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J-Pouch ForumsGeneral Discussion
Recommend a Gastro in Calgary?
S 1993SPouch
Former Member You are welcome I never had a problem with my pouch either but I still have to get checked every 3 years. Remember this: You cannot always feel a problem- sometimes when you feel a problem, it is often too late. You cannot always feel inflammation, cancer, and polyps. Always get checked every 1-3 years, no matter what. [ more ]
1993SPouch Thanks Lauren. I haven't seen one because I haven't had an issue! If it ain't broke, no need to fix it. At least that's how universal health care works [ more ]
Former Member 18 years?!?!! I really hope you find one soon! I am not sure what the rules are regarding where to get referrals from in Canada but I would just search one on Google and see which one has the most positive reviews- that is what I always do anyway. Or maybe your primary doctor can refer you to a good one, that is pretty common nowadays. Or maybe you can see your surgeon? A lot of people tend to do that too. Hope everything works out [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Update* Something isn't right, don't know what. Need advice.
M MS
1993SPouch Thanks for updating me and I'm sorry to hear it hasn't gotten better for you. You're too young to have to accept this compromised lifestyle! [ more ]
Scott F It probably isn’t pouchitis, but it could be. After two years of this I’d sure want to try something less obvious, at least if the risk is low, since the more obvious stuff hasn’t solved the problem. [ more ]
MS They tell me it's not pouchitis. [ more ]
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J-Pouch ForumsGeneral Discussion
time-release medications
Tori R2Tori R2
Former Member Tori R2 says " is coming through my system ‘intact.’" If the pill is "intact", obviously the coating hasn't dissolved. "therefore, enteric coatings resist breakdown of medication before it reaches the small intestine" This merely says the coating will pass the stomach, but it does not say it will dissolve (fully or partially) in the small intestine. Obviously, as in the case of Tori R2, the coating did not dissolve. I once saw a whole coated mesalamine pill pass through my system intact... [ more ]
Former Member An enteric coating is a barrier that controls the location of oral medication in the digestive system where it is absorbed . The word “ enteric ” indicates small intestine; therefore enteric coatings prevent release of medication before it reaches the small intestine. An enteric coating , also known as gastro-resistant coating is a barrier applied to oral medication that controls the location in the digestive tract where it is absorbed . The term “ enteric ” refers to the small intestine;... [ more ]
Former Member I apologize for giving you the wrong advice regarding absorption, I never knew about absorption being reduced in us when it comes to time release medications. I wish doctors were more educated about things like that and in letting us know. We definitely do not need to be taking time release or extended release medications. I go 13-20x a day so I would extremely be in trouble taking that lol. [ more ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
Who really loves their J-pouch?
RustedFoxRustedFox
Former Member 4-6 times??? Wow awesome! I go 13-20x a day, that is my norm lol. [ more ]
GB2014 I had some notifications that this thread has come back to life again so I thought I'd provide an update on my situation. I haven't been around this forum for years now for the classic reason that everything has been going very well with me and I've been getting on with my life. I go 4-6 times a day depending on what I eat. I have ZERO issues with my J-Pouch, I can even eat peanuts and tikka masalas now. I have two golden rules: 1) Don't snack between meals and when you do eat, try to eat... [ more ]
Former Member ❤️
See all 61 replies...
J-Pouch ForumsGeneral Discussion
Great news! My takedown surgery is tuesday. What should I bring?
J Jaydog
Jan Dollar Lauren, yes I had pouchitis. Chronic pouchitis actually. However, this was more than a decade post j-pouch surgery and had zero to do with what I did in those early months, and I never actively held back on pouch empyting, except to avoid soiling myself. Maybe what you are referring to is bacterial overgrowth which can result from pouch stasis, but that is more of an issue of not being able to empty well, not something you actively contribute to. If your doctor told you to never hold back on... [ more ]
Scott F Fair enough - it’s also important to listen to your body. That’s the best way to tell if anyone’s recommendation (whether doctor or forum participant) is right for you. [ more ]
Former Member ❤️
See all 33 replies...
J-Pouch ForumsGeneral Discussion
How long did it take for your bowels to wake up after takedown surgery?
J Jaydog
Former Member 3 days. I was not given anything other than clear liquids and a ton of IV fluids until I passed gas. Actually on day 2 I passed a little gas, but they told me it has to be a “Prrrrrrrrrrrrrrrrt” like gas. That was funny. They did not give me food until I passed a long gas. [ more ]
Kmiller I had surgery on a Wednesday, went home Thursday so didn't take long. I was sick over that weekend though, throwing up and very nauseous. I've had that problem every surgery though so I think for me it may have been anesthesia? Hopefully you're feeling good and have a problem free experience! [ more ]
AWalkingTestimony I had the same issue as well after both surgeries. On the first surgery for the removal it took almost 7 days for everything to start moving.. I had to get the NG tube also after I started throwing up..After my second surgery for the take down it happened again it lasted for around 7 days and got the good ole NG tube again..Its a waiting game when its ready to wake up it will..The nurses and doctors told me walking helps as well which I did until things started moving. [ more ]
See all 10 replies...
J-Pouch ForumsGeneral Discussion
Alcohol
JD Jeff D
Former Member Its not worth it because of our delicate system. Delicate things need to be treated as such, delicately. [ more ]
rachelraven For me, dry red wines are my friend. Beer makes me feel blergh (but draught beer used to clear me out; now I just feel totally bloated). And I *can* drink liquor, but I'm not a fan of many, and mixed drinks have too much other stuff in them for my taste. [ more ]
CTBarrister Similarly I have problems with red wine, but not many other liquors. I have never enjoyed the taste of beers. I prefer white wines, and spirits. My favorite alcoholic beverage is Evan Williams Egg Nog which is only sold in November and December. It has bourbon, brandy and rum in it and is 15% alcohol/30 proof. Made with real milk and fresh eggs. For shots of spirits I like Fireball. However I do not drink much, just on special occasions and holidays. [ more ]
See all 16 replies...
J-Pouch ForumsGeneral Discussion
Drinking alcohol; not a great idea so far
VeggiescottVeggiescott
Former Member I would not recommend us drinking at all. Since we have a delicate system, that is not a good idea. We as IBD patients already have a compromised system, alcohol can worsen that. Alcohol is never a good idea in our situation, even in IBD people that have their colon. [ more ]
Veggiescott Thank you all for your comments; I guess I'll just have to be patient [ more ]
rlh9606 VEGGIESCOTT hang in there!!!! I took a solid year for my body to completely adjust to my jpouch. I am able to drink whatever I want now (beer, wine,wiskey, etc), but had problems as you said for the first few months after surgery. My first week after surgery I kept crapping the bed and thought I had made a huge mistake!!! I just learned I have a new normal for my life, it means I poop 4-6 times a day, but compared to the UC I had.......I just think if I had been born 50 years ago I would... [ more ]
See all 13 replies...
J-Pouch ForumsGeneral Discussion
Kidney disease stage 3+, low electrolytes
M maryloar
Former Member Are you doing better now??? [ more ]
wallythedog ❤️
skn69 I am so sorry Mary, My uncle had one of the 1st j pouches, due to FAP, done at the Mayo back in the 80's. In the late 90's was diagnosed with kidney disease and by 2000 was down to 30% function. They gave him 6 months. He burried 3 nephrologists...litterally...he passed at age 86 last year from diabetes related infection...over 16yrs after the diagnosis. His kidneys were still going strong. I was constantly after him to drink more fluids and water...he would drink highly diluted juices,... [ more ]
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J-Pouch ForumsGeneral Discussion
has your eating habits changed after having a j-pouch
kiwikiwi
kiwi yes which is why I eat fruits and veges, salads etc [ more ]
CTBarrister Soft digestible carbs may seem like fine meals short term, but you have to think long term pouch health. Having lots of carbs in your diet on the theory that those are comfortable meals to "go to" is a faulty long term strategy as you are potentially feeding a long term SIBO situation, especially if there is an inadequate fiber intake. In fact that's the usual predictable SIBO situation- too much carbs and sugars and not enough fiber spells SIBO City. [ more ]
Mark234 ❤️
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J-Pouch ForumsGeneral Discussion
Getting through the night
Rob McLorinanRob McLorinan
Former Member ❤️
Former Member Around 5 or more I believe. I am always tired since I go to the bathroom 13-20X a day, so I am pretty active all throughout the day. You could try loperamide but it clogs me up to much; it might work for you. I just accept everything for what it is. I am just grateful my pouch gave me what I need which is PEACE [ more ]
Disneynut Sorry...I take Loperamide, not Lomotil. I'm glad you are seeing some improvement! [ more ]
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J-Pouch ForumsGeneral Discussion
Hemmroids
HE herb ear
Former Member Sorry about your hemorrhoid! Are you having any pain??? [ more ]
Scott F It’s critical to avoid straining with hemorrhoids. This enables them to heal, and helps prevent forming new ones. Keeping the stool soft (with psyllium, water consumption, etc.) makes it easier to avoid straining. [ more ]
Kangaroo I suffered from hemorrhoids soon after takedown. After a year of suffering, I finally got them under control. Ilex paste is great to alleviate itching and works better for me than any hemorrhoid specific ointment. There are special bath salts by Better Bath, Better Body that are meant to alleviate hemorrhoid discomfort. I just put some in my bath water. The third thing that helps is to use a barrier cream every time you empty your pouch. I use wipes to make sure I'm extra clean. I hope you... [ more ]
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J-Pouch ForumsGeneral Discussion
Fluke or Real Deal?
Y ytcrockpot
Disneynut I've read it's good for leaky gut, which I had never heard of. I'm thinking that's why it's helping. I hope you have a great Thanksgiving!! [ more ]
ytcrockpot Wow, that sounds very promising. I’m happy you found something that is not a prescription meds to work for you. I’ve been wanting to try collagen for help with my joints but if it also helps the pouch it be a win win. Thanks for the info, Have a wonderful Holiday! [ more ]
Disneynut Vital Proteins. I get it from Costco (but it's available lots of place--Costco has a good price). I didn't have to get up in the middle of the night AGAIN last night! I'm not sure I've ever had this many nights in a row without having to get up. Nothing else has changed so I have to believe the powder is helping. [ more ]
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J-Pouch ForumsGeneral Discussion
Humira and Covid
M MetsFan
Jan Dollar So far, all sources recommend continuing your regular IBD treatment. The basic notion is that being in remission is far better for you than risking relapse along with potential COVID-19 infection. https://www.crohnscolitisfound...ofessional-resources Also, there are studies underway for Humira as an actual treatment for COVID-19 to lessen disease severity. https://www.bmj.com/content/371/bmj.m3847 Jan [ more ]
Former Member Definitely keep taking your meds! Try to stay in as much as possible if you can. And when you leave the house use hand sanitizer, practice 6 feet, and wear a mask. When I am at the gas pump and finish filling up, I immediately use hand sanitizer. [ more ]
CTBarrister At most gas stations, you pump gas outside and are not within 10 feet of anyone else so I don't understand why this should be a specific concern, as long as you do not go inside. [ more ]
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J-Pouch ForumsGeneral Discussion
Muscle relaxers
M meghspd
JHendrix I take a muscle relaxant (Baclofen) nightly which lists constipation as one of its side effects. I haven't noticed any particular bowel effect. I take a very low dose though. Jan, I'm curious what muscle relaxant you are taking? [ more ]
Kangaroo I took something with a name like Roboxin. It helped with kidney stone pain. [ more ]
Jan Dollar I have been taking a muscle relaxer at bedtime for years for my arthritis and spinal stenosis symptoms. No problems at all. Jan [ more ]
See all 10 replies...
J-Pouch ForumsGeneral Discussion
SIBO and gallstones
H Hellbuff
Jan Dollar Hellbuff, If you have pouchitis or SIBO the treatment would be the same, a course of antibiotics. Only a pouch scope would distinguish between the two, since the symptoms are pretty much the same. The gallstone could be an incidental finding and unless you also have an inflamed gallbladder (cholecystitis) or and obstructed bile duct, there would not be any likely surgery needed. Possible, just not likely. I have had a solitary gallstone for decades and also thought my gallbladder was toast. [ more ]
Former Member You are welcome And not at all, sorry lol. [ more ]
Hellbuff Thanks Lauren, do you know why pouchies often have gallbladder problems? Xx [ more ]
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J-Pouch ForumsGeneral Discussion
Just wanted to give everyone a update about my fundraiser for CCFA
FM Former Member
Former Member Thanks Kangaroo! I never thought I would have raised that much money! My message is never give up [ more ]
Kangaroo Wonderful news about all that money you raised! [ more ]
Jan Dollar I removed your email from your post. Everyone, please do not post your personal email (or other personal info) on the public forums. This is for your safety. Please use private messaging to contact members. There are malicious actors out there who harvest this information to send you spam or computer viruses. Congratulations on your charity work! Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Breast Cancer
J jmw
Former Member Wow! Sorry to hear that! I hope everything goes very well for you when you start Chemo and stay safe! Please keep up us updated Sending light your way [ more ]
CTBarrister Yeah, I am doing well Jeanne! My surgery to remove the cancer by taking out the thyroid and lymph nodes was in July 2015. I started Remicade November 2015. Thyroid cancer recurrence is pretty easy to monitor via blood tests, because thyroid cells produce a protein that gets picked up on blood tests in the event of recurrence or spread. Between blood tests and scans, I have been cancer free since. I was stage 3 because when they did surgery they found a metastasis into the 2 lymph nodes near... [ more ]
jmw Thank you for your response. I hope you are doing well now. The oncologist recommends that I have an Entyvio infusion just prior to starting chemo. I have two separate rounds of chemo scheduled, and will hopefully be able to have another infusion of Entyvio in between. I guess it all depends on how well I tolerate the chemo. Again, thank you for your response! [ more ]
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J-Pouch ForumsGeneral Discussion
Cipro & Urinating
Paul HPaul H
Former Member Maybe you should voice your concerns with a doctor. I think they might be better. [ more ]
Scott F Paul, no one really knows if your very short courses of antibiotic are wise or unwise. If pouchitis were a conventional infection then very short courses would tend to lead to bacterial resistance, making the antibiotic less effective in the future. But pouchitis isn’t a conventional infection, so it’s possible that the reduced side effects (during a very short course) are worth the trade-off. You are making it up though - there’s no data to support your approach, whereas there’s a fair... [ more ]
Former Member ❤️
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J-Pouch ForumsGeneral Discussion
My Journey
PG Pauly gee
Former Member Totally understand that! [ more ]
Pauly gee @Lauren Of Emerald City yes before my operation I was taking 9 a day . But being of work sick an din the house all day I have not had any in weeks , this is leading to increased toilet trips obviously . [ more ]
Former Member ❤️
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J-Pouch ForumsGeneral Discussion
Any Vegans Out There?
samantha1803samantha1803
Former Member ❤️
Former Member Vegetarian for 5 years, were here [ more ]
skn69 Not to get onto the 'is it good for me or not' question...here are some tricks that they use here to control the gas that is directly linked to beans and peas etc. My adopted mother and in-laws taught me to soak my dried chick peas and beans in a large volumn of water (about 5xs the quantity of beans) and add a couple of tablespoonfuls of baking soda to it...Stirr and let sit over night...the next day rince very well before cooking. That is usually the best way to avoid the gas related to... [ more ]
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J-Pouch ForumsGeneral Discussion
Vegan and a J-Pouch?
temotytemoty
Former Member ❤️
Former Member I can honestly say being a vegetarian for over 5 years with my pouchy has helped for the better! Vegetarian diets are loaded with prebiotics and probiotics so that is God Given to us [ more ]
Spooky I am not vegan but I have followed a mainly vegetarian diet for several years, particularly when I discovered - after much trial and error - that red meat, in particular beef, was one of the hardest foods for my system to digest. I still eat fish occasionally, but it seems that eliminating red meat and gradually phasing out chicken and poultry has helped my pouch function. As others have mentioned, hummus, lentils and tofu are very popular options. I find Beano helps with digestion. More... [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Plant based diet/ vegan diet and j pouch?!?
S sally85
Sara14 ❤️
Former Member Vegetarian for over 5 years with my pouchy [ more ]
temoty like others said, I've tried several times to go vegan, but I seem to get a little dizzy without enough calories. I end up eating meat again because it seems to stabilize me. Saying that, I still eat mostly vegan with 1-2 green smoothies per day, which I've been drinking for years. I've done some health coaching and one thing to consider is chewing enough. When eating, break down your fruits, nuts, veggies plenty by chewing 20-30 times per bite. You get more nutrients while digestion begins... [ more ]
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J-Pouch ForumsGeneral Discussion
Recovery from Jpouch removal
SolomonSealSolomonSeal
SolomonSeal I know this is a very old post but sometimes I go back to make sure the narrative is completed. What ended up being the case was that the hole in the "fascial" layer for my stoma was not wide enough, so I basically left my jpouch removal surgery with a partial obstruction. An MRI showed how narrow it was and this probably all explained my tough post-op. It was not normal, in fact the tissue was inflamed from being so tight. I went back for re-operation about 2-3 months after the jpouch... [ more ]
SolomonSeal Still doing low residue. I'll hear from my surgeon soon. [ more ]
Mysticobra I have mentioned this in other posts but now that my colon and my pouch are gone I feel completely relaxed in the whole area. No stress goes there. It's where it accumulated for me. I have never felt this way in my life. I would suppose it's the way normal is. I don't know. Richard. [ more ]
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J-Pouch ForumsGeneral Discussion
Recommendation for Denver GI doc
Trout SlayerTrout Slayer
adam427 I see Dr Matthew Nichols at south Denver GI. He is very good. I’ve been seeing him for more than 10 years. [ more ]
Boxermama I see Dr Frank Scott at UC Health in Aurora. He’s head of the Crohns and Colitis clinic there and the whole team is great. [ more ]
coloradoguy Dr Denault at Rocky Mountain Gastro in Thornton has been very helpful for me. Their nurse practitioners are great too. [ more ]
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J-Pouch ForumsGeneral Discussion
It's getting worse.
DavidReischDavidReisch
Former Member I love your sense of humor! Definitely sounds like pouchitis, I would talk to your doctor about possibly taking Remicade, Remicade has good results with J-pouchers usually. [ more ]
Former Member ❤️
Scott F David, this sounds a lot like untreated pouchitis. I don’t know what “this or that” your doctor has tried, but if you haven’t tried a course of Cipro or Flagyl then you may be struggling needlessly. Psyllium (Metamucil) can certainly bulk up your stool, and I’ve used it daily for 18 years. Not everyone likes the result, but many folks report some benefit. Opium Tincture is a pretty effective last resort. It’s not illegal in the US, but it’s very difficult to find a doctor willing to... [ more ]
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J-Pouch ForumsGeneral Discussion
Toilet paper
Y ytcrockpot
Former Member AMEN Bubba! I go 13-20X a day so I got your back!!! 9 Percenter Fam [ more ]
Former Member That is soo thoughtful of you to let me know and to care about the sewage I actually leave a trashcan with a grocery bag inside it by the toilet and I put my wipes in there after I finish wiping; I have been doing that for 6 years [ more ]
Former Member ❤️
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J-Pouch ForumsGeneral Discussion
New Diet & Feel Great- Hope it lasts
Y ytcrockpot
Former Member ❤️
Former Member I have been a vegetarian for 5 years with my pouchy and I definitely feel a difference with it! Makes everything feel positive! It has lots of probiotics and prebiotics in it so that is a bonus [ more ]
Winterberry YTCrockpot, wondering if, after a month of vegetarian / vegan diet, then the sudden four days of chicken was too fast, too much, for your system to re-adjust at once? Maybe try something easier to digest, such as fish in small amounts, slowly, every few days? Try fresh fish from the supermarket, not the breaded frozen kind, which can be yummy, but far too processed, mostly breading, and not really fish anymore, especially for your system right now. You could try making a smoothie using your ... [ more ]
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J-Pouch ForumsGeneral Discussion
COVID-19
Y ytcrockpot
Former Member ❤️
Former Member Very thoughtful of you to post that! Thanks! Its on the Crohn's and Colitis Foundation website too. I am glad to see it twice! Makes me feel safe twice! [ more ]
lclassen ❤️
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Anyone else have the Jpouch for over 30yrs?
Y ytcrockpot
Former Member ❤️
Former Member I am at year 6, I hope I get lucky like you guys [ more ]
Michael Hit 30 years this October. I've stayed away from immodium, lomotil, etc. and generally try to ride out any episodes that result in increased frequency. My philosphy has always been to eat & drink literally everything. Jalapenos on the chicken and rice street food? Check. Drinking tap water when I lived in Bangkok? Check. A couple of pints to go with those bar nuts? Double check. That said, I've had a major pouch rework due excise some narrowing and several bouts of pouchitis. Still, the... [ more ]
See all 7 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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