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J-Pouch ForumsGeneral Discussion
peanut butter!
LambiepieLambiepie
Former Member I'm eating the chit right now and hope I get a good nights sleep tonight, last night was nothing but a freaking nightmare, I was ready to scream [ more ]
CTBarrister Rebecca, Peanuts are not considered nuts, they are considered legumes. It's true that they are banned from most paleo diets. It's also true that on SIBO diets you are supposed to limit legume intake. I supposed if I was eating a jar a day it would not be a good idea......but I am not. I have a tiny bit of natural peanut butter on fruit. I don't eat a ton of it. A bigger culprit would be peanut butter with added sugar or palm oil as mentioned earlier in the thread. These should be avoided... [ more ]
Rebe0505 ct barrister and any other folks..i thought peanut butter was not good for anyone with overgrowth issues because of the peanuts as opposed to almonds for example..or is it something to do with mold??i could be confused but i know peanuts were a no no for some reason..am i mistaken??? [ more ]
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J-Pouch ForumsGeneral Discussion
Post-Takedown Urgency
J JordySimo
JordySimo My butt burn has gone after a week from using Sudocrem, wet wipes, etc... Really happy about that to be honest! Because it was not the most pleasant... Now it's just a case of improving the consistency, urgency and BM's per day. That'll all come over time though. [ more ]
Former Member My BM were down to 4 - 5 per day by time I left Hospital and since takedown, have more or less remained the same since, although some days could be an many as 6 but never less than 2. I wouldn't say BM's have increased, as it can vary so much from day to day Output can be more loose but more often than not, it's relatively thick, just not formed. Initially, as a precaution, after every BM, I applied ilex to prevent butt burn and eventually, without even thinking about it, I just stopped... [ more ]
JordySimo Ah okay, thanks. I was told it will be a rough first couple weeks until my bowel settles to be fair so I'm just gonna try and be patient considering it's only a week since takedown. [ more ]
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J-Pouch ForumsGeneral Discussion
Ladies! Menstruation and dehydration
KarenchaseKarenchase
Karenchase Thanks to all for your responses Scott, you're right, I do need to pay constant attention to my hydration. It's been very bad lately--no matter how vigilant I am, I seem to lose control of it suddenly, and then it's hard to get back on track. There's only so much water I can drink before I start to feel nauseated! Jan, I do take Imodium from time to time, particularly at night if my guts are running faster than normal, whether I have my period or not. Rachel, I hadn't thought about the Pill... [ more ]
skn69 I menopaused out at about 45 so it has been a while...but...yes, my period wrought havoc on my body and my pouch...I felt like my guts were going to drop out my bottom, a heavy feeling like there was a 50lb weight in my belly, like someone smacked me in the back with a metal bar...And a liquid pouch. I was so clueless back then...no one gave me any info and no one had a pouch so I kind of figured things out for myself. Heating pads and hot baths helped. So did soaking in a salt bath. Hot... [ more ]
rachelraven I went on birth control pills to tone down my ovulation/period issues, which helps that period "gut" thing out a lot. It can be r/t prostaglandin release (ex. why you cramp... same hormone contracting your uterus can mess with your gut). Even folks with colons get these issues. Fun! [ more ]
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J-Pouch ForumsGeneral Discussion
Not sure what's going on...
skn69skn69
skn69 Well an sort of update...Got in to see my Ethiopath's replacement today. Did a full work up and low and behold, I had a subluxation of the right clavicule, probably since I fell...That would explain why I couldn't lift my arm over my head, turn my neck or rotate my shoulder...I thought that it was the should joint that was dislocated...it hurt like hell but he got it back in (so that was the huge bump I had on top of my shoulder!)...bump gone, pain too. I can turn my head now (he put the... [ more ]
JLH damn, what a bummer to not be able to fully be present for the family event. i'm so sorry. and people without pain don't understand it. it's strange about pain, once it is gone i can't recreate it in my mind--i think that' s a good human survival trait, but can lower people's empathy. do what you can, enjoy what you are able to. hopefully the event will provide some pain distraction. if you went into the ER would you be able to get medical attention. perhaps get a Rx for celebrex--that's the... [ more ]
skn69 Thanks Janet, Well, I have been doing the PT for years...he puts heat lamps on me for 15mins, then massages for 15 and finishes with 15mins of Tens machine (those vibrating ultrasonic patches)...did that for years to no avail...the only thing that helped and nearly 'cured' me about 75% was the 3hrs/day swimming and doing aquagym...my summer routine. It allows me to lower my pain to about a 3...since the slip & fall this Aug, I am back up to an 8-10 and desperate...I feel like I ripped... [ more ]
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J-Pouch ForumsGeneral Discussion
Greens' powder to replace vegetables, fiber
WinterberryWinterberry
iHateColitis Has anyone else tried this? [ more ]
Winterberry Thank you, Since 1991. The generic probiotic in the green box in your photo is interesting. I've never seen it on shelves here, but I will look on Amazon. Florastor is expensive in Canada as it is shipped from the U.S. to be sold in Canadian drugstores, or on Amazon Canada via an American drugstore! We have something called Ultimate Flora, which is not the same as Florastor. Witch hazel and lanolin are good options. Thank you for the photo! [ more ]
since1991 Smoothies with vegetables and fruit is what I drink regularly. What really works for me is digestive enzymes and a different probiotic. I take 2 enzymes with every meal and a probiotic called 'florastor' once a day. I don't take any prescription drugs for my IBS or pouchitis especially antibiotics. Florastor has a website if you want to read about it, and Walgreens and Rite aid have a generic brand thats less expensive. For sore anus after each bowel movement I clean with witch hazel soaked... [ more ]
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J-Pouch ForumsGeneral Discussion
Pouch removal
J JoelSmith
Lambiepie Hi Joel, glad your surgery is over and done but, whew, sorry for your unexpected experience and all the stress that must have come with that. My surgery was in the winter and I remember still sweating. I just chalked it up to all the meds working their way out and my body recovering from the trauma of surgery and trying to heal. Sounds like you are very observant of your body. Keep good notes for when you see your doc and you can ask questions and be as specific as possible in order to get... [ more ]
JoelSmith Just an update - I had the j-pouch removal surgery back on the 29th of September. It was pretty tough. The removal went well but there was internal bleeding and they had to go back in on the 2nd day and find the source and then restitch and restaple. There was also problems with the epidural, by the 4th or 5th day it slipped out and they decided to take it out. They increased my Fentinal to compensate which started to give me side effects, hallucinations and anxiety, had a nervous break... [ more ]
skn69 Hi Joel, I went pretty much strait to a K pouch (no j pouches back then)...it worked for me...removal is an option but if you wish to keep the door open for future options like the K pouch or BCIR then consult the surgeon beforehand. There are things that they may need to do while in there to assure that the transition is possible once the remove the pouch. I wish you luck with your decision, I know how hard it is. Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
Questions questions questions!
KaterinaKaterina
Katerina Thanks Joel. Hydration is fine now. Slowly getting there xx [ more ]
JoelSmith Hope you're feeling better Katrina! Its a long healing process and takes a while for the body to readjust. I hope you've been able to find a balance with the hydration issue. It's good to not drink too much liquid with meals and in-between sips of things like smart water or vitamin water has helped me find a balance. Wishing you well [ more ]
skn69 Post op is different for everyone but there are so simple steps that I follow. Keep a heating pad handy. If you Keep a heating pad handy for immediate relief. If you don't have one, then fill a clean sock with raw rice, make a knot in the top and pop it into the microwave for about 2 minutes (you can gauge the time needed by adding a few seconds each time until it is hot enough for you) then put it behind your back where the pain is...instant relief. I like powdered soup mixes...you can get... [ more ]
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J-Pouch ForumsGeneral Discussion
J-pouch surgery
S Swazianna
Former Member Ilex Protectant Paste www.ilexhealthproducts.com You can request free sample sachets before purchase or maybe haggle for a free tube of ilex paste, claiming that a few sachets is not enough to evaluate the product. In my opinion and based on personal experience, ilex paste is by far the best product to apply to prevent and to heal diaper rash or any other anal irritation, itch or burning sensation. As a prevention or to treat irritation, only a very small pea size amount of ilex is applied,... [ more ]
Swazianna Thank you so much for your reply. Can you suggest any good barrier burn cream for her anus so she can start preventing burning pain now? I am going to encourage her to join this forum. I just read your message to her and this has already given her encouragement to join your forum. Finger's crosses! And thanks again �� [ more ]
Jan Dollar Rest assured, your sister's next surgery will be a breeze compared to the j-pouch surgery. Essentially, it's just closing the ileostomy, so surgical pain is minimal in comparison. Some people get a lot of gas pain during the weeks following, and this can be quite overwhelming. But, you can help prevent this by walking a lot, getting off opiates as soon as feasible, and small frequent meals. The other main issue is serious diarrhea as the pouch and small intestine adapt to being a reservoir. [ more ]
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J-Pouch ForumsGeneral Discussion
Not completely emptying, not pouchitis?
M Mike13
noya12 Can someone please explain what septum is. [ more ]
Scott F Megan- Echoing what Mike wrote, that codeine sounds like it may be part or all of your problem. Is there any reason you're still taking it? If stopping the codeine doesn't fix you up, you might want to get a pouchoscopy to see if you've developed a stricture. As far as hydration goes, the amount you're drinking doesn't help figure out if you're dehydrated or not. If your urine is dark or very dark then (unless it's occasional) you need more hydration, one way or the other. If your urine is... [ more ]
Mike13 Megan, No need to apologize for contributing to a post I started. That is what this group and forum is for after all. I too can learn from you. That said, I've never had pouchitis present itself to me with the symptoms you describe. With pouchitis, I've always had increased urgency, bloating, and feeling of not completely emptying. Big difference is my pouchitis was always loose, never had "dryness". It was always resolved with 2 week course of Cipro. This bout was different but I seem to... [ more ]
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J-Pouch ForumsGeneral Discussion
tips to empty pouch please.
G Guest
pouchington I've had chronic mild pouchitis from day one and nothing helps. Antibiotics work while on them then returns instantly and rotating isn't possible because I'm very sensitive to the the commonly used antibiotics. Your suggestions are very welcome my friend. [ more ]
Bobish POUCHINGTON sorry to hear of your problems, to be honest you have far more experience than me, so i wasnt really replying to you. Everything i can suggest im sure you have tried. The 2 things that have helped me durnig my time with UC and now this is 1) Warm water, bathe the backend in a warm sitz bath to prompt the bowels to open. I have good results with this 2) stretching, ie standing with you back agaisnt a wall like military straight, then dropping on your knees, face on the floor and... [ more ]
pouchington Scott, I had biofeedback which showed normal resting pressure so I just don't understand. I had very little relief from pt. Not enough to notice or continue after a dozen times. Bobish, I'm 4 years out and have no need for pain killers but incomplete emptying is enough to drive you mad and keep you homebound. It's a very difficult existence and impossible to gain or even maintain weight. I'm 5'6" and 115 pounds and losing. My surgeries (likely extensive anesthesia) caused ongoing substantial... [ more ]
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J-Pouch ForumsGeneral Discussion
Yeast /fungal infections
C cassiecass
since1991 I forgot to add avoid sugar. [ more ]
since1991 It's because of antibiotic abuse. The antibiotics kill the healthy bacteria that keeps yeast under control. I had to get off of the antibiotics. I had severe yeast in my vagina and outside, my anus and pubic area. I used 7 day vaginal yeast infection cream in my vagina and around the anus and as far as I could get it inside using my finger. Try something for Jock itch on the external areas. Get on a good probiotic. I use two. 'Florastor' or the comparable store brand, and Align. Both are... [ more ]
TE Marie I take a PPI, Omeprazole, and I believe the consensus is that it is better not to take such medications unless there is a good medical reason, like GERD. I don't know how it relates to yeast/fungal infections. The probiotics I take include VSL#3DS, and am doubling up on it currently as just took 3 weeks of antibiotics. Plus I take s.boulardii twice daily to ward off c.diff infections. I eat at least 2 Greek yogurts daily and there are probiotics in them but they are minuet compared to the... [ more ]
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J-Pouch ForumsGeneral Discussion
Which Doctor Would You Go With For This?
KQ Kevin Q
Kevin Q The one thing I like about my local GI doc is he can get me in right away and will return a call the same day. So in terms of following my treatment, I feel like he's right there with me, as opposed to Dr. Shen, who you get in with after waiting months, and it may take days to get a call back, if you get one at all. [ more ]
Kevin Q Thank you! I'm leaning towards seeing Dr. Shen. Even though it's more difficult to get in with him, and get up to Cleveland to see him, I always leave knowing that I have received the best advice. For example, if it is cuffitis not responding to the meds, would my local GI doc even know about pouch advancement/mucosectomy? Maybe and maybe not. And even if he knew what it was, it's unlikely he's ever performed one. My concern with seeing my local GI doc is being treated with what is in his... [ more ]
Jeffsmom I would see dr shen. At least for a consult. Perhaps him speak with your local doctor as to a course of treatment. But i would start with Shen. [ more ]
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J-Pouch ForumsGeneral Discussion
Done. After three years from initial removal of colon. Whoo Hoo!
MysticobraMysticobra
Mysticobra I hope so too. It's not bad at all over here. Not anything like what was in my mind. And there was nothing good prior to getting it in my mind. I did a change today after four days. Nothing there as in problems. Looked good. No red. No sores. Nothin. Put another on and it's like any other day. You just quit noticing it. At the beginning of course just seeing it hanging there bugged me. But no more. Just another way to poop. And I doesn't hurt! Richard . [ more ]
SolomonSeal "Done." What a beautiful word. It's what I desire most. As I approach removal, I hope I can say the same thing. Thanks for sharing, Richard. [ more ]
Mysticobra I felt the same way before surgery. I was scared expecting the worst because if my past surgeries. But it was a breeze. But. I only had the pouch 26 months. I have to put that out there because the longer you have it. Well . You know. I wish you the best and for your son. There is life and wellness in on this side. I'm living proof. I only hope it all goes better than you both think. It's terrible to live that way. Terrible . I know. Richard . [ more ]
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J-Pouch ForumsGeneral Discussion
What other over the counter sleep aids can I use besides Benadryl & Melatonin?
FM Former Member
andru123 I have had sleeping problems for nearly 20 years (started with UC flares). I've tried everything out there from Tylenol PM to ambien and lunesta. The ambien and lunesta made me sleep walk and actually sleep drive (only did it once when I drew the line and said NO MORE!). I tried atavan but it kept me too drowsy throughout the day. I am currently taking a 1mg Xanax and 2 Tylenol PM 30 minutes before bed. They seem to work well together. I get very sleepy, but I can wake up in the middle of... [ more ]
Winterberry I used Ambien years ago for a few months. It is very powerful and addictive, and can result in memory loss, which can be dangerous. As a less dangerous side effect, I misplaced a huge $$ cheque while on Ambien. We never did find it. Thank goodness it was not a blank cheque. [ more ]
Former Member During my many episodes of dehydration, I suffered from insomnia. I would feel absolutely exhausted all day, longing for my bed, yet wide awake and unable to sleep at bed time. It's believed my insomnia is a result of dehydration, actually a loss of electrolytes rather than a lack of fluids. Apparentlty, the loss of electrolytes can change the body clock, thus feeling tried, sleepy and exhausted through out the day but unable to sleep at night. Which, for many months, is exactly what I... [ more ]
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J-Pouch ForumsGeneral Discussion
"IF" The S%*T hits the fan?
DarkwatersDarkwaters
SolomonSeal I don't know if we would stand a chance as drinking water would already be in short supply and we might dehydrate. That'll probably get us before anything else. Personally, I think that I want to work on some "homemade" ostomy kits that I could fashion from basic supplies, were my supplies to be disrupted for any reason. As for Jpouch, I would raid a pharmacy for antibiotics and hope for the best. [ more ]
Mysticobra Never thought about it. Collapse . If it happens . It happens. I'll worry about it then. Tape a cup over my stoma. I think we will all go at once . Meteorite. Big one. Go out like the dinosaurs . Lol. [ more ]
Jan Dollar Thanks Scott. Guess I am not all that well informed. As for me, if civilization were to collapse, a fiber source would be the last thing on my mind. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
VSL#3
G GraceB
Sabina27 Scott, You are the best!!! Great letter, I also will let you know what happens! Janie, best of luck to you! Sabina [ more ]
Janiep Scott... you're the BEST! Thank you so very much!!! So much going on right now. I feel like I have chemo brain without the chemo! This letter is just amazing!!! Will let you know what happens! Feel good!!! Janie [ more ]
Janiep ❤️
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J-Pouch ForumsGeneral Discussion
Abscess seton drain, any good results?
linzeplinzep
Trojan In 2007 I had a peri-anal abscess, diagnosed by MRI and a procedure to open the fistula and insert a seton. It took a while to get used to, I use a dilator and it made that more uncomfortable so I had the first seton replaced, then the second one broke and I had a third inserted, which I still have. Apart from the hospital visits it's not been much bother - I only notice it when I wash that area. I do sometimes get a little nightime incontinenece (I use pads) but I also had that before so I... [ more ]
Burke Yes, I have a MRI coming soon. [ more ]
linzep Soak in a hot tub. That will help. Mine felt better once it burst. Have you seen your doctor yet? [ more ]
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J-Pouch ForumsGeneral Discussion
Holding in gas
RR Rafal Rybak
Winterberry When sitting on the toilet, try to sit up straight as this seems to straighten the pouch and gravity takes over. Or, try to lean backward slightly, as if you want to rest your back against the toilet tank (just be careful not to put your full weight against the tank!). Wait a few minutes to see if things start happening. Hold this position for maybe 20 to 30 seconds. There is a slight curve to the j pouch so sitting up tall and straight, or leaning back, gives room inside for the stool to... [ more ]
Jan Dollar High levels of gas and foul odors may mean bacterial overgrowth. Ask your doctor for a course of antibiotics to get this under control. Another issue might be your choice of fiber supplement. Many people are sensitive to psylium and it can cause excess gas. I was one of those. It thickened well, but increased gas to a crazy level. You may want to try Citucel or Benefiber instead. Jan [ more ]
CeeeeCeeee Just a couple of suggestions......sit on the toilet for about 10-15 minutes and if nothing or very little comes out, stand up for a few minutes and then sit back down on the toilet. If nothing comes out, do it again. (Once I sat back down on the toilet, I'd cough really hard a couple of times.) Sometimes just a change in position gets things moving....probably why you experience leakage once you go back to lying down in bed. I discovered the coughing hard strategy by accident! Secondly, this... [ more ]
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J-Pouch ForumsGeneral Discussion
Allergic reaction to Canasa?
ktakta
Jan Dollar Sulfite is not the same as sulfa. Sulfa is the antibiotic-like component that is in Azulfidine (sulfasalazine). Sulfa allergy is common. There is no sulfa in Rowasa or Canasa. However, regular Rowasa contains sulfites, which some people can be sensitive to, and it might increase bleeding. I looked up the Canasa prescribing information and the only ingredients are mesalamine and hard fat. Jan [ more ]
Sunflower70 Are you allergic to sulfa, by any chance? I think there might be some sulfite something or other in the canasa. (I know that there is in Rowasa enema and they make a version called Rowasa-SF (sulfite free) for people who are allergic or sensitive to it.) I'm not sure what other type of suppository you can use but you can get the hydrocortisone ones in a low dose and maybe that would do the trick. [ more ]
kta Thank you for your replies. Life has been far too busy and I have finally been back to check. I took the canasa for cuffitis. After the 2nd day, I knew something was up so quit the canasa. Fortunately, whatever was going on cleared up. If I catch cuffitis early enough, I usually only have to do a few days of treatment to calm it down. I will call my doc when I feel the cuffitis coming back on because I sure don't want the swelling thing in the mouth again. I was hoping there was an... [ more ]
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J-Pouch ForumsGeneral Discussion
Food....give me more!
GoofeegutzGoofeegutz
Winterberry Hi, GooFeeGutz. If you love beans, make sure you chew very, very well. Beans have both soluable and insoluable fiber. The soluable fiber is the flesh inside the bean, which is great for thickening stool, and protein. The insoluable part is the skin of the bean (or the pea, lentil, chickpea, etc.). That insoluable part comes out the way it went in: It changes very little travelling through your digestive system. Google insoluable foods and you'll see lists. My doctor advised to go slowly at... [ more ]
Former Member Honestly, just try whatever you fancy and go from there! I was given that advice when I had my reversal. Though, I left it a few months after my ileostomy reversal to try eating salads- started off with small amounts of it. Funny thing- I did the worst thing ever last month and had small salads for lunch (Yes, i did know that salads aren't the best food to have with a jpouch, but wanted to be healthy and try to lose weight...), long story short, after the 4th day I felt so run down and worse... [ more ]
CTB23 Also coffee bothers me, so I drink decaf or chai tea. If I am going out to eat, I may take an Immodium, just in case. Also taking Pepto-bismol with dinner and 2 Immodium before bed. Other than that, no issues so far with foods. [ more ]
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J-Pouch ForumsGeneral Discussion
Kaiser j-pouch surgeons?
I ian337
Goofeegutz Hi @ian337 I had my j pouch surgery with kaiser. my kaiser surgeon Dr. Tam is awesome. He is at riverside kaiser don't know if your close to there. I am just a month post op from my j pouch. [ more ]
ian337 Great suggestion Jan. I'm sure my local GI knows at least one. [ more ]
Jan Dollar I'm in Norcal Kaiser, so can't help you there. But, if I were you, I'd get the list of Socal Kaiser GIs and colorectal surgeons and ask your current docs for suggestions. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Gluten Free Diet - Helped Pouchitis!
S Sweetie1234
Momaioneil Not on any Meds at ALL and have been thru the absolute ringer with top consultants just wondering does coeliacs cause burning usually [ more ]
AllyKat It hurt, was it burning. Just don't remember but everyone interprets pain differently. Maybe you need to go to a teaching hospital where they see a lot of unusual stuff. Good luck I hope you sort this out. [ more ]
JLa ❤️
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J-Pouch ForumsGeneral Discussion
Gluten free after 30 years with jpouch
FM Former Member
Momaioneil Hi Everyone! I know this is an old topic, but i want to see if ANYONE has the same experience as me. I had my jpouch surgery 13 years ago and thought having diarrhoea all the time and FOUL (and I mean FOUL as in, could have been a DEAD RAT inside me) smelling stools was completely normal for people with Jpouch procedure... I always had bad gas which was worse or better, depending on what I ate... Then 2 years ago I got a bad kidney infection and developed burning pain around my kidney area... [ more ]
suebear Gluten is not bad for the vast majority of people! Those that are celiac, intolerant, or sensitive to gluten should avoid it. The rest of us can continue to eat it with no worries. Sue [ more ]
vanessavy Gluten is so bad for you anyway. I follow a Paleo diet for the most part. I also make protein muffins, etc. All grain and gluten free. There are a lot of paleo recipes out there to check out. I am cutting out dairy slowly. I formed food allergy to milk products and eggs are to heavy for me. [ more ]
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J-Pouch ForumsGeneral Discussion
Other -itis problems associated with UC
L luvmyupsman
ehbraun ❤️
Lesandiego Love your terminology of "other-itis"... ha ha I'm going to use this to explain away any and all future symptoms! So far... so good and I have not had any complications in over a year (except my once a year mouth sores). [ more ]
ytcrockpot I used to have sore throats, doctors couldn't figure out either until I found the one. Turned out to be throyditis. [ more ]
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J-Pouch ForumsGeneral Discussion
Cuffitis
JesseP22JesseP22
Scott F Another biologic may well be worth trying. I think you know it's a long shot, though. Dr. Remzi has recently relocated from the Cleveland Clinic to New York City. If I needed a pouch advancement I think I'd be talking to him. [ more ]
JesseP22 I've been in contact with both my surgeon and GI from Mt. Sinai in Manhattan. We are trying to avoid surgery at all costs. We may try entyvio but if that doesn't work I think surgery is necessary. I know my surgeon is very good but I would like someone who does this surgery more than anyone else. Thanks Scott [ more ]
Scott F Jesse, you're telling a story that usually requires pouch advancement surgery (with mucosectomy) to resolve. I'm sorry - I wish I had something easier to suggest. This is a raw deal. Has your GI told you he's run out of non-surgical approaches? Are you seeing a GI rather than a surgeon now? if you decide to have the surgical treatment, it's important to select a surgeon that has done many of these procedures. It's a hand-sewn technique that requires plenty of skill and experience. [ more ]
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J-Pouch ForumsGeneral Discussion
fish oil/omega 3 fatty acids help pouchitis?
kangaroo womankangaroo woman
Jersey Shore Alison, I am 31 years with my J-Pouch and I also need a hip replacement. I have not incorporated Omega's or Tumeric but I am beginning to experiment with them. Best of luck with the hip and your pouch. Probiotics help me but VSL#3 was not helpful. If you would like to email me further you can reach me: michaelshore12@gmail.com . Best of Luck! Sincerely, Michael [ more ]
kangaroo woman Thank you so very much for your kind words. I ordered the turmeric chews from GNC. I still have inflammation from the hip surgery, so I am open to anything that will help that as well. Thanks again. Alison [ more ]
Spooky Kangaroo Woman, What a trying time! I wish you all the best in your recovery. One thing I forgot to mention is that turmeric is thought to have anti-inflammatory properties as well and is quite often used for joint pain as well as general inflammation. I think it has helped me a lot. You may want to consider it. [ more ]
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J-Pouch ForumsGeneral Discussion
How to Get Your GI Doc to Let You Try an Antifungal
KQ Kevin Q
Kevin Q My GI doc just called and I told him I was still having mid-abdominal pain and nausea. While we wait for my h. pylori test results, he wants me to take Prilosec to see if that will help. I've had C. diff before, and noticed a past post where it was discussed whether Prilosec makes one more susceptible to C. Diff. I already take VSL #3, but I was planning on getting some Florastor (s. boulardii) to hopefully prevent me from getting C. diff again. [ more ]
Kevin Q I went home for lunch today and had a sandwich and took some VSL #3. I immediately got very nauseous and got the sensation like my pouch was "sweating," where my rectum kept getting very damp. It wasn't incontinence. It was literally like it was sweating, like it was damp with clear water. I also had to keep urinating. This has happened in the past, and I have no idea what this means. Has anyone else ever had a similar experience, or can provide a guess as to what kind of reaction that is? I... [ more ]
Kevin Q Will do. I will say, the abdominal pain kind of feels like when I had colitis, making me wonder if it's Crohn's. I tried Ramicade for a long time when I had colitis and it never worked, but I've never tried another biologic, such as Humira. I will definitely keep that in the back of my head. The pain feels very localized (center of my abdomen 2 inches above my navel) so would be interested to see what a scope revealed. [ more ]
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J-Pouch ForumsGeneral Discussion
Paleo pouchers...
thumprharethumprhare
skn69 Hi Patty, So sorry for taking so long to get back to you, hopefully, you will read this and find some answers to your questions. The book that I read was called 'Fit for Life' and it was written by a couple (now divorced but not due to the diet) name Diamond. The principals were very much what I outlined above. Vegetables are neutrals, so are fats (butter, oil...) and some other neutrals like lemon juice, vinegar etc... They can be eaten with either proteins or carbs. Proteins are basically... [ more ]
Tom T ❤️
Fight like a girl Hi Sharon...years ago I read an article about dissociating food groups, but I forgot the name and who wrote it. I do remember it being very interesting to me and then life got crazy and I never followed through. Now it appears I am definetly having some issues. Some of my friends are sending me stuff on leaky gut syndrome and paleo diet. But then I saw your post and was reminded of what I read about food groups. Do you have any info or writings that I can search up and I am thinking I need... [ more ]
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J-Pouch ForumsGeneral Discussion
Florastor probiotic?
WinterberryWinterberry
Winterberry Hello, Jan and Joe. It must have been a blip because it happened only twice consecutively where I could not pass urine at all, and now I'm okay. I'm not on antihistamines or decongestants or any other meds, except Cipro for another few days. The thought of a bladder infection and that kind of intense pain on top of pouchitis frequency was too much! Maybe it was a reminder never to wait too long between urinating, never hold it for so long. Cipro has helped 100% with pouchitis and it's like I... [ more ]
Jan Dollar Urinary retention is not a known side effect of Cipro. A full pouch should not prevent your bladder from emptying either. If anything, it should cause more urgency. Are you taking antihistamines or decongestants? They can contribute to this. Most likely it is just a temporary blip. https://www.niddk.nih.gov/heal...ion/Pages/facts.aspx Jan [ more ]
JoVic Yes I can east pretty much anything if I take psyllium husk with the meal. I do stay away from sausage and lots of nuts. That's a sure ticket to a blockage for me! I also get into trouble if I start to skip meals. I get the same taste in my mouth from Flagyl and I think I recently had an allergic reaction to Levaquin. I ended up with what looked like chemical burns all over my feet. Feel better!!! [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Kefir Grains
GaylaGayla
Winterberry Hello, Capetonian. Grains and roughage do not break down (they are insoluable) and so it comes out the way they went in. Nuts and seeds, lettuce, raw carrots, broccoli stalks, cabbage, are insoluable too. They do not break down. They might hurt a lot coming out or cause some constipation, or even diarrhea as your body tries to flush and push out the roughage. Soluable foods break down in your gut. Zucchini (peel the skin!!), mashed or boiled potatoes, fish, egg, cheese, break down easily in... [ more ]
Capetonian Hi Justin, Thanks for your post. I have been drinking kefir a week now and love the idea of getting in valuable probiotics naturally. I am also take a probiotic supplement, but could be different strains to the kefir I must check. I mix a third cup of kefir with a handful of spinach, some avo, a banana a cored apple, a teaspoon peanut butter and squirt of lemon juice. Process in my Nutribullet and drink up for breakfast. I can't say I notice any j-pouch difference, but I know my gut must be... [ more ]
Former Member Capetonian, I've been trying to really keep grains and processed sugar to a minimum. Similar to the paleo diet but not fully. I find my pouch works best with a diet of lots of meat, eggs, nuts, avocados, veggies and fruits. For breakfast I just eat a banana. Lunch and dinner can consist of either salad with spinach, avocado, turkey/chicken, tomatoes, pecans, dried cranberries; scrambled eggs with some ham or turkey added, salsa, spinach and an avocado; some kind of chicken breast baked or... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Diet
BA Bill A
GB2014 I try to ensure I'm hydrated before sitting down to dinner and I drink as much as I want with the meal (a glass of alcohol is excellent for digestion) and "then" I stop drinking for a while after eating. My reasoning is that my guts need water to do their digestion thing properly but if you drink too much water then the guts don't feel the need to extract water from the stool, the food isn't properly digested and gets rushed through you much faster than we want. This is probably a load of... [ more ]
CTB23 I agree, follow your gut! With me, I tend to be a little OCD and find that if I have a routine established, I make sure I don't get dehydrated. Still working on things, only 2 mos out from Takedown. After experiencing severe dehydration and malnutrition (still fresh for me),I am very careful about this issue. [ more ]
LauraElizabeth I was told to avoid drinking while eating because it can cause more gas. We're also supposed to avoid drinking out of straws to avoid gas, but drinking out of straws helps keep me far better hydrated and I don't really feel a difference when it comes to gas. They're just general guidelines - you need to find what works for you. Staying hydrated is CRITICAL, so do whatever you find is best for your body and habits/route. [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Always exhausted
G grandmaof1
Former Member Yeah, more activity, exercise equates to more calories, fat burnt, however, there has to be a balance to maintain the desired weight, otherwise, more activity, less food will eventually result in less weight/body fat, just like more food, less activity will result in increased weight/body fat. However. weight/body fat can be reduced without exercise by reducing the amount of food eaten, although such a method can take longer to achieve the desired results and probably without the muscle... [ more ]
Scott F Exercise makes a big difference for me when it obstructs big meals. I had martial arts classes shortly after dinner two nights per week for a few years. I think that was the biggest factor in losing a bunch of weight. [ more ]
Former Member Exercise alone won't reduce weight unless exercise is excessive and extreme. A reasonable level of activity and exercise, thats fits your current level of fitness, combined with a reduce diet would be more beneficial. Even without exercise, eating far less, smaller portions will make all the difference. Although, your currently level of exercise, is better than nothing and will improve your fitness. [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
Exhaustion
C chrfor
aka KNKLHEAD I was more tired than I wanted to be at about a year after my last takedown. I am not sure what changed, but I feel much more energetic during the day now. Yes, I doze off watching television at about 10:00 at night! But I sleep well. A true sign that I feel good is I invent putter projects. I am also exercising a bit more, ten mile bike rides (I try to keep a good pace) almost every day the last few weeks. The advice here is great, but for me I find that exercise gives me more energy, but... [ more ]
Jan Dollar There are somany causes of fatigue that it is impossibe to list them all here. But, the most common and likely have been mentioned. One cause that is often overlooked is chronic inflammation, such as pouchitis. For me, inflammatory arthritis was a big factor and severe fatigue is a signal for me that my arthritis is flaring. When you have chronic pain, you tend to block it out, so a flare can sneak up on you. Sometimes I need a short course of prednisone to snap out of it. Jan [ more ]
skn69 Different sorts of exhaustion are caused by different sorts of deficiencies...I have chronic exhaustion but not always...meaning I expect it but when it doesn't come, I am thrilled. I have found that yes, the number 1 cause is dehydration and loss of electrolytes...and yes, I confuse hunger and thirst very often. I tend to snack when I should be drinking water. I snack when I am tired instead of drinking. So, I am probably over eating and under-drinking...meaning that I am often... [ more ]
See all 21 replies...
J-Pouch ForumsGeneral Discussion
Biological plug
JeffsmomJeffsmom
Jeffsmom Thank you everyone! So far so good. I'm afraid to be excited! The setbacks feel so normal, how sick is that. I'm always waiting for the other shoe to drop but I'm so hoping that there are no more shoes being thrown at us. poucho, I wish the best for you as well. You really have been through the ringer as well. If you come to NY let me know! dianne [ more ]
Pouchomarx I'm ok. Just finished with iron infusions and going for hernia surgery next month. Small hernia where ileostomy was. Besides some minor leakage here and there I am doing fairly well. Hope things work out for your son!! [ more ]
Jan Dollar Really great news! Fingers crossed that this holds. He's had so many setbacks and deserves a break. You all do! Jan [ more ]
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J-Pouch ForumsGeneral Discussion
low energy, no large colon
M maddie18
Jan Dollar Actually, B12 is absorbed in the terminal ileum, not the colon. So, unless you had some of your ileum removed, or have pouchitis, you should be able to absorb it. Plus, if you are older (50s, 60s or more), you can tend to be deficient, even with a colon. Jan [ more ]
maddie18 thanks for sharing [ more ]
Itsanewworld Hi. I went for my annual physical 2 months post takedown and my dr put me on vitamin B12 as he found it to be low which is a direct result from not having a colon. [ more ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
Fiber/sleep/tenesmus
ConniesConnies
Janiep Thanks Scott ... you're right! VSL#3 DS Janie [ more ]
Scott F Just so no one goes searching for a nonexistent probiotic: the correct name is VSL #3 DS. The DS (double strength) form is by prescription only, and some insurance plans cover it. I use a lot of it. It works best at preventing pouchitis. [ more ]
Janiep Connie I had the same problem and some days (nights) are better than others. I always take 2 Lomotil and 1 Imodium before bedtime. I also started a probiotic that is a medicinal probiotic that has changed my life! It's called DSL#3 which has to be ordered by your gastro doctor. It comes in powder form and needs to stay refrigerated. I mix it with applesauce and it's really changed the quality of my life since the reversal!!!!!!! Try it... it can't hurt!! Good Luck Connie and hang in there! [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
BM help needed!
GoofeegutzGoofeegutz
Goofeegutz Thanks everyone for the tips! I've been taking fiber at breakfast and dinner and that has helped. I got me some decaf coffee too. I just have to find the right balance! [ more ]
Spooky On the upside, 5-6 BMs only a few weeks post takedown is fantastic. Many pouchers do not ever reach that low in frequency. However on the flipside, thick stool and straining to pass BMs is not fantastic, and definitely something you want to avoid. Even now, at almost 9 years post takedown, I prefer my stool to be slightly looser as they are easier to pass. Your stool consistency may naturally improve over time as your body continues to adjust, but in the meantime there are things you can do... [ more ]
CeeeeCeeee A bowl of oatmeal does the trick for me. If/when I feel the need for some help a bowl of oatmeal makes it easier to pass BMs. If I want really fast results I eat a Granny Smith apple....skin and all. Keep hydrated! Use a barrier cream and make sure your back end is really clean before you apply the cream. I, too, have a bidet and it is the best thing I invested in after my takedown. I've had it almost 15 years! Best wishes! [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
CDC (center for disease control) concludes link between flour and E-coli
skn69skn69
Scott F This contamination has nothing to do with the reasons people might choose to avoid flour in general. Almost any food product can become contaminated, if there's a handling or packaging screw up. [ more ]
Patricia Walker Not surprised re flour. alternative practitioners told me to avoid flour a long time ago [ more ]
Jan Dollar Not good! Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Something blocking output
U UjohnjC
Spooky The bumps sound like hemorrhoids. If they are large enough they can theoretically make stool difficult to pass, especially if there is accompanying local inflammation. Hemorrhoids are usually also associated with pain and/or itch and sometimes bleeding, so if those symptoms are also present then hemorrhoids are the likely culprit. That said, you may have more than one problem going on. Difficulty in passing stool can often be the result of stricture (narrowing) at the opening of the pouch. I... [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
New Research Points to Fungus
BlakeBlake
skn69 I read the article last week...they believe that it is a combination of a fungus and certain bacteria mixing together...if you have already lost your colon...Well it is too late to get it back But if you are still fighting the crohns then it may help you in the near future...they are still testing...not sure how much of the study results are ready to be used widely...here they are talking about it but not discussing using the results....I guess like many other findings...it is to be... [ more ]
hattie ❤️
See 1 reply...
J-Pouch ForumsGeneral Discussion
Cuffitis Treatment if Canasa is Not Working
KQ Kevin Q
Kevin Q Thanks Carlos! I've had my pouch for 8 years and this is the first long-term complication I've had, so I suppose I'm "lucky" in that regard. Good luck with your pouch. It will get much easier as it adapts to its new function. That's interesting about Pentasa. Even though they're both mesalamine, it seems like I could possibly respond better to a different formulation. I read you can also take oral pentasa as well. Definitely another option to explore. I'm still figuring what diet works best... [ more ]
Carlitos Hola Kevin I got a strong and painful Cufittis immediately after my ileostomy closure and my Dr. prescribed PENTASA 1 gr for 3 months. I only have 1 month with the treatment but, after the 1st week using the suppository every night, the blood was gone and the pain has been slowly fading out. It is Mesalazine as well, similar to Canasa, and it might suit you better. Also I only have 1 month using my pouch and I'm still trying to figure out which diet is the best for me, and a banana milkshake... [ more ]
Kevin Q I'm wondering if I should try to push for a mucosectomy rather than trying a biologic. I suppose there are risks associated with both. Although biologics seem to do wonders for many, in light of the cost and potential ongoing side effects, I wonder if a mucosectomy would be a safer option, in terms long term success. FYI, I have been on Canasa permanently for a year and a half and have also tried Anucort. Although the Canasa keep my symptoms at bay for the most part, I never felt totally... [ more ]
See all 9 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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