tried MSM myself, and I will go look it up now. Seems like the best thing I have been able to do for joint pain has been to stabilize the joint with exercise. For my elbows, lifting weights was tried but didn't work. I have found that sun salutations done with precise alignment and muscle activation in mind have helped the elbows and standing poses have helped the knees. I tried sun salutations (& other postures) without proper... [ more ]
Sara Marie ❤️
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Lung disease related to IBD
L lrdo
lrdo Thanks Joanne. Will investigate. [ more ]
Joanne Leon, I do have a pulmonologist and I'm doing ok. Not on any treatment, however, I do think, based on my family history, that there is a genetic link in lung disease; my dad, his sister, me, my sister and brother. My dad, brother, daughter, and both sons have IBD. My daughter also has chronic bronchitis and UC. I supposed it also could be related to, or exacerbated by, the fact that we all lived in large metropolitan areas, too. There is a study out there I read several years ago about the... [ more ]
lrdo Joanne, thanks for your reply. I have talked to Shen about this issue. Not much data as far as possible treatment strategies . Would love to hear if you have any specific information. Leon [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Fiber Supplement
C capper
Still Standing I agree with all the good advise above. Whichever supplement you try start with a small dose and work up. I began with half a teaspoon of psyllium with a gas prevention supplement. If you start with a large dose, you may feel miserable with the excess gas. Starting slow and letting your body adjust will be a lot easier in the long run. [ more ]
Ryan138 I take a 50/50 mix like Scott but take 1 teaspoon before I eat anything like Sara Marie. The fiber did not decrease my BM’s but made them more tolerable [ more ]
Sara Marie I like plain, powdered organic psyllium (main ingredient in metamucil). I take 1tsp with 6-8 oz water before each meal. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Cmv/ cytomegalovirus infection
C Cb2009
Scott F CMV will go dormant for periods of time, but it can recur when it pleases. Antiviral medications can be used for immune-compromised folks, but most people just wait out an active period and it goes dormant, just like cold sores disappear. It might be useful to live as healthy a lifestyle as you can during an active period (and whenever else you can stand it), but this isn’t really evidence-based. Perhaps you could try the antiviral and see if it helps. [ more ]
Cb2009 Thank you new. I’m sorry you are having issues too. Unfortunately I tried canasa for 3 months and it didn’t help at all. Recently I was on Uceris and it was helping (at least symptoms hadn’t had any tests done). But now I was told I have to stop that due to the cmv infection. So now I’m without any meds while I wait to see what they are going to do about the infection. scott- do you have any idea what the usual treatment is and how effective it is? My surgeon and gi are disagreeing on how to... [ more ]
Scott F Hopefully you’ll feel much better when the CMV infection gets managed. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
How long did it take after takedown to be able to walk for an hour
JanWillemJanWillem
JanWillem Time for some optimism 5 weeks on the clock now and 1 round per day (1200 steps) 50% no accident went up to 4 rounds (6000 steps) 80% no accident. just doing small walks multiple times a day is great training and helps keeping my sanity [ more ]
tf I agree with the comments. It is your own journey to the new normal but stick with us because we lived it & this site is a tremendous help. Be patient because it takes time. Your diet is key right now & the cream & bidet will b your new best friends. God Bless! [ more ]
BK 123 Just past two years from takedown and feeling "normal" now. Granted, I have chronic pouchitis and after trial and error I found a biologic that works for me. Last scope (April 2023) said there was little to no inflammation in the pouch itself, more so in the cuff which is expected with Crohn's of the pouch. One thing that really helped me was installing a bidet from Tushy. I sprang for the version with warm water hook ups ($100). Best money I've spent to date and extremely easy to install! [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
8 year vegetarian anniversary coming up! ANy questions you want me to answer????
FM Former Member
New577 Lauren, you are 100% correct. My GI reminds me every time I see him that the benefits of a cuff outweighs the risks. So, now I live with chronic colitis of the cuff and daily Canasa for the rest of my life to prevent…. inflammation…dysplasia….cancer Back to where I started from….. Sometimes, I feel like a hamster on a wheel ☹️ [ more ]
Former Member Rectal cuff gives us better control to hold our poop. I think its dumb they left a rectal cuff but that is how they do it unfortunately. [ more ]
Sara Marie ❤️
See all 13 replies...
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 ]
See all 47 replies...
J-Pouch ForumsGeneral Discussion
Sugar Substitutes
JW Joe's wife
BK 123 ❤️
lclassen So, my experience... I was on a diet that used meal replacement goods, all of which had sucralose, xyletol or other sugar alcohol. I had horrible results with my pouch, and my GI forced an abrupt cut-off of ALL sugar alcohols. I can only use aspertame per Dr's orders. Be careful because sugar alcohols are present in A LOT of foods. Even Monk Fruit sweetener and Stevia sweeteners are often combined with a sugar alcohol (i.e. Xylitol, anything ending with "ol"). Just my 2 cents worth. [ more ]
Joe's wife Thanks for the info, I will look into that... [ more ]
See all 23 replies...
J-Pouch ForumsGeneral Discussion
j-pouch vs Ostomy
CR Cindy R
Michael 59 yo. Pouch 37 yrs this fall. Turning 60 next month. Always believed in eating & drinking everything. Lived in the US and Asia. Used to eat street food in Bangkok and Jakarta. Yep, I might have paid for it with more BMs and/or BB, but it's my life and I want to live it. I dislike the, 'everyone is a different mantra' ... probably true but feels like an escape valve nonetheless. To me, it's not about how well your body might handle the surgery but how you choose to live and basically... [ more ]
Kangaroo 2 Imodium before bed. Over 6 years. My output has DECREASED with time. I was 38 when I got j pouch and I'm 44 now. [ more ]
Sara Marie ❤️
See all 35 replies...
J-Pouch ForumsGeneral Discussion
Looking for Dr.
Jeff807Jeff807
Jeff807 That’s a good idea New577, I didn’t think of that, I’ll try that route too, thanks [ more ]
New577 My surgeon did his fellowship at Orlando regional medical center. He learned the jpouch surgery techniques there. perhaps a call to their GI department will land you a referral to someone competent. let us know, I am thinking of relocating to that area. [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Considering pouch redo vs permanent ileostomy
S seanbo1001
seanbo1001 Thank you so much for your advice once again Scott. Unfortunately there are a few issues with attempting that. First, I have a rectocele where stool is getting trapped. Second I have a particularly long cuff which they did with the less common s-pouch way back in the early 80s. And third the cuff is so inflamed I can't tolerate anything going up there. Thanks again for trying to help. Sean [ more ]
Scott F Have you tried emptying your pouch using a bulb syringe and an appropriate catheter? That could get you some relief in the meantime, and perhaps reduce the urgency. [ more ]
seanbo1001 Thank you so much for your input guys. My situation with a blocked defecation is so severe I need to do something rather quickly. I have found an excellent surgeon at UCSD in San Diego named Samuel eisenstein who will do the surgery. I'm reading nothing but excellent reviews about him. And he has done lots of these surgeries. Also I am not afraid to go back to an ileostomy if things don't work out well enough. [ more ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
Number of Daily BMs
C capper
douglitke https://www.j-pouch.org/topic/...4#709807564936171224 Look on Amazon. They have lots of different ones. Suggest one easy to clean https://www.amazon.com/dp/B008...%2Bbidet%2B&th=1 [ more ]
Shellie I’ve had my pouch for 33 years and don’t take any medication for it at all ( I take Cymbalta for joint pain from Avascular Necrosis and arthritis but nothing else related to UC or J-Pouch)….I probably go 8-10 times a day but have complete control and can hold it for long periods of time if I can’t get to a bathroom. I agree with bidet being so helpful!!! Didn’t know there were travel bidets…where do you find those? [ more ]
douglitke I was promised 6-8 times per day. I have never been under 10, but recently have been going to a pouchitis specialist. She believes she can get me down to 8 per day, once she has my inflammation under control. She has me down to 10/day, which is heaven compared to 15/day when I first started going to her. Now if I could just sleep through the night.......... [ more ]
See all 15 replies...
J-Pouch ForumsGeneral Discussion
Sweet smell to stool
roxzroxz
Sara Marie Oh I also avoid wheat and dairy because I found them to be inflammatory. Everyone is different as far as what works for them, and it feels like we all have to experiment about what works for ourselves. I have gotten some great ideas for things to try off this site! [ more ]
roxz Thanks for all your great advice! [ more ]
Sara Marie I have never had full blown pouchitis, though I do have inflammation in that area. The things I have noticed that have kept my pouch the happiest are: not eating sugar or drinking alcohol, sticking with cooked veggies for the most part, taking powdered psyllium husk (1 teaspoon) mixed with water before each meal, regular and varied use of probiotics (in different forms, different brands, etc., including Visbiome/VSL#3, yogurt, other fermented items), oregano oil capsules 2x a day when there... [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Success with Ileostomy. Jpouch?
Danno87Danno87
Maverick Plus I had a 1-step surgery in 1999. No ostomy. Took me 2 years to get to a "new normal". It won't take you that long because you've already had your colon removed. It takes a while to learn what your issues will be. I used to have leaks at night, but taking 2 generic Gas-x pills every night stopped that problem. Occasionally take generic immodium if I am going to be out of the house for a long time. Many on this forum take immodium regularly. For me, having a j-pouch is relatively easy (except... [ more ]
van My J Pouch and I have been on many adventures, however I wont lie and tell you it is not without it's issues :/. I don't think any J Poucher life is without afew bumps in the road. But you just try and life your best life . [ more ]
Kerrymareee ❤️
See all 23 replies...

Join Us!

Founder, Creative Director & Web Master

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.

Forum moderator and advisor
Jan Dollar R.N.

 

 

 

 

General Disclaimer

 

This ileoanal web site is designed for educational purposes only and is not engaged in rendering medical advice or professional services. The information provided through this ileoanal web site should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you have or suspect you may have a health problem, you should consult your health care provider.


Materials presented on these pages are copyrighted by William Johnson and Linda B Hurd. Except as superseded in individual documents found here, these materials may not be sold or redistributed for profit in any way without express (not email) written permission of the authors. This includes, but is not limited to, translations into foreign languages, mass archival as on a CD-ROM and inclusion in commercially published compilations (books).

Confidentiality

Confidentiality of data relating to individual patients and visitors to the J-Pouch Group Web site, including their identity, is respected by this Web site. The J-Pouch Group Web site owners undertake to honor or exceed the legal requirements of medical/health information privacy that apply in the country and state where the Web site and mirror sites are located.

 

CCFA

The Crohn's & Colitis Foundation of America,
Philadelphia, Delaware Valley chapter, is located at
521 Bustleton Pike, Feasterville, PA, 19053.
Tel: 215-396-9100


National CCFA headquarters are at,
396 Park Avenue South, 17th floor
New York, New York 10016-8804
Tel: 212-685-3440    800-343-3637

 

Join Now

Already a member? Sign In

Online Now

  • Scott F
  • Trojan
Copyright © 2019 The J-Pouch Group. All rights reserved.

Membership Required

We're sorry. You must be signed in to continue. Sign In or Register
×
Are you sure you want to remove from your Block List?
×
Loading...
×
When you block a person, they can no longer invite you to a private message or post to your profile wall. Replies and comments they make will be collapsed/hidden by default. Finally, you'll never receive email notifications about content they create or likes they designate for your content.
Note: if you proceed, you will no longer be following .
×
Link copied to your clipboard.
×