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J-Pouch ForumsGeneral Discussion
Inguinal Hernia Surgery with a J-Pouch - A Survival Guide
NYC GooglerNYC Googler
dss Thank you! your post was perfect timing👍 [ more ]
NYC Googler Ouch, incarcerated intestine does require immediate attention. Good luck with your recovery. Take the teaspoon of Metamucil and don't be embarrassed to squat, it seems it's all the rage in India and elsewhere. [ more ]
dss Absolutely! Then again I say that as I’m waiting in the ED to have it repaired ! Happening at 4pm Awful pain sent me back to ED and they called the surgeon- Two loops of my small intestine are what they call incarcerated (weird name!) Im comfortable for now and just waiting / drifting in and out of sleep. [ more ]
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J-Pouch ForumsGeneral Discussion
Bands for pouch prolapses
E Ellie85
Sunflower70 Thank you so much for posting about your experience with banding! That is so helpful and reassuring. I'm not in bad shape -- it just takes me a little bit of moving around to empty -- but that horrible barium defa-whatever study showed that I wasn't emptying anywhere near as much or as easily as I thought. I guess after having colitis, I really don't mind a little inconvenience. I could live just fine like this, but Dr. Shen says it's dangerous to leave it because it can lead to ulcers and... [ more ]
Ellie85 I would say the pouchoscopy is similar to a normal one. Maybe even milder because there is less concern about visibility. I had a terrible experience with the emptying study across the city and wasn't able to do ANY prep (other than not eating) before my first banding and Dr Shen didn't care at all. I think you will be fine in a car. You might be uncomfortable and groggy but not miserable. Depending on your work, you will probably be fine. Don't plan on anything mentally taxing. I felt well... [ more ]
Sunflower70 Hi all, I'm hoping to see some updates from the folks who have had the bands and the biofeedback. I'm scheduled for the bands and I'd like to know more of what to expect. Is the pouchoscopy to put in the bands any different than a regular one in terms of how you feel afterward? I will be in a car afterward (passenger, of course) for an hour and a half to get home. I'm also so supposed to work (sedentary, from home) the next day. If the bands work, it sounds like you repeat the whole thing to... [ more ]
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J-Pouch ForumsGeneral Discussion
Imodium / fiber
MynewbuttMynewbutt
Chook2 I take two Imodium in the morning and tried stopping but noticed an increase in butt burn.I took psyllium husk after takedown but got blocked up but at nearly a year later I restarted taking it after dinner and have noticed a huge improvement ,like doing big normal poos instead of watery ones.I also read Imodium helps your sphincter muscles somehow. [ more ]
Drbev603 Hi @dlewicke, It does get easier! Try just a half of an Imodium, too. It may be enough. I'm 25 years out and it is completely manageable. I just had my first 5 day hospitalization for a blockage and I never want another one! Also, try Calmoseptine ointment, too for butt comfort. On eBay you can get a huge tube for $7.95!! Be patient...it is worth it!! [ more ]
Scott F Brett, you might want to install a bidet - it’s much less irritating than wiping. There are fancy, expensive ones and surprisingly inexpensive ones. [ more ]
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J-Pouch ForumsGeneral Discussion
Metamucil or Psyllium Husks after 4 weeks of my new J Pouch
MarsMars
Chook2 I take it after my dinner once a day and sived into a small cup of drink.ive uped it to 1 tablespoon but it is great.i tried stopping my 2 loperamide in the morning but noticed but burn increased so I continue taking it as I think you need to slow your output to reduce butt burn.l [ more ]
AMB How much do you take and when do you take it? And do you take it with food, before or after? [ more ]
Chook2 This psillium husk has been amazing my bms have at least halved and great large stools.my wellbeing,energy and skin has improved also. [ more ]
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J-Pouch ForumsGeneral Discussion
Beans
M maddie18
Curly I cook beans from scratch - boil for 5-10 minutes, then simmer for about an hour, depending on the type of bean - in soups or refried or mashed with rice, cheese etc. and find they are very good for my digestive tract as well as delicious and healthy. I like Rancho Gordo beans - great varieties and fresher than supermarket beans. [ more ]
Jan Dollar I have zero issues with beans of all types. At least no more than when I had a colon without active UC. Jan [ more ]
skn69 At the beginning of my K pouch life, I tried them a few times and cursed the darned things for all of the gas that they caused. Later I learned to soak dried chickpeas overnight with a tbls of sodium bicarbonate and that seems to help a bit...somehow it helps to reduce the gassy effect but they are still gas factories. I can eat about a tbls of Humous, a small bowl of lentils, or some other beans but I need to really chew well and never eat bread, pasta, potatoes or other starches at the... [ more ]
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J-Pouch ForumsGeneral Discussion
SIMPONI So Far
C capper
Jan Dollar Gee, it should not be making things worse. Generally, the downside is that it is not effective. Especially with your stools firming up, I agree it sounds like there is less inflammation going on. Maybe you need to consume more fluids now and increase roughage to keep things moving better. Intestinal gas is mostly due to undigested carbs and this can include soluble fiber. I took Simponi for a year or two and never had your issues. Jan [ more ]
capper Just another note on this matter... I absolutely can see a difference as the Simponi has been in my system. Stool has hardened. It doesn't seem to decrease my number of daily bowel movements but makes for more gas and more difficulty going. It used to be that my bowel movements were so quick. Now it takes longer and it's hard to empty the pouch. I am wondering if this is a sign that inflammation is going down and things are getting better or if this is what I'm going to be dealing with into... [ more ]
Scott F Harder stool and difficulty emptying suggest a problem worth handling. Psyllium won’t decrease the gas, but it may be worth a try anyway. [ more ]
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J-Pouch ForumsGeneral Discussion
Veggies after 5 weeks since I have had my pouch
MarsMars
Jan Dollar Maybe I was blessed, maybe not. I was not told there was a “list” of foods to avoid. I was given a list of foods that could increase or decrease output. The dietician basically said to take it slow and start with soft things. I was eating fruits and vegetables before my discharge on my 7th post op day of my 1-step. The main thing to remember is that mostly you will have some increased output and/or watery stools as you adapt to a more varied diet. An obstruction is always possible, but is... [ more ]
Chook2 I'm nearly a year with a jpouch and am starting to think you have to come to terms with not being normal and going 6-8 or more times a day with gas sounds and feelings is the new normal no matter what you eat. [ more ]
Drbev603 ❤️
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J-Pouch ForumsGeneral Discussion
banding procedure done by Dr. Shen for pouch prolapse
S scallop
Pouch2021 Hi AMB, The banding is probably as conservative as it gets. They snare the prolapsed mucosa with several tiny rubber bands that fall off within days and hopefully scar the tissue, stiffening it up. Some people have it done multiple times on an as needed basis. It didn’t help me but I have additional pouch issues (sinus tract and others) which I think are contributing. The aftermath of my procedure, which you will hopefully not experience with just the banding alone, was where the s*+t hit... [ more ]
scallop Hi Pouch2021-- So sorry to hear about the ileus. Sounds awful! AMB - I believe that prolapse symptoms do get worse over time. There is no other option. Shen and Remzi are doing the banding. Otherwise I think the only option is to excise depending on how severe the prolapse is. Wondering how you got people at Columbia to pick up the phone and answer emails. Maybe I just ask too many questions! [ more ]
AMB Thanks for sharing your experience @Pouch 2021. Sorry it was so rough. I've not had the same issue with communication with Columbia that Debbie has. Just the opposite. But I am hesitant to undertake banding if there's an conservative option. Wondering if your experience of this is that symptoms of prolapse got worse over time? [ more ]
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J-Pouch ForumsGeneral Discussion
What are you hydration drinks? Gatorade, pedialyte?
FM Former Member
Chook2 I drink sugar free Gatorade but mostly watered down more than recommended saccharine powder drink.not sure how safe saccharine is. [ more ]
Richard L I drink mostly water, but also drink Gatorade G2, less sugar than regular Gatorade. [ more ]
dlewicki I’ve been using Liquid IV since my procedure and have liked it as an alternative to just straight water. Nuun is another solid pick for me. Both options have very low sugar content. [ more ]
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J-Pouch ForumsGeneral Discussion
EUA pouchoscopy
K Kushami
roseviolet I consumed liquids the day before. Was instructed to buy a Fleet salt water enema, empty out the salt water and refill it with tap water 2x as my prep on the day of the scope. Was told never to take anything orally again, as those are way too strong and overkill for J-pouches. [ more ]
1993SPouch I recently had an EUA pouchoscopy. I used the fleet enema and honestly, it wasn't bad at all. Not sure if that's what is prescribed for prep - but don't take anything requiring you to drink it. Those bowel cleaners are WAY too harsh. The anesthetic was fabulous because I don't remember a thing. Good luck with everything! [ more ]
Kushami Oh, just found out it is “examination under anaesthesia”, so answered that bit. My other problem is that the hospital is so snowed under that the second-opinion surgeon doesn’t have my records yet. When we phone to try to sort it out, the lines are all busy and we just get cut off. I was thinking that the hospital is under so much stress that I am better to postpone the whole second-opinion thing, but then I started to get urinary incontinence from the distended j-pouch pressing on my... [ more ]
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J-Pouch ForumsGeneral Discussion
What to expect with SCD diet and j-pouch/fistulas
A Ali_Johnson
Juliana Hi Ali, I see that this is an old post. I have a pouch since May 2017 and a new Crohn diagnosis. I have a couple of friends with Crohns that swear by the SCD diet, that it has kept them in remission without biologics. I recently started the SCD diet again (tried it when I had UC). My UC was too far gone to be treated by diet alone at that time unfortunately. I am wondering how you did with the diet? I will try anything at this point but a little worried about having loose stools without... [ more ]
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J-Pouch ForumsGeneral Discussion
Pouchitis
GEB56GEB56
GEB56 Thanks Michael. I have no insurance coverage. I looked at the Rifaxamin and see it would cost me over $600/month, so unable to do that. I currently have some lung issues; not yet diagnosed, but lymph nodes in my chest are enlarged, so I am unwilling to start a biologic/immunosuppressant at this time. I am having a scope of my pouch Nov 17 so perhaps that will shed more light in exactly what is happening. The Flagyl I am using again now is doing nothing. It worked up until a year ago quite... [ more ]
Michael G Gail, I've been in your shoes....do go read my entry in the skin breakdown section....however for the past 3 years I have enjoyed fairly good results with the biologic Entyvio which i get by infusion every 8 weeks....in additon to Rifaxamin 550x2 as needed! I'ts not perfect and sometimes i'm on rifaxamin too long between infusions which then increases the flare....ideal rifaxamin is 8-10 days and then jump off for another 10 days and start the practice again....i'm on medicare/aarp so they... [ more ]
GEB56 Hey Scott. I wish bowel rest was the be all end all, but wishful thinking won't make it so. I have a pulmonologist. I have several abnormalities on my CT, but no concrete diagnosis yet, which infuriates me. 9 months is a very long time to be short of breath with green guck for hours every morning. This came on suddenly with no smoking history, although emphysema has been mentioned on a chest xray. I do sports and now my breathing is poor. Inhalers have not worked. I am 65 years young. It... [ more ]
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J-Pouch ForumsGeneral Discussion
Hydration - Biolyte
N navajocr
navajocr I appreciate the answers but has anyone actually tried it? If so, I'd like to know what the results have been. Yes, it's a bit pricey, but if it works well, then it's worth it for me. [ more ]
Scott F @CTBarrister You’re right. I noticed the erythritol and was concerned, but since they claim it specifically improves absorption I just wasn’t feeling like investigating the (perhaps) competing effects of improved absorption vs. the problems with sugar alcohols. In other words, if it’s helpful in small quantities with a lot of fluid then maybe it’s worth the trade-off. OTOH there’s a real chance that it’s just a careless way to keep the calorie count down, and perhaps doesn’t help with... [ more ]
CTBarrister Scott your post is strangely silent on erythritol being used as a sugar substitute in this product. When I posted in another thread about a sugar free and lactose free ice cream that has erythritol in it, I seem to recall you raising huge objections to it as a possible gastrointestinal irritant. It's OK in rehydration solutions but not in sugar free ice creams??????? What's not good for the Goose is good for the Gander? [ more ]
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J-Pouch ForumsGeneral Discussion
Diversion surgery
K Kushami
n/a I had a lot of other stuff going on due to the septic abscess, gastritis, and more, so the length of my stay with the ileus may not have been typical. It does help to walk as much as you can after the surgery, and take it easy on the pain meds if possible. I hope everything works out well for you. [ more ]
Kushami Oh no. I am so sorry to hear that. I have PTSD now (didn’t have it back in 1999/2000 when my original surgeries happened) and am worried that a long hospital stay would be too much of a strain on my mental health. [ more ]
Kushami Oh dear, I hear NG tubes are pretty unpleasant. Ten days must have been alarming. [ more ]
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J-Pouch ForumsGeneral Discussion
Irritable Pouch Syndrome
A Anais
CTBarrister Since I have had both Pouchitis related frequency and IPS related frequency I can say there is or was a distinguishing feature of each. With IPS the bowel movements come in rapid machine gun bursts and usually after eating. With pouchitis frequency is more spaced out and less machine gun like bursts. If you take bentyl and/or levsin 45 minutes before eating and you go from having a number of rapid fire BMs after meals to none at all, it's IPS. The meds will confirm the diagnosis if taken as... [ more ]
Scott F IPS can be a tricky diagnosis to make with confidence. Has your son had a course of antibiotics (Cipro or Flagyl) to see if they have any effect? Sometimes pouchitis is difficult to see. There are also some basic things that can make a very big difference, and you haven’t said if he’s taking anything besides the amitriptyline. For example, does he take soluble fiber, like psyllium/Metamucil? Does he use a bowel slower, like Imodium or Lomotil? [ more ]
CTBarrister Bentyl and Levsin are the best drugs to treat this condition in my experience. They must be taken 45 minutes before meals. With IPS which is also called spasmodic pouch, there is excess motility and it can be triggered by eating. My bowel movements all came in bursts after meals and if that is your son's pattern make sure the med is taken and begins to work before meals, not during or after. I never took amitryptiline although I assume it is an anti-spasmodic drug, like bentyl and levsin. [ more ]
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J-Pouch ForumsGeneral Discussion
Postop recovery
WendyyWendyy
Wendyy Thank you guys im trying to have patience and more patience to get through this. I know it’s going to be rough at the beginning.. & all your advices really help me and knowing this will get better. It sucks really does but I Know I’ll b able to get through this too. [ more ]
Jaydog I was the same way after takedown. Don't sweat it. It will get better. [ more ]
PHedges To begin with my recommendations are: - Patience……more patience…. repeat, second watch what you eat, do your best to stick to low residue foods and pouch safe like plain chicken, bread, rice, mashed potatoes, etc., totally try your best to stay away from products that generate gas, no sodas or carbonated drinks. Find a way to walk it out…. When you walk even a bit at the time your gut likes it and allows your pouch to help ease the evacuation. Try using the toilet when is time not when you... [ more ]
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J-Pouch ForumsGeneral Discussion
Iron Supplements
J JHendrix
AMB Surgeon's dietician recommended liquid iron brand: Floradix Iron & Herbs after stage 1. I've always been intolerant of iron. This is the most easily digested I've ever used. Have occasionally taken after take-down. Have not noticed any impact from it. But just in my 4th month since surgery & still struggling to find the right diet balance. [ more ]
Pouch2021 There are various causes of anemia, one being iron deficiency which could be from poor absorption or bleeding. But there are other causes as well. B12 deficiency as you pointed out, suppression of bone marrow from disease or meds, including a big one for those with IBD or any chronic inflammatory state: anemia of chronic disease (ACD). A CBC can help differentiate between some of these based on your MCV (volume of red cells) but you also need iron studies. In ACD you can have normocytic or... [ more ]
lynn5665 I’m 25 years post op. The last two years my iron has also been low. (Lower this year) b12 and everything else is good. I started taking iron gummies and had no ill effects. Curious if others have iron levels that are low? I mainly eat plant based. Feel great. No problems with my pouch. [ more ]
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J-Pouch ForumsGeneral Discussion
bowels constantly gurgling and bad gas
GrannyJ64GrannyJ64
Drbev603 Thank you Scott! Great to know!! [ more ]
BrendaT GrannyJ64 - I joined the site today & came across your post when searching for people with similar issues to myself. I see that you posted this about a year or so ago & was wondering if you ever found the cause of your constant gurgling & if you were able to address it. I’d love to hear how you got on as my symptoms sound identical to yours. I hope things have improved for you. [ more ]
GrannyJ64 Thank you Scott 😊 I will talk to my doctor about trying that! [ more ]
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J-Pouch ForumsGeneral Discussion
.
FM Former Member
Scott F Did this bloating start immediately after your end ileostomy was formed, or was there a delay (and how long)? An ostomy can sometimes empty poorly, and sometimes adhesions that form after surgery can cause things to be blocked up a bit. In either of these cases the J-pouch surgery might improve things, particularly if any problematic adhesions are lysed during the surgery. The surgeon needs to be aware of the problem. These aren’t the only possible causes. [ more ]
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J-Pouch ForumsGeneral Discussion
Inguinal Hernia Surgery with a J-Pouch
NYC GooglerNYC Googler
NYC Googler Thanks so much. Boy do I unfortunately know far too much about what it's like if your system won't restart, ileus, after surgery. It happened twice to me and pretty near did me in. Two 3 week plus stays in the hospital and a long recovery. Still, 18 years later I'm a happy poucher. [ more ]
Michael NYC - G... Big picture ... had my pouch for 36 years ... had inguinal surgery in 2012 ... so, a fairly long time ago, in New Jersey far, far away... I was on our couch watching the 432nd episode of Law & Order. Cuddling with my wife (who is a doc!) and I coughed. She felt something in my lower sternum. She made me cough again (and again) and said, "hey, you have a hernia!" Fast forward to NY Presbyterian ... I contacted my colo-rectal surgeon and he recommended a colleague who was... [ more ]
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J-Pouch ForumsGeneral Discussion
Pouch Excision Surgery
FF F'ing Fistula
roseviolet FF, glad to be of help. If you have other concerns or questions, ask away. I was fry happy to have it over and done. Thinking about it was worse than actually having the surgery. --Rose [ more ]
F'ing Fistula Hey Roseviolet, That's really useful, thank you .. just looked at the post you mentioned, d'oh, sorry I rehashed an old question! I thought I'd looked through most of them but I somehow missed that one, which is identical to what I was asking, I didn't mean to be that lazy! Thanks for pointing me in the right direction, I was very close to just buying a doughnut cushion 🤣 shows what I know! I'm glad your op went well and you had a good recovery tho 👌👌 FF 😊 [ more ]
roseviolet Click on General Discussion. Then do a search for "failed j-pouch, needs excision." When the entries for that come up, scroll down to Roseviolet, which is me. I went through quite a bit of info here. Do NOT get a donut cushion. It will pull apart your butt cheeks and break open your stitches. You need a waffle cushion. Your hospital should give you one to use and they will send you home with it. There are those who thought the butt closing was painful, but in my case it was nothing more than... [ more ]
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J-Pouch ForumsGeneral Discussion
.
FM Former Member
Jaydog I switched surgeons. I had an emergency surgery to remove my colon at a local hospital. I then went to Cleveland clinic for steps 2 and 3. Best decision I could've made. [ more ]
CTBarrister Most people do 2 step surgeries where their step 1 and 2 are your 2 and 3, so not sure any answers you get will be that helpful or will necessarily be applicable. My opinion is step 1 of 3 isn't the big step, its steps 2 and 3, which is like anyone doing steps 1 and 2 choosing their first surgeon. As for switching surgeons between steps 1 and 2, it's not a big deal because step 1 of 2 and 2 of 3 is the totally key step. But if you do switch you will have most likely another 3 months with an... [ more ]
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J-Pouch ForumsGeneral Discussion
How best to take psyllium to slow output?
Pammy SuePammy Sue
Kushami Hello Pammy Sue, Here’s my regime: Smooth Metamucil (must be smooth version; coarser powders didn’t work for me) 2 tsp mixed with as little water as possible (just enough to enable you to swallow it comfortably) Mix and gulp down quickly before it solidifies Take right before eating Take before main meals and any snacks with fibre Avoid drinking large amounts of liquid with meals [ more ]
TCM Same here: no colon since 08. But each body is different . [ more ]
FelixGust TCM I have no colon so that probably makes huge diffrrence. If I drink liquids al9nr they undoubtedly go straint through like drain cleaner [ more ]
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J-Pouch ForumsGeneral Discussion
Gastroenterologist in Sarasoto Or Manatee County, FL
BarbieGBarbieG
JoniC I just moved to the Sarasota area and my GI in Pittsburgh recommended Brent Murchie at Florida Digestive Health Specialists. I wanted a female doctor so I see Jasmine Dukandar in the same practice and so far I am happy with her. [ more ]
Former Member Oh great! We are both around the same age and we had our surgeries around the same time! That is soo cool!!! And we both had a two step!!! COOL! Your welcome! And Yeah that doctor is great! You will love him! Definitely message me sometime and we can hang out, I am 28 years old, very near your daughter's age, we can compare notes lol. [ more ]
mary beth My 24 yr old daughter is moving to Sarasota in October and I popped on here to find a GI knowledgeable about J-pouch and found this! She had her 2 surgeries in 2014 as well. She’s doing well but good to know there’s a Dr not too far away. Thanks for the information! [ more ]
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J-Pouch ForumsGeneral Discussion
Intolerancies
G GerdMüller
SteveG @GerdMüller I agree to Scott F that your apparently food related problems are not necessarily intolerancies. Perhaps it is a kind of irritable pouch / bowel syndrome which is just showing up clearer if you eat certain foods. As you said pouchoscopy showed no signs of inflammation, so it is not a pouchitis (by the way, why did they three pouchoscopys this year if everything looked all right?). But you could rule out that there is still some invisible inflammation by taking budesonide... [ more ]
Drbev603 Thank you all I think I need to be followed by a GI THAT does this type of surgery! My surgery was done at a previous facility . I'm trying to get my medical records. I'm not sure i have a J-pouch. When I saw it during a lower Gi xray, it looks just like a bladder Thanks for all of your help! [ more ]
Drbev603 ❤️
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J-Pouch ForumsGeneral Discussion
Simponi and Continued Ailments
C capper
capper After my first 200mg dose of Simponi last week (maybe more), I haven't noticed anything but perhaps more difficulties. Do any / many of you get the non-stop noisy / gurgly stomach sounds often? It seems this is a regular thing with me. I'll be laying down in bed and my stomach won't stop with the noise. [ more ]
capper My doctor and the nurse with the biologic company recommended I take an extra dose of the Simponi to make sure I got enough. I did! [ more ]
Scott F I don’t know why the injection malfunctioned, but I wouldn’t worry too much about it, especially since it was your first dose. If an appreciable amount of medication was wasted then the Simponi will just take a bit longer to work for you, and if it turns out to have been a small fraction then the effect will be insignificant. When I first tried Remicade many years ago I asked the nurse to flush the line with the last of the Remicade into me, since I figured the tubing contained several... [ more ]
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J-Pouch ForumsGeneral Discussion
Potential Cancer risk in the Cuff area of the J-Pouch?
BS Ben S.
clwakley I had the j pouch after many years of ulcrative colitis due to colon cancer. I was scoped every year and 5 years later the cancer returned in my rectal cuff. I now have a perminent ileostomy. [ more ]
Pouch2021 I agree with Jan. There is a lot of variability, both between patients and institutions on cancer surveillance. Someone who had dysplasia at colectomy and still has a cuff will likely need frequent scopes/biopsies. I developed a severe UC flare in my rectal stump between stage 1 and 2 so my CRS dissected out all rectal mucosa and stapled my pouch as low as possible to the anal sphincter. Across several scopes they have confirmed no mucosa left. I didn’t have dysplasia before and have no... [ more ]
Drbev603 ❤️
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J-Pouch ForumsGeneral Discussion
One month post takedown.
NickMNickM
Kushami ❤️
Former Member @CTBarrister I buy SmartBran from Wholefoods on Amazon. It is free delivery after 35 dollars. To my surprise, I found a few items there that are cheaper than my local grocery store, and combine my order to get free delivery. I tried All-bran cereal too. It was not easy to digest, so it does a great job of slowing down digestion, but I cannot eat for hours after eating that. Smart bran has wheat bran, oat fiber, psyllium seed husk, oat bran and whole oat flour, so I find it easier to eat and... [ more ]
NickM Hey CTBarrister, thanks for the advice, I’ll look into getting that, just been having the regular oatmeal at the moment. tried the psyllium husk the last few days, really made a difference with consistency and helped to thicken things up. Got the best night sleep since takedown too. had one to two drops of blood, last few days, noting substantial. Surgeon doesn’t seem too alarmed as it’s only 4-5 weeks since take down but he’s arranging a pouchoscopy just to be sure. great advice on here,... [ more ]
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J-Pouch ForumsGeneral Discussion
Jpouch overtime
C Chook2
CTBarrister Butt burn after takedown is actually due to excessive alkalinity in the stool as opposed to excessive acidity. The colon regulates the pH of the stool and that function is slowly (SLOWLY) assumed by the J Pouch. In some cases it fully adjusts, as I said in my case may have been 3 years. In some cases it never adjusts completely and probably in some cases very little or not at all. It's one of those things that could take a lot of time, and instant results reasonably shouldn't be expected. [ more ]
Ryan138 I’m almost at 14 months and still use calmoseptine on the daily…..I guess some of us just have more acidic output than others… Or maybe we just have extra sensitive skin down there… all I know is calmoseptine is NOT recommended as a mayonnaise substitute [ more ]
Former Member ❤️
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J-Pouch ForumsGeneral Discussion
Homemade electrolyte drink.
C Chook2
SteveG Baking soda (sodium bicarbonate, chem. NaHCO3) can help against heartburn, it neutralises gastric acid. It also helps to improve the body's acid-base balance and it is said to have anti-inflammatory effects. After reading this first post I've found an old package at home and I add half a tea spoon to my drinks about twice a day to see if it helps me, but it is difficult to say. You should have it at least one hour before or after meals, because as said above it neutralises gastric acid which... [ more ]
Chook2 There is a drink called st mark's solution.Ive stopped drinking this because one of the bottles I made up nearly exploded and I still drank it but it was revolting but gave me a huge clear out like an enema,I think the lemon was off..Ive found a 99% sugar free premix which seems better.I think the baking soda thickens things but I don't know. [ more ]
maddie18 Hi How does baking soda help? [ more ]
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J-Pouch ForumsGeneral Discussion
Have you had surgery for stricture?
S 1993SPouch
Glenys D Hi Jen, Yes, the stricture was very small and I was passing undigested food. I definitely think trying the FODMAP diet is worth it. But it would be helpful to discuss it with a dietitian. I hope it works for you. [ more ]
1993SPouch Thank you for your response! Can I ask you if the stricture was ever this small and is it a balloon dilation or something else? I'm also passing lots of undigested food so perhaps low fodmap should be a consideration. [ more ]
Glenys D Hi Jen, I had my pouch in 1992 and have had recurrent strictures at the anastomosis. The surgeon does a dilation of the stricture every 12 months and that seems to work. At one stage he was considering major surgery but then I started the FODMAP diet and the symptoms improved so much, no further surgery was needed. So it might be worth getting a 2nd opinion? Hope it all works out okay. Glenys [ more ]
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J-Pouch ForumsGeneral Discussion
Fatigue: Jpouch or something else?
ValenValen
Jaypea At this stage in the pandemic my first question is "are you vaccinated?" Having cold symptoms and fatigue would point me in the direction of getting a Covid test. If you are fully vaccinated those symptoms could be a case of the dreaded "rona". [ more ]
maddie18 Hello All, When we say we have jpouches and our systems are normal just like someone who is intact are we speaking that we still have our entire small or large colons intact? Can we relay what part of the intestines are missing. My entire large colon was removed at the age of 21. I had just turned 21. I have not had a solid sleep in 35 years due to multiple nightly trips to the washroom. My bowel movements are always liquidy. I would relate my fatigue to these reasons. Let's try not to put... [ more ]
Jan Dollar I agree. There really is no “normal j-pouch fatigue.” People with j-pouches get fatigued, just like anyone can be afflicted with fatigue. The causes are myriad. Yes, having a j-pouch may make you more susceptible to some causes, like dehydration, poor sleep, and pouchitis. Often, the fatigue resolves before you figure out what the cause was. Life stressors and anxiety can come and go, leaving their effects on our bodies. Generally, if I am fatigued, I just take heed, slow down and get some... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Help to find a way forward
FM Former Member
skn69 I don't know your story or your history but I feel your desperation...you are sick and tired of being sick and tired...you are fed up with the pain and exhaution. I've been there, I've lived in...often...frequently and more so than many. But I can honestly say that it gets better. I can say that there are times when it is worse but the absolute worse thing that you can do is to give up hope and stop fighting. There will be a time when you will look back on this and wonder how you managed to... [ more ]
NMGuy I had chronic fatigue for 4 months after one step. I agree with others; pain after loop Ileostomy does not seem normal, see your doctor. All those drugs also have side effects, but not sure about the pain you described. Others in this forum may have better advice... [ more ]
Jan Dollar While I cannot say it is normal to feel terrible post j-pouch, it is fairly typical to struggle for months with chronic fatigue. Some of us cope better than others. Clinical depression and PTSD are pretty common. Be sure to tell your doctors how you are feeling so you can get a proper diagnosis and treatment. Being young can make it more difficult too, as you are at an age when you should be looking forward to a bright future, not worrying about the next health crisis that may hit you. Lean... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Seafood
B BK 123
CTBarrister Jumbo stuffed shrimp from Bin 100 in Milford CT. Pouch-friendly and very good. Served over a Spinach, Potato and Cauliflower Mash with grape tomatoes. [ more ]
CTBarrister Oysters Rockefeller from Bin 100 in Milford, Connecticut. An American classic since being created in New Orleans in 1889 and still classic 132 years later. This is a J Pouch friendly food which may require a few extra chews due to the spinach content. [ more ]
Drbev603 ❤️
See all 34 replies...
J-Pouch ForumsGeneral Discussion
Great News !! After Colectomy and J-pouch
R Reneawes
Drbev603 Thanks CT! [ more ]
CTBarrister One of the things I have noticed on this website, and also on the thyroid cancer website when I posted there while treating, was a tendency by many posters to make anecdotal or circumstantial conclusions as to cause and effect relationships between some event or circumstance and a health outcome. I think it's a natural human tendency to indulge these kinds of things to blame a diagnosis on some event or causal factor without really knowing if it's true or not. Just for example, after I was... [ more ]
Drbev603 ❤️
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Total Colectomy after RNY Gastric Bypass
W wbtn1963
Drbev603 No, I had my pouch in 1991 and a Gastric Sleeve in 2014. The blockage was at the collar where small intestine is connected to my rectum....+ lettuce, raw carrots and scar tissue. [ more ]
FrankB So you had colectomy, Bypass and J-pouch correct? Is the J-pouch the reason of your blockage? [ more ]
Drbev603 Correct. But I have always been eating salads and raw vegs and I was never told no to! It is a no-no! My floor nurse had a J-pouch and also was hospitalized after a salad after 7 years. The Immodium will also control your looseness. Even a half may be enough. I wear a long liner pad just in case. It's manageable . Still way better then before the surgery🥰🤞🙏 [ more ]
See all 20 replies...
J-Pouch ForumsGeneral Discussion
Do you eat eggs?
C Chook2
Lesandiego I'll eat them to help clear out the plumbing when I find myself straining. [ more ]
Chook2 Avocado on toast is good with some salt. [ more ]
Mrs P I do like a toast w/peanut butter or a bagel w/cream cheese. They just don’t keep me full enough. Well, maybe the bagel. I do try to watch my weight so I steer away from a lot of “bread”. I have never liked the consistency of oatmeal. I wish I did. I do like bananas, but not every morning. Still looking for other ideas… Thanks! [ more ]
See all 10 replies...
J-Pouch ForumsGeneral Discussion
Needing to lose weight
B Bubba1028
Chook2 Yeah I find soups are good for losing weight and eating vegetables. [ more ]
skn69 Hi Heather, Firstly, you have been through the mill! I guess that once our bodies decide to attack us, they really do not go lightly! As for the mesh, I do not know if it is the cause of all of my abdominal pain or not...I do know that I have a lot of abdominal pain (surgery tomorrow) and they will find out why shortly... I think that in my case it was a lifesaver. No sutures would hold my hernias together...they would just rip right through...so the mesh was a Godsend. As for the exercise... [ more ]
Chook2 I'm wanting to get fit again.bit worried of lifting heavy weights or doing an exercise.might buy a cross trainer.this is a great thread . [ more ]
See all 12 replies...

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Bill Johnson founded the J-Pouch Group in 1997.

After a life long battle with Ulcerative colitis, Bill finally had his colon removed and was given an ostomy in 1993. A failed attempt for a j-pouch and then many surgeries to get back his health gave Bill the motivation to create a web site dedicated to giving support to patients who have had or are considering j-pouch surgery.

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