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J-Pouch ForumsPouchitis
Probiotics
O oml703
maddie18 Hi I take Pepto Bismol to keep my Pouchitis in check. I usually take a tsp a day or if I feel it's necessary I take one tsp in the a.m. and one in the p.m. [ more ]
Scott F I take a very high dose of VSL #3 DS (4 packets/day). I think it helps, but thank goodness my insurance covers it. Visbiome may be easier to find, and (as PouchLogic wrote) is very similar. [ more ]
PouchLogic Hi, most of the jpouchers take either vsl3 or Visbiome, both are basically the same. There is also a double strength but requires a doctor script. It's not cheap but it's supposed to help with pouchitis. I am taking one packet twice a day, I was only taking one but I was still getting reoccurrences so I have upped the dosage. There are others but I don't know much about them. Good luck [ more ]
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J-Pouch ForumsGeneral Discussion
Considering risk during an epidemic
Scott FScott F
skn69 Thanks Michael I just spoke to my sister in law (her birthday today)...everyone is stable but we saw my stepdaughter today (she stayed in the garden...no contact and a respectable 3m social distance)...her brother in law + the whole family are sick as well as her best friend with her whole family too...in other words...no one, good or bad, nice or not, healthy or not is immune...I will scream loudly until this thing is over...this is not 'just the flu'... Sharon [ more ]
MIKEEY Dear Sharon- I so hope they will all miraculously recover. So sorry you had to be witness to all of this, my heart goes out to you and the people who are now infected by this horrible virus. My prayers are with you and all those who are now so ill. May God Bless Michael [ more ]
StarryNight ❤️
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J-Pouch ForumsHelp! Need advice now!
Need surgeon!
K Kikers32
pammieskrh Dr. Remzi NYU Hospital. I wont go any where else! [ more ]
Jeffsmom I would say Dr Remzi. If you can go to NY, go. We have beeen using the docs at Weill Cornell. In addition to UC, my son also has PSC. We started there because of the PSC and continued but my docs there have been co silting with Dr Remzi on my son’s case. He has a leak that won’t quit along with an abscess. Then leak is at the astasmosis, I can’t spell. The stitching line for lack of a better explanation. The surgeons, doctors, nurses, everyone, as been wonderful. Jeff has spent thenbetter... [ more ]
SandraD123 Dr Remzi is an amazing surgoen and is now in NYC but he did my surgery at the Cleveland Clinic. This was the 3rd attempt for me and I believe will be the final. I just had a check up with Dr Shen and he stated numerous times what an amazing job Dr Remzi did with the new pouch. He said it was perfect. I feel fantastic and if something were to happen down the road I would definitely be looking Dr Remzi up!!!! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Best Center for IBD surgeons in NorthEast
S shim2000
pammieskrh Dr Remzi did my j-pouch redo. Very happy with results. Pain mgmt team does suck at NYU [ more ]
shim2000 We saw Dr Kiran. Really liked him. He is calm, confident and has excellent staff. I met a couple of patients from out of town seeing him the same day - some with pouch problems. One said that he was there since he is one of the few who does pouch revision surgery and also K pouches and that Dr Fazio had recommended him and said that he would send most of his patients to him after he moved to NYC. We think we will stay with them. [ more ]
shim2000 Thank you. Will weigh all options recommended. Considering staying with my choice. My friend said that the advantage of the Columbia team is that they have experience with everything. He said that when things get complicated too they have the expertise, which is important. For complicated cases, pouch problems, they have the expertise of Dr Kiran who is very experienced in avoiding permanent colostomy and trained by Dr Fazio to do revision surgery. He also does the K pouch - not many people... [ more ]
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J-Pouch ForumsHelp! Need advice now!
34 y/o j pouch failing! Surgical options?
S seanbo1001
pammieskrh Had my first j-pouch created in 1985. Started giving me problems in late 2015Had it disconnected and had loop ileostomy in Dec 2016. May 2019 had old pouch removed and new one created with new loop ileostomy, In November 2019 loop ileostomy closed. New J pouch functioning great. Surgeries done by Dr. Remzi at NYU hospital. He's the best. For scrips try Good RX [ more ]
seanbo1001 Yes, thanks for the advice. Right now my GI wants me to talk to surgeon which will happen next month. After I hear my options, I may try different antibiotic options. Still gathering info so all of your input helps guys. I am very grateful. [ more ]
Mema 1 ❤️
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J-Pouch ForumsHelp! Need advice now!
Cuffitis
Mema 1Mema 1
pammieskrh try Good RX [ more ]
TE Marie LJK, The Mayo Clinic has locations in Rochester, MN, somewhere in FL and in the Phoenix, AZ area. Rochester is where I went and the original Clinic is. I think Cleveland Clinic is also in FL and AZ. I know what you mean about getting things done before year-end. My j-pouch take down was done the end of December and I left the hospital on 1/1. It sounds like you need to call the surgeon's office to find out when you will be receiving the information from your 10/31 appointment. [ more ]
ljk Also, I thought that all that testing was when you first had your pouch made? and yes i was just given the diagnosis last visit that i have Crohns. I was diagnosed here with Chrohns got a second opinion here they initially said colitis. [ more ]
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J-Pouch ForumsGeneral Discussion
J pouch leakage
BritBrat88BritBrat88
Pouchomarx Dr Shen is in NYC now [ more ]
JHendrix I notice that this thread jumps from 2017 to present day. I think it's helpful if we update and provide outcomes where possible. That way when someone is searching the particular topic at at later date the information is there. It's also a matter of having interest and concern for individuals' well being. For example, BrittBrat88 I'm wondering how it worked out for you. Thanks. [ more ]
L Sounds like your bowel is spasming. I've had this a lot of times in the past 5 years. It could a range of things like dehydration, low magnesium, mental stress, physical stress like lack of sleep and sitting directly on your rectum for too long can cause rectal spasming, too much fat, caffeine and other foods that irritate your gut (for me that includes popcorn and chocolate). I suggest going to listentoyourgut.com for tips on proper elimination positions, abdominal massage and good gut bacteria [ more ]
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J-Pouch ForumsGeneral Discussion
Gas!!!
L lizardMWC
lizardMWC Thank you, PouchLogic. I have a follow up w my surgeon on Mon - good timing to assess pouchitis. ive wondered about cannabis but am at a loss on how to go about figuring out what strain, where to get it, etc. I live in Virginia where it’s been decriminalized and there’s also an affirmative defense for medical uses. [ more ]
PouchLogic Hi, sorry to hear that you are experiencing gas pain. You may still be experiencing pouchitis, just flygal may not have been enough to fully get rid of it. You can tell if it's pouchitis when or if the antibiotics work, since you said that they were helping and stopped makes me think that. I find I get tail bone pain when I am experiencing pouchitis, I also get the same pain being dehydrated. As for diet I suggest the low fodmap diet, it's supposed to help figure out what is causing you gas. [ more ]
Kmiller I'm 6 weeks post takedown. I've started taking gasx (2 twice a day) the last few days and its really helped me. Finally feel like I don't have constant pressure. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Mushroom Drain
Shane199Shane199
Shane199 I'm sorry that I never responded about your drain. Those always sucked, and if you had it for a month. How awful! On the other hand, I am soooo happy that you were able to go through Remzi (I still say he's one of the best). But I'm thankful that you've gotten to experience the take down and that your j-pouch is performing great. Such great news to hear Keep fighting on! You've come so far [ more ]
pammieskrh Had takedown surgery in November. New J-pouch is functioning great. Dr. Remzi is the best! [ more ]
pammieskrh I just came across this older thread. I am currently at NYC under Dr. Remzi's care. I had a j pouch redo last Thursday and am going home to Michigan tomorrow, I have a mushroom drain which won' be removed for a month on a subsequent visit. I have to say that the redo surgery was rough and am glad it is behind me. Will have loop ileostomy takedown in about three months. [ more ]
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J-Pouch ForumsGeneral Discussion
Generic for vsl#3
DW Dave Wilz
kta I got it and, so far, I like it. VSL just got too expensive. I quit using anything at about the time VSL got hard to get because I just could not justify the price. The Costco one is about $35.00. [ more ]
Scott F It’s not a true generic, though it might have a similar set of bacterial species. In any case it might be helpful in the right dose. [ more ]
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J-Pouch ForumsPouchitis
7 year old sons first bout with Pouchitis
J Jlake
Jlake Thank you Scott. Much appreciated and reassuring too. Have a great day! [ more ]
Scott F Cipro seems to work astonishingly quickly; I think metronidazole may take a little longer. Hopefully things will be much better within a day or two more. If untreated pouchitis can last more or less forever. There’s no reason to assume that it will happen often. If you do get unreasonably frequent recurrences then a strong probiotic (like Visbiome) in an adequate dose may reduce the frequency (as well as the contents of your bank account). [ more ]
Jlake Thank you for the reply! We have him on antibiotics now. 3 1/2 days in to a 14 day treatment. I’ll keep in mind your recommendation if this continues. [ more ]
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J-Pouch ForumsPouchitis
Antibiotic Course (Days) for Chronic Pouchitis
M MikeWithPouch
MikeWithPouch I've run into itching too..... my silver bullet for any of the acute close to anus stuff has always been canasa suppositories..... long soaks in hot baths have helped me as well followed up by a stretch of mostly just drinking water and not eating until things cool down (either itching, soreness, stinging..) for me my coping is the same for all 3. [ more ]
davek Hi, well i just got off 1 week of flax and 10 days of Cipro. the itching drove me nuts. anyone experiance the itching from the Flax? [ more ]
MikeWithPouch I do the expensive VSL3 as well. Have never been able to conclusively know whether it helps but my GI is very in favor of it. And I'm on Humira as @kta mentioned. For me, my onsets/treatments were : -soon after surgeries abscesses/cuffitis - Canasa GREATLY helps me with cuffitis. Helped me immediately years ago and still helps me greatly ~10 years later. -later ~5 years after surgeries added fistula(s) to mix- ultimately added Humira to address abscesses/fistulas and going on 2.5 years of... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Tincture of Opium
ktakta
kta Thank you, Doug. So there is hope. My search will begin for another doc. [ more ]
Doug K I am sorry to hear the doctor respond that way. I see a top GI doctor in NYC and he treats me with Tincture of Opium with great success. I would find another doctor who communicates better. [ more ]
Scott F It really would be better to treat the source of the problem than the symptoms, if that turns out to be possible. Good luck! [ more ]
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J-Pouch ForumsGeneral Discussion
What we are up against right now
skn69skn69
May ❤️
skn69 I am better thanks...I had a couple of bad days where I wasn't sure what it was or where it was going (no fever and very rarely a cough; mostly a sore throat, exhaustion and pain in my right lunch). It seems to be almost over (could it be that the weekend is here and I am more relaxed?)... At any rate, whatever it is, I hope that it does not return...lots of people around us who are sick, both family and others...people who we know and are shocked to find out are no longer around...Suddenly,... [ more ]
JHendrix Hi Sharon. Just checking in. Hope you're feeling well. [ more ]
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J-Pouch ForumsGeneral Discussion
Covid-19 question
I Indy_Dave
lclassen I've often wondered that myself. After colon removal and now with J-pouch... Are we still considered immune compromised? I'm not on Amy meds (no biologics), so I'm just wondering what the concensus is? My GI Doc says I'm healed, and don't have UC anymore. But I do still wonder if the auti immune response is still in my system somehow. [ more ]
Pals Just a question, without having our colon. Do you feel that we are prone on picking up a virus? I am healthy and seem to pick up everything. Just curious if I’m alone on feeling this. [ more ]
jruggieri15 ❤️
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J-Pouch ForumsGeneral Discussion
BM's
S Solomin
Solomin Hi Scott, This is definitely food that I do not digest. It comes out the same way it was when it went in. Thanks! [ more ]
Scott F It’s best not to confuse identifiable residue in your stool with “digestion” issues. While chewing well is always wise, the residue you see has nevertheless had most of its nutritionally useful content properly absorbed. You’re looking at the shell for the most part. [ more ]
Winterberry Hi, Solomin. It depends on what you eat, and what it is combined with. When I eat grapefruit or raspberries for a snack, it moves through me within three or four hours. If I have a ham, cheese, tomato and cucumber sandwich for lunch, or dinner of chicken with a carb and vegetable, it will take longer, maybe six hours, or overnight. If I have pasta with only vegetables, it is faster. Fruits digest very quickly so maybe try to eat it on an empty stomach so you can absorb its nutrients. Try to... [ more ]
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J-Pouch ForumsHelp! Need advice now!
not sure if I should go ahead with takedown
L Leann
Leann Thanks. I would like to try but I would like to have some testing done to see if there is even a point and not getting some testing on the pouch is frustrating. to say they haven’t seen Someone like me before is confusing as I have the same issues I see orders have all over this group. I think I need to get a second opinion and that isn’t easy here in Canada [ more ]
Winterberry Can you find the best temporary solution, while leaving all your options open for future decisions when your new system is more mature and calm? I do not say this to be flip, but it's like banking investments, or never signing important binding documents when you are under terrible strain and pressure and emotion and all you want, right now, is any way out. If you remove your pouch and have a Barbie bum, there is no other option. You'll have an ostomy for life, and they can become very... [ more ]
Leann Thanks everyone. I need to get to someone who will do some testing and make an informed decision and that is proving difficult. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Stomach bug (gastroenteritis)
G grateful
grateful I hope so! Scott, thanks for your comforting words! [ more ]
Scott F Most important is that you stay hydrated. I’m glad it’s getting better - by Thursday you might be trying to remember what the fuss was about. [ more ]
grateful Well, started Saturday, cramps painful, swollen tummy, gas, no fever, no vomiting. Cramps got worse after eating. Stopped taking Imodium and Metamucil. I have done home diagnostics and came up with, no blockage, because I have out, no Pouchitis because I don’t have those symptoms. So figured maybe it is a bug like stomach. Eating the BRAT diet since Sunday. still taking a 3 mile walk ever morning, now, of course before eat anything, because I am not taking any Imodium or Metamucil. Was... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Skip Remicaide or Risk going to the Hospital?
P Pouchbro
Jan Dollar Glad your infusion went well CT. I have my infusion on Monday. I was also advised by my GI it was best continue with my infusions (Inflectra, a biosimilar of Remicade). My thinking is that postponing would just have me going in at the height of the pandemic curve, along with risking relapse. I have mine done in the infusion center at my medical center. It usually is packed, mostly with cancer patients. I hope they keep out visitors. Jan [ more ]
Bubba1028 CtBarrister- I think we have the same doc! [ more ]
CTBarrister Just had my infusion this past Friday. I was instructed by my GI that the risk/benefit analysis easily gravitates in favor of continuing with your scheduled Remicade infusion and not risking development of antibodies, as once that happens you are done with Remicade as a treatment. My infusion center adapted and has put patients in individual, private patient rooms, and only have 2 patients in the big infusion room at a time on opposite sides of the room. I got my choice of 2 private... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Blood Pressure Meds and J-Pouch
Pilot DebbyPilot Debby
Olina I take amlodipine and Losartin but now have problems with highs again [ more ]
twinkie Yes, I take 5mgs/day of Novasc (amlodipine) for 2 yrs. I probably will switch meds soon, cuz it causes excessive lower leg edema on me. [ more ]
MikeWithPouch I think I started with amlodipine but then switched to lisinopril maybe a decade ago...didn't have issues with either. recently added hydrochlorothiazide. again...never have had issues. good luck. knock on wood. I've always wished treatment for pouch complications were as effective as BP meds...but oh well...we go with what we have. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Trying to get off antibiotics.
ktakta
Scott F When antibiotics are used for a specific infection with an inadequate or incomplete dose, sometimes the targeted bacteria can develop a resistance to that antibiotic. That’s why the instructions are generally to take the full course, even if you feel better. Pouchitis treatment is a bit different, since many bacteria are being “targeted” (even though we really don’t know exactly which bacteria would be best to get rid of or add). Nevertheless, over time a pouchitis antibiotic can sometimes... [ more ]
Pouchbro https://www.j-pouch.org/topic/...8#621130351174557768 That's good to know thank you, however I recall reading that certain antibiotics are only effective for 1-2 uses so If you stop taking them longterm that could be an issue. I know one thing is for sure, my symptoms get worse when I stop taking antibiotics. [ more ]
Scott F I’m pretty sure you don’t “build antibodies” to antibiotics if you stop taking them. That’s a problem that seems to be limited to Remicade. [ more ]
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J-Pouch ForumsK-Pouch Korner
Trouble intubating
PO Pressing On
LtlBird Try taking a warm bath and relax. [ more ]
skn69 Hi, Have you tried changing positions? If you normally sit, try standing up (less pressure on the bottom of your pouch...it will hang 'free'...and may make things easier, if not try laying down either in the tub or on your bed with a blue pad under you and a jug or cup to catch output. Once you get the catheter in, please leave it in for a few days. You can plug it or hook it up to a leg bag or something else. Do not irritate it more than it is already. IF you feel like you are hitting a... [ more ]
dpol So sorry for your troubles! The last time I had trouble intubating, I just left the catheter in for a few days and it helped. If you continue to have trouble I would see your doctor. Good Luck! [ more ]
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J-Pouch ForumsGeneral Discussion
Covac 19 /Flu Just Virus In general
P Pals
skn69 I am less susceptible than before having my colon out...but I do not play with fire either...a true flu can knock us on our bottoms...so I get vaccinated yearly...as for Covid 19...this one is fire and dynamite...here in Europe, we are losing hundreds/day...Italy is at close to 10 000 deaths directly related...France is at nearly 5000 (they do not officially include those who have died in senior's homes...). So, be careful...Very VERY careful...Stay in, stay home, order in, have your... [ more ]
MikeWithPouch Crohn's Colitis Foundation recently did a Facebook Live Event and presented encouraging info to us with IBD related to Covid-19. One argument was that suppressed immune system from immune suppressive drugs may arguably be beneficial in fighting off Covid-19. Also, presented some world wide data collected that 41 confirmed cases of people with IBD. All 41 recovered, only 10 required hospitalization. Doctor(s) firmly/clearly stated stay on your immunosuppressing drugs. [ more ]
JordySimo I’ve rarely been ill since having a stoma/j-pouch. I’ll get the odd common cold here and there and that’s it, but I am religiously washing my hands and have done for years. So maybe it’s good hand hygiene that plays a big part in that for me?... Not sure. [ more ]
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J-Pouch ForumsPouchitis
Pouchitis?
C Charlie1026
PouchLogic It can be hard to get rid of pouchitis so I wouldn't suggest any shorter than two weeks for antibiotics either. I take probiotics to help stop the reoccurrence of pouchitis as I am prone to pouchitis. [ more ]
Scott F Yes, take the full two-week course, to maximize the chances that you’ll be done with this for a good long while. No one in their right mind “likes” taking antibiotics, but it’s best, if you can, to employ your rational mind instead of your emotional one in these cases. If antibiotics are that upsetting you might want to consider starting a good bacterial probiotic to (possibly) reduce the likelihood of future pouchitis episodes. The best ones are expensive, though. Good luck! [ more ]
JHendrix Cipro was the only one that I took and it cleared it on its own. But I don't have alot of experience with pouchitis. [ more ]
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J-Pouch ForumsGeneral Discussion
Daily and nightly BM's
MD Michele Dana
Bubba1028 I’m 2.5 years post takedown and I guess my numbers are higher. I go about 10 -12 times during the day and on a good night I only get up 2x during the night. On a bad night I’ll get up 4-5 times. I’m on Cipro now for a small case of pouchitis and cuffitis. I think this is as good as it will get for me. I should mention I’m an otherwise healthy 40 year old female. [ more ]
Michele Dana Thanks so much! [ more ]
Scott F The advice about sleeping through the night has been written here a bunch of times. Find the search function (on my browser it looks like a tiny magnifying glass next to the “DONATIONS” tab up top) and poke around. If you search for “peanut butter” that will pick up many of the older posts. If you still have questions after reading what’s already been written, ask away. Winterberry, I think the cheese works because of the fat content. Nothing slows down the stomach like a little grease. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Partial obstruction?
samwoldsamwold
kk I went for a long time getting really sick at my stomach and at times throwing up. Then I got really sick, hospitalized then had operation after I go stronger. Until surgery I was put on a diet to hopefully not obstruct till surgery. Surgery was two months later and I did ok until then. the pouch had prolapsed some and did find part of my bowels attached to female parts which they separated. Doctor said he thought I was having bowel obstruction all the times I got sick. He explained to me it... [ more ]
samwold Thank you for the replies! Stay well. [ more ]
Scott F Sam- I’ve had a few partial obstructions, and luckily all of them cleared pretty quickly, as yours has. Most obstructions clear by themselves, and don’t require anything other than patience and maintaining hydration. There’s no particular requirement other than to be gentle on yourself - go slow, in case it hasn’t fully cleared, and try not to do anything that hurts. [ more ]
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J-Pouch ForumsGeneral Discussion
Issues with pouch?
S Solomin
Aimc To be safe. Call your GIoe surgeon and ask what advice they would give you. Aimee [ more ]
Aimc Solomon, hi sorry for your difficulties. It does sound like you may need dilation. The incontinence is probably from being full of poop. It will leak out until you can empty your pouch. I've had both balloon and Hegar Dilators used for under sedation dilation. My surgeon had me take miralax a couple of times a day to try to clear out all the build up. At the time I had to wait a couple of months before I could get my dilations. Believe me, taking the miralax gets pretty unpleasant. The... [ more ]
Solomin Hi Scott, Thanks for the information. I had my first takedown January 1984. It is hard to believe that I am still having issues after all this time (a pouch recontruction 30 years later). The surgery is not perfect, but at least the quality of life is better than before. [ more ]
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J-Pouch ForumsOstomy & Skin
Temporary Stoma/Ostomy
S SJAN810
SJAN810 TE Marie, Thanks for responding! Sorry to hear you have dealt with similar issues. I'm wondering what you mean by a permanent ileostomy? How is it permanent if the plan is to temporarily divert from the j-pouch and go back to using the j-pouch? What's the difference between this one and the temporary one? I'm confused. Is it an end ileostomy where they disconnect the end of the small bowel from the j-pouch to use for the stoma and then reconnect it later? Thanks! [ more ]
TE Marie Did you discuss getting a perm ileo instead of a temp one? I had a permanent ileostomy while being diverted from my j-pouch. My surgeon spent 3 hours while in there lysing my adheasions/scar tissue. She did all this laparoscopic. I really didn't want a temp one as I had horrible problems too. Later on I did need to have my j-pouch removed as my pouch problems didn't go away. But shoot you don't have any of the problems I had. I take that back I had IPS too. I would ask if s/he is going to... [ more ]
SJAN810 JHendrix, Thank you for your input. I’ve only been communicating with my doctor over email since August and will probably have to wait until I see him in person to get a better explanation. My appointment in August led to several tests, most had normal results, ruling out inflammation, Crohn’s disease, pouchitis, strictures, etc. The last test I had done indicated that I have IBS. I had an appointment scheduled to follow up with my doctor about all of this but I’ve had to reschedule several... [ more ]
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J-Pouch ForumsGeneral Discussion
Air fryer
K Kmiller
Kmiller I got a ninja foodie and love it. Pressure cooker, slow cooker, steams, bakes, air fries all on one. [ more ]
lclassen Air fryer is fantastic! I have one that looks more like a toaster oven (rather than a round basket type) and it's great for grilling chicken breasts, cooking bacon, sausage, etc. We use it a lot. Very handy! [ more ]
tf That is correct, no fried foods. I have a air fryer and it is as close as it will get to the real thing. [ more ]
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J-Pouch ForumsHelp! Need advice now!
PartialBlockage
VG vicky g
vicky g Hi Andrina, gastrographine is sold over-the- counter in my country (Greece) in local pharmacies, however I cannot tell if this is the case in other countries as well. Take care, Vicky [ more ]
Aimc Andrina, I don't believe that gastrographin can be purchased over the counter. [ more ]
Andreita Gastrographine has been administered via the tube and I went to the bathroom and stayed there for an hour just passing it. This relieved it. I can't find gastrographine online so how does one obtain it over the counter? [ more ]
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J-Pouch ForumsGeneral Discussion
how to ride out gas pains
G Guest
Cathy J-pouch 2 weeks post take down and gas is the most challenging issue to say the least. I’m going to try your suggestions and I feel comforted I’m not alone. Life would certainly be easier if I could fart. A bad day with a JPouch and gas is 100% better than A good day with UC! [ more ]
KIKAT I’m 22 years out. I get gas worse when I don’t eat. I’ve learned to stay away from yeast breads. For some reason, I switched to flour tortillas and it helped. I started narrowing it down by keeping a journal of eating, etc. I’ve had pouchitis many times, (feels similar). I’ve had strictures but it’s still the best surgery I’ve ever had. [ more ]
JB788 ❤️
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J-Pouch ForumsPouchitis
probiotics
DM david m.
Scott F I’d suggest changing only one thing at a time, so if you experience a change you’ll have a good guess about the most likely cause. So I wouldn’t increase the Metamucil at the same time as making a medication change. Good luck. [ more ]
oml703 Thank you Scott and J.Hendrix I think your correct Scott the Mesalamine didn't do much and I'm going to increase my dose of Metamucil . Like J I believe that 6 - 8 times a day is my norm . Spoke with my GI Dr. on Friday she wants me to do a week or two of the Mesalamine suppository and let her know if it decreased to 4 times per day . I don't see that happening and I don't understand why she feels that's is inportant. I really believe that 6-8 is reallly good for me considering I only have... [ more ]
Scott F Mesalamine doesn’t really do much for pouchitis, as far as I know. You could make a good argument for leaving well enough alone, or for trying 10-14 days of Cipro or Flagyl. Once you start treating problems that aren’t bothersome it’s hard to stop. Your dose of Metamucil seems too small to have much of an effect. Have you tried following the directions on the package? I’ve used it twice a day for a very long time, and it helps steady things for me. Counting bowel movements is what GIs are... [ more ]
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J-Pouch ForumsGeneral Discussion
COVID-19
M MetsFan
MetsFan Winterberry, We have to wear safety glasses and ear plugs, so I am touching my face "area" multiple times a day. I am a machinist so I try to wash my hands before I remove any PPE. I think it will get worse before it gets better. Take care of yourself and family. [ more ]
Winterberry Hi, Metsfan. Can you carry your own hand sanitizer in your lunchbox or car so that you can sanitize as needed? I put a bottle in the car and tell my family to sanitize as soon as they get in the car, after touching all sorts of things at the grocery store, doorhandles, etc. Try to be very aware what you touch,mormdont touch. Remember to sanitize front door knobs and faucets at home, these are the things that you touch first when you get home and then forget about it, until the next person... [ more ]
Curly Bob, I'm so sorry that your employer does not provide paid sick time. This should be a national requirement even without the coronavirus. I agree you should do whatever you can to stay at least 6 feet away from other people, wear gloves and throw them out when you're done, and be sure to wash your hands with soap frequently, for at least 20 seconds, including before meals and when you get home. Best wishes. [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
Can straining cause hernia post op?
FM Former Member
girlunky My dr. suggested lying in a very warm shallow bath to help relax. If needed, you can go right there and then wash up. But i found I could lie there, then towel off and get right on the toilet. Then I'd hop back in and wash to prevent butt burn. Time consuming, but it worked. Even after 1+ years I find I have to stand up in the middle, and move around a bit, then empty again. I also drink a hot beverage first thing in the AM. I find I am better off without thickeners as I empty better when... [ more ]
Former Member Thanks everyone for their answers! [ more ]
Jaypea If you do need to strain please put both hands over your incision and support it while bearing down. Holding a folded towel or pad over your abdomen will help too. please make sure you are drinking plenty of liquids. [ more ]
See all 5 replies...
J-Pouch ForumsPouchitis
Cipro after Flagyl not working
Furious PouchFurious Pouch
Furious Pouch The doctor wants me to try cortifoam -feels it should be helpful within a couple days and if no improvement he has me back on flagyl/ Cipro. Will try the foam out and see and will load up on probiotics to see how it goes. fingers crossed this will work. [ more ]
Scott F If I were in your shoes I’d give the doctor a call - trying another course of antibiotics bolstered with a probiotic (that you continue) might do the trick. In any case, although the antibiotics carry risks, so does untreated pouchitis. Good luck. [ more ]
Furious Pouch when on both antibiotics I was good. My current doctor is concerned about long term use and also the possible side effects of Cipro. I see ppl on this site who use both of these drugs as a daily regiment. Another doctor in the same office was willing to consider Cipro as a long term option. Would you suggest 2 weeks or 3 weeks on these again and see? I am worried that if I continue on this path of being on Mesalamine I will weaken more (hard to eat, loosing wght, depressed). While on this... [ more ]
See all 19 replies...
J-Pouch ForumsGeneral Discussion
Corona Virus
rlbliferlblife
tf Amen to that. We J pouchers don't need that added misery. Be careful out there. God Bless [ more ]
Jaypea I am a registered nurse working in a paediatric hospital. The emergency room is FULL of people who just need a little common sense. We are ramping up our isolation processes. If EVERYONE followed the recommendations by their government health department this viral plague would settle down very nicely. Wash your hands, do not touch your face, isolate if you are ill. I do realize that those of us with compromised immune systems need to be extra vigilant. Instead of being afraid when I go out I... [ more ]
Bubba1028 I have been trying to stay positive. I keep telling myself even if I do get sick, I’ve been through hell and back with my disease and gotten through that, so I’m a tough cookie. But this is scary. I’m on Humira for my arthritis - thanks to my fantastic autoimmune disorder(s), so I know I’m more susceptible. i work at a university and we’ve closed and we’re telecommuting until further. That is a relief bc of the number of students I come n in to contact with daily. my friends are telling me... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Swollen at incision site
K Kmiller
Kmiller Thank you! [ more ]
Scott F Metamucil tends to make everything more like the consistency of Metamucil that has “set” - sort of a gel-like structure. Remember that it’s mostly sold to treat constipation. When people report stool that is too thick I tend to suspect inadequate water consumption rather than inadequate psyllium consumption. Stool that’s too hard leads to straining, which leads to all sorts of misery. [ more ]
Kmiller Thanks @Scott F . It may just be that the rest of the stomach swelling has went down so I notice more, or fluid behind that hasn't drained. I tend to freak out so hopefully its not serious. I have had to strain some, although I try not to, due to thickness and consistency of stool. So question for you on Metamucil. Will it level out thick stool as well to easier consistency? I used it all the time with ostomy because it thickened up my output nicely. Scared to use it now. I don't use... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Diet Post Takedown - IF DIABETIC
Asa LayAsa Lay
CTB23 Hi Asa, I did not have any issues with my sugar until after my surgeries. I am now prediabetic and went for a consult at the Nutrition Clinic with a referral from Dr. Reddy’s office. The person I worked with was Ellen/don’t remember her last name. She works with patients with diabetes and J-pouches, unfortunately my insurance did not cover my visit. You would have to check that out. Also, good luck with your surgery, I do remember Dr. Reddy had me cut my gaterade so it was half water. Broth... [ more ]
Winterberry Hi, Asa. I am also a diabetic. I worried about food and pouch. But I managed to have my lowest glucose readings when I was recovering from surgery 1 and 2. I ate simple carbs to help thicken output. Pasta, rice, and yes, even dense, high glycemic bagels and white toast with protein peanut butter, almond butter, eggs. I drank a Mason jar of broth every day to boost hydration. The key is portion control, and you already are expert at this as a diabetic! I had one slice of bread or half a bagel... [ more ]
Asa Lay Thanks, Scott.....not worried about hydration as long as sugar free Gatorade behaves itself.....lol....if not, than I might have to worry.....Just had a thought about talking to the surgeon, GI, and Dietitian for some ideas .... [ more ]
See all 4 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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