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J-Pouch ForumsPouchitis
Confused about Pouchitis symptoms
R Rick 1971
Rob McLorinan ❤️
gutless1993 ❤️
rrubio79 I had my last surgery total colectomy/j-pouch creation/temp ileo 6/14/2014 I haven,t had any real sleep yet, for I wake up about every two hours or so at night to several b`ms. I`m thinking I have pouchitis or something isn't right. my surgeon keeps telling me it will pass but I`m starting to worry , I have 10 to 20 b`ms a day, some diarrhea, also some blood on toilet paper. don`t have unusual smell but I do have some gas. well, I may have to get second opinion. [ more ]
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J-Pouch ForumsPouchitis
yeast issues question
R Rebe0505
Rebe0505 thanks everyone was freakin out a bit about another antibiotic caused thing..but it seems controllable and i appreciate your feedback.. [ more ]
Rebe0505 jan i think mine is mild because it is not constant and appears to get better with my using witch hazel wipes..so i think i might try first the otc first.. [ more ]
Rebe0505 ct in answer to your question about probiotics..after writing site i dropped a line to dr. shen told him i had itching..he said to double up on my align(his probiotic by chose)see if that helps first..so he was not rushing off to drug yet..so i take away from this that perhaps the probiotics at least in his mind might be of some help..i plan on doubling up on align regularly now..ha its only money!!!! [ more ]
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J-Pouch ForumsPouchitis
Flagyl
J Jenny85
OKSTFAN Hi Jan, What's this C difficile I keep reading about? None of my doctors have ever talked about it or brought it up. I have had UC and/or Crohns for over 40 years. [ more ]
Jan Dollar I would suggest testing for C. difficile and CTM (cytomegalovirus). Neither one would improve with those antibiotics, except for some strains of C. diff would be suseptible to Flagyl. Barring that, you are left with ischemic pouchitis (from poor blood flow). Hopefully, it is not that! Jan [ more ]
Jenny85 Thank for responding everyone. I have been on cipro now for the past 3 days and haven't really seen that much improvement. I take probiotics daily and have been for many years. I really think this help with me not getting pouchitus. However, I'm not certain I have pouchitis...but what else can it be. My surgeon scoped me and said it was mild/moderate pouchitis so I guess it is. Any help would he greatly appreciated. [ more ]
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J-Pouch ForumsPouchitis
xifaxin question,ct,alleykat ,boys mom and anyone else
R Rebe0505
AllyKat I'm on 550 twice a day. The Augmentum seemed to get it to work again. I also take a mid day probiotic be it 24 hour yogurt, kefir, VSL, or whatever probiotic I have in the house. And canassa at night. Also I just experimented taking pepto bismol in the am and that has really helped. And I take gummy fiber. Lots of inflamatory vitamins like vit d! turmeric! fish oil, etc I was once on Xifaxan for over 2 years when I developed trush and my GI had me stop it. Then I got bad pouchitis again and... [ more ]
Rebe0505 thanks .. [ more ]
liz11 im on 550 twice a day when im on it [ more ]
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J-Pouch ForumsPouchitis
Endoscopy/pouch scope results
AllyKatAllyKat
liz11 are you going to rotate of the xifaxan and onto something else then back to xifaxan? so that it doesn't wear out its welcome? also beware of all that sugar and bad carbs... don't want xifaxan to have to fight that hard [ more ]
AllyKat Yes. Even a little bit of inflammation effects me bad yet some people have no problem with a low level. [ more ]
boy's mom congrats on good looking pouch Some drs have said that it is normal for pouches to have some level of inflammation. Have others heard that? [ more ]
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J-Pouch ForumsPouchitis
jan,scott question on quantity of antibiotics and c-diff
R Rebe0505
Jan Dollar As far as I know all fluoroquinolones have the same side effect profile. The main reason to choose one over the other is bacterial sensitivity. The more you use any particular antibiotic, the greater the risk of bacterial resistance. http://www.merckmanuals.com/pr...luoroquinolones.html Jan [ more ]
Rebe0505 jan would love to pulse off..but right now it just does not work but will try again when i finish up my second week of levaquin..by the way since levaquin in same antibiotic class as cipro do you know if it is as detrimental as cipro in that cipro can cause various side effects? [ more ]
Jan Dollar Scott, I could not find my original source, which was probably a few years ago. Of course this was an estimate, based on how widespread this bacteria is in the environment. I think also, that article did not discern pathogenic C. diff (toxin forming) from non-pathogenic C. diff. Anyway, this Cleveland Clinic article states that colonization can be as high as 50% in hospitalized patients. http://www.clevelandclinicmede...difficile-infection/ Jan [ more ]
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J-Pouch ForumsPouchitis
Unable to do the basic's
Silver20Silver20
Silver20 I had an amazing GI in DC at Walter Reed on base, but they merged with Bethesda and he switched mainly to PEDS. He'll still see me but it'd be hard to get into his schedule. So I got another GI that's closer but I'm talking to his assistant 99% of the time and when he is talking to me he's just rushing everything. I'll most likely see about going to DC again since its better. That GI has been with me since 09. [ more ]
Scott F Is it possible that you may need a different doctor, do you think? Is this your original surgeon? Many of us transition to a gastroenterologist who understands J-pouches. [ more ]
Silver20 I have not. I'll go ahead and request one though. [ more ]
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J-Pouch ForumsPouchitis
will it ever get better
T techwrench
techwrench Thanks for all the reply's! I started a new probiotic 6 days ago.I'm going to bathroom less frequently,and passing less water and seldom see blood now.The anti-depressants have taken the edge off, and I feel more at ease now. When I was scoped back in March,the Dr. said he didn't see any Crohns.I go back on August 7th for another scope,so we'll see. [ more ]
albertagirl I was being treated for pouchitis for nearly two years. Turns out it wasn't pouchitis, it was Crohns. Although I had been diagnosed for years with UC. Ulcerations were now in the pouch. I was given remicade and I felt better almost immediately. Good luck! [ more ]
Scott F Cipro alone stopped working for me after a couple of years. Flagyl had failed when I tried it. Most recently I had the idea of Cipro and Flagyl together. For now, at least, that's working brilliantly. Shen does write about combining antibiotics when pouchitis becomes difficult to treat. [ more ]
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J-Pouch ForumsPouchitis
jan question on threads
R Rebe0505
AllyKat I'm glad CT that you r so improved and u too Rebecca, taking a half dose of meds is great! Yes, it is frustrating trying to keep r bacteria in check. Less than a month ago I was so sick with a inflamed pouch and ulcers and today my pouch is healthy. And it could change again at any time. [ more ]
Jan Dollar Yes, Rebecca, it is good to know that even when things look really bad, it is possible for health to be restored. All it takes is the right approach, patience, and tincture of time! The really frustrating part is never really knowing if remission will last, or if relapse was preventable. If you can accept some setbacks and compromises, life is much more pleasant. Expect perfection and you'll never be happy. CT, yes, older posts do get trimmed (due to storage constraints), but I don't know if... [ more ]
Rebe0505 thanks jan i will in future check on top for posting.. and again i am thrilled ct barrister is up and at em after what appeared to be a difficult time a few years back..he improved thats good news for him and great for site members to hear something so positive..hope can still burn eternal in our hearts!!!right now he appears to be doing better than me who for a time on diet few months back (dec)did not need antibiotics..however that has changed and presently back to one half normal dosage... [ more ]
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J-Pouch ForumsPouchitis
seeking more info on vsl#3
R Rebe0505
Rebe0505 it was for me when i tried it many years ago..made me worse..did not want to keep going with it.. [ more ]
techwrench The VSL#3 at 1 packet per day was too strong for me.It caused butt burn.My GI said that is a common complaint he hears.I am trying a milder product called Ultimate Flora (80 billion -14 strains)by Renew Life and tolerate it well.I take it spaced between antibiotics 2 times a day.Maybe it's possible the VSL #3 is too strong for some people ? [ more ]
AllyKat Thanks, I did that for a while as well. Was just curious if I was doing the right thing. Been thinking of starting it up again. My surgeon told me to rotate different probiotics every three week. [ more ]
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J-Pouch ForumsPouchitis
Biologics
O OKSTFAN
Jan Dollar Humira and Simponi are newer drugs. Humira has been approved for UC for a couple of years I think, and Simponi even more recently. Jan [ more ]
JHendrix Well I certainly will not be using Remicade! (Hopefully never need it either). I wonder why they didn't offer Humira or Simponi - although this was a number of years ago. Thanks for the info. [ more ]
Jan Dollar Hendrix, I believe your admonition is specific to you, and not a general warning. Many people stay on it for many years. You must have had a reaction with the first infusion. Once you exhibit an allergic reaction, subsequent reactions can be much more severe and even life threatening. This is much like the penicillin allergy, where you survive the exposure, but another might kill you. Remicade is especially prone to triggering allergic reactions because it is based on mouse protein. Humira... [ more ]
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J-Pouch ForumsPouchitis
iron supplements not good for those of us with compromised guts after all!!
R Rebe0505
OKSTFAN My iron level gets low only when I have a Crohns attack and lose a lot of blood with my BM's. My Hematologist says 8 is too low. I really don't remember the normal range for iron. He doesn't recommend iron infusions until I get below 15 or so. Also, my private insurance will not approve paying for it until it gets really low. [ more ]
Rebe0505 i take some liver pills from radiant life instead of iron pills..apparently can get iron this way without side effects to intestines some people have.. d. shen did not think my number of 36 was too low because he told me not to take to much of it..besides the hair loss thing kind of just went away(it was just a matter of a few months i noticed it)..thinking now it had nothing to do with iron..and came across an old blood test from 2008 and it had iron at 30 and created no red flag to drs at... [ more ]
Marianna Since needing a blood transfusion for my pouchitis, I have been told to take iron pills daily. I have not had any issues with them to date.... [ more ]
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J-Pouch ForumsPouchitis
ct barrister from rebecca
R Rebe0505
elsiezee My husband notices that he has less frequency and feels better. We believe that he has sibo because when he has had tests his pouch looks to be in good shape. He didn't see results in the first few days but about after a week. Wormwood is not supposed to be taken long term so he doesn't stay on it for long periods of time. [ more ]
AllyKat K your all right, I've been depressed and needing my chocolate. my Dad just passed on top of this flare up I promise to go back to Paleo this week or look more into SCD. [ more ]
liz11 ditto what CT said. None of this is an overnight process. [ more ]
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J-Pouch ForumsPouchitis
one antibiotic usage vs. many
R Rebe0505
liz11 now jan that sounds exactly like something dr. shen would say. and to think you haven't even met the man! [ more ]
Jan Dollar ...or money down the toilet, so to speak! Jan [ more ]
liz11 Shen is blah on probiotics. He always says theres no real medical evidence. However he does say try it to lots of people. Thing is though... you can't change multiple variables at a time and run a valid experiment. So if you are throwing antiotics and probiotics together how do you know if anything worked, and if so which one. Also if antibiotics got you back to a better equilibrium on their own.. why throw fuel on the fire (aka probiotics) [ more ]
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J-Pouch ForumsPouchitis
Dark Blood in Stools?
drone3drone3
drone3 Thanks Jan, so so informative and helpful. -d [ more ]
Jan Dollar Sacroiliitis: this can be active IBD related or not, or both. This means that you can flare because of active IBD or it can have a completely independent course. If this is enteropathic arthritis (a type of spondylitis) then it is both associated with IBD, but still may have an independent course. If it is ankylosing spondylitis, it is independent of other autoimmune diseases you may have. Either way, the treatment is the same. NSAIDs are a first line of treatment, but can be problematic for... [ more ]
drone3 Ok, here's the update on last week's tests. I had endoscopy and gastroscopy, they found minor inflammation in the stomach and superficial ulcers in the pouch due to pouchitis. They also tested for CD and it came back negative. And here's where it gets interesting, i also had an MRI on my lower back as i had to stop NSAIDs and thought maybe i would need more localised treatment for a slipped disc, they also checked SI joints as suggested. And what do you know, it wasn't my disc after-all, it... [ more ]
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J-Pouch ForumsPouchitis
Am I on the path to chronic pouchitis?
B bostwis1
Jan Dollar I'd be more worried about you than the elderly patients! Nursing homes (and hospitals) are especially notorious for incubating virulent strains of antibiotic resistant C. diff. Jan [ more ]
bostwis1 I don't start my new job until end of July. I am currently working contingent in a nursing home. Probably not a good idea to work with the elderly. I think I'll avoid picking up hours until I'm done with the antibiotic in two weeks. Hopefully the Vanco does it's job, because plan B is fecal transplant. I know people have done fecal transplant, but it honestly creeps me out. I feel anxious being off the Cipro. I keep expecting the cramps and urgency to come back. [ more ]
Pluot Just wash your hands thoroughly after using the restroom (as everyone should). Most people are not susceptible to C. diff and many people are even colonized with C. diff without symptoms because their healthy guts keep it in check. I know you work in healthcare so I would check with a boss or administrator to see if there's a policy about you going to work when you've tested positive for C. diff. I can imagine that since patients who are C. diff positive are usually placed on contact... [ more ]
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J-Pouch ForumsPouchitis
Question for the "lucky" ones who had the pouch bleeding
I Ikh
Marianna I have chronic mild pouchitis and the only symptom I have is bleeding. I find it does not get worse over the years, but occasionally I have bouts of more bleeding. My doctors says I do not have Crohn's disease. [ more ]
AllyKat I Have had bleeding and I do not have CD or a cuff, it was stripped. Personally, I think u should be scoped and have no idea why your doctor would not preform one. F you look at my signature u will see I've been on every drug. I too was afraid of the endocort but had absolutely no reaction from it? It is not a long term drug so you would still need to find something else if needed? My GI treats. E. Rey aggressively when I have a flare up? When I had bleeding it took about a week to get it... [ more ]
jeane I do get pouch cramping at times even on entocort, but my ansl symptoms have inproved since going in it. I do not like being on it anymore than the next guy but I'm willing to do anything to save my pouch. I was afraid of permanent damage and scarring if I did not start this medication with chronic pouchitis for over two years. I never took biologucs with UC but would even be willing to try these to save my pouch and avoid additional surgeries. I wish I did that with UC as I may not have had... [ more ]
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J-Pouch ForumsPouchitis
Why why why
AllyKatAllyKat
Jan Dollar Yes. Basically look up IBS and the treatments are the same. It is possible to have both IBS and IBD (my husband does). Jan [ more ]
AllyKat Thanks Jan but what Is IPS? Irritable pouch syndrome? [ more ]
Jan Dollar When you rule out everything else, I think you are left with IPS, which basically is incurable. You just "manage" it, the best you can. The other option is to consider "upsteam" issues, AKA Crohn's. Hopefully, it is not that, but I suppose that at this point, any answer is better than no answer. Jan [ more ]
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J-Pouch ForumsPouchitis
What is wrong with my pouch?
Alli AndersonAlli Anderson
AllyKat Same here. I just had a scope and the pouch only mildly inflamed is giving me a hell load of trouble. But I can't get a doctor to reverse this mess. I've been trying for 4 years. [ more ]
Alli Anderson Thank you! I will post on that board. [ more ]
Lambiepie Alli, are you talking about pouch removal and permanent ileo? If so, look under "Ostomy and Skin." There are several people who had this done and are sharing their experiences. I know what you're describing; I have all your symptoms, too. It's exhausting. [ more ]
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J-Pouch ForumsPouchitis
Help with constant "D"
AllyKatAllyKat
Rebe0505 alleykat so so sorry to hear about your latest issue..non stop D SOUNDS LIKE WHAT JAN SAID NEED FOR C-DIFF TEST..please keep us updated as to find..also meanwhile if you read my thread on pedilik (babyhood section)that you can buy in grocery store..keep drinking when depleted for D..eat bland and low carbs.. [ more ]
Jan Dollar My first thought would be either norovirus or C. difficile. If it is norovirus, it should play itself out in a few days. C. diff, not so much. Xifaxan would not help either one. Jan [ more ]
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J-Pouch ForumsPouchitis
update on visit to dr. shen..
R Rebe0505
AllyKat Thanks for the update. [ more ]
Rebe0505 thanks jan,well said. ... yes i think there is no doubt in my mind i have totally come to accept i have and will always have issues and not normal function ..and yes its the less manageable symptoms of course i am trying and hoping to get a handle on ..i think any of us who hold onto our pouches have come to terms with accepting this and we are a strong group of souls we are!!! hope burns eternal in us humans!!!! a little more and longer time of manageable symptoms between the not so... [ more ]
Jan Dollar Rebecca, I think you pretty much said it all. There is no one best plan. There is no perfect roadmap to get us to great function. If we did not have a messed up GI tract, we would not have to have a colectomy in the first place. Once we understand that the j-pouch is just an option to get us out of our previous pickle, not to restore us to when we had the carefree life without bowel disease, maybe we can relax a bit. Some may think of it as giving up or settling, but i like to think of it as... [ more ]
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J-Pouch ForumsPouchitis
Cipro and flagyl, yuck!
SavannahSavannah
AllyKat Flagyl, oh g-d, no. The last time I was on it my system shut down and I ended in the hospital for a week. I have no problems with cipro, just never did anything. [ more ]
Rocket Savannah, I ditto CJB and techwrench. I have been on both Cipro and Flaygl and its the Flaygl that is so disgusting. I too have this horrible metallic taste in my mouth and all food taste like crap. Perhaps I should switch to dog food the next time I am on flagyl. That would be an improvement over flaygl. Rocket [ more ]
Savannah Thank you techwrench and CJB. I have taken my last dose of flagyl and hope to feel better soon on the cipro alone. Thanks also for the warning on the sun. My kids and grandkids are coming for a visit tomorrow and I don't want to be lying on the couch feeling nauseated. At this point I can't even tell if the c-f cocktail has had a healing effect on my inflammation as the flagyl side effects have taken center stage in the misery domain. Blah!! [ more ]
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J-Pouch ForumsPouchitis
???Prefect Blookwork???
AllyKatAllyKat
Rebe0505 yeh aleykat my blood work after exam like you and ct barrister..however the ups and downs with pouch now continue..check out my update after shen.. [ more ]
boy's mom A cal protectin test might be helpful to know if that shows inflammation. Besides the night leakage are you feeling ill? [ more ]
CTBarrister My blood work is also perfect. Having chronic pouchitis does not mean that your blood work or even your cardiovascular picture will be impacted. Other than my pouchitis I have no health issues. My blood labs, PSA, cholestorol, blood sugars etc. are all excellent according to my Doc, my EKG was excellent, I look 10 years less than chronological age according to my Doc, and when I did the stress test last year the cardiologist told me I had less than 1% chance of developing cardiovascular... [ more ]
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J-Pouch ForumsPouchitis
Update on diet to "cure" pouchitis
JillyJilly
Rocket I am going to to try the FODMAP diet myself. I printed a lot of the foods allowed and not allowed. Even some foods I am allowed I cannot eat. But I got to do something. Rocket [ more ]
rachelraven I eliminated and found my triggers with FODMAP. One thing they say is an awful trigger is onions, but I am not bothered at all by them. It is working for me, though. Bloating down to almost nil now. I'm about 95% gluten/wheat free (some days 100%, just depends). That's made a big impact on how I feel. I did not have pouchitis, though, nor was I on abx, I just began to feel really bloated and miserable, and this has helped a lot. [ more ]
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J-Pouch ForumsPouchitis
Long Term on Cipro
K Kratzer777
CTBarrister I took cipro for a long time and had no side effects but did develop a severe yeast infection and warts simultaneously, which is what happens with high dosages of broad spectrum antibiotics taken over a long period of time. The bacteria in your skin is killed to such an extent that the other microorganisms in your skin, namely fungi and viruses, begin to occupy the empty space formerly occupied by the dead bacteria. This is why I never stay on cipro more than 2 weeks before going off or... [ more ]
Rebe0505 wow,wow i agree with jan do not know why a doctor knowing you have so many bad symptoms would keep you on cipro..first rule for doctor.DO NO HARM..what was he thinking and truthfully(sorry) what were you thinking... thats a long time to have so many terrible side effects without thinking hey something is wrong here..i must stop taking it.. there are so many other antibiotics that would not effect you at all to try.. we all talk about this on the site a lot about all the antibiotics one can... [ more ]
Senor Aguas I alternate between Flagyl, Cipro, and VSL3 on my own schedule. You might try Flagyl even if it hasn't worked in the past. I get a side effect that you haven't mentioned. I tend to get a rash (likely yeast) on my face near my mouth when I'm on antibiotics. I take similar doses of antibiotics when I'm on them. [ more ]
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J-Pouch ForumsPouchitis
Iron Supplements
JulieB71JulieB71
AllyKat When my iron is low I get iv iron? My GI foes not want me on any iron pills. Hate them cause I get migraines after. [ more ]
JulieB71 Rebecca, The iron supplement information I did not find in the b.t.v.c. book but on the website. It had list of legal and illegal foods. And why. You might find it very interesting. http://www.breakingtheviciousc....info/legal/listing/ Thanks for all the input. I have currently stopped taking the iron supplement and have started today another round of antibiotics. This time Cipro at 500mg 2x a day. Had also started taking VSL#3 a couple of days ago. Should I discontinue use of VSL#3 while on... [ more ]
nicole450 Hi Rebecca, I haven't been taking them recently because my iron levels are fine now. The SCD list that I'm on suggests eating liver, which I have a hard time doing, if you're having iron problems. Food is always the first choice in getting nutrients the body needs because it is recognized by the body differently than supplements and is the most bioavailable. Any chance you can eat liver? Many people are able to raise their iron levels significantly by just eating liver regularly. On the... [ more ]
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J-Pouch ForumsPouchitis
check supplements if you are following scd..or other diets limiting carbs..
R Rebe0505
Jan Dollar So true, Rebecca! Sometimes we forget about ALL the things we put into our bodies, assuming that we NEED them because of the nutrients they provide. But, they always contain things other than the nutrient we need and all it takes is for us to be sensitive to it. Especially once you have become sensitive, it can take smaller and smaller doses to trigger the response. Jan [ more ]
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J-Pouch ForumsPouchitis
Diet to eliminate pouchitis?
JillyJilly
Rebe0505 jilly thank you for kind words.. however,rereading your thread about "where to start" again..you got lots of info to process and a lot of it still i think somewhat vague and still not answering your question simply ..so i am thinking you perhaps begin with purchasing the book..breaking the vicious cycle by elaine gottshall..i recommend that because it clearly details what you can and can not eat and why..it also gives you some receipes and sites you can follow up with to obtain products and... [ more ]
Rebe0505 i alleykat might have found my culprit as to my scd ...eliminate iron pills given to me a few months ago for unrelated matter..seems for sure they could cause havoc and possibly the up and down i had over last few months..so far so good but only a few days into it.. resisting resistant starches (haha) until i test this out.. [ more ]
Jilly And thanks to YOU, Ms. Rebecca! You moderated the beeGEEbees out of this discussion thread! I love your summations and acknowledgements...THE BESTEST! I sincerely appreciate all of it and your brilliance... Thank you Thank you Thank you. and to all who replied, i THANK YOU! I forwarded everything to my doc! wish me luck! [ more ]
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J-Pouch ForumsPouchitis
Creon and Pentoxifylline and Stricture
K katenet
katenet What digestive enzyme do you take? I take Creon [ more ]
clouseau Katenet, I never feel any different but dr Shen I needed to have the balloon dilitations done to elevate blockages. I also take a digestive enzimes before every meal to decrease chance of blockages. [ more ]
katenet Hello all! So I just came back from Cleveland for stricture dilation. Can anyone feel a difference after this is done? I don't think I can feel anything. [ more ]
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J-Pouch ForumsPouchitis
is this pouchitis?
K kdmos75
Jan Dollar The type of pain you describe sounds more like an anal fissure than pouchitis. Flagyl might help by thickening the stool, but that is about all. Hot soaks (sitz baths are the primary treatment. If you do a search for anal fissures, you'll find many posts about it. Jan [ more ]
See 1 reply...
J-Pouch ForumsPouchitis
C.Tbarrister/diet
R Rebe0505
Rebe0505 i cannot help s to the resistant starches..when i emailed dr. shen he said it was just a theory for now.. for starters however a lot of us have had some good results with scd..diet..check that out..remove all starchy carbs and sugar not natural as fruit..pretty much all protein good..meats poultry ,fish eggs..veggies are good..fats such as olive oil,fruits,certain hard cheeses like cheddar,swiss..home made yoghurt..very easy to make..yoghurt maker can be ordered from lucys kitchen as well a... [ more ]
JHendrix I have tried to get a better understanding I have looked it up and am no further ahead. Is someone able to provide a link that helps explain it in relation to the j pouch? I have found academic papers which just baffle me (http://edepot.wur.nl/49267) and other sites that seem to be more about blood glucose and diabetes. As you can likely tell, I'm feeling frustrated. It's exacerbated by feeling increased bowel urges and cramping this morning. I don't know what to eat and what not to eat. [ more ]
Rebe0505 hi best to just look it upon internet..just did myself and one guide to resistant starches pretty much outlined it very well..as to my issues..sibo ..it appears it is still not been shown that resistance starches flush out bad bacteria..and deepening can give pone with compromised gut bloating,gas,cramping ..but some people have indicated some success with it.. [ more ]
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J-Pouch ForumsPouchitis
Blockage
K Kratzer777
Jan Dollar Things should simmer down in a few days. Your gut takes a while to calm down. It does not mean the obstruction is ongoing. If you feel like things are improving, they probably are. It is normal to worry about reoccurrence. Jan [ more ]
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J-Pouch ForumsPouchitis
rebe update on my diet and sibo
R Rebe0505
JHendrix I have been trying to follow this thread and I am totally confused by resistant starch and how it fits into the SCD. I have looked it up and am no further ahead. Is someone able to provide a link that helps explain it in relation to the j pouch? I have found academic papers which just baffle me (http://edepot.wur.nl/49267) and other sites that seem to be more about blood glucose and diabetes. As you can likely tell, I'm feeling frustrated. It's exacerbated by feeling increased bowel urges... [ more ]
Roni* Lol! [ more ]
AllyKat Not just any starch RESISTANT STARCH Bobs potato starch work up to 4 T slowly if you don't want to add cold pasta, rice, beans, etc. Google you'll see a list of foods. [ more ]
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J-Pouch ForumsPouchitis
Really struggling
SavannahSavannah
rachelraven When my outlet narrowed, and I needed a dilation, I had symptoms similar to yours: couldn't go or couldn't go enough, trapped gas I could only pass in contorted positions, MISERY (I was begging my surgeon for an ostomy, it was so bad). You could have a stricture, like I had... Did he do a rectal? My surgeon said my outlet was the size of his pinky. I have had dilations under anesthesia, and I'm good, not my past great. But good. [ more ]
See 1 reply...
J-Pouch ForumsPouchitis
Ok recent scope but awful pain
J jeane
TE Marie Hopefully you are taking a short course of prednisone. Did Dr. Shen evaluate you for IPS? I'm sure he did but the description of you non inflamed pouch sounds like mine and I have IPS. I was diagnosed with this by Dr. Loftus at Mayo. Dr. Shen has written several technical papers including sections about IPS. The descriptions of your pouch sure sound like mine. I'm not talking about any of the rest of it as your cuff problems have not sounded like my cuffitis. I think you have tried anucort... [ more ]
lholdem I don't have much to add other than say I've taken both entecort and prednisone - I HATE prednisone as it gives me the weirdest side effects, whereas I've experienced also none with entecort. I hope that's encouraging to you! [ more ]
jeane Interesting. I have bad a few MRI's that have been pretty unremarkable, but that's not to say I could still be experiencing some of the things you have mentioned. So far with about a week or more on sugar free, gluton free diet and no starches at all, I am feeling better. Still think I may need that entocort and just waiting on stool results before bellying up and stsrting it. I hated prednisone and really hope the side effects of this are less as has been indicated. I hope I don't have to... [ more ]
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J-Pouch ForumsPouchitis
Cant seem to get rid of my pouchitis
FG Fernando Gonzalez
Rebe0505 seriously you have gotten good advise here to make the elimination of carbs more definitive get a hold of ..breaking the vicious cycle..elaine gottshall..its detailed on what carbs you can or cannot eat and just about everything else..its better having a clear guide..if you follow it you can order some treats from..digestive wellness.com to get you over the lac of carbs..you need to start somewhere with clear guidance ..this is a good start..if you have some success which should be clear in... [ more ]
Fernando Gonzalez Thank you for your recommendations. I have just started taking endocort again. It's helping but there is still a ways to go. I have tried to stop carb intake as well. It's not easy but I am trying. I have never tried antidepressants and don't think I need them right now but I am open to anything that can help. [ more ]
Jilly Ah yes, living life with constant pouchitis. I did that for 12 years, thinking that it was normal. Suckah! I went on the following and have been ssssllllooowwwwlllyyy weaning off of things still. On 9/26/13, started on: 500 mg Cipro per day 250 Flagyl 3/week Entocort 9 mg, 3x/week Florastor probiotic Trader joes multi probiotic Cymbalta 40 mg per day Celexa 40 mg per day Today: Cipro same Flagyl 250, 2/week Entocort 3 mg, once/week Probiotics are the same Antidepressants are the same This... [ more ]
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