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J-Pouch ForumsGeneral Discussion
Lactose Free Ice Creams
CTBarristerCTBarrister
CTBarrister My father has been aggressively trying just about every lactose free and non dairy ice cream on the market and he decided on two that he really likes. The first is Ben and Jerry Creme Brulee Cookie Non-Dairy Ice Cream, made with Sunflower Milk: The second is Planet Oat's Blueberry Crumble which is made with Oat Milk: For those of you who were offended by my post about Rebel Ice Cream which is using a sugar substitute (albeit a natural one), both of the above products are using real sugar as... [ more ]
CTBarrister My father and I haven't had any issues with the Rebel Ice Cream. Ben and Jerry's Non Dairy Almond Milk Ice Cream uses good old fashioned sugar, so no such worries would exist. I like the taste of it, but the texture of Almond Milk Ice Cream is different. Lactose Free Cow's Milk ice cream is truer to the texture of other Cow's Milk ice creams. [ more ]
Scott F I stay the heck away from sugar alcohols, though they may work fine for you. “Erythritol side effects typically include digestive problems and diarrhea . It may also cause bloating, cramps, and gas. Additionally, erythritol and other sugar alcohols frequently result in more water in the intestines, causing diarrhea.” [ more ]
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J-Pouch ForumsGeneral Discussion
Oregano oil experiences
E Enterin
Enterin Thank you. I don’t think it causes, I kept taking two drops a day. I am interested in experiences and I was worried that it could be harmed. [ more ]
FelixGust Are you sure the wild oregano oil was the cauae of the diarrhea? The ebook only costs a dollar or two so if you want to know a lot more, Id suggest getting it. It is an interesting and easy read [ more ]
Enterin I used it for two days. I plan to continue. So two drops a day. I had diarrhea yesterday so I stopped (maybe from the olive oil I take with oregano). Thanks, any experience is welcome. [ more ]
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J-Pouch ForumsGeneral Discussion
Functionality of J-Pouch
Davids4527Davids4527
Drbev603 Wow Dave! My surgeon will not do surgery after my recent blockage for that very reason. He says the complications are always worse that the solution. With out the small bowel also absorption of nutrients will be difficult. I would get a 2nd opinion from surgeon who specialized in J-pouches in a large Med Center. There is more information out there. My prayers are with you! [ more ]
Davids4527 Thanks for the quick response. The reason behind the ask is that as a result of the small bowel blockage last year and subsequent resection of a small portion of the bowel, I developed two enterocutaneous fistula that are very low output and if they do not spontaneously close, will have another surgery/resection to remove that portion of the small bowel. It was suggested that I might end up with short bowel syndrome. From what I have read online, sbs is really a loosely defined term, but... [ more ]
Jan Dollar Short answer is yes. However, this changes when you have pouchitis or Crohn’s of the pouch. Also, over time it changes on the cellular level to absorb more water and less nutrients (becomes more like colonic mucosa). It is also important to note that the j-pouch uses only about a foot of small bowel, which is 15-20 feet in length. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
.
FM Former Member
Scott F Your symptoms could be from a variety of things, but one possibility is indeed that adhesions are narrowing your bowel in one or more locations, turning your digestive transit into an unpleasant adventure. It is much easier to persuade a surgeon to cut (“lyse”) adhesions when surgery is happening for other reasons (versus surgery just for lysis of adhesions). You absolutely should report your symptoms to your surgeon and ask if he can correct any potentially causative adhesions while he’s in... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Bloating and gas
MIKEEYMIKEEY
Brellis Oh okey! Do ypu suffer from adhesions today? And/or blockages? [ more ]
Drbev603 My MD group at OSU will NOT do surgery even with repeated full blockage. They said bc more adhesions form causing more complications and blockages! The adhesions continue to grow over time. My group used xray contrast media through my NG tube plus IV magnesium. Took xrays every few hours to follow movement. It took 4 full days to clear my blockage. Hospitalized for 5 days . [ more ]
Brellis Or could something like yoga/stretches move the intestines away from the adhesion? [ more ]
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J-Pouch ForumsGeneral Discussion
Are muscle relaxants safe to take with J-Pouch?
L Ladybug
Vickie No problem taking cyclobenzaprine ( Flexeril) occasionally when I hurt my neck/back. [ more ]
Mary O Ladybug - have you tried cranial physical therapy to help with the tightness? It does wonders. [ more ]
Ladybug Thank you Jan !! Yes I probably did, that makes sens. I really appreciated everybody's responses. I feel less anxious about taking Flexeril. I need it for the survival of my teeth and my jaw muscles 🤦🏼‍♀️😆. [ more ]
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J-Pouch ForumsGeneral Discussion
Wellbutrin XL vs SR
D DJJ2019
Vickie I was always told not to take anything that is sustained release, because our transit time is shorter than normal. Wellbutrin comes as immediate release, so you would have to take it more often. Both XL and SR are sustained release. I have taken Buspar for anxiety in the past - no side effects, but didn’t see much improvement. Have been Mirtazapine off and on for insomnia, appetite stimulation, (also works for depression) - works great, no problems with it. I am a pharmacist, so was careful... [ more ]
Drbev603 ❤️
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J-Pouch ForumsGeneral Discussion
Gaining Weight
ValenValen
Chook2 I've gained alot of weight.I went from 55kg up to 91kg .I drink alcohol to much that leads to overeating.I eat chicken breast cut up and coated and mixed with eggs,pork sausages in wholemeal bread,fish battered.chicken wholemeal sandwiches ,bananas.ham or chicken burgers.when I returned to work everyone said they were expecting a skinny sickly guy like I was not a big fat healthy looking guy.but I will still try to lose the weight. [ more ]
Pouch2021 I’m guessing most people have lost weight going into surgery if they have UC or even cancer but not necessarily if the indication is FAP. Though it’s only a guess. Also some have more of a buffer so losing 20-30 lbs while sick with a UC flare may not be such a big deal. I personally looked like a skeleton after that wt loss and still look too thin. After surgery I’m sure plenty have put on more weight than they would like ;-) Jaydog, I agree it’s all about calories in/calories out. I think... [ more ]
Chook2 Are there obese people with a jpouch?I'm classed as overweight but couldn't imagine eating all day and I cant bring myself to buy pizza or cheetos ,fizzy drinks anymore. [ more ]
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J-Pouch ForumsGeneral Discussion
Iron deficiency
M MaryL
Katydid I am also anemic with low iron so undergoing a series of infusions. First one was a drug that insurance refused for additional use so now have had 2 approved venofer infusions. After first infusion, had slight burning In one foot, joint ache then before returning home, noticed swelling in both feet. They said swelling is a little unusual. Possibly due to IV fluids. Went for second Venofer yesterday and no limb swelling but omg, When I got home, I experienced severe upper intestinal bloating... [ more ]
Very-Unique I have iron infusions about every 9 months. Have been having them since 1999. I get really low before they will give me one and it takes about 3 or 4 weeks before I notice the difference. Last one was 2 weeks ago and I had 10 vials (equal to 10 injections) in one session via IV infusion. This should keep me going until October/November. (The injections never helped me) [ more ]
clouseau I had to have iron infusions a couple of years ago, not bad at all, just bring good reading material. [ more ]
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J-Pouch ForumsGeneral Discussion
Should I be worried?
ValenValen
Aaron S. It's not abnormal. You're probably always going to have watery stools with sugar and carbs but if there's no associated pain or blood it's not harmful, just annoying. As others have said fiber supplements help. For me personally I've found a bowl of oatmeal in the morning helps cut down on watery stools throughout the day. [ more ]
Jan Dollar I forgot to mention: If you feel fine and you are not experiencing pain, butt burn, incontinence or other issues, do not worry about liquid stools. My stools have been mostly liquid for over 25 years. Eat cookies if you want to. Jan [ more ]
Jan Dollar Try going to the Dietary Guidelines page for info. https://www.j-pouch.org/pages/diet Like Scott said, you should be able to get fiber supplements in any country. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
How did you decide it was time for surgery?
Sara14Sara14
Aaron S. Prednisone was still working but my bone density was dropping after years of using it since I didn't respond to any other drug and would flare up immediately if I stopped taking steroids. I was also put in the hospital two years in a row with C-Diff. The complications of prednisone combined with the bouts of C-Diff and enormous risk of colon cancer prompted me to finally act. [ more ]
Sara14 Xeljanz put me into remission, so no surgery for now (knock on wood)! Thanks to everyone who gave me input here earlier this summer. It will be invaluable if the time for surgery ever comes. [ more ]
Former Member ❤️
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J-Pouch ForumsGeneral Discussion
COVID VACCINE SIDE EFFECTS ...ANYONE?
PouchomarxPouchomarx
Aaron S. This may seem like a dumb question but are you by any chance on metronidazole for pouchitis? When I had to take it regularly early on I developed peripheral neuropathy, pins and needles in my fingers and toes. [ more ]
Jan Dollar Gee, I really doubt that this is vaccine related because there is so much time since your vaccines. There can be delayed side effects, but they should have occurred within a few weeks of your last injection. Neurological symptoms are not common, but not out of the realm of possibilities. Just because you had a vaccine, it does not mean it would be a likely etiology. They can rule out some common causes with the blood tests, but often symptoms you describe wind up being idiopathic or related... [ more ]
CTBarrister You said you had both shots in April, were they 30 days apart? I had 3 Pfizer shots in March, April and booster in August and no side effects apart from a sore arm after second shot. Your symptoms may or may not be related to the vaccine, but those are not the kind of symptoms usually observed. Usually it's flu like symptoms for a day or two. Insofar as your symptoms sound neurological, any specific traumas to head or neck since April? Your cervical MRI doesn't sound too bad but I have read... [ more ]
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J-Pouch ForumsGeneral Discussion
Support Belt for Core Exercises
G Gom
Gom Thank you [ more ]
tf Hi, I was given a belt after my last Hernia surgery due to my Jpouch surgeries. It's just a white elastic belt with Velcro to close I use it always when doing any physical activities and lifting and during my exercise time. I feel it helps. At least it makes me feel better. I don't have a name but u can get in a medical supply place or maybe a pharmacy. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Need Advice! High blood pressure and diuretic medication.
Linda2Linda2
Jan Dollar I was on HCTZ for a while and did not have a problem with dehydration. Not all diuretics are the same. Jan [ more ]
Bobster Hi Linda, I have been on a diuretic for approximately one year as an additional blood pressure medicine - I take two other types of BP meds for hypertension as well. Additionally, I had renal cell carcinoma resulting in approximately 1/2 of one of my kidneys removed through robotic surgery in 2009. I have had a jpouch since 1992. In my case, blood pressure is controlled generally and my kidney function in within normal range. [ more ]
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J-Pouch ForumsGeneral Discussion
Mesalamine suppository for Cuffitis. Will it work?
A AMB
AMB Thanks so much Scott. It's encouraging to hear that Mesalamine may take a few weeks as opposed to a few days to work. I will ask for more antibiotics. And we'll see if it's cuff or pouch or something else when the pouchoscopy is eventually scheduled. I'm trusting Dr. Shen will figure it out. [ more ]
Scott F It can take a couple of weeks or more for mesalamine to do its job. If I were trying to transition from antibiotics to mesalamine I’d continue both for the first couple of weeks. Then the mesalamine’s “job” is to maintain a reasonably healthy rectal cuff instead of trying to heal an inflamed cuff. I have no idea how well it will work for you, or if your cuffitis diagnosis is correct. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Fistula / Abcess near jpouch
J Juliana
Jan Dollar Quite a few people here have had fistulas. You may want to do a search for those threads. I had a large pelvic abscess. It was drained with a catheter guided by X-ray. The catheter stayed in about a month. It was not a fun time. But, I am OK now and that was over 25 years ago. Jan [ more ]
DSL Alabama Juliana, sorry I am just seeing this. I pray everything has progressed well for you. Please let us know if it was a fistula and/or what the treatment was. I had no experience to share as I was only tested for it and it was fine. I do remember the horrible pain . Hope yours is better. [ more ]
DSL Alabama ❤️
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J-Pouch ForumsGeneral Discussion
Covid
M Matthewsmom
Matthewsmom she’s in the ER. She has a blockage. They can’t tell from the scan if it’s caused by inflammation. When I talked with my mom when her nurse was there she described what happened to me and said I should get checked out at the prompt care. A few hours or so after that I hadn’t gone yet, I started having leg pain off and on in specific locations. I think I’m having some sort of clotting issues. I am waiting to be seen in the ER. The same ER my moms at. They officially admitted her and they want... [ more ]
Matthewsmom She texted me at midnight asking what the dr had prescribed for pouchitis. It hurts when she eats. I’m so sad for her. I know she’s still paying off medical bills. I know she shouldn’t deal with this with home remedies. This is one reason I got the two dose. I wanted the ability to see how I react to one dose before subjecting myself to another. I figured whatever is in the JJ that it was theoretically more. I was able to lay around at home to recoup. She has been working still. She is a... [ more ]
Matthewsmom So far most of the symptoms went away. My arm still feels weird sometimes but not serious and I wonder if I’m being overly sensitive. My mom is still having to wear different pants to work and having her abdominal swelling although it might be a tiny bit better. I told my family dr. in a phone appointment about the arm swelling (that apt was just made to tell me about my recent vitamin lab results which were good). I could tell she didn’t have time. She suggested maybe I shouldn’t take the... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Gastroscope / endoscope via stoma? Is this risky?
SaffSaff
Jan Dollar Good news! Docs have oodles of info, but are short on time. Everything seems routine for them. So it is important to let them know when you feel a bit overwhelmed. If you don’t tell them they assume you are chill. Jan [ more ]
Saff OK thanks Jan and Pouch2021 - that's reassuring, I trust your advice. I managed to contact my surgeon who also advised the same. Its a bit unnerving after so surgery ! [ more ]
Jan Dollar The risks are pretty much the same as any endoscope, with perforation being one of the major concerns. The endoscope is small diameter, so damage to the stoma is very unlikely. This is a fairly common procedure and I am sure your GI has experience. But, be sure to ask your GI these questions so he can put you at ease. If you are really concerned, ask for a phone appointment in advance of your procedure, so you can be fully informed before you are there in a gown ready for sedation. This is... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Soft bulge at old stoma site
G Gom
Gom Thank you Jan and Scott. Just came out of my pcp's office. She said the same, it was just a visual observation and she confirmed a hernia. She referred me to the chief surgeon at the houston methodist colon and rectal surgery department and also offered a couple of choices closer to me home. Thank you all [ more ]
Jan Dollar I agree with Scott. This is a pretty simple procedure. Any general surgeon could do it. You may want one more experienced, just in case something weird occurs, but there is no need to fly to Cleveland. I don’t really know much about exercise, but you mainly do not want to strain your abs. That increases intra abdominal pressure and can expand the hernia. What ever you do, it would be best to use abdominal support while doing it. My hernia was diagnosed with a physical exam. No CT scan was... [ more ]
Scott F A good local surgeon should be able to perform a hernia repair just fine. That’s also who can advise you about the size and risk of your particular hernia, and what activity you can safely engage in at this point and going forward. A good surgeon won’t be influenced by their personal interest in performing the procedure. A crappy surgeon will simply advise repair without a thoughtful discussion of the no-repair option. [ more ]
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J-Pouch ForumsGeneral Discussion
'Over-use' of loperamide?
GSGS
DSL Alabama https://www.j-pouch.org/topic/...0#678557053644833450 Omgoodness, after my takedown I also was high producer of continual water loose BMs - yes, at night sleeping would release watery fluids, so I used pads, but would not be too proud to wear adult leak underwear 🤗. I also slept with a throw blanket under me. NOW, I soon realized the fiber I used for UC would absorb that fluid !!! Awesome results for my issues 🙌. Good luck. [ more ]
DSL Alabama ❤️
tf At one point, after surgeries 2013. I took 4 to 6 a day. I never have constipation. I take 2x a day now. I went to 1 & it didn't work for me. A few x's in the past I have such nausea & bloating I have to make myself vomit until I had nothing left to feel better. I wonder if it was CIPO? This just occurred 1 mo ago. Dr thinks a small bowel obstruction. What do u think? I'm back to 2 lopermide a day. I lost 10lbs in this past yr. Awaiting a cat scan. [ more ]
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J-Pouch ForumsGeneral Discussion
Covid Vaccine
Y ytcrockpot
Matthewsmom @mark234 and pilot debby i had problems after my first vaccine of Pfizer. My mom and I have j- pouch and got the vaccine 8/27/21 and we both had the same gut problem only mine was over one week later Sunday night. Hers was the next day 9/6. I did a full rant on what I experienced on another thread that I started on 8/24 asking for advice on getting the vaccine. [ more ]
Former Member How are you doing now Debby? Did you things get better? [ more ]
bowelsofhell If anyone takes methotrexate and hasn't been vaccinated yet, you might want to ask your prescribing physician beforehand about whether to tweak your meds. I was told to skip mine the week before and after each of my Pfizer shots, while a relative was told to withhold theirs for one week post-vaccination. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Diagnosed with Colon Cancer after 12 years of UC. Need immediate surgery
M MikeAZ
Martmar5 My j pouch surgery is coming up on the 15th this month. I am fortunate to go to what I believe is one of the best cancer hospitals in the US. City of Hope in duarte California. I have been going there for almost 4 years now. Starting of with prostate then colon and now rectal. The care they provide is second to none. Amazing staff as well [ more ]
kta The pouch was the right decision for me. I hated the bag, but I have always been disgusted with poop. There have been problems. A three step turned into a four due to an internal abscess. I have chronic pouchitis, but it is well managed with antibiotics. For the most part, I do what I want to do and eat what I want. My skin is pretty sensitive and underneath the bag wafer, it became weepy and inflamed. It was hard to keep the bag on and I had to spend more time prepping my skin. This all... [ more ]
Maverick Plus See if you have a local Crohn's and Colitis Foundation in your area. They really helped me. They gave me the phone number of a patient advocate, and he helped me choose a very good surgeon in my area (in fact the same team did his surgery). He also let me know what to expect and was a very good resource for any questions I might have. He even called me a couple of times in the hospital to see how I was doing. I hope you have the same resources in your area. [ more ]
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J-Pouch ForumsGeneral Discussion
Virtual workout trainers for J Pouchers
G Gom
Gom Makes sense, thank you Scott [ more ]
Scott F It makes good sense to be mindful of your five prior surgeries. I think you’ll find multiple sources that claim to be good for post-surgical fitness, and some of them are probably good. When you asked your question in a J-pouch-specific way I thought you might not find anything. In the meantime, since you’re about 8 months post-takedown, you really have no specific limitations. I’d suggest being careful to try to distinguish the discomfort from working lazy muscles (good!) from any... [ more ]
Gom Interesting Question. The main reason i felt that was because I went through 2 c sections and a 3 stage J Pouch process. So my muscles in the area are quite weak. So i am not sure i can take the same path like anyone else without a surgery (or minimal surgery) towards building back my core muscles. I assume that without careful selection of the exercise i undertake, i may end up damaging that area or creating a hernia. i could be wrong. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Upcoming surgery
M Martmar5
Kangaroo What helped me when things got hard was remembering that it was temporary and it will get better. Now, 4 1/2 years since takedown. I hardly think of my pouch. I've never had major issues such as pouchitis, strictures, or a fistula. I had a 2 step procedure and the first surgery was definitely the hardest. The pain was bad for about a week and a half. It took me about a month to feel like myself again. You will have leakage, so it will be helpful to have pads for after you leave the hospital. [ more ]
Former Member Have faith that everything will be okay You got this! Good luck! Keep your faith high, I have faith in you [ more ]
Former Member ❤️
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J-Pouch ForumsHelp! Need advice now!
4th Day Home from Colectomy- J-pouch
R Reneawes
CTBarrister As for the symptoms you describe above it could be a blockage although my experience is that the pain steadily gets worse and is accompanied by a knotted sensation in one location. Are things passing through your rectum yet? If you are moving bowels that wouldn't be the issue. [ more ]
Reneawes Thank you ❣️ [ more ]
CTBarrister Hi, I have had a J Pouch for almost 30 years and can eat just about anything I want. Diet is all trial and error with the individual and there is no approved one consensus diet for all. One phenomenon I have seen on this board is the emphasis on short term digestability rather than long term health of the Pouch. At your early embryonic stage of Pouch development, clearly, short term digestability is really all that matters. After 30 days or so, you may begin gradually adding new foods, one... [ more ]
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J-Pouch ForumsGeneral Discussion
Aneurysm in my brain
A Allison
Bubba1028 Mine was 5mm- located in the left quadrant, not really near the eyes or anything that would be affected with surgery. You can have it treated a variety of ways- mine they mapped out my vein through an artery in my leg ahead of time- a procedure in April. This is to make sure they have a map of the arteries in the brain and they know where they are going. They used a web/mesh device to basically block up the aneurism so it will stop blood from flowing into that area. I’m on blood thinners for... [ more ]
Allison Hi Bubba, How big was yours, where was it and how did they treat it? Did it grow or did it start out big (when you found it)? I really know nothing about aneurysms and I'm a little scared to read about it. It's too new and I'm too emotional right now. Just had an MRA on Thursday and I'm waiting to hear from the neurosurgeon. [ more ]
Bubba1028 I have a brain aneurism as well. I was diagnosed randomly- was having headaches and had an MRI and caught it - but it wasn’t causing my headaches oddly enough. It is just something that happens and a lot of people have them but they never find them unless they have an MRI or CT scan like in my case. I just had surgery last week to treat it and am doing very well. They have a lot of good treatments now. Have you met with a neurosurgeon to decide how you are moving forward to treat it or if... [ more ]
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J-Pouch ForumsGeneral Discussion
Severe abdominal pain….again
B Bubba1028
girlunky Bubba I am suspicious I had a couple of small gall stones many months after my final surgery. It was during the strictest lockdowns and getting medical care was not possible. After 3 or 4 episodes it stopped so I decided not to worry. Anyway, I did some research on issues we may have from colectomy. Kidney stones is one of them, due to reduced urine volume. As a kidney donor this is a real concern for me, so I make sure I drink enough to pass light colored urine. It' s a lot more than I had... [ more ]
Bubba1028 I do take a probiotic daily and i did look into FODMAP. I guess they have an App too! But you have to pay for that. It would be an adjudgment for sure, to do the elimitation diet. I actually ended up in the ER this morning bc of stomach pain- come to find out, I’m passing the 1 of 12 kidney stones that I have! I was on the floor in pain an ended up taking a leftover Percocet from one of my surgeries. They did an urinalysis and my blood is brown/dark red. I didn’t noticed bc I always pass... [ more ]
merganser22 I have no idea if this would help in your situation, but have you looked at the FODMAP diet? This has made a real difference for me 26 years post J-pouch. I use to eat peas regularly until I discovered that they were causing some of my discomfort. Elimination diet might be the best option. I also take 2 Visbione every day, otherwise I couldn’t get out of bed. We've been in your shoes. Good luck and don't give up,! [ more ]
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J-Pouch ForumsGeneral Discussion
Confused on what I should eat
ValenValen
merganser22 I second the FODMAP diet!! That has made a real difference for me. I also take 2 Visbiome every day. You are not alone. [ more ]
Glenys D Hi Valen, I've had a pouch for 28 years now. I found the FODMAP diet helped. It is low in lactose (dairy), fructose (sugar) & Gluten (bread) etc. But I got a bit tired of being strict with my diet. So now I avoid lactose, and limit gluten and onions and garlic. I tried a diet this year that was part of a research & it was high fibre, low sugar, low gluten and it actually made me lose a lot of weight. So, I had to go back on Ensure to try and put some weight on. I suggest talking to a... [ more ]
Portia ❤️
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J-Pouch ForumsGeneral Discussion
Biologics reduction
FM Former Member
Valen I had both my Humira and Remicade cycles increased, then decreased, then increased again, so and so forth. I haven’t been on them for almost two years now, but I do remember that my weight was a struggle. I could never go up, and stopping the medications was the only way to gain weight. My diet consisted of a low FODMAP diet, because it was simple and non irritable, although it could get boring. It really all depends on your body. Keep calm and all will be well. I hope that answers your... [ more ]
CTBarrister My Remicade cycle was increased in frequency from 8 to 6 weeks, which was effectively an increase in dosage. This was not due to blood labs, rather it was due to being symptomatic in the 6-8 week mark after infusion. My dosage has also been increased and decreased based on fluctuations in my weight. It went up and down when my weight went up and down. The initial dosage of all biologics - or so I thought- is based on weight. I did have a Remicade blood test and don't have the results yet,... [ more ]
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J-Pouch ForumsGeneral Discussion
Imodium
L LJP
Scott F The OP didn’t ask a question, but the post itself was about an alternative to Imodium (Pepto Bismol in this case). The conversation veered to another way to reduce the need for a bowel slower like Imodium - @maddie18 cut out coffee. A few people weighed in on coffee, so that’s where the conversation went. It’s not entirely off topic, though I would have chosen a different name for the topic, and I’m not at all sure that Pepto Bismol is a “better” drug than Imodium to be taking chronically. [ more ]
RondaC Sorry to sound snippy but what does coffee have to do with Imodium? [ more ]
Scott F I couldn’t tolerate coffee before my surgery. Now I have it every morning. [ more ]
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J-Pouch ForumsGeneral Discussion
Consistency
ValenValen
Former Member Your normal 3-5bms?!?!?! I am jealous. I have 14-20 haha Your normal dear [ more ]
Scott F @Valen If you have no urgency, frequency, leakage, or discomfort then I don’t think you have any problem that needs solving. [ more ]
girlunky Sounds good Valen. I am actually better off when my output is loose, as I have trouble emptying when it is too thick. But you can try fiber (like Metamucil) or Imodium to reduce wateriness. [ more ]
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J-Pouch ForumsGeneral Discussion
Covid vaccine
MO Mary O
Mary O Thanks Jan. Very helpful! [ more ]
Jan Dollar My understanding is that UC by itself is not a qualifier for being immune compromised. Something like AIDS is because it is an immune deficiency. UC is an overactive immune system. Folks like CT and myself take drugs that suppress the immune system. I am on Imuran and Inflectra. That said, when I got my 3rd vaccine shot, I did not have to show proof of qualifying. It was self attestation. Jan [ more ]
Mary O Thank you very much, CT. Very helpful. [ more ]
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J-Pouch ForumsGeneral Discussion
Upcoming J Pouch surgery
JC Jess Colby
Former Member Your welcome. good luck [ more ]
Dog Life immediately after surgery is going to have you questioning. For me, creation of the Jpouch (second surgery) was the most painful. The takedown surgery was a cakewalk. . .recovery though can be rough b/c you feel better but you're still healing. First, the good news. I'm 14 +/- years with my jpouch and I have zero issues. None. Not one. I'm not bragging, just want you to hear good news. After takedown, there isn't much for you to do but be patient. You have some new plumbing and your... [ more ]
ksadams63 ❤️
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J-Pouch ForumsGeneral Discussion
Drinking water
M maddie18
maddie18 Hi thanks for sharing!! How does baking soda help? [ more ]
Chook2 I get a prescription electrolyte from my doctor and add lemon from my two lemon trees. sometimes I'll make st mark's solution which is 6 teaspoon s glucose,1 teaspoon salt and 1/2 a teaspoon baking soda with 1 litre of water and a squeezed lemon. [ more ]
Former Member ❤️
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J-Pouch ForumsGeneral Discussion
Sugar
ValenValen
Kmiller I rarely have diarrhea and eat sugar daily. I have had pouchitis but have been doing great the last few months. [ more ]
Scott F I have used psyllium fiber twice a day with good results for over 19 years. It’s entire purpose (for us) is to bulk up the stool. Not everybody likes it, but why not give it a try? I think some J-pouchers have significant food sensitivities, but for most of us an intentionally limited diet has little or no effect on our digestive health. [ more ]
Portia PS Regarding stool consistency, I put a teaspoon of Konsyl (unsweetened psyllium husk fiber) in my morning banana and oat milk smoothie which sets me up great for the day. There are lots of posts about the use of fiber supplements like Metamucil or Benefiber. Some of us also use loperamide or lomotil to slow things down. Check with your doctor first who can provide you with information about that. 😀 [ more ]
See all 6 replies...
J-Pouch ForumsPouchitis
Visbiome Questions
L lizardMWC
Scott F Visbiome is better at preventing pouchitis than treating it. I used it (under its earlier name) successfully to delay needing antibiotics for about a year. I still use a closely related probiotic (VSL #3) along with antibiotics, but it does its job better without them. [ more ]
violet Hi, I've just gotten some Visbiome packets (the extra strength kind). I've had off and on bouts of pouchitis for years, with flare ups twice a year. But lately it seems to come creeping back as soon as I finish the antibiotics. I've just finished a regimen 250 mg of Cipro every other day for about 8 weeks. Those of you that use Visbiome, are you using it to prevent pouchitis, or make it go away, or both? I'm not sure if I should just start taking it now to hopefully ward off the P, or wait... [ more ]
Scott F Steven, I’ve done the test. The information, imperfect as it is, is that it helps in my circumstance. A J-pouch isn’t an ideal home for a thriving microbiome, anyway, so a daily push toward a healthier balance seems to be useful. I’ll just have to live with the guilt of that daily slaughter at bedtime. [ more ]
See all 10 replies...
J-Pouch ForumsPouchitis
Flagyl
LoriBLoriB
CTBarrister Did you know flagyl is also given to dogs that have diarrhea? My father's Shih Tzu came down with diarrhea last week and the Vet gave her a med which seemed to shut it down immediately. My father told me the name of the med was not pronounceable but was liquid drops he was sprinkling on the dog's food and she was then eating it. I walked next door to his condo this morning to examine the bottle, and sure enough the Vet gave her good old Metronidazole aka Flagyl liquid drops! [ more ]
LoriB Thank you Jan. Just don't know what too do. I haven't tried antibiotic rotation. Just had me on long term Cipro. Which I felt didn't work. Thank you I will be looking forward to hearing how you progress. [ more ]
Jan Dollar The previous post was from April. I had not yet begun Remicade. I just finished my Remicade induction and will have my first maintenace infusion in August. I continued the antibiotic rotation during induction, and just stopped taking them yesterday. So we will see if I can stay off of them. I think they just move up the ladder on treatments and it is pretty much up to you whether you want to try them, live with the dysfunctional pouch, or have it removed. For me, using Imuran (pretty much... [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Entyvio
J Jrt1352
Bobster I have been on Humira, Entyvio and Stelara. I didn’t have side effects from Entyvio but after a couple of pouch exams that showed continued ulcerations and inflammation , my physician recommended that I try Stelara. That one has worked well for me. [ more ]
Jrt1352 That’s great to hear. [ more ]
Mrs P ❤️
See all 12 replies...
J-Pouch ForumsGeneral Discussion
Liquid Stools
ValenValen
Jaypea I eat no carb, no sugar so if I have lots of veggies with oil I’m almost guaranteed a little leak. Depends to the rescue. My body has adapted well and I drink about 2 litres of water a day. No issues at all. [ more ]
maddie18 Hi Jaypea, What foods do you find cause small leakages at night? And, how do you stay hydrated albeit constant loose stools? [ more ]
Jaypea I have not had a solid BM since my j-pouch was installed. My body copes very well and I have never (fingers crossed) had an issue with dehydration. Occasionally have small leaks at night all dependant on what I have eaten for dinner. [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
eating
L La-Te-Da
Maverick Plus Could 8 liters of water be too much? The advice I read is about 3 liters for women and about 4 for men. I realize we (with j-pouches) may need more, but I would think that twice as much may be too much. Of course, if you are following your doctor's advice, then never mind. [ more ]
Former Member Protonoix and Magnesium helped me int he past. It might help you? [ more ]
SteveG Are your BM comparable to how it was before pouchitis? If they are more irregular and you're also feeling stuffed after eating solid food (besides nausea), that may be a symptom of a partial blockage. If it does not get better, I would have your GI doc do an ultrasonic scan, that's not a big deal. [ more ]
See all 4 replies...

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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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