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J-Pouch ForumsPouchitis
Constipation, pain, bleeding - do I have pouchitis?
L LIGuy11
AK-NY My best guess is that this has to do something with the weight loss drug you were on. I had severe constipation when I was on Cipro. It was exactly how you described. Key point - i stopped it right away after a week course and it still took me two weeks after to get anywhere close to normal. i still have constipation time to time and my go to has been prune juice. Any other suggestions would be highly appreciated... [ more ]
LIGuy11 Pouchoscopy went well. Doctor said no strictures, and he isn’t quite sure why I was having issues. He gave me Canasa suppositories for 30 days and told me to go back to see him when I’m done with them. Took a tissue biopsy just to be safe. Weird. Symptoms have gotten better though, and actually started improving the day before my procedure. [ more ]
Tom Havenner Yes I had a problem like that now I 68 years old and had my pouch since 2011 I had protrate problems I went to the ER and found I couldn't pee in a cup because of the prostrate wouldn't open with all that fluid in my bladder wighted down on the J pouch cause that problem of a simulated constapation now I was put on flow maxs and it helped with Cipro then found out that we with J Pouch are more prone to pass kiney stores after I pass one earlier this year and a short time later I begain to... [ more ]
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J-Pouch ForumsGeneral Discussion
Keep my job?
A AnnaP
drone3 I love my work as an animator, but it has become very difficult with the onset of inflammatory arthritis. I previously had two businesses, I had to sell one as it was too much. I now work part time , freelance from home and also look after my kids part time. My wife is working full-time now so we have adapted to our circumstances. I still dream about getting back to work full-time as an animator, I hope I get there one day, somehow. [ more ]
CTB23 I had to take time off work when I first got sick at age 59. I was unable to work for 9 mos. and dropped 35 lbs. from 115 to 80. I was anemic, on TPN, had blood transfusions, C-diff, shingles and just before surgery, I had Erhthema Nodosum. My job typically requires me to be on the road, but my employer allowed me to work reduced hours in the office at half the pay. It was better than nothing. After my third surgery, I started out in the office and eventually back out in the field, part time... [ more ]
lablover My husband was able to go back to his job after his operations. Now, he works from home, though he does travel for his job. He has had his j-pouch for 24 years. [ more ]
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J-Pouch ForumsMen's Health
Erectile Pain
SolomonSealSolomonSeal
Nuhorn I’ve had painful erections since surgery and some performance issues. Most notably, there is a deformity to my penis. The middle of the shaft gets thinner slightly. I’m gay and have been able to enjoy sex but have a good deal of anxiety surrounding it. I’ve been to a urologist once who just gave me a viagra scrip and told me to wait and see. I will be going back, but not to that urologist. Has this happened to anyone on here? I’d appreciate any wisdom found on this. [ more ]
CTBarrister I had the Foley catheter but no such pain- only a short burst of pain, sort of a burning sensation, when the catheter was removed. I got an erection within 24 hours of that catheter coming out, and it was pain free. What I remember most was the tremendous relief just to have that first postsurgical erection, because my surgeon had warned me of the possibility of impotence and had STRONGLY recommended I bank my sperm. I felt like celebrating at that moment, but there was unfortunately nobody... [ more ]
Wes Safado It has been three years since my surgery and I had this problem and over time it has pretty much gone away. I think in general, it just takes time for all those nerves especially to heal. [ more ]
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J-Pouch ForumsPouchitis
Should I be stretching out antibiotic use beyond every month?
A asdfqwer
CTBarrister Take as low a maintenance dosage as you can. If your frequency increases and you become incontinent at night resume the antibiotic regimen. I have been on antibiotics continuously for 25 years to treat Pouch inflammation. It’s always the strategy to try to get by with as little as possible but once you notice slippage be as proactive as possible in treating it. [ more ]
Raj Depends on what kind of solution you're looking for here. Many guys have been doing well on many years on continuous antibiotic use. I personally feel I should induce foreign substance as little as possible. My experience with UC taught me one thing steroids/ antibiotics could never heal me, if anything they just made me more dependent on them with every passing day. So even with one bout of pouchitis I just fasted for an entire day eating only bananas and breads. I went against my GI's... [ more ]
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J-Pouch ForumsGeneral Discussion
Can UC be triggered with sufficient stress?
A asdfqwer
Raj There's no hard and fast rule that its stress induced or inherited. If you have UC it does increase chances of the future generations of having it but still that too is highly speculative. I had a weak colon at birth and chronic uncurable diarroeha for the first 2 yrs of my birth. I was only fed on powdered milk and nothing else. It somehow "cured" at that time but trigered back in my teenage.I took alot if stress in my school days with studies and relations.But I've seen many people take... [ more ]
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J-Pouch ForumsGeneral Discussion
Colonoscopy or Endoscopy for J-pouch patients
J js
CTBarrister When was your last scope? [ more ]
js Thanks for all the responses! Before taking down, I had ulcerative colitis. The surgeon removed all my large intestine due to inflammation. It was not dysplasia. During annual check, my physician advice to see GI and get colonoscopy/endoscopy screen. I just wonder if this is necessary. [ more ]
CTBarrister If you have a history of dysplasia when the Colon was removed or any kind of chronic inflammation in or above the J Pouch, annual scopes are indicated. Otherwise it’s a discretionary call with the GI. Absent the above factors and any symptoms, every 3-5 years is reasonable. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Daughter wants to join the navy
VC Very concerned mom
MedicKern Mom, I do not know. This one really touches home for me. For as long as I can remember, I wanted a career in the Air Force. Folks, I was rocking it. Promoted to E-4 six months early. Selected for E-5 first time eligible. Straight 9 performance reports. Shortly after joining, the symptoms started. When I was diagnosed with UC, the Cold War was ending and we were cashing in the Peace Dividend. I was put out with a 10% disability; declared as unfit for worldwide service. #1, Mom, GET EVERYTHING... [ more ]
RossG Frankly, the recruiter knows nothing about medical issues and he/she is only concerned with getting likely candidates through the door and into the induction process. A history of IBD will be a red flag during medical assessment for many different reasons, including ability to perform duties, physical stamina, and also VA health insurance and liability considerations. Your daughter should perhaps go through the recruitment process so she has no regrets later on in life, but should be fully... [ more ]
CTBarrister I can understand your concerns, but as a parent on the financial side of things, if she does get into the service, you and your daughter can get some relief on paying for college or grad school, down the road. Several of my law school colleagues were still in the reserves, one in the US Navy, and he got law school paid for somehow, but during the Persian Gulf War he got recalled to active duty but never actually went overseas. He told me that was basically the price he had to pay to get the... [ more ]
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J-Pouch ForumsHelp! Need advice now!
13 year old son is having issue - need help!
A Allysonfitz
Doug K I hope it’s not IBD, but if it is, it appears that if biological drugs are given earlier in the disease process they are more effective. I hope you can get him seen soon. Many people who get treatment remain symptom free. So stay positive either way if possible. [ more ]
Jeffsmom Go to the doctor. Don’t wait, just get him there. It sounds like a flair. He will be ok, but needs help now. [ more ]
Momma Get the colonoscopy. I waited too long for my son. It was already pancolitis and in 3 months time, his colon was out. I feel for you. It is so stressful to worry about our children having this disease. Both my husband and son have jpouches. Been through just about everything, so I consider myself an expert of sorts although I wish I didn't have to be. My husband has a very successful j pouch for 13+ years now. UC runs rampant throughout his family. His niece (my son's 1st cousin) has a... [ more ]
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J-Pouch ForumsPouchitis
Probiotics for pouchitis - VSL #3
mamaswansmamaswans
Snowtifton ❤️
JeremyH Thank you all for your excellent t information looks like I’m going to purchase over the counter [ more ]
Scott F After the $80 coupon on the VSL web site it was about $640 for 6 boxes (120 packets) of DS. I hope your CVS can get it. Mine thought they could, but after a week turned out to be unable to get any. I suspect that the Visbiome attorneys may have written some strongly worded letters to the wholesalers. [ more ]
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J-Pouch ForumsGeneral Discussion
Imodium alternatives
S slouchypouch
slouchypouch Hey BR, it might be a good idea to buy extra in advance and stock up. It stands to reason that some vendors have ignored the DEA only temporarily until existing surplus stock runs out. That kind of pressure is serious business IMO. Adding to the issue is huge profit increases to CVS or anyone who goes with the DEA recommendation. It makes sense that they'll eventually clamp down like Costco did. I'm just being careful. I ordered that kilo from China so will post more about it after it shows up. [ more ]
brmcguire The cheapest option for Immodium that I have found is the Ship & Save subscription for the 200 ct bottles through CVS. I'm paying on average $15/bottle, so still quadruple the price of what I paid for it from CVS, but since Wal-Mart stopped carrying the 200ct bottles, this is the most economical option I've found. It is also nice that it is shipped right to my door on a pre-set frequency to make sure I don't run out. [ more ]
slouchypouch Maybe not ruffling feathers but I cause stress-induced peristalsis with my award winning bad attitude You should have seen me as a youth. I'm a glass half-full nowadays, at least after each episode of narcissistic rage. Gotta have a sense of humor to keep from killing myself. LOL [ more ]
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J-Pouch ForumsGeneral Discussion
Probiotics for ileostomy
K kru5hit
kru5hit Got it. yea VAL # 3 is quit expensive but will give it a shot and see if it makes any difference. Thank you for your response. [ more ]
Raj I took probiotics VSL3# one capsule a day regularly and not so regularly. Now I am off them. I dont see any significant change. Maybe you need to take much higher doses but I at low doses it hardly does a thing. [ more ]
Scott F The research suggests that high-dose probiotics (VSL #3 specifically) can reduce the frequency of pouchitis. If the bloating is due to pouchitis then that should be treated. Otherwise there’s no good evidence that it will help, but there’s no harm in trying. I take a very large dose of VSL #3, and it does help my chronic pouchitis, in my experience. Not everybody gets benefit from it. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Abnormal Liver Chemistries- Testing?
CTBarristerCTBarrister
Jfill21 Good news CT! [ more ]
CTBarrister I had my liver ultrasound today at Yale and it was read by the radiologist and my GI as evidencing a fatty liver. The comment my GI made was that I have a very “echogenic liver”, which apparently means more dense than usual towards sound waves. Since my liver chemistries were consistently normal for the last 3 years and I have gained weight recently, it’s kind of hard to ignore the sign that my body is telling me I need to lose weight. [ more ]
Lesandiego They only time my liver was an issue was due to congestive heart failure. Initially, they thought I was abusing Tylenol (not!). I had no idea the heart can affect the liver, but... it does. All lab tests are good for now that I have semi-recovered from my heart failure incident. [ more ]
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J-Pouch ForumsGeneral Discussion
New diagnosis for my 13 year old
A Allysonfitz
Scott F Have you tried Imodium or Pepto-Bismol in the meantime? I hope it’s just a lingering GI bug, but the colonoscopy should help answer that question. The family history can help clarify the diagnosis, but it can also distract from other possibilities. Giardiasis (and other parasitic infections) should be tested for. C. dificile needs to be ruled out. Probiotics probably won’t do any harm, but they probably won’t do any good, either, IMO. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Back pain and cipro/pouchitis
F feirs1
feirs1 Hi - just to let you know the back pain did dissipate over time so I don't think it was really tied to the Cipro. Must have pulled something but for now my back pain is no longer giving me a problem. Hope you improve soon as well. [ more ]
Slee Holy! I could have written this same paragraph this week. I too have been on long term Cipro for chronic pouchitis which is controlling it beautifully, but now have lower back pain. I am dying to know what ended up happening with you ( as I see it's a June 2018 post). I Hope you got answers and are better. Still on Cipro? Thanks. [ more ]
GrannyJ64 I have severe lower back pain when I have pouchitus. It only hurts when the pouchitus flares up. When I use Canasa suppositories that treat the inflammation it makes the back pain better. This is how i figured out the pain is coming from my pouch. GrannyJ [ more ]
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J-Pouch ForumsGeneral Discussion
Canadia / yeast infection
A Alvis1965
Alvis1965 my fungus is all internal unfortunately [ more ]
CTBarrister For guys it’s usually where the sun don’t shine- arm pits and leg pits and under the scrotum (jock itch). When I have gotten yeast infections due to antibiotics it’s always been in these areas. You can knock it out by using Zeabsorb antifungal powder and by tanning naked, for just 5 minutes. Fungi don’t like sunshine which is why you only see mold develop in moist and dark places. I also use a blow dryer after showering to keep arm and leg pits dry. Never put ointments or cream on a yeast... [ more ]
Alvis1965 thats great but I am a man my yeast is in my mouth and stomach [ more ]
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J-Pouch ForumsGeneral Discussion
camping/backpacking dealing with poops
S scallop
Leah S You could bring wipes & biogradable toilet paper. However, it’s rough & doesn’t roll off easy. Bring a dark plastic bag & carry out your trash. Just skip the coffee in the morning You can do this. Others will be using the woods too. [ more ]
BillV Just bring a small shovel or trowel with you. I used to work on a trail crew in the back country for 10 day straight periods of time and just dug a hole when nature called. [ more ]
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J-Pouch ForumsGeneral Discussion
Probiotics - how much?
JK Johnny K
Scott F Kefir is very different from VSL #3, and hasn’t been studied in J-pouchers, so no one knows if it’s likely to be effective. Even trickier is that we have a variety of ideas about what effect we’re looking for, and the most likely, demonstrated effect (less frequent pouchitis) is extremely hard to measure for a single person. [ more ]
grateful would it be effective to just drink kefir. Will that provide me with billion of strains? I am taking VSL#3 capsules right now but also was told by CVS that they probably wont carried any longer. I am just disgusted. Like I don't spend enough time and money on researching whats best for my pouch etc.etc. [ more ]
Scott F The manufacturer reports some supply problems: “Is VSL#3 ® still available for purchase? Some pharmacies are unable to obtain VSL#3 ® due to a temporary wholesaler supply issue. There is no manufacturer recall and VSL#3 ® continues to be available in retail pharmacies. In addition, customers can purchase VSL#3 ® Capsules and VSL#3 ® Unflavored Powders directly through this website by clicking here .” (Not sure if the link to the VSL web site will work as posted) There has also been a recent... [ more ]
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J-Pouch ForumsGeneral Discussion
Dizzy-Shaky-lightheaded... related to J-Pouch?
lholdemlholdem
Scott F This sure sounds like dehydration, and the loss of the colon is a substantial risk factor for that. A pretty reliable way to tell if you’re hydrated is if you’re peeing light-colored urine at least a few times per day. [ more ]
Raj Multiple people here have that issue, its discussed unde the post - " waking up refreshed a thing of past ?". You should definitely check it. I dont feel any dizziness as such in morning or the day although I have cutback sugar alot in my diet. My morning routine is pretty simple. A cup of tea with 3-4 brown bread with butter and 1 bread with peanut butter. One scoop whey protein before I leave for work. I do a light lunch some eggs and rice and black coffeee or another cup of tea. If... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Emptying pouch
P Pouchbro
Winterberry Hi, Pouchbro. You need to eat something or your blood glucose will drop. White potatoes, white rice, white pasta, white breads, bagels are "simple" carbohydrates. Very starchy, no fibre, and they break down into sugar very, very fast, then you have massive gas and bubbling in your stomach. Can you try eating "complex" carbohydrates? Complex carbs have soluable fiber so it takes a bit longer to break down, and won't become sugary starch in your body. Look up lists of simple / complex... [ more ]
Raj Its my personal opinion bro, whenever I take imodium the gas build up feels either increased or its just that my output becomes so hard I cant even pass it. For the gas part the few things I do is give myself some rest, never strain on toiler ( once I strain the next time the pressure and gas weirdly increases). I eat plenty of bananas like 6-7 in a day. For me banana and brown bread are the top 2 carb sources that dont bother me or feel gassy. Eggs, meat , dairy ,sugars , potatoes are... [ more ]
Scott F Just to be clear on one point: I wasn’t telling you to cut out carbohydrates (though CT probably will). I was saying that if you stop sugars and don’t stop starches you haven’t changed much of anything. Potatoes and rice are mainly starch. I have no food advice. If you’re trying to figure out what foods give you trouble, an elimination diet using *simple* foods is a pretty reliable method. [ more ]
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J-Pouch ForumsGeneral Discussion
Post Takedown--One Month--Progress and Advice Please
N Nick10136
Nick10136 Thanks all for your helpful suggestions. Nick [ more ]
JenJen Wow -- congratulations Nick, you are doing great! Your frequency is better than average, especially after a month or two! As for the Gas X, it didn't really help me much, so I only ended up only taking it if the gas was painful -- I think it helped pass it. Even as my system "matured" it was never able to pass gas like with a colon... but that is pretty typical. I didn't have acid reflux issues, so I never took Zantac and don't really understand why that would be prescribed for your stomach... [ more ]
Winterberry Hello, Nick10136. It's nice to know you are doing well after one month. I manage consistency and frequency with food and it works really well for me. I haven't used any fiber supplements since shortly after takedown. There are times when I "produce" perfectly formed normal stools, as if I had a perfectly healthy colon! I eat lots of roasted zucchini and, believe it or not, lots of roasted Brussels sprouts, and soluable fiber foods. Lots of basmati rice, or plain white pasta with chicken and... [ more ]
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J-Pouch ForumsPouchitis
Pouchitis Linked to Seasonal Allergies?
A Antone
Still Standing I remember when I was in the hospital for my j-pouch surgery that the nurses said they saw an increase of flare-ups for Crohns and UC in the spring and in the fall. I don't know what causes this or if pouch flare-ups seem to occur on the same schedule. My pouch flares-up when I eat to much sugar, starches, or get way to stressed for my own good. Interesting phenomenon though. [ more ]
TMNoe Yes me too - every Spring especially. [ more ]
jeane I don't have seasonal allergies but I can say that I always had a colitis flare up with season changes and my pouch behaves the exact same way re pouchitis flares. My father had the sane issues with season change and his colitis flares as well, esp springtime. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Surgery and diet
Cinder23Cinder23
Cinder23 Thanks for the response Hungry Hampster. Yes this is part 2 of a 3 parter. The keto is a high protein/fat and low fiber/carb diet so maybe it will be beneficial? After my first stage I recovered fairly well. I was out of the hospital and back home 3 days post op. This being said I do think you are right and I should ask my doctor. I have a pre op appointment Friday which I will ask and maybe I’ll add a bit more carbs back than what I’m currently doing now but still try to keep it a bit... [ more ]
HungryHamster EDIT: I clearly was not thinking when I wrote this post. My J-pouch procedure was done in two steps and for some reason I assumed that yours was as well. Hence why I repeatedly mention the functional changes that come with the J-pouch. I am guessing that this is step two out of three, and so most of the information that I have provided will not apply. Regardless, my overall point still stands and I, personally, would not alter my diet around a surgery and you should discuss the pros and cons... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Problems while sleeping- no control
C Crazyred
Raj Hello, you're pouch is pretty new so some inconsistency will be there for a few months. Do kegels everytime after you pass a bm. I used to squeeze my butt for few seconds and relax after every bm, I still practise it in morning and before bedtime. I can always get up before any leaks that way. Also I'd suggest not to eat a very high carb meal at bedtime. I used to gorge upon chicken breasts, nut butters, eggs etc. Also last meal by 8 pm if ai sleep at 12. Metamucil helps bigtime to keep... [ more ]
Scott F This is just a 5-week-old pouch, so some adjustment is expected. That being said, there are some things that might help: 1) Stop eating around 4 hours before bedtime. 2) Try some soluble fiber (e.g. Metamucil or Konsyl) with dinner (and maybe with breakfast, too) 3) Try a *small* fatty meal (e.g. a spoonful of peanut butter) at bedtime. 4) Make sure to fully empty your pouch at bedtime. 5) Try Imodium or Lomotil at bedtime. Lomotil works a bit better for me, but it requires a prescription. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Is a sigmoidoscopy possible with J-Pouch?
SeirlaSeirla
CTBarrister As far as the value of being awake to see the inflamed areas, this is 2019 and any GI doctor worth his or her salt takes digital photos, maintains them in your file and compares each year’s scope pics with the prior year’s, otherwise inflammatory trends would never get noticed. Therefore I make an appointment with my doctor a week after the scope and we analyze the pics together. I have no need to see the pics as they are taken. They aren’t going anywhere. My GI doc emails me the pics and I... [ more ]
Amyteach I have had my pouch since 2004 and recently had a flex sig with my GI doctor. This past year I had been feeling pretty sick and knew that I had to make an appointment, (I had not had a scope done in 3 years). I was able to have my procedure done without any sedation. My doctor was able to show me my inflamed spots and was able to take biopsies. It only lasted for about 5 minutes and I really felt fine afterwards! I was so excited when it was over and thought wow, that was easy! I hope that... [ more ]
Pouchbro Absolutely. I had a Sigmoidoscopy a month ago and they took a biopsy to check from Chrons, I got to watch it all happen! Even though I was sedated I stil remember seeing the camera going up my pooper! haha ! I got to see the inflamed spots and it was really cool to see what the inside of my pouch looked like! [ more ]
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J-Pouch ForumsGeneral Discussion
Tips for Managing Excoriated Skin?
SpookySpooky
Spooky Thanks! A portable bidet is a good idea until I can get something more permanent sorted out! I will try this. [ more ]
Winterberry Hi, Spooky. I have a Neo Bidet from Amazon with hot and cold water. It cost less than $100 and worth every cent, and even less if you get only cold water. But warm water is so comforting! It does not need electricity at all. My bidet hooks up to the same hot and cold water lines that supply my sink. The box has all the connectors, water lines, etc. that you'll need. My plumber did it, but there are tutorials on the internet if you are handy at that sort of thing. If your water lines are... [ more ]
n/a In a pinch, you can also rinse off with warm water in peri bottles. There are also "portable" bidet bottles available, but i didn't have the dexterity for those, apparently. All on amazon. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Anal / Rectal / Talbone pain and don't know what to think
I Ikh
Spooky You mentioned tailbone pain, this could be a pilonidal cyst, especially since you mention the pain when you are just sitting. Google that and see if it matches your symptoms. Hemorrhoids and fissures are another possible cause for your symptoms. Fissures are very often described as a sensation of "passing shards of glass" with BMs, to give you an idea of what you might be experiencing. Hemorrhoids will often feel like a swelling or a bump and can protrude from the anus. Something else to... [ more ]
Winterberry Hi, IKH. Search the Internet for information on "levator ani" and also "proctalgia fugux" to see if the symptoms match yours. It could be swelling from hemmoroids or an anal fissure, which is very painful. Have you tried a sitz basin? Sitting in very warm water can help heal internal injuries by bringing blood circulation to the area. It is very soothing. A hot bath works just the same, although a sitz basin is convenient because it saves stripping down and sitting in a big tub of water. You... [ more ]
Jfill21 It may be cuffitis and not pouchitis (seeing blood is a good indicator). You might be better off with Canasa suppositories than antibiotics. [ more ]
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J-Pouch ForumsGeneral Discussion
Negativity
P Pouchbro
Stew Moore Will be 10 years since my takedown this December. I battled UC for over 30 years then was diagnosed with stage 2 colon cancer in 2009. Thank God it was caught in time through a colonoscopy. I had my surgeries at the Cancer Treatment Center in Zion, Illinois. The commercials you see about CTCA are true, it is a wonderful facility with fantastic surgeons and nursing staff. I owe them my life as well as The Good Lord. I'm living a very normal life, working out, playing golf and coaching... [ more ]
skn69 I would not say that this forum 'saved my life' but pretty close. I logged on and connected with others when my life was at the bottom of a black hole and I had nobody on this planet who could understand me. I cried, complained, vented, raged against the medical professionals where I live and the lack of options offered to me. I had suffered in silence for years and the dam finally burst. I found kindness, warmth, understanding and help here. Lots of help. I made great friends, possibly a... [ more ]
Its Not About Me ❤️
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J-Pouch ForumsGeneral Discussion
Stabbing Pain in Rectum
A anicholea
Winterberry Hi, Anicholea. I experienced similar pain, mine was a terrible and sudden stabbing pain, always on the left side too. It was one episode over a week or so. I used a sitz basin with very warm water to ease the muscle and encourage good blood circulation to that small internal area. It never happened again. Here is some information I found on the internet during my experience. Rectal pain symptoms The pain of proctalgia fugax is sudden and intense, usually lasting less than a minute. But in... [ more ]
Raj I usually get that kind of feeling if I have to hold for more than 6-7hrs,thats rare. Stitches usually heal up in a year . The oain you're experiencing maybe due to excess build up of gas . I get sharp tailend cramps when I have too much gas also continuous urge to go. Maie sure to empty your bowl completely eveytime you go to the bathroom. Lie down and let the gas pass if need be. It sounds a bit weird but does the trick. [ more ]
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J-Pouch ForumsGeneral Discussion
It Can Work Out. Really.
ATXGuyATXGuy
Scott F Thanks for the update, ATX. I’m glad it’s going well! [ more ]
BillL ❤️
Raj Your response really helps everyone here. Its been 7 months post takedown. I login almost daily here to see issues , post my own and try to know more about those who've been battling this dreadfull disease. Also I have very little to complain about. With UC life was worse than HELL. But post op I could go on trekking in just 3 months. I've done my graduation and now working in a dream job. I plan to take a trip soon in a year. 4-5 bms a day I dont even care even when I had to go 10 times ,... [ more ]
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J-Pouch ForumsGeneral Discussion
4 hours and 24 mins until my takedown!!!
NickPNickP
Former Member ❤️
Stew Moore Nick, I haven't logged on to this site in a long time but have been reading your story. I had my reconnect surgery done in 2010. What you have experienced in not unusual. Your body needs time to adjust and heal. You have been through a lot of pain. I remember lying in bed when I got home and prayed to the Good Lord to take the pain away and heal by body, which He did. It took me almost a year before I felt normal. I'm here to tell you that this surgery is remarkable and I'm living a... [ more ]
RunJ Hopefully you are having better luck adjusting. Trying to be patient those first couples months can be tough! Learning how to fully empty my pouch and get rid of the gas has been my biggest challenge so far (5 months post takedown). A lot of times it just comes out in one glorious BM. Other times I feel like I could sit on the toilet for a decade and nothing would happen. I have found some luck with getting down on my hands and knees in front of the toilet (down nose dog). The position of... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Cortisone Injection - Arthritis
drone3drone3
Scott F Bedery, a cortisone shot shouldn’t do any harm to your pouch. [ more ]
bederyparis good day to all i have a tendinitis in my shoulder - are there any eventual complications that can arouse to my pouch from getting a cortisone shot ? thank you bruno [ more ]
Jan Dollar Drone3, the thing is that with inflammatory arthritis you can have random flares that can be global, or just hit one joint. This is true even when you are on biologics. Treatment does not cure you, but just suppresses the disease. I've been dealing with this for over a decade, so I understand your pain. Jan [ more ]
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J-Pouch ForumsPouchitis
Biologics
M Mjmjfy
Mjmjfy CT Thank you for that web site, that is exactly what I was looking for, will start on their recipes. Mary [ more ]
CTBarrister The UMass IBD-AID diet is the only diet out there developed by medical professionals (at UMass) specifically for persons with IBD: https://www.umassmed.edu/nutrition/ibd/ibdaid/ Some of the recipes on that menu sound delicious. [ more ]
Mjmjfy Thank you for your response. Not quite as worried. Am going to try and cut the sugar, and moniter any carbohydates. Does anyone know of a good dietary site on diet for people with pouches. I know it is mostly trial and error but would like a strong starting point. Mary [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
pain with sex
K kk
Shellie Oops!! Meant... You are not alone ))) [ more ]
Shellie You at not alone. I don’t know where you live but there are female Physical Therapists that specialize in pelvic floor issues and can help you learn how to relax these muscles and even use vaginal dialators that are available on Amazon to make sex less painful. [ more ]
skn69 Lube, lube, lube...And more lube. And being ready, relaxed and happy helps too. The rest is so different from girl to girl...I suffered because they had not just removed my colon but closed everything off down there too...so there was scar tissue, stiffness in an area that was supposed to be stretchy and lots of bleeding every time. One of my ex-boyfriends complained that it was like being with a virgin every time...not fun at all. Even less fun for me... If I say that the more often you... [ more ]
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J-Pouch ForumsGeneral Discussion
Diet advice
Jmitch39Jmitch39
CTBarrister The UMass IBD-AID diet is the only diet out there developed by medical professionals for those with IBD: https://www.umassmed.edu/nutrition/ibd/ibdaid/ [ more ]
Winterberry Before surgery and during my recovery, I found lot of information about food and j pouch concerns on the University of California San Francisco site. It has information not just for our type of surgery, but all kinds of surgeries and health information. Just key in "j pouch" when you're on the site and it should give you lots of links and subjects. The site is ucsfhealth.org I hope it helps you with food. [ more ]
Mjmjfy Could someone let me know where to get a copy of a diet sheet. When I had my operation back in 1988, there was no advice. Am having some trouble with pouchitis and want to put myself on a diet so might like to see what is on that diet sheet so I can play around with it. Thanks Mary Many good points are made on this blog [ more ]
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J-Pouch ForumsGeneral Discussion
Dr Remzi leaving Cleveland Clinic ??
PouchomarxPouchomarx
ljk I just saw Dr. Remzi, this guy is brilliant!!!! I feel very comfortable with hisTx plan he has for me! Although not the greatest plan and have a long road ahead of me! But trust in him. [ more ]
Determinedgodys God, I should have checked the website! Dr. Costedio apparently has also left the Cleveland Clinic and is now with University Hospitals in Cleveland. My mistake. [ more ]
Determinedgodys Greetings, all - Just some additional info to this thread. Dr. Remzi was actually the head of the DDI at the Cleveland Clinic for several years, not just a couple as a previous post indicates. He was already running the DDI at the time he did my one-step in September 2009. For those of you considering him as a surgeon, I would absolutely travel to NYC to retain him. I was heartbroken when I heard he had left. However, for those searching for another Cleveland Clinic colorectal surgeon, I can... [ more ]
See all 64 replies...
J-Pouch ForumsHelp! Need advice now!
Cured? No. Disabled? I think so.
P Pouchbro
Former Member I am sorry to have strayed off course in my prior post , it seems with my diminished health and emotional well being I degrade into a lower orbit. [ more ]
Former Member Pouch bro ; I will have to apologize for not needling to apologize. I do not have some of the adverse side effects or , associated symptoms related to having a ileoannal reconstruction . I guess nobody dose being that we are all cured, right. I know that there are systemically several conditions and combinations that Social Security uses to determine a disability . I was trying to plan for when I got worse and I was employed working as long as I could. Social Security list the pouch surgery... [ more ]
Pouchbro This is very insipiring and I apologize for assuming. As they say, assuming makes an a** out of u and me. a-s-s-u-m-e ( On a lighter note, someone feel free to insert poop joke here) [ more ]
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J-Pouch ForumsGeneral Discussion
travel to Africa?
S scallop
skn69 First off, it doesn't matter where we go or how far we travel, we all have specific issues that worry us...Bathrooms, cleanliness, hydration, disease, medications... Some of us are more susceptible than others to diseases and dehydration. Others are just as if not more resistant than the coloned people out there. It just depends on your physical condition before you leave and where you are headed. I have traveled a lot and all around, with my k pouch (a whole extra set of... [ more ]
RHolt I have done a lot of travel internationally with my J pouch and have not had problems, although I do worry about catching a GI bug and getting really dehydrated. I would talk to your GI doctor or a travel medicine specialist to plan for your trip: make sure you have some antibiotics to treat a GI bug. Consider chewing a pepto-bismol before each meal. I have been told the "bismuth" actually protects against some germs we may eat. If you are really concerned, avoid ice, salads, and fruits with... [ more ]
brunofrombelgium I travel a lot with me jpouch , to asia , india china.. . Never had any issues, but by careful with food and water . Bring meds and use Sint Marks solution to counter dehydration. You can injoy the world 💪 [ more ]
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J-Pouch ForumsHelp! Need advice now!
Death?
EricEric
JanW2 Eric, My heart goes out to you, I feel so very sad for you and hope the return of your Dr. has helped? Trying not to be negative, but, sometimes it doesn’t matter what we eat or even if we can not eat almost anything, it won’t work.You probably have tried everything possible. Drs. Can’t do it all and I believe they just give up if they can’t help us. Even the best of them.Try as the may. My prayer for you is that you have loved ones around you that haven’t given up on you and will stick by... [ more ]
skn69 Hi Eric, There are no words to express how much I feel for you and understand the absolute anguish, sense of loss, frustration and pure black hole that you are in. You are damned if you do and damned if you don't and you see no way out of the black hole that you are in. Yes, you know well that I was there in the same hole, in the same city with the nearly same situation. I will Not tell you that it gets better, I will not tell you to pray or to light candles or anything else...I will tell... [ more ]
brunofrombelgium ❤️
See all 14 replies...
J-Pouch ForumsGeneral Discussion
Costco is now limiting loperamide purchase to one box.
S slouchypouch
slouchypouch It's much cheaper to pay cash. Maybe 7 dollars for that same amount of pills. You are losing money. If you are in the USA, buy at Costco and buy OTC bottles. Another pro tip is check Costco for cash price on any medication you take chronically. Ask for 350 pills without insurance. It's often much much cheaper to pay cash and not use insurance at all. Buy a years supply. In the case of imodium the pricing I found was higher at the pharmacy (cash) than OTC in the Kirkland bottles but most of... [ more ]
slouchypouch Sorry this is way late but the epidemic insofar as patients is fabricated by politicians for votes. The CDC data is in plain sight for anyone to read for themselves. There are 50k more OD deaths today since 2011. Prior there were about 20k. So call it 70k. The new 50k dying are purchasing street drugs, usually heroin adulterated (laced) with Fentyl. It's terribly sad but it is not my fault or your fault. I take pain medication responsibly and don't need big brother creating a diarrhea... [ more ]
AARON I get 200 by prescription for like $40 [ more ]
See all 43 replies...
J-Pouch ForumsGeneral Discussion
Blood/General Discomfort in Rectum
E EmmanuelM
RHolt Hi there---I agree with the others that this could be an anal fissure, with the pain and bleeding. I think it is time for you to get a medical consult and figure it out that way. Have you gone? What did your doctor say? Pain with each BM and the # of BMs you have each day make this pretty unsustainable and uncomfortable. I hope you have sought medical help! (3 painful evacuations in the middle of the night each night would quickly make me sleep deprived and crazy!!!) [ more ]
EmmanuelM It's been steady since takedown but the burn/sting seems to be worse? [ more ]
Raj What is its colour ? Bright Red or Dark blackish ? I had blood once same on just the toilet paper, stark red coloured. It was because I had overdosed imodium and it constipated me. To get things out I started pushing super hard whoch eventually led to blood coming out. When I talked to my surgeon about it he said the straining can very easily cause little blood to ooze out. He advised me to make sure I relax myself everytime I sit on the toilet seat. Let the pressure build up. But if its not... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Haywire Ostomy??? Just Got Out Of Hospital.
Clever1Clever1
duck11 I can't remember how they tested for norovirus--i think maybe they knew from the symptoms and that there was an outbreak of it going on. Either way, the IV and some hospital rest worked wonders. Jenjen I love your wording of "upside down"! So many doctors seem to treat us the same as people with colons "just drink more water" and its so true how fast you can feel crappy from electrolyte imbalances. [ more ]
JenJen Alan, Glad you got in when you did even if possibly a day late and hope you’ve gotten better by now. I get a similar isue about once a year it seems — I’ve deduced it’s probably a virus as for me it’s a much more severe reaction than with foods. I’ve been chastised in the ER for going in too soon and other times too late — most people with a colon, even med professionals, just can’t understand what we’re dealing with. Drinking more fluids, while helpful, can only do so much in a body with no... [ more ]
Mysticobra I know one thing. When I get diarrhea (and I know when I do). It doesn't hurt like it used to. It was so painful the regular way. (butt burn) I'm definitely not making light of your situation. Temp ileos are notorious for being a pain in the ass to deal with. I've had one. Permanent now. Having diarrhea with a stoma is of course something we have to monitor closely as it will dehydrate us quicker than a normal colon person. But even being normal we got dehydration from diarrhea. But being... [ more ]
See all 9 replies...
J-Pouch ForumsHelp! Need advice now!
Bleeding
P Pouchbro
Scott F My best guess would be cuffitis, but anything that erodes into a small blood vessel can do this. Have you had a pouchoscopy? Once treatments aren’t working then it’s especially important to reconsider the diagnosis. There’s a good chance that you’ll be fine until your GI appointment. If the bleeding recurs in quantity then that changes, of course. The ER is likely to be a very disappointing experience unless you’re experiencing life-threatening bleeding. Why do you think your doctor will... [ more ]
See 1 reply...

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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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