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J-Pouch ForumsHelp! Need advice now!
advice about NSAID use
J JHendrix
JHendrix Thanks Scott. Yes, I definitely meant stay off! Hopefully things will settle. I do have a scope scheduled in a few weeks. But I guess it wouldn't show bleeding if, as you say, it is higher up in the gut. It may well be food residue. As soon as I start to feel a 'bad gut' I can go down the 'worst' road. [ more ]
Scott F If the coffee grounds are blood (rather than food residue) then it’s not from your pouch, but from farther up the GI tract. Blood from the pouch would be red. NSAIDs can sometimes cause problems anywhere in the GI tract, including the J-pouch. I hope you meant to write “stay *off* the anti inflammatories and let it settle and heal.” Most of us can tolerate occasional NSAID use, but continuous use is pretty risky. [ more ]
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J-Pouch ForumsGeneral Discussion
VSL#3
A akteacher
AMB Did you see this study enrolling patients I just read about posted as a topic here. https://www.j-pouch.org/topic/...mula-study-is-posted . Inclusion criteria is 10+ bm's/day, pouch 6 mos+ and pouchoscopy within a year. [ more ]
Sara Marie Ha! Right. [ more ]
Scott F The extra strength is just double the amount per packet (900 billion CFUs vs. 450 billion CFUs). Studies do look at dose but they don’t care whether it’s one packet or two. My insurance covered VSL #3 DS until August, when I went on Medicare, but I had a year-long fight to get that. Very few insurance plans will cover it without a fight. There’s almost no research that names Visbiome, even though that’s the formula that got tested (under a different name). Try explaining that to your... [ more ]
See all 14 replies...
J-Pouch ForumsGeneral Discussion
A restful night's sleep?
G 97Guy
Former Member ❤️
Sara Marie Do you ever think that so many enemas could mess with your gut microbiome or your electrolyte balance? The frequent enema plan sounds attractive to me, but I wonder about doing it every day. Did the doc address these types of things when approving it? [ more ]
Bill K I’ve had jpouch for 2-1/2 years. Had chronic pouchitis from the start. Had ulcerative colitis for 30 years. I do a warm water enema right before bedtime. Usually sleep 6-7 hours. I also do enema in morning. I have a total of 3-4 bm usually start in late afternoon. Dr approved the warm water enema. Generally takes 5 minutes to empty jpouch. Ask your GI Dr about this. I only take Cipro and Imodium. Good luck. [ more ]
See all 15 replies...
J-Pouch ForumsHelp! Need advice now!
Now I am constipated
BA Bill A
Scott F There are at least three very different conditions that get called constipation here: 1) hard stools that the gut can’t move effectively, 2) partial obstructions that block the free movement of gut contents, and 3) problems emptying a full pouch. If you don’t work out which of these is going on then any solution is likely to miss the target. [ more ]
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J-Pouch ForumsGeneral Discussion
When to take an enzyme capsule?
WinterberryWinterberry
Sara Marie I hear that. 20 years here. [ more ]
Former Member I bought their Daily Maintenance Enzymes. It has a number in the bottom right corner 80034755. I have trouble with a lot of veggies and dairy. When I take the enzyme first I have less gas and less urgency. My GI only talks of probiotics, never enzymes. I’ve only taken one a day before lunch so far. Hope it keeps working, it’s been 10 years and seems like the learning never ends. [ more ]
Sara Marie Hi Rayanna! Which foods do you have trouble with and which kind of Flora enzymes did you buy? There are many types, it looks like! Thanks! Sara [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
A Rough Night / Morning
C capper
Sara Marie That's a lot of mini-wieners! [ more ]
Mysticobra That's a long time. 23 years. 👍 [ more ]
capper Scott, sorry for the slight misunderstanding. Mushy is typically good for me. Watery seems the worst and most unpleasant. I don't typically get much harder output than mushrooms, although sometime when my fluid levels are down, it can get firmer. Last night I officiated another game and got home very late. I chose a couple of pizza pops because I needed something solid that wouldn't run through me like the night before. I ended up waking up early, eventually going back to sleep for 3-4... [ more ]
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
Norovirus?
chili123chili123
chili123 Cleared up after 5 days. As always, thank you for your support ❤️ [ more ]
chili123 I'm certainly taking a stab at norovirus, just based on symptoms. Definitely ready for it to be over [ more ]
Scott F Antibiotics are not helpful for norovirus. Many of us are trusted by our doctors to have antibiotics on hand to promptly treat pouchitis when it occurs. The presumption is that we’ll use them wisely. [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
inguinal hernia surgery w/ J pouch
V vince66
Jaypea Yes, that's exactly what I mean. Structurally your surgeon shouldn't be anywhere near the pouch. [ more ]
vince66 thanks / I take it when you say affecting the J pouch you don't mean damaging the J pouch [ more ]
Jaypea Nope, your inguinal canal and the J-Pouch are a long way from each other. Should not have an effect at all. The stress of surgery and the effects of anaesthesia are the only things that might affect the pouch. [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
J-pouch recovery, butt burn
A Adry
Sara Marie Flavored coffee from starbucks probably has a lot of sugar, and people complain of sugar causing pouchitis, but I don't know that it causes the burn, but it may cause extra excretion due to the diuretic effect. (A coffee & cigarette first thing in the morning used to be a sure path to a BM back when I had a colon.) I like the calmoseptine because of the menthol cooling action. Zinc/calamine also protects and helps heal the tender tissue. I have also used non-menthol zinc pastes on my bum... [ more ]
Jaypea I used a barrier cream (zinc based) for about 6 months before things got better. I find that if I eat blueberries or too much tomato the burn is much much worse. I also found a cream (Dimethicone) worked brilliantly and wasn't as sticky or pasty as zinc. Calmoseptine, which some people think is brilliant didn't work well for me as the menthol in it was too hot for my delicate nether regions. [ more ]
See all 2 replies...
J-Pouch ForumsOstomy & Skin
Need Suggestions
Y ytcrockpot
Laura Fogelman Convatec is a great company and their nurses are very helpful, supportive and willing to send samples to patients [ more ]
Laura Fogelman The only thing I can think of that might help is to wear a surgical glove when trying to cut her appliance. I have a K-Pouch and use a catheter. I also have arthritis in my hands but if I remember to down a glove it does give me some extra support. I hope this helps. Laura [ more ]
n/a How nice of you to reach out for your friend. I might suggest looking into moldable wafers. I also have arthritis in my thumbs (having surgery for it in a few weeks), and have found that the convatec moldables are SO much easier on my hands, and easier to shape/fit around my weirdly shape stoma than cutting. You can get samples by calling convatec and discussing with one of their nurses. Let me know if you need their number and I'll dig it out for you. [ more ]
See all 3 replies...
J-Pouch ForumsPouchitis
Has anyone tried alternative therapies for pouchitis
F FelixGust
SteveG The taste of Flagyl was never a problem for me. There was a little metallic taste some hours after taking the pill, but only if I took the full dose. I was taking a small dose of both Cipro & Flagyl for about 3 years till recently. Right now I started a new biologic therapy with Skyrizi. During a hospital stay due to a Covid infection (my first, the problem was not flu symptoms but diarrhea as usual, associated with weight loss, circulatory problems, kidney failure) in November I was... [ more ]
Brellis @Anna625 its pretty strange that you can have a healthy pouch for 20-30 years and then it starts acting up. What did your diet look like before? and did it changes somewhat before your pouchitis started? [ more ]
loralie78 ❤️
See all 81 replies...
J-Pouch ForumsHelp! Need advice now!
Xifaxin cost $1000 for 14 days!
H happytimes
kta This is an old post, but I pay $350.00 a month at israelpharm.com [ more ]
kta I am on Medicare as well and will be ordering from Canada when I need my next refill. I did originally pay over $1000 for a 30 day supply. Now they have denied me. [ more ]
New577 That’s insane to me. If it were me, I’m not waiting so long. If u are convinced it will work, I would do the Canada route. when I had private insurance it was not covered at all. I am on Medicare part d now, so xifaxin is not not covered on any of the plans. Fortunately, bactrim worked for my SIBO. I will say that btw the denials and appeals it was very frustrating and before I knew it weeks passed by. [ more ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
Internal iron staples, are they really safe?
I Ikh
Former Member Yeah that makes sense! Let me know how it goes! I am wondering that too now. I am not sure if I have my staples personally. [ more ]
katenet Thanks Lauren i guess my pouch doctors concern is an allergic autoimmune type response to the metal [ more ]
Former Member As far as I know, some people still have them and some people do not still have them. I think the only way to really know is to have radiology work done. As far as I have heard, they are safe. A doctor did say not to have anal sex: one of the reasons is because the staples might hurt the penis if they put the penis in the anus and the penis could also ruin your J-pouch. That is what i heard when someone posted their story on here. As long as you do not receive anal sex it is safe. [ more ]
See all 19 replies...
J-Pouch ForumsHelp! Need advice now!
J Pouch backed up
SJ Stephen J. Thompson, MD
Former Member 2 bottles of Magnesium citrate. I usually take one when I am backed up and that helps. You can start slow with one and see how you feel. [ more ]
Scott F Most adhesions are best treated by ignoring them (almost all of us have plenty of adhesions after surgery). If they are causing a major disruption to your life it can be worth having surgery to cut them, but the risk is that sometimes the surgery makes things worse instead of better (and sometimes it’s a huge improvement). Adhesion surgery almost always causes new adhesions to form. If you have to have abdominal surgery for a different reason a patient and kind surgeon may take the time (if... [ more ]
AK-NY Hi all - exactly same things here. prune Juice (NON pulp) is usually my go to. One small cup or those small cans do the trick. surprisingly I have a similar situation - although the juice helps, I have to distend my stomach and lean back for the final push of gas or poop and ALSO most importantly - while leaving back on the toilet and distending - I press the exactly middle of my abdomen - right below Ostomy towards navel / I feel like that gets things moving. Scott - how do u treat the... [ more ]
See all 12 replies...
J-Pouch ForumsGeneral Discussion
Getting rid of J-Pouch
D Derrick
Former Member I am sorry you are having problems hon! I was the opposite of you, I had severe problems with my ostomy but not problems with J-pouch. Everyone's body is different. I will keep you in my prayers, if you need emotional support you can always message me. [ more ]
Mysticobra Derrick. You can pm me anytime if you want to talk private or have any questions. Richard. [ more ]
Derrick Richard, I appreciate your insight as that is very helpful. There’s not a lot of data on these things unfortunately so I really do have to rely on others experiences to see what can happen and how it is for them. [ more ]
See all 18 replies...
J-Pouch ForumsHelp! Need advice now!
Worsening of incontinence after fistula repair
C C.S.
C.S. Thank you I will keep these things in mind. [ more ]
Scott F Oil of oregano is not of any interest to me. I am much more cautious with “supplements” than many folks. I do use potent (but pretty well tested) probiotics (VSL #3, changing soon to Visbiome), and they also might conceivably help you, at least by making your wallet lighter to carry around. Another long shot to consider would be pelvic floor PT. [ more ]
C.S. Thanks for your response and suggestions. Have you tried Oil of Oregano or know of anyone who tried it and had success…I saw this suggestion on this site as well. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
NY Presbyterian Hospital
A akteacher
twinkie NJ Transit into NYC, then transfer to the subway. [ more ]
akteacher Thanks everyone! I’ll be checking out my options. [ more ]
AMB I stay at the Hilton/Homewood Suites on Glenwood Ave in Teaneck, NJ - right over the bridge - there's a Marriott property at the same exit. I have stayed at the Edge but prefer the reasonable cost of hotel and ease of parking in NJ. (I drive to the City from 3 hrs North.) It's a quick Uber or Lyft ride to Dr. Shen's office, though prices for ride service seem to have doubled since last year also. So when you compare prices for in-town or over the bridge, check out what the Uber would cost, too! [ more ]
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J-Pouch ForumsGeneral Discussion
Food Discussion
C capper
capper I seem to go in stages. By that I mean that I rarely ever suffer from incontinence while sleeping. However, the combination of going to bed with a full stomach and when I am extremely sleep-deprived is a recipe for it... They say stress can make one's condition worse. The fact that I am presently going through a marital separation AND moving to a different rental house probably doesn't make things better for my health... [ more ]
Kushami Tough-leaved salad greens. Lentils, baked beans, chickpeas and the like. Soup that is liquidy with bits of vegetable in it. Beer. Chilli and garlic in more than background amounts. I also had a bad experience with a “chocolate fountain”. I didn’t know that you make the chocolate flow by melting it in with large quantities of oil. I had a slight episode of incontinence while sleeping, the first time ever since my surgery recovery period. [ more ]
capper AMB, that is wild stuff, just wild! I say that because it's delicious stuff you are mentioning but bizarre! Kimchi makes you feel good???!!! I love it but i never thought it was a food that was gut / jpouch friendly. Same with corn.... SD bread, for sure should be easy to digest. I love my draft beer (especially the light / wheat kinds) and I love to use it to wash down a basket of wings. Hot wings are my favorite although all flavors are good!!! [ more ]
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J-Pouch ForumsGeneral Discussion
Pain meds and obstructions with an ileostomy?
n/an/a
Sara Marie I think they slow the entire GI system down, so upper GI too. But I'm not positive. [ more ]
n/a Thanks so much, all. I will be hopefully meeting w/the surgeon one more time prior to surgery, and will feel much better about discussing various meds. One last question, do opiates have the same effect on an ostomy as they do a jpouch (constipation, possible ileus?) [ more ]
Sara Marie I second that about avoiding opiates including tincture of opium. Not only do they slow the gut down too much which makes obstructions harder to resolve, they also cause emotional instability, so whatever you are bothered by will seem a lot worse unless you have just had your dose. And withdrawal is very unpleasant. It's a roller coaster to be avoided. I speak from my own experience. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Ilex paste
AngiebAngieb
ELH Please let us know when you get that email about the availability. [ more ]
Pouchomarx its on backorder from the manufacturer. Its the only thing i like using. They stated there are rumors out there that they are going out of business but stated thats is 100% false. They stated they should be having more product in early 2024.. they are supposed to email me when available [ more ]
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J-Pouch ForumsGeneral Discussion
Fatigue even after good nights sleep
Matty96Matty96
Matt R I had surgery 20 years ago. I started getting tired a few months ago. I couldn't think of what changed recently, until seeing New577 post about B12. I read a book about Ultra-Processed Foods in August and my opinion was already that vitamins are useless unless you have a deficiency and reading that my opinion went further in the direction of it being useless and I stopped taking B12 vitamins, which I've been taking since the surgery. I just did a sleep study before looking at this board (I'm... [ more ]
Pouchomarx how old were you when diagnosed with PSC? I am 52 and a few years ago MRI on pouch stated dilated CBD and an intrahepatic duct . So of course i thought i had PSC. I saw a liver specialist at Cleveland Clinic who sees people with PSC and he doubts i have it. Said the dilations were not significant enough and i did not have any strictures in my ducts, for the pearl necklace appearance. But he stated we can do liver labs every 4 months to keep an eye on it. So far my liver labs have always been... [ more ]
grandmaof1 I’m tired all the time. And I do believes it from us not working exactly as planned anymore. I drink and drink nonstop. I do drink water with extra electrolytes etc. I have wondered if a sleep study would help me also. My son had it done when he was younger. But hated sleeping with the machine. I also was just diagnosed with PSC of my liver and that makes me tired too. Let us know what you find out. [ more ]
See all 13 replies...
J-Pouch ForumsGeneral Discussion
Food replacements.....
Asa LayAsa Lay
AMB I am a lifelong pasta and pizza lover but have had to cut down on wheat flour and had difficulty with tomato also. I have had luck with peeling and removing seeds from fresh tomato and using a high quality tomato paste. There's also an excellent tomato powder that can give you a rich tomato flavor without the acidity. https://www.burlapandbarrel.co...-dried-tomato-powder . [ more ]
Scott F I’d take a dose of psyllium before eating tomatoes if they run through you. I don’t know if it will work, but it might be worth a try. [ more ]
Asa Lay As I stated to another poster.....its not the burn that bothers me, its just that they go right through me. Usually within one hour of eating, I am bathroom bound for several hours......If it was just the burn, I could tolerate it for the most part. .....LOL. [ more ]
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J-Pouch ForumsHelp! Need advice now!
First of 2 jpouch surgeries coming up
HP Hey Pooch
AMB My surgery was laparoscopic and I did not have a huge issue with pain following. The loop ileostomy took an little adjusting to. I expect you'll meet with an ostomy nurse in the hospital and they'll have you practice changing the appliance before discharge. My nurse showed me the equipment and ordered it for me in advance of the procedure so it was waiting for me at home. Appliances come in different styles and sizes, and your stoma will shrink over the first several weeks, so the apparatus... [ more ]
Godfrey Nolan For me it was all about the pain management after the operation. If you don't figure that out you will be miserable. I was told long after my first surgery that I should never be over 4/10 in my level of pain, so the second surgery was much easier to deal with. Contact your surgeon as soon as possible after the op if you're having to deal with too much pain and don't give in till they fix it. [ more ]
Mrs P ❤️
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Constipation with J-Pouch
P PARRR
Phoenix29 Thank you @Petey12 [ more ]
Petey12 Please read SJAN810 reply and click the link to the anorectal manometro test. In there they also list treatments of biofeedback and pelvic floor therapy which I highly recommend. It has helped me greatly understand what was going on. It is common with pouch surgery for muscles to be damaged, and therefore not function correctly. There are many things that can go wrong but there are therapies for them. Most doctors are like “it’s pouchitis so take Cipro” but there may be more to it. I also... [ more ]
Mziada ❤️
See all 44 replies...
J-Pouch ForumsGeneral Discussion
Can you make it through the night?
B Bubbapup
Asa Lay For me it depends on how much I eat and if I eat late. If I behave myself and don't overdo the eating or do late-night snacking, I usually get up once during the night, sometimes twice. [ more ]
PSJ I rarely get a full nights sleep. Last night I went to sleep at 10:30PM then woke up at 12AM to go , then 6, 6:30, 7AM. I did snack quiet a bit and had an alcoholic drink. I get up at least once and have a hard time getting back to sleep. I know it affects me but taking sleeping pills is not a very good option either I found out. Just keep trying I guess. [ more ]
Scott F If you’re going to snack at 9 PM then you might get the best results from something fatty, like peanut butter. That slows down the GI tract and might give you more time. I wouldn’t read too much into one bad night - that can happen to anyone, with or without a J-pouch. I generally sleep through the night, 7-7.5 hours, but sometimes I have to get up earlier to poop, and then go back to sleep. [ more ]
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J-Pouch ForumsGeneral Discussion
Dr Victor Fazio
G 97Guy
twinkie ❤️
Don D. Dr. Fazio performed my surgery in 1996. I'm still going strong almost 30 years later! Very grateful for his work and service. [ more ]
Bill264 Dr. Fazio, the BEST physician ever, performed my procedure in October, 2003. No complications whatsoever. He was a great soul and will be missed by many. [ more ]
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J-Pouch ForumsGeneral Discussion
Overall Well Being
PSJPSJ
OscarThePouch Im 43 and go back and forth between feeling great and feeling exactly like you describe. Maybe ill be where you are when i hit 60. A lot of my stuff is mental health too though. I had depression and anxiety before the IBD and the IBD made it worse, and it in turn worsens gut stuff. At the end of it all it is still a better life than UC. [ more ]
New577 I have found that where I am at is as good as it gets. i cannot gain weight I always have to watch what I eat, how much I eat, and when I eat. i am always tired since I am taking loperamide 3x/daily. Always have to take into account restroom considerations when traveling. vitamin d and b12 stay low without supplements. on canasa permanently to avoid cuffitis. have to avoid heavy simple carb intake to prevent recurring SIBO. Having said all that, I am grateful that I have it well under... [ more ]
lablover check your vit D and B12 levels.. My husband found out that his levels were low. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Help! Hospitalized for fistula - caused by pouchoscopy?
L LIGuy11
EAShien Hi there. I had two fistula (2018) and it was also a nightmare! Lots of Dr's not knowing what to do. I ended up at a hospital, referred to a GI specialist. Long story short, he didn't have time to drain the abscess so he did it without anesthesia. I still have trauma thinking about it. But...I was in SO much pain. Then I went to the surgeon who made the j-pouch and he fixed it. I did not have a scope prior and actually very overdue for one. I think, as you can see from this website, we are a... [ more ]
Scott F I’m sorry you’re going through this! Fistula openings are very small, so they can easily be missed unless there’s a specific issue that makes the doctor look painstakingly for it. It’s not surprising that the doctor didn’t see it, since it wasn’t (then) causing you any trouble. As far as I know I don’t think pouchoscopy can cause a fistula unless (perhaps) if there’s a serious and fairly obvious mishap.. The long-term goal of a seton is to hopefully enable it to heal up, but while it’s in... [ more ]
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J-Pouch ForumsHelp! Need advice now!
J pouch failed :(
R Robbiusd
Jayda I’m so glad that everything went well and you are feeling better. Hopefully, the loop will cooperate for you (mine never did, but there’s always hope lol). Best wishes 😊 [ more ]
Robbiusd Morning Jayda!! yeah doing well thank you. Operation went ok and recovery has been straightforward which is a relief. I did wake up with a loop ileostomy which was a bit frustrating but apparently going back into the male pelvis to fiddle around again sealing the jpouch is very risky. however, not impossible so it’s an option if the loop is troublesome and i choose to take the risk they will do it. Just skin management close to the loop is difficult but much less annoying than feeling like... [ more ]
Jayda ❤️
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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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