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J-Pouch ForumsPouchitis
rebecca new update
R Rebe0505
Rebe0505 yoghurt maker bought from lucks kitchen mail order as well as yoghurt starter,almond flour,and other products..tel number..18884842126 lucy can offer assistance with some questions you have about dcd diet as well.. [ more ]
Rebe0505 alleycat..i would go back to yoghurt starter you used that seemed to be good..i use the one that i get from lucys kitchen(she has store of scd ..)i get my yoghurt maker as well from her..not only is she great to get above things from as well as almond flour but she is great as advisor having been around since elaine gottshell did the book and knew her personally and successfully used scd for her colitis..as a matter of fact she did tell me to watch the fruit..she does not eat them because... [ more ]
Rebe0505 clouseau hi rebecca here yes i am very interested in your findings and would like info.. moreover,i am inclind to perhaps agree that the fruit might be a problem for us..even in dcd approved many folks on dcd cannot eat them(sigh!)thinking it is issue with me as well for control..just hating to admit it..i am even thinking the honey in some receipes from digestive wellness might be a problem because of honey..have had some bumps along the way as of late and have had to add my antibiotic back... [ more ]
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J-Pouch ForumsPouchitis
Flagl Dosage
F Fazz
pjexpress Several times over the past few years with flagyl at 500mg for 7 days. The last few months trying to stay on top of possible chronic pouchitis and again flagyl at 500mg for 7 days then rotating to cipro for 7 days. Cipro no longer works and Doc has prescribed Flagyl again but now is 14 days at 250mg. I think sometimes they will try different dosages to try and find what works best. [ more ]
clz81 As Jan said, I would start with the 250mg x 3 times daily. You can always increase to the 500mg after a couple days if it isn't sufficient. 10 day course if probably good for your first time. [ more ]
Ikh 500mg 3xday [ more ]
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J-Pouch ForumsPouchitis
Pouchitis Again
R Rocket
Rocket Hi Liz, I have heard that before. After I see my doctor on May 2nd, this is my doctor who treated me for Kidney Cancer back in 2009, I am going to look into this ELISA/Act test that will measure everything that your body consumes to see what your reaction is. Don't know much about this yet though. If I have other information, I will pass this along. Rocket [ more ]
liz11 rocket if you are eating toast,.. that is probably wheat unless you are having rice bread like UDI. have you tried diligently the FODMAP diet. It really isn't that hard if you want to give it a shot. There is scientific and medical evidence that FODMAP diet works for SIBO. symptoms are similar to pouchitis. [ more ]
Rocket Jeane, I really need to speak to a GI/Nutrionist to really see what diet will work for me. So I need someone familiar with both sides of the spectrum. I just know I can't eat foods high in fiber, milk products, soy, things like that. It's tough. You find somethings in the super market that are low in fiber, but then they have milk. Or vice-versa. There has to be some sort of test that the medical profession can give you that would give you some sort of readings that would cause things that... [ more ]
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J-Pouch ForumsPouchitis
Oily or greasy stools
AllyKatAllyKat
Jan Dollar High fat stools float. Jan [ more ]
J.T. I was recently diagnosed with SIBO. I think I have had it for years. I have always had excess gas, but always attributed it to chronic pouchitis. It all makes sense now.......trouble gaining weight, low B12, low vitamin D. So now I am doing the FODMAPS diet and a round of antibiotics to get the SIBO under control. My question is.......how do you know that your stools are oily? I have noticed that my stools are sticking to the bowl. Thanks, Joe [ more ]
winter wish I have pancreatic insufficiency and SIBO, so have to take Creon and rotating antibiotics with each meal. [ more ]
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J-Pouch ForumsPouchitis
pouchitis
T techwrench
techwrench I'm finally close to normal again.The flex sig a month ago revealed inflammation in the pouch and cuff.Dr. put me on budesonide - 3 pills daily.I found with that dose, I had terrible gas and bloating.Went to 2 pills a day,and the inflammation started to come back.I am now taking 2 pills at once,and the third pill 2 hours later to spread the dose out.This has worked real well.The gas problem was odd.The only way to get it out, was to use enema irrigation to expand the pouch,and then empty.The... [ more ]
Ikh How are you now techwrench? [ more ]
JJA I have not really noticed any steroid symptoms from Entocort and have pretty much been on one dose or another for a couple years. Mayo Clinic is doing trials right now to look at entocort as a maintenance drug for UC. The only possible side effect I may have noticed is that my fingernails seem to peel a little more frequently. The advice on how long one can stay on entocort may be changing as more is learned. [ more ]
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J-Pouch ForumsPouchitis
Thought a reward of getting J Pouch was not to be on medications?
MJ Michael J Pouch
Rebe0505 bet you have not tried the elimination diet yet.sounds like you had a great run 20 years but things change for everyone for all kinds of illnesses etc.. sure i was disappointed that i would after surgery require almost all drugs i used with uc and more or that i felt as bad as i did with my colitis just different bad..but i am persistent had to get over the outcome i expected and deal with what i have..eventually i discovered antibiotics to control my severe issues..did it in a... [ more ]
Daffodilly I am glad you posted this question as it is one that is on my mind too. I have needed to rotate antibiotics for 4 years for pouchitis. Even with all of this medication, I also have a lot of issues with itching in the cuff and the skin surrounding the rectum. Despite my frustration I am not willing to go through another major, risky surgery. Given I have a lot of skin issues now, I would worry I might have them with an ostomy site as well. When I learned 4 years ago that my colon had to be... [ more ]
hull I'll chime in to say that my jpouch has been awesome for the last 14 years and even though I'm having a little trouble lately with either upstream intestinal issues or pouchitis (not entirely sure yet - I just started a thread seeking opinions), it's still waaaayyyy better than my UC days (unremissive, medicinally managed to 5-8 painful stools a day, 24/7 with occasional hospitalization needed for antis and fluids) and waaayyy better than the interim bag. I'm thinking there are a ton of... [ more ]
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J-Pouch ForumsPouchitis
rebecca/update
R Rebe0505
Rebe0505 daffodilly you are another confirmation on improvement with diet and in your case pouchitis.. wow listen up jpouchers with pouchitis we really may have found an answer to control overgrowth without seriously bad drugs!!!maybe seems impossible but just imagine pouchitis or overgrowth by changing diet..i am on scd because trying to hold on to my fruits if i can ..keto eliminates them..interesting the different thoughts on that one aspect..but one can tweak that if one manages low cargo,no... [ more ]
Daffodilly I have been following a low carb, high fat diet since February. It has worked absolute wonders on my blood sugar control (Type 1 diabetic) and helped me get off antibiotics for pouchitis. This diet can be found on ruled.me. Or Dr. Bernstein's "Diabetes Solution". It is often called the Keto or Ketogenic diet. Varies a bit for people but basically no grains, starchy veges, or fruits. 75% fat, 20% protein, 5% carbs. SCD allows some fruit and honey. Keto does not. Keto allows whole fat dairy... [ more ]
Rebe0505 yeh strange isn`t it.. problems usually start early evening through early morning..i would say same with me..i do no think i have adhesions so perhaps thats the added factor?can that be corrected? [ more ]
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J-Pouch ForumsPouchitis
Imuran / Azathioprine for chronic pouchitis?
J JGriff
Rebe0505 jeane just read this earlier thread of yours..you are in such constant pain and discomfort please try not to add the worry of having to be on antibiotics long term..if it brings you relief you need to use it..i was on the antibiotics 6 years constantly never off..i needed to be able to function and thought less about constant use of antibiotics..ct barrister has been on them for 18 years...my only suggestion is change from cipro to another antibiotic because cipro known to contribute to... [ more ]
jeane Seems I have joint pain even off cipro. Doctor's think it is more IBD related arthritis as arthritis runs in our family and my dad, who had a colectomy for UC, has had bothersome arthritis for several years. I just bought some joint vitamins ( forgot name ) to see if helps. [ more ]
Rebe0505 alleycat have you made a turn for the better as per your april 8th thread?so diet maybe helping i hope..if we have bacteria overgrowth it makes real sense it will help because we are not feeding the bacteria which is one of the issues maybe not all but one of the main issues we have..glad you have realized you have to eliminate totally not low this or that..because we cannot fool our body!!!however,for me its tricky eliminating those few things that slip by that might have some sugar..like... [ more ]
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J-Pouch ForumsPouchitis
Immodium & question for Jan on Cipro
C clouseau
Scott F I tried Cipro both ways: 250 mg twice a day, and 500 mg once a day. For me, at least, they were equally effective. [ more ]
Rebe0505 hurrah if you are seeing some improvement on diet,and imodium..hoping you have given diet a long enough time to balance things out a bit..not sure what that is but i was doing it for about three months before i backed off antibiotics..also although i am not jan i am going to put my two cents in and say i would just cut back to one cipro a day..do not think the half of two 2 times a day will make a difference and its a lot easier! [ more ]
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J-Pouch ForumsPouchitis
rebecca/update/further helpful hints maybe
R Rebe0505
Rebe0505 rachel i think i am seeing that as good as it may get for me as long as i have pouch i will always have to be mindful of eating certain things in a day or days in a row..balance is going to be the key and as we all know it is not easy and thats not from lack of trying..its just not always easy to figure out with all the constraints.. i think i am having to face up to fact i cannot eat almond products(FLOUR etc) without some restraints..or too many fruits in a day or days in a row for... [ more ]
rachelraven I do find that eating smaller meals helps me feel less bloated. I never had to be that way, but 20 years in, it's become something that really impacts me these days. However, I'm being worked up for Celiac disease, so the bloating might be related to that. Could also just be GERD... a lot of folks in my family have hiatal hernias... Don't know. Could be SIBO, too, and if that, I'll likely go back to strict FODMAP. I've never had issues with weight since my surgery. In fact, the older I get,... [ more ]
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J-Pouch ForumsPouchitis
still holding my own without antibiotics
R Rebe0505
AllyKat I keep my nuts in the freezer. I probably should keep my almond flour there too. [ more ]
Roni* That figures! It couldn't be that easy...lol Well it was worth a shot. I hope you find what's bugging you. Just thought of something. My daughter belongs to a gym called US Swim and Fitness. She was having trouble losing weight no matter what she did and someone suggested she take this blood test that they do at the gym that would tell her what food allergies she has. Supposedly you can have these allergies and not know it, and it interferes with losing weight. I wonder if a test like that... [ more ]
Rebe0505 hi roni almond flour bought from excellent source..lucy`s kitchen..connected with dcd..very good almond flour..almond flour i will use in a few months time in ref rig rest in freezer..no problem with almond flour source... read new update post [ more ]
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J-Pouch ForumsPouchitis
Update and advice- help!
AllyKatAllyKat
rachelraven Yeah, I saw your timeline before, and remarked on the similarities! Back when I had the surgery, I thought I'd never be plagued with issues again. Hah! But we are the trailblazers in this. I hope that our issues can help teach and prevent others from similar paths. Again, I have no regrets, and I'm often still having "good" days. But where 10 years ago I never even thought twice about my bowels,etc., these days, it's not the case. Thanks about the daughter. Worst nightmare ever to pass it on... [ more ]
JJA Wow, that's fascinating about the pathology appearance of our pouches after 20+ years. Unfortunate, but fascinating, and makes total sense why I am now back in the "chronic disease" club... Rachel-looks like we've traveled a similar path with UC as kids and now "old pouches" with csome complications along the way. In 1982, the idea of pouches was in baby steps, so back then I was happy to have been able to hang on with prednisone and relapses/remissions for 9 more years, and I agree, the... [ more ]
rachelraven My new GI doc said that they are seeing a "new" autoimmune disease 20, 30 years post J pouch, where it's like the body is again pulling on its genetic trigger to have IBD, and it's now attacking the pouch. It's one of the scenarios he painted to me as to why I'm feeling like I do, 23 years later. If that's the case, I, too, will be on a "UC" med again. He also said old pouches when biopsied and sent to pathology are reading as "colon" and the pathologist, if not told it's a J pouch, cannot... [ more ]
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J-Pouch ForumsPouchitis
Cipro length of time to take
M MJFMJF
Scott F If the recovery is only lasting 5 days then the treatment has to be changed. Whether it's a longer course (continuous, if necessary), a different antibiotic, or whatever, the old treatment has proven itself inadequate. [ more ]
pjexpress Both Cipro & Flagyl have only been prescribed to me for one week (7 days)only for my pouchitis. It sounds like 14 days is much more common. Should I mention to Doc and see about getting it for 14 days? I seem to now be able to only go about 5 days after the meds before symptoms come back and I need to start another round. [ more ]
Scott F VSL #3 comes in both over the counter and prescription strength. The prescription strength is called "DS" (double strength). VSL is expensive but *very* concentrated with probiotic bacteria. It's the only one that has clinical research supporting its use to prevent pouchitis. [ more ]
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J-Pouch ForumsPouchitis
Sore Butt
D dilion
Rev Lenny Been suffering similar butt issues and would appreciate any suggestions. When going to the toilet to empty my S Pouch it is like passing glass!When I saw my consultant he gave me a steroid cream -Dernovate- to use for two weeks, but this also caused the skin around the area to feel as though it was burning! I also have what I call 'ridges' around the area, so something isn't right! My diet hasn't changed so its not food related. And the itch is hellish!!! After applying the Coloplast Barrier... [ more ]
dilion Thank you very much. I will ask my doctor to prescribe them. I have a compounding pharmacy here that can make it. I will have to get the sitz bath thing... Thanks again.. [ more ]
jeane I use prescription nifedipine or rectiv(this one does cause a bad headache quickly but over time with more use this lessens) for anal fissures. Both creams are not cheap. Nifedipine is a compound and has to be mixed at the pharmacy and not all pharmacies do this and it is about a 60 copay for me and rectiv is about 120 copay (all depends on your insurance). I have tried tons of different creams when I am sore to no end, but these two work the best to heal the cuts. Also, lots of warm sitz... [ more ]
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J-Pouch ForumsPouchitis
Pouchitis medications???
V van
Jan Dollar Try reducing the dose by half. That may be enough to keep the pouchitis symptoms at bay and also reduce the side effects. The fact that you are very active is even more of a reason to take this side effect seriously. A ruptured Achilles tendon will interfere with your work much longer than taking a few days off now to deal with diarrhea that may occur with a dose reduction of your Cipro. Jan [ more ]
Kratzer777 As soon as I realized the cipro was causing the problems I'm having, I tried to stop taking it (without success), I'm not able to get in to see the different dr. for another 3 weeks, my job is very physical and I'm on my feet all day and the pain is severe, I don't know what to do. [ more ]
boy's mom Have heard a high dose rifaximin, a very daily 3x550 can work and someone else told me they have used mincycline daily 2x100. [ more ]
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J-Pouch ForumsPouchitis
Thank you everyone and cautiously optimistic
AllyKatAllyKat
Rebe0505 me too!!!fingers crossed for you... [ more ]
Jan Dollar Sometimes things have to get worse before they get better. Seems like a dumb thing, but when you are doing these sorts of things, they have to wipe out everything before normalcy sets in. Tough to be patient, but that is what it takes. I sure hope that this is the real turn around you were hoping for. Jan [ more ]
PoucherInTO Hi AllyKat One thing is for sure, you are a strong fighter! You're giving your pouch 110% and I hope you have many more good days Feel free to PM me at any time [ more ]
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J-Pouch ForumsPouchitis
Butt stomach gripping pain
GT Good to be healthy
Good to be healthy Hi Yes the pain radiates up towards my stomach and will then go away and come back again until the pouch is emptied. Last time I was on the antibiotics it went away during the antibiotics course and then returned about a week later but this time I was able to stop it. I figured out that the pain started around 2-3:30 pm during my work day but I had no pain in the morning. In the morning prior to work I take two imodiums at 7AM. When the pain returned after the antibiotics were done I took... [ more ]
Bergie77 Good to be healthy: im having same exact symptoms as you. My pain goes away after one 500mg dose of Cipro. Have you found out the cause of pain? Ive been scoped many times and no pouchitis. Does your urgency radiate like an electricity shock? You can hold it in but pain comes in waves until you empty bowel for relief? [ more ]
grandmaof1 I just had a scope done in October and a MRI in December plus seen my surgeon and she did a rectal and said inflammation showed up on the MRI right inside my anus. So I am wondering if I have UC right there again. What are you thoughts. I have no fever. I drink only "smart water" for what it has in it for me. No pop. Just water. The pain is excruciating. I have always had some pain and pressure there since I had my take down. But lately way worse.... No pouchitis on my MRI or scope. So I am... [ more ]
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J-Pouch ForumsPouchitis
astonishing results for a antibiotic dependent jpoucher
R Rebe0505
Rebe0505 clouseau...rebe here..i wanted to clarify question you had ..if i was gluten free..the answer is i have removed all wheat the biggest gluten problem in addition to corn,rice,potatoes ...no exception..but i have not concluded that the home made yoghurt is necessary..i think trying to cut out above even more important in my case of sibo...also processed foods fyi often have gluten..but i avoid processed food almost completely..i use almond butter in jar but it just says almond butter and sea... [ more ]
clouseau Rebe0505, I am out of the country and have your book and have been trying to follow it as much as possible and have seen some results. You are right the book is a must. I want to thank you again for all your comments and help on this. I will do whatever it takes to get off antibiotics and while I am not off yet I believe I can reduce my dosage bit by bit. It is a lot harder when you are out especially in a foreign country and will be easier when I get home in several days. [ more ]
Rebe0505 clouseau sorry i did not see your text..but for the bacterial overgrowth the big thing here is remove all simple carbs,(starchy carbs and sugar)..you are confusing the gluten free with simple carb free..thus no grains with or without gluten..and no for my sibo i have not found the homemade yoghurt more beneficial than my faze greek yoghurt..so the main difference is the carb free that has gotten me off antibiotics..thus no grains of any kind,includes all pasta,bread,grain flour products,no... [ more ]
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J-Pouch ForumsPouchitis
pouchitis / cuffitis or both?
N Nela
Jan Dollar Just like UC, cuffitis may need maintenance treatment. You may need long term Salofalk suupositories, or talk to your doctors to switch to oral for maintenance. That is what I did when I got tired of doing suppositories all the time. Now I just need them for the occasional rare flare. Jan [ more ]
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J-Pouch ForumsPouchitis
Is anyone here using fecal transplant for pouchitis or Chrons?
L Lineal
AllyKat I got a good book about FT from Amazon. Called the FT guidebook, lol. Anyway, I'm all set to go as soon S I finished up my antibiotic. I am also a bit nervous. Good luck I hope it works fir both of us and anyone else venturing into the unknown [ more ]
desisn00ps Hi Guys, Anyone have any further remarks about trying out fecal transplant with a j-pouch? I'm considering it for repeat C diff.. [ more ]
AllyKat Did u do the transplant at home and how did u do it? Did ur donor get tested? Thanks looking to do it [ more ]
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J-Pouch ForumsPouchitis
Question about colds and Pouchitis
D Dbone
clz81 Have you been on the Cipro for most of these past 2 years? If so, I would say this has little to do with the cold and that the Cipro is just not working for you anymore. If you've only just started using the Cipro or have only used it a few times, then disregard. [ more ]
Dbone Ive had to stay on cipro unfortunatly but it seems to help . But this is kicking my butt , no pun intended . Im going to call my GI and see him . But im fianlly cold free so maybe i have to be patient with the cipro . Im on the smaller of the two milligrams , Ive doubled up on them because this is so bad , im constantly fighting dehydration [ more ]
jeane I just recently experienced this. I was off cipro for about two months and then came down with an awful head/chest cold and sore throat and whammoo pouchitis in full force. It took about two weeks until cold cleared and about that time on cipro. I will be weaning off cipro in next week hoping the cold just pushed me back into pouchitis gear. Seems any time run down and susceptible to pouchitis, everything gets off kilter and pouch unpleasantly reacts. [ more ]
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J-Pouch ForumsPouchitis
Pouchitis Cured Itself?
F fry
fry Hi Jan, thanks for the answer. About a year ago I started getting constipation out of nowhere, which had never once happened since my surgery. It became a fairly common thing, so I reduced the immodium by one pill...and then another...and then another...to zero immodium. This process took about 10 months. It helped but didn't stop the problem so I cut one Colestid, and finally the other, over about the past 2 months. Still didn't stop the problem but they weren't helping either. [Every step... [ more ]
Jan Dollar I would suspect that you did not have pouchitis for 12 years, but something else, since pouchitis does not cure itself. Cholestid and Imodium does not treat pouchitis, just functional issues of diarrhea. So, why did you stop these meds? I have been taking Imodium for nearly 19 years. While I have been able to reduce my dose, I have not been able to eliminate it, otherwise my frequency is too high. I have had intermittent pouchitis, but not continuous. If you want to try to control your... [ more ]
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J-Pouch ForumsPouchitis
sleeping solution that has helped
C clouseau
Kellie Rabatie I started taking benedryl to sleep when I was released from the hospital because I couldn't sleep and now know, I was also going through withdrawals from the iv pain meds. It helped so much. This is very interesting. [ more ]
clz81 This is so interesting. I never realized the active in Unisom was an antihistamine (the active in the tablets is actually doxylamine so i didn't recognize the name). I took that to help me sleep for 5-6 months of my pregnancy. Now I know why I didn't get the pregnancy "itchy" skin :-) [ more ]
Spooky True. ZZZQuil is basically just Benadryl as well, though I believe they charge more for it - something to keep in mind. [ more ]
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J-Pouch ForumsPouchitis
alleycat how is it going with diet?
R Rebe0505
AllyKat Yes, I'm better! But I'm still on the antibiotics along with the diet. No endocort this time to get out of the flare up so that is good. Doing diet. Talking with dr tomorrow about next step and FT Yes, pouchitis confirmed via scope but told because of location near the top only that it is cause by bacteria hang up. Apparently this is very common findings. [ more ]
Rebe0505 hang in there lady..you got rid of it before you will again.. one way or other diet of eliminating simple carbs and starches will or should help because you are not added to the inflamation caused by the pouchitis..between your drugs and diet you should get it under control soon.. have you been diagnosed with pouchitis through scope by the way? in my case as i said it was not pouchitis but bacteria overgrowth.. please try to stay the course with diet if you can if you think getting off the... [ more ]
AllyKat Thanks Rebbe, I'm still stupid after all these years.Had to go back on drugs. I'm also back on the diet. Really watching now. I hope this kicks this Pouchitis, my next step is fecal transplant! then idk what. Feeling sick and miserable right now [ more ]
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J-Pouch ForumsPouchitis
Chronic Pouchitis
P pjexpress
liz11 try a diet change .. that is a pretty good clue it could be SIBO. remove ALL sugar. even in thigns like salad dressing and ketchup. Reduce carbs, and in that process start with cutting out ALL wheat. good luck. [ more ]
pjexpress Thanks for the reply Scott, that did clear things up for me, I just need to make sure that they are going into the pouch to look, which I think he did since he mentioned that he found some inflammation. I think I'm going to see if the Doc will set me up with orders of flaygl and augmentin since the cipro doesn't seem to do much anymore and just try to rotate when I have a flare up, hoping not to be on them daily. I think you may be right about the SIBO since I have the huge gas buildup, I... [ more ]
Scott F The last part of the colon before the rectum is called the "sigmoid colon." When they use a scope to look at the sigmoid colon, it's with an instrument called a "flexible sigmoidoscope" (or "flex sig"). This is basically just a short version of a colonoscope. J-pouchers don't have a sigmoid colon, so when we have a pouchoscopy (viewing the J-pouch through a scope) it's done using a flexible sigmoidoscope. To make it even more confusing, the procedure codes that docs use often lack a specific... [ more ]
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J-Pouch ForumsPouchitis
Anyone use augmentum for pouchitis
AllyKatAllyKat
boy's mom Used augmentin rotating often with cipro since April, and it worked well. Sometimes my son would start on 3 pills a day and taper to one and it would still work. However it has stopped working now also. [ more ]
clz81 I used it for about 16 months straight during pregnancy and nursing to manage my pouchitis. Worked amazing for me up until the end. It became and has become totally ineffective for me now. Sad it lost it's power as it was a miracle worker for me! [ more ]
Rebe0505 augmentin worked very good for me..i would go for it..and i have had cdiff three times in 7 years..never got to upset because i took vancomycin for 10 days and rid of cdiff meanwhile it worked to keep pouchitis away.. moreover again i think diet may help us because it helps not feed bad bacteria of which cdiff is one of..and we keep our bacteria in better balance so i think its a win,win.. once you have cdiff i understand you can be more likely to get it again..so best to not over worry that... [ more ]
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J-Pouch ForumsPouchitis
pouhc
B brcook2323
Jan Dollar When you go to the ER with vomiting after you have had abdominal surgery, they are looking for a small bowel obstruction, not pouchitis, and that is the correct thing to do. It is correct, because small bowel obstruction can be an emergency, while pouchitis usually is not. X-rays and CT scans will not show much of anything unless you have a complete obstruction. Partial obstructions are fairly common, and while they cause a lot of pain, they usually are not serious. But, vomiting can be a... [ more ]
Scott F I'd be surprised if anyone in an ER knew how to diagnose pouchitis. CT scans and x-rays don't help with the diagnosis. In any case vomiting and rectal pain aren't common signs of pouchitis. Do you have a gastroenterologist you can get an appointment with (rather than the surgeon)? [ more ]
jeane If you are on pain meds that may be contributing to your vomiting. I get violently stomach sick when on pain meds. [ more ]
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J-Pouch ForumsPouchitis
sharing excellent source for diet for bacteria overgrowth
R Rebe0505
Rebe0505 oh heavens..so sorry to hear..get back on track with elimination diet of carbs..wow chocolate use to do a number on me!!as did all starchy carbs because still holding my own here without antibiotics.. [ more ]
AllyKat I went off for a week! lots of chocolate, and I'm sick again! Back to Sq one. [ more ]
Rebe0505 yes gluten free is not sufficient still feeding bad bacteria with simple carbs.. [ more ]
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J-Pouch ForumsPouchitis
Mucosectomy for chronic pouchitis?
D DZAtl
AllyKat I have always had to be on some drug or another. See my signature. In and out of remission. I guess some people do well with it otherwise they would stop doing it? I'm not one of them and in looking back although I really don't want the bag, my health and life would probably be so much better. And now I'm totally terrified of any more surgery. I'm sorry your son is going thru this. [ more ]
dtmack I had the process done at Cleveland Clinic. If you would like specific info on the surgery, let me know and i will elaborate as much as possible. Mine was completed due to finding a small tumor during step 2. They wanted to make sure they got it all during removal. The surgery was extremely painful, but i have had zero lingering effects. [ more ]
boy's mom Ally Kat, Did the pouch advancement help you at all? Do you regret it? Thank you. [ more ]
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J-Pouch ForumsPouchitis
Need advice FT Donor Help
AllyKatAllyKat
AllyKat The new steroid is endocort. It on.y gets absorbed in your pouch but still over time u get steroid problems like the teal deal. It's only meant for a short course and then u still need something for maintance. Altough some GI are using it longer but then u have problems. As for a relative! after reading the FT protocol it says that for UC you need to do it every day for at least a month then taper. So living with someone is easier since y on.y have a 6 hour window, according to the book. I... [ more ]
boy's mom what are the new steroids you refer to Jeanne? By the way, my son had his surgery done at cornell (SL) and has a rectal cuff that is too long. He does not have typical cuffitis symtoms though - but he gets very sick and always needs antibiotics. I am also interested in FMT. [ more ]
Scott F There's no benefit of using a relative for a fecal donor (other than the impracticality of asking a stranger). I'd stay away from IBS or possible UC, if you can. It's hard to argue that it's the donor's financial responsibility to get the stool tested, since it's entirely for your benefit. Perhaps your doctor can suggest a donor (someone with great digestion)? [ more ]
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J-Pouch ForumsPouchitis
Pouchitis: Any reassurances?
ninifunknessninifunkness
Jan Dollar Gee, Cipro is sort of notorious for causing C. difficile infections, so I sort of cringe when I hear of folks being put on repeated cycles of it, especially with worsening symptoms and bleeding. Please ask about C. diff testing. Hopefully, this is just cuffitis and you are just on the wrong medication. Good luck with the new GI! Jan [ more ]
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J-Pouch ForumsPouchitis
Is there a connection between low vitamin D levels and pouchitis?
S Subzeromambo
AllyKat Oh great, lymphoma runs in my family. My vit D level is high. I'm going to run this by my Functional Medicine Dr as she use to be a cancer doctor. [ more ]
clouseau I had low Vit D and studies show there is a link between autoimmune diseases and low VitD. I have a study that shows Vit D significantly increases your risk of lymphoma and I have lymphoma. UC- crohns put you at a much higher risk for lymphoma, another auto immune disease, they are all somewhat connected. [ more ]
JJA I had/have chronic refractory pouchitis (medically managed pretty well right now), and was found to have low Vit D. I also take once weekly Vit D, 50,000 I think. Seems to be a relationship between gut inflammation and low Vit D, but I am not sure it is causal or just a correlation-does low Vit D cause inflammation, or is it harder for us to absorb/process Vit D with high inflammation? [ more ]
See all 6 replies...
J-Pouch ForumsPouchitis
need a new antibiotic
M MITCH
MarkGregory Interesting reading about the bourbon. I am curious to know what affect it has, or why it works for you. Thanks. [ more ]
hawk3kt I have suffered through multiple bouts of pouchitis throughout my 2+ years with the internal pouch. I have tried many antibiotics, with results similar to yours. I have found that the most effective treatment for pouchitis in my case has been about 1.5 ounces of bourbon daily, and a low sugar diet. I know this seems odd, but it absolutely works for me, and it absolutely takes away the vast majority of "butt burn." Using this method I have gone from massive doses of antiboitic, to 3-6 Xifaxin... [ more ]
boy's mom Trying doxycycline 100 x2 a day right now. [ more ]
See all 12 replies...
J-Pouch ForumsPouchitis
Low carb breakfast???
ktakta
AP I eat nuts for breakfast. i also take psyllium fiber several times a day with lots of water. I have gone from chronic pouchitis, to almost two years with no antibiotics. Any time I feel it coming on I go heavy on the fiber and it knocks it out. [ more ]
kta Thanks. It looks like, just like most things, some research is the way to start. I've been in the thinking stage for a while because of chronic pouchitis or overgrowth. I'm tired of cipro. It has worked well for me for almost ten years, but I worry about the possible long term consequences. Knowing me, I'll think for a while longer and then slowly incorporate changes. [ more ]
liz11 you can also buy lactose free yogurt. Green Valley is the brand. they have other lactose free things like kefir and sour cream too I do a lot of smoothies with lactose free kefir and fresh fruit. and if you are still hungry after that. eat a big tablespoon of peanut butter! also of course lots of eggs. have to mix it up though. poached one day. scrambled with cheese the next. omelet with smoked salmon the next, omelet with spinach and feta the next.. get my gist here. [ more ]
See all 5 replies...
J-Pouch ForumsPouchitis
Anemia and Absorption Problems
DebthetravelerDebthetraveler
Scott F Lots of us seem to have some nutritional deficiencies. I suspect that absorption may be part of it, but perhaps a bigger factor could be that we tend to eat a bit strangely. We adjust our diets to manage our stool consistency, our bacterial balance, our transit time, our hydration, and goodness knows what else. What's left can be a bit strange. Supplements seem to work a bit better when taken with food. It can take a while to resolve some of these. My vitamin D deficiency has been resolving... [ more ]
ARP83 I self medicated with peptides for absorption problems I ran GHRP6 200mcg 3x's a day left thigh right thigh then abdomen. It causes hunger which is good, itll for you to eat I now run impamorelin at 100-200mcg 3x's a day. can find them on www.pepbridge.com . Aslong as you arent exceeding 1000mcgs youll be fine. It causes your body to secrete its own growth hormone. I will catch flack as everyone wants a medical study done to back it up....however since on it i dont take anything at all other... [ more ]
See all 2 replies...
J-Pouch ForumsPouchitis
Flagyl alternative
J JD1943
JD1943 Thanks all. Flagyl alone has never worked for me. I have not tried Levaquin alone though. Cipro did not sit well with me. Docs have always prescribed two antibiotics at a time. I believe that my insurance does not cover Xifaxan, so I will possibly try Augmentin and Levaquin together the next time. [ more ]
clz81 I forgot to answer your other questions...I did not have any side effects with Cipro, Augmentin, or PB. I would take Cipro 500mg twice daily. I forget the Augmentin dosage (I think they are 750mg Amoxicilin/250mg clavulanate) and I would take twice daily. PB would be 2 tabs for me in the am and two in the pm. I never took more than one antibiotic at a time. [ more ]
Scott F Cipro usually works for me, but Flagyl and Xifaxan don't. Doxycycline can be helpful if there are signs of SIBO (e.g. major gassiness). Two antibiotics at once are normally reserved for antibiotic resistant pouchitis. I think it may be overkill. [ more ]
See all 5 replies...
J-Pouch ForumsPouchitis
fissures frequently, any ideas?
J jd9998
Rebe0505 jd9998 what are your symptoms?i may have same problem..i have bleeding if i go in with finger and apply anything and sometimes not always some blood on tissue and i have anal pain .. what is it you are using and what else can dr.do? [ more ]
JJA Get a bidet toilet seat! I almost never get them anymore since I got mine! [ more ]
kta Watch the straining when trying to empty your pouch, too. [ more ]
See all 4 replies...
J-Pouch ForumsPouchitis
Help with SCD. Impossible not to eat carbohydrates. How do you guys do it?
C CPGuy
liz11 look at FODMAP it has scientific evidece behind it Dr. Shen at CC had me try it for bacterial overgrowth AND FODMAPS lets you eat some carbs you can have rice or corn pasta, rice rice bread (UDI is the best one I have found) and cereals without wheat or inulin (pre-biotic stuff) and other types of carbs. Just a big no no is wheat. so sure.. these carbs aren't the same... BUT they are better than no carbs! and you can get used to rice pasta in your spaghetti!!! [ more ]
CPGuy Thank you. [ more ]
Jan Dollar I agree, while most doctors agree that there is not much evidence that diet alone has a consistent effect on the disease, I haven't come across any who advised against experimenting. I think any doctor has had enough education to know that there are individual tolerances and the notion of food intolerance and/or dietary impact on gut flora/fauna is a growing trend that is not just junk science. Where they are at a loss is that they really cannot recommend one diet over another because the... [ more ]
See all 18 replies...
J-Pouch ForumsPouchitis
No antibiotics for 9 months+
R riskman4
riskman4 I may be living in a fool's paradise these last nine months but I like it. [ more ]
AllyKat Pentassa keeped me in remission for 3 years, then it gave me nasal pyolops so I switched to xifican for a few years. Then I flared! went on remi! then nothing but canassa for over 4 years. Recently flared, got back into remission and put myself back on Pentassa. I do fine on a half dose. Great stuff and congrats it's working for you. I also use probiotics and canassa. [ more ]
See all 2 replies...
J-Pouch ForumsPouchitis
Simponi injections for pouchitis
TinatTinat
Jan Dollar It can take up to 3 months for full effect. For me, it was about 4-6 weeks before i noticed it. Jan [ more ]
Tinat Hi Jan, that is so good to hear, do you remember how long it took effect? And do you still need to take any antibiotics with it? It's been a few days now and I'm not noticing any real difference and am still taking antibiotics with it. [ more ]
Jan Dollar I've been on Simponi for several years, for arthritis, not pouchitis. However, my pouch has never looked better and I have fewer instances of pouchitis and cuffitis since being on it. No allergies yet. Like Himira, it is a fully humanized protein. Remicade is mouse protein. Jan [ more ]
See all 3 replies...
J-Pouch ForumsPouchitis
Question about the symptoms
Patti AnnPatti Ann
Rebe0505 go to visit your dr.. short term antibiotics could fix it if suggested by dr. [ more ]
Scott F To me it sounds a bit more like either SIBO (small intestinal bacterial overgrowth) or an upper GI problem unrelated to the pouch. I second the suggestion for a visit to the GI doctor. [ more ]
liz11 Yes most likely. Suggest a visit with your GI doctor. Usually a course of antibiotics will get you sorted. good luck [ more ]
See all 3 replies...
J-Pouch ForumsPouchitis
Rebbe-Thank You! Grain free! sugar free!
AllyKatAllyKat
Rebe0505 allycat you made my day really!!i am so happy you gave it a complete go..its really all or nothing..your results i believe are real..i am maybe two months no antibiotics will stop counting now sure the starch carb free and no sugar(except fruit in my case,and whatever is in veggies )fyi i tried a bite of raw honey on an almond bread i make..reason..it was approved in scd...actully had some in my almond ingredience ..no negative effects..hold out you can do it!!!...just think what it means if... [ more ]
See 1 reply...

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Bill Johnson founded the J-Pouch Group in 1997.

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