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J-Pouch ForumsPouchitis
ct barrister question
R Rebe0505
AllyKat Costco quoted me $1500 for 60 pills, 550mg, a 1 month supply. I'm on Medicare, and with my new wonderful expensive aarp medical RX plan it only covers a third so basically I'm now paying $475 a month till I reach my deductible of $5000. They dropped my last plan, don't even get me started, and I was only paying $75. [ more ]
AllyKat You can get generic xifaxan from India A 90 day supply for about 130.00. It is manufactured by Sun Pharmaracutics. India is the only country that is except from genetic patents. I called Rebbe's Pharmacy in Florida. I have not spoken yet to my doctor about this but it does make me a little nervous getting it overseas but the difference in price for me is like $5000. I'm first trying to go thru patient asst to see if I Qualifly. [ more ]
Rebe0505 yep..maybe thats why i did not think xifaxin so expensive..i got the 550 mg. which is what was suggested by my doc.. [ more ]
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J-Pouch ForumsPouchitis
source for pouchitis/S.I.B.O. sufferers
R Rebe0505
Rebe0505 i believe that was it..good find jan i could not find it after having seen it lol...i believe she said in that writing it was missing also two things..but do not remember what they were..i guess the point being it was not as effective or the better point for all of us is generics are not necessarily the same as original and may not work as well if we start on a brand.. [ more ]
Jan Dollar I did find this one recent study that showed that the generic rifaximin was systemically absorbed at a higher rate, so may have different therapeutic results. But, it did not say it was ineffective. Is this the study she refers to? http://www.ncbi.nlm.nih.gov/pubmed/24836868 Also, remember this is all acedemic, since there is no generic rifaximin available right now. Jan [ more ]
Jan Dollar Rebecca, as I mentioned in another thread, I searched the website you mention, and could find NO indication of comparisons of generic vs. brand name Rifaximin studies. http://www.siboinfo.com/dr-siebeckers-bio.html I could not find it on PubMed either. Perhaps she was extrapolating information from other studies about other antibiotics in her newsletter. If I cannot look at the study, I cannot comment. Jan [ more ]
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J-Pouch ForumsPouchitis
Prolapse
S StephenS
Scott F Prolapse can vary in severity. It's always worth asking a surgeon if just living with a (presumably mild) prolapse might be the better choice. But if your symptoms are intolerable then you have your answer. [ more ]
katenet Dr Shen diagnosed me with pouch prolapse about a year ago. I also have a stricture that he dilates every six months and he fills the deep ulcers with kenalog cream. I feel really great for about a month and then its back to the usual ick that we all deal with. Honestly he didn't seem really concerned about the prolapse issue so I trust him and stopped freaking out when I heard the word "prolapse" [ more ]
Megals My pouch had also prolapsed and I had to have surgery to remove it. I had the surgery done June 6th and returned to work on August 11th. Since I risked short gut syndrome if they made another pouch, the surgeon just had to reconnect me. I'm back on medicine to help control the frequency. But he said he'd rather control it with medicine than to keep doing surgery. Good luck and I hope you feel better soon!! [ more ]
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J-Pouch ForumsPouchitis
Pouchitis recovery
S SALC
SALC Thank you for your response. I can't imagine feeling like I have these last two weeks, on a chronic basis. That must be tough for you. Does your diet play a part in controlling symptoms? Shannon [ more ]
CTBarrister That is not a very high dosage of cipro. I usually need 1000 mg cipro and 1000 mg flagyl daily to stamp out very bad pouchitis and return to my normal "simmering" state of refractory pouchitis. Fortunately I tolerate these drugs well, but still don't like staying at those dosages for more than 2 weeks before tapering. I think you are still symptomatic. Please note, I have taken antibiotics continuously for 20 years to keep my chronic refractory pouchitis at bay and in a "simmering" state. [ more ]
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J-Pouch ForumsPouchitis
Pouchitis and Treatment and Pouchoscopy Questions
B blufnger03
CJB Alana, I have NO prep whatsoever for all my j-pouch scopes. No matter what time of the day it is. I poop before I go in, although she has never even asked me to do that. She suctions out poop if she has to while she's in there looking, but it is never anything substantial. Every doctor seems to have their own preferred prep requirements. I actually like it that my surgeon has none. You'll do fine! And it does sound like pouchitis to me also. Hope you feel better soon. Cipro has worked well... [ more ]
blufnger03 The doctor isn't planning on doing an enema on site... My procedure isn't until 2:30pm in the afternoon. Also, they aren't planning on doing sedation... should they be? [ more ]
TE Marie They usually tell me nothing to eat or drink but clear liquids after 7 or 8pm and they have me do 2 enemas. Sounds like your way will be a good one. Go in lay down, go to sleep, wake up and all is done [ more ]
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J-Pouch ForumsPouchitis
Doing great but confused!
puffadderbitepuffadderbite
Jan Dollar Puff uses hydrocortisone enema daily, so also using the suppository might be overkill in regard to topical steroids. Jan [ more ]
TE Marie I take temazapam too and it keeps me from getting up during the night. I understand what you are saying as I take it sparingly too. I say it all depends on if you need to be somewhere at a certain time the next day. If you do, as in work, then I agree with Jan's idea. I also think the burning could be from cuffitis and you might need a suppository nightly instead of a sleeping pill for a while. Anucort is pretty cheap and if it works it will keep the burning away. If you had a bad case of... [ more ]
puffadderbite I just still cant believe it..ive tried so many drugs..I take just a small ammount of this Tamazapam..if i dont take it..during the day..i get burning..diahreaha..itching..misery. If I take it ..I sleep good..and during the day I have no rectal pain or nothing..it must be relaxing the muscles in the rectum (like you said) [ more ]
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J-Pouch ForumsPouchitis
CMV virus
O OKSTFAN
katenet I developed CMV Colitis in 2003 and had an emergency total colectomy as it was in my bloodstream. I was treated with TPN and IV Gancyclovir. At that time CMV disease was not common in patients with IBD and was mostly seen in those who had transplants or had HIV/AIDS. I get tested for it now in my pouch and am glad they are investigating this more carefully. [ more ]
Jan Dollar CMV infection is mostly associated with being immune compromised. The case noted in the article in this link is typical. http://onlinelibrary.wiley.com...9887be41901a83b2dbb0 What I find as being rather bizaare is the fact you were treated with 6MP, another immune supressant, when antiviral meds are the only treatment specific to CMV infection I have ever heard of. Jan [ more ]
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J-Pouch ForumsPouchitis
VSL#3
WBrooksWBrooks
TE Marie Thanks Rebecca, My Internist has many IBD patients and she recommends Align after taking antibiotics. She initially prescribed VSL#3 DS for me when I asked. I don't know if she recommends Align to non IBD patients or not. [ more ]
Rebe0505 f.y.i.dr. shen knows of both vsl#3 but still recommends align..i think he thinks that the probiotic in that bifido is the main one that needs to multiply. [ more ]
TE Marie Well said Rebecca. I've never considered the other medications I take before! I'm on the same routine as you are plus I take canasa most of the time, for chronic cuffitis, and occasionally anucort - depending on the inflammation. [ more ]
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J-Pouch ForumsPouchitis
anyone have any understanding why besides antibiotics other things tried stop workin
R Rebe0505
Rebe0505 thank the lord that bacteria does not have perfect memory and can be used again after period of time.....but i am sure others like myself can attest they do not work quite as well as time goes by.. however,presently its the only real game in town..fingers crossed something else comes along or as i heard new antibiotics are in the pipeline..anyone know if thats so? [ more ]
Rebe0505 yep as always jan says it best!!!!that was a very well written answer jan.. thank you ! [ more ]
TE Marie Thanks Jan, Your definition of chronic pouchitis makes it crystal clear and answers all my prior, current and probably future questions. I should probably cut it out and frame it [ more ]
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J-Pouch ForumsPouchitis
possible pouchitis (infection?) | Entocort
Silver20Silver20
Silver20 Finally met with my GI and we talked about all my options for treatment. Due to certain concerns on his part from more test results we got back he is holding off on 'resetting my immune system' to see how this next treatment goes. He put me on 6 months worth on entocort at 9mg a day as well as a 30 days of levaquin at 500mg a day. Checkup in 6 weeks and possibly in 2-3 months into treatment depending on how it is going we may start Humira (Wont do Remicade due to the risk of having it... [ more ]
AllyKat I had no side effects with the endocort. I only took it for 2 weeks and switched over to xifaxan. I actually felt great while on it. Belive u me I was kicking and screaming taking that first pill. [ more ]
CTBarrister Silver20, The cocktail recommended by your doctor may be very beneficial, but the side effects I mentioned could happen if you stay too long on Entocort at its max dosage. That is an issue you should discuss with your Doctor, I stayed on the max dosage for 6 months and that was too long. On the other hand there is no doubt that I improved with it and I would take it again as I had no other side effects. But I would be really careful about how long I was at the max dosage before weaning. When... [ more ]
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J-Pouch ForumsPouchitis
i cannot believe i am saying this..kpouch,bag!!!
R Rebe0505
AllyKat Every so often I end up in the surgeons office and asking for my pouch out. And every time they find more meds to get it working again. Really think this out as pouch removal surgery is not the easiest. If it were this pouch would have been gone years ago. Also, any good surgeon unless things are dire will not just remove it. Ie failed medication, surgical complications, fistfuls, etc. It's been 15 year roller coaster for me. Personally, I'm starting to believe that this surgery should not... [ more ]
LHetti I was in Katie's camp- I thought life with the ileostomy again would be the end of the world to me. Turns out I had to have a permanent ileostomy (K pouch was not recommended to me) and it's not the end of the world! For me, I have zero symptoms or problems, but realize it's just been 5 months. As we all know, things can change as the years pass, but for today I'm totally feeling great and loving life. Yes, I had to change my routine and little and buy some new clothes (not necessarily a... [ more ]
skn69 Rebe, I am a k poucher (35yrs now). J pouches didn't exist in my day and I wasn't a candidate anyway...no anal sphincter...so the incontenece and constant accidents/cleanning up etc was my daily life...my whole life. The k pouch was still in infancy back then and I was lucky to be accepted and have it done. I could not face an outside bag at 18...it had been my lifelong battle up until then to avoid it (they gave me a colostomy at age 2 but closed it at 3. The k pouch changed my life. I... [ more ]
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J-Pouch ForumsPouchitis
rebbeca with question about some occasional burn when going
R Rebe0505
AllyKat It still do sometimes happens to me and I don't know why [ more ]
Ljz Rebecca, I take 1 gram pill of Colestipol with each meal and at bedtime. Actually this is small dose, but has made the difference for me! I think it attaches to bile, but however it works it feels like it neutralizes the output so even with my 15-20 movements per day I have no BB! I still maintain my Vaseline routine with every movement and tuck a round cosmetic cotton pad or Tri-folded 2 squares high quality TP up there. No exceptions. I do notice if I miss a dose, and may occasionally have... [ more ]
Rebe0505 ljz do you take this colestipol everyday or how do you use it? and i think this sensation i am talking about is not a burn from irritation its i think in the output itself because i can feel it build up inside down there when i have to go..more likely acid caused by food,empty? i know the other sensation from irritation of wipes this is definitely different.. [ more ]
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J-Pouch ForumsPouchitis
Oregeno oil capsule vs drops
M Marianna
clouseau The advantage with drops is you can slowly increase your amount or decrease as needed as oppossed to doubling or cutting in half with a pre filled capsule. The drops are very easy as the dispenser is actually a dropper. You need to start slowly and build up and that is hard with pre filled capsules. [ more ]
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J-Pouch ForumsPouchitis
Cuffitis
B bratcat
Rev Lenny A further report on my undercarriage; all is now going well, and the healing process is almost complete. My regime consists of washing my undercarriage with warm water, then patting the area gently dry; then I massage some Colloidal Gel into my skin, then a layer of Comfrey Cream. After my final visit I apply Calmoseptine, so all in all I am more than pleased with the progress - especially considering how red and blistered the skin was and how sore it was when washing. Hopefully this may be... [ more ]
Rev Lenny Thanks TE Marie - again! Three days of Comfrey Cream + Colloidal Gel and on retiring to bed Calmosptine and my undercarriage is almost back to an acceptable level. The anal fissures are also in remission! They can be so painful, but an application of vaseline before emptying the pouch can ease the pain/discomfort; but through the different levels of pain I have learnt to speak new languages!!! I would definitely recommend Comfrey Cream for anal fissures, also it is good for a multitude of... [ more ]
TE Marie I'm glad you are feeling better. [ more ]
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J-Pouch ForumsPouchitis
Pouch it's? Or could it be more?
MelBMelB
JJA Yes, there are degrees of miserable with pouchitis. Although I successfully took Flagyl many times over 20 years, the last time I took it I had a base reaction-major nausea, inability to concentrste, weepy, etc. My pouchitis symptoms were we're than ever PLUS a bad reaction to the antibiotic. Best of luck- [ more ]
MelB Not sure. I guess they figured all the nastiness was caused by the pouchifis and not the meds. [ more ]
CTBarrister Hey Mel, Were you taking the cipro and flagyl on an empty stomach? It's best to take them with food. I am a little curious as to why they would attempt to put you back on oral antibiotics that had sickened you. Obviously they can't IV them forever, and they are likely encouraged by your response to taking them by IV, but they are not the only antibiotics used to treat pouchitis. Good luck and hope it works out for you. [ more ]
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J-Pouch ForumsPouchitis
"Chronic Pouchitis"
U urbhusker
TE Marie If you let your pouch rest you could also treat it with antibiotics without having waste running through it and that should, in theory, clear up any problems. I was in the hospital 16 days with my first surgery because I kept getting dehydrated. That is a long time. If I ever need to stay longer than the usual 2-3 nights I need to check out where you stay. We paid $112 Mayo rate per for a studio King suite last week with a good hot breakfast buffet at Aspen Suites. I usually don't get to eat... [ more ]
urbhusker My concern with leaving the J-Pouch and rectum in is that when I had the temp ostomy bag I frequently had bad days where I was on the toilet a lot due to uncontrollable mucus (in hindsight that should have been a warning sign) discharge. But Dr. Page mentioned that to me last year....let the pouch rest and possibly reconnect at a later date. I really do not think BCIR is a viable option due to location (and two weeks in hospital) unfortunately. But there is no reason why I cannot get an... [ more ]
TE Marie BCIR would be a better option in my opinion. Could you go back to an ostomy and leave your j-pouch to rest until you can arrange to look into the BCIR surgery? There are people who rest their j-pouches and then reconnect them. Then you could rest yours until it was turned into a BCIR pouch or you decide to remove it permanently. There is at least one person on here that went to an ostomy and left her j-pouch in several years ago. That sounds like something Dr. Page could do locally. I know... [ more ]
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J-Pouch ForumsPouchitis
paleo/scd
R Rebe0505
CTBarrister For those of you who are basketball fans, NBA basketball superstar LeBron James went on the Paleo diet during the offseason as part of his training regimen. More about this here: http://espn.go.com/nba/story/_...amp-new-weight-class I happen to be a basketball fan generally and I love the way LeBron plays the game, and I am looking forward to seeing whether his goal of becoming quicker on the court will materialize. [ more ]
Rebe0505 thanks ct info is very helpful as to amounts allowed s.c.d. does not set any limits for day but i suppose logic would say if you have more issues like output increasing after eating 5 bananas you probably need to cut down! [ more ]
AllyKat For true Paleo you really should be eating grass fed meat and free roaming chicken. Has to do with the omega ratios. [ more ]
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J-Pouch ForumsPouchitis
Oil of Oregano - what dosage to start?
clz81clz81
clz81 Why does the oil have to be in a capsule? I think the directions to take orally say to dilute in a glass of water or tbs of olive oil. [ more ]
clouseau ciz81, I have been taking the oregano oil for a couple months now with success. I use do terra oil as it was recommended by a functional MD with the correct combination of ingredients and right concentrate. You MUST take the drops in a veggie cap and the do terra oils come in a dropper. You need to start out with a smaller dose like 2 drops in the Am and 2 drops at night then go to 3, then 4 drops 2X day then if needed go to 4 drops 3X a day which is what I am doing. Do it slowly see how... [ more ]
Marianna Would oregano oil pills be as effective? [ more ]
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J-Pouch ForumsPouchitis
chron's or pouchitis?
P penny471
Mema 1 Thanks, CT....I eat loads of peanut butter, unfortunately, it's usually on "BREAD" or a bagel. I cannot eat bananas as they usually give me blockages...I think that going to a nutritionist is a great idea and one that I have been toying with for a while. I am also trying to increase my protein intake as well and am trying to each lunch, something that I haven't done for awhile. The more I eat, the more I have to empty my pouch, and butt burn here I come. I feel as though I'm chasing my tail... [ more ]
CTBarrister Mema On most of these diets monounsaturated fats are allowed. You may want to increase your intake of natural fats. For example, natural peanut butter, the kind with peanut oil not removed. You may also want to slightly increase the portions of the proteins you are consuming. Because of differences in metabolism and nutritional needs I would recommend consulting a registered dietician. It could be that the anxiety has reduced your appetite and you just aren't eating enough. Try snacking on... [ more ]
Mema 1 Just wondering, with all of these diets that eliminate sugar and carbs, is it possible to gain weight? I have lost a significant amount of weight due to a combination of having some problems with my pouch and also anxiety. I am now trying to gain weight which is a very slow process. I have lost a total of nearly 15 lbs. and am trying to gain some of it back, which seems to be a very slow process. Any ideas of what I can eat yet try to stay off of sugar and carbs. I would love to try a diet... [ more ]
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J-Pouch ForumsPouchitis
Ongoing Pouchitis/Cuffitis.. what is the best next move?
O oonja
LHetti Oh, wow. I'm sorry for your trials! I was sent to Mayo Clinic, MN for a second (third?) opinion and I really had an amazing experience there. My issues were the cuff and fistulas for sure and they wanted to save my pouch. In the end, I ended up with a perm ileo this spring. I'm doing really well! I had problems with nightly accidents when I had my pouch and I will say that diet totally changed this for me. It's different for everyone, but the SCD/GAPS diet fixed that issue for me. No refined... [ more ]
TE Marie The Mayo Clinic also knows what they are doing when it comes to j-pouches. Mayo and Cleveland Clinics both have locations other that their first clinics in Rochester, MN and Cleveland, OH You might find it more feasible to go their locations in Arizona. [ more ]
Rebe0505 try cleveland clinic as a start..from there you should follow this site and start to try the different things many of us try to better our situation.. my pouch did not look really bad,i have no biopsy finds but let me tell you i got a trouble intestinal situation..so i tried diet still on to cut down bad bacteria ..i rotate antibiotics as do others on this site,maybe these things will cut down your many drugs..that would be improvement and bring down your b.ms to 10 or so..incremental gains... [ more ]
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J-Pouch ForumsPouchitis
Imuran for pouchitis
A Amy1
OKSTFAN I had to take 6MP for the first time when I was diagnosed with having the CMV virus to get rid of it. Dr Shen at the Cleveland Clinic found it after a scope and I was told the cause of the CMV virus was because I was on Cimzia. From my what I know about CMV, it is a very bad virus to have. Fortunately for me, it had not entered my blood stream or there would have been some very serious consequences. Therefore, I am not a candidate for any Biologics type medications. Jan, have you heard of... [ more ]
Minn Mark JJA, Not sure who the Dept Chair is now, but I saw Dr William Tremaine, who at the time was Dept Chair, and also Chair of the IBD Clinic at Mayo in Rochester, MN. I literally put my life in his hands. I was on Imuran and Remicade (neither had any good effect for me; had to have colectomy and j-pouch for my UC). The entire staff in Gastro at Mayo is very highly regarded. They will give you good advice, but as always you need to have a solid relationship with whomever you are seeing. best of... [ more ]
Chris Jones Stay away from Imuran it is a nasty drug. I was one it and it caused a lot of problems [ more ]
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J-Pouch ForumsPouchitis
Gaining weight after pouchitis
shakedownLgshakedownLg
Rebe0505 oregano oil might be good to look into it to see how much..i think you can take with antibiotic because you will stop antibiotic to see if oregano will work for you..one jpoucher doing it over a month now but she takes 12 drops of oregano oil with no antibiotic.. i plan to give it a go to rotate it from antibiotics because not sure at this point how long you can be on oregano oil..three months so far seems the number i hear about.. but in retrospect thinking do not try to many things at once... [ more ]
Rebe0505 heres something you might want to consider..for my chronic pouchitis i eleminate complex carbs and sugars thus if i want to add some extra calories and because of my restrictions which include no protein powders of any kind (processed a no,no )this is my latest try protein supplied by cartoned egg whites,i add some frozen blueberries,even half a banana if you want.little water (depends on how much egg whites i add) and for weight gain some almond butter (but must be one only made with... [ more ]
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J-Pouch ForumsPouchitis
rebecca/update
R Rebe0505
JHendrix CT Barrister: If I am understanding you correctly, you were wondering why some of the recipes would include wheat flour and grains etc. My reading of this site is that the IBD Anti Inflammatory Diet (IBD AID) recipes are found only in the IBD section of the website. The other RECIPE section is for just regular 'healthy eating'. I had some communication with one of the authors who told me that bean flours, almond flours and coconut flours are ok as well as oats. This is my understanding anyway. [ more ]
CTBarrister winter wish, The article you have posted is about the UMass diet which is discussed above in this thread and in other threads. The banana bread recipe and other recipes I mentioned are all from this diet. The questions I raised in this thread are in relation to this diet and the recipes posted on the UMass website. Not sure if you read the rest of this thread, but this is what we have been talking about. If you cull through the recipes carefully you will see that there is not so much... [ more ]
winter wish http://www.nutritionj.com/cont...f/1475-2891-13-5.pdf Has anyone more experience with this diet? What about tea/coffee? Its looks a lot of work, but antibiotics are not working so well anymore.. no grains except oats. good to see some research into dietary options [ more ]
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J-Pouch ForumsPouchitis
Off antibiotics :) Pouchitis remission for 4 months now
E elizabeth119
Former Member ❤️
elizabeth119 Rebe- The doctor was very surprised that it was working for the pouchitis and especially at that low dose. I think the higher dose would have been for short term use, but he told me it's okay to continue long term at the low dose I'm taking. I put a few drops in my water (distilled water). CLZ- I too would be interested to hear any other perspectives. I was not able to find anything in my research that explains why this works. No other mention in this forum either. [ more ]
clz81 I would love to find an alternate to antiobiotics, but I thought you are only supposed to take KI if you have thyroid issues or have radioactive iodine in your system. Would defintiely be interested to hear others perspectives on this. [ more ]
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J-Pouch ForumsPouchitis
What antibiotics have u taken for pouchitis?
M Marianna
Marianna Oh yes I recall good old Imuran. It was my last resort medication before surgery done. I was somewhat glad it did not work at all, because this drug scares me . Thanks again for the info............x [ more ]
CTBarrister Not necessarily. My last scope showed some inflammation there. However it is possible. [ more ]
Ljz Doesn't inflammation of rectal cuff cause bleeding? [ more ]
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J-Pouch ForumsPouchitis
FODMAP Diet
G Grandonion
sudie Been seeing a fodmap dietician for the last six months having some great results. Less bathroom visits noise,cramping and spasms have reduced also not getting up at night was up early every hour and half so am happy about that. My last visit the dietician recommended an app for my phone so I can check up when shopping comes also with some recipes it's called THE MONASH university LOW fodmap Diet it recommends what not to eat and what is ok hope this help [ more ]
Rebe0505 just f.y.i.checked what i could find on fodmap which is designed i think for ibs patients and my own which is s,c.d diet and there are clearly things eliminated from s.c.d. completely that seem more liberal on fodmap..s.c.d has been helpful a variety of diseases like colitis,chrohns,diverticlitis and host of others..its based on eliminating foods that for a better term feed bad bacteria...some folks on site are believed to have pouchitis/s.i.b.o and so the s.c.d. diet eliminates all starchy... [ more ]
Grandonion Thanks to each of you for the input and support. I really appreciate it!! [ more ]
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J-Pouch ForumsPouchitis
Does holistic work?
TinatTinat
Endi Take a look at this post. Some of us are going to try the oregano oil for different reasons. I hope we get updates from the other j-pouchers who posted. It talks about a protocol as well. http://j-pouch.org/eve/forums/...517080276#6517080276 Cayseebee, I have not tried acupuncture. I would like to. Vanderbilt has an acupuncture center and they work with your doctor's. From what I hear, it's been very successful. [ more ]
Rebe0505 thinking that the oregano oil is possibly the find here..but i want to find out more about how much to take,what kind and can one take it indefinitely..like i have said in other post it still can be advantageous for us to get break from antibiotics.. hearing more and more of its antibiotic properties being quite real and effective..watching my internet friend in ohio carefully.. reason i have not started it because i had to get myself in balance again after using just diet to control... [ more ]
CaySeeBee This is all very interesting to me - definitely going to check it out. I will say, not that it's "holistic" but still not super traditional - I'm pretty big on chiropractic. So many other issues have been cleared up as a result (headaches, heart palpitations, irregular cycle). I have scoliosis so it's tricky, and I still have pouch problems but that could be because of the curvature, because of my neck's forward posture, or most likely more my insistence on eating so much candy. Has anyone... [ more ]
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J-Pouch ForumsPouchitis
Prilosec, Sulfasalazine for Pouchitis
ElmerFuddElmerFudd
Rebe0505 asked dr shen about both sulfa and prilosec ..for what its worth here is his answer... "both agents have not been studied.would be careful using prilosec for fear of c-diff...sulfa has been empirically used with both gut and joint symptom.." [ more ]
ElmerFudd No side effects for me, other than some indirect ones: 1. If I miss my Prilosec, my body creates more acid and I get bad heartburn. FYI - if you are on PPI's long-term and want to stop, substitute an acid reducer like Xantac and then gradually wean off of it. 2. It has been shown that long-term use of PPI's (about 3 years) can reduce B-12 absorption. Checking B-12 levels after several years is a good idea 3. Sulfasalazine can affect Potassium levels and I have to get my levels checked every... [ more ]
clouseau Thanks for posting this. I would love to hear if anyone else has had experience with these and also what are the side effects compared with antibiotics.. That would be very helpful. [ more ]
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J-Pouch ForumsPouchitis
resolved my very green looser stool issue
R Rebe0505
skn69 Glad that you found a solution to the problem...I agree that too much of a good thing can be too much! I just did a run of chewable probiotic gummies and Wow! what a huge difference in output. Things that had not been digesting for years were suddenly digestible in large quantities (romain lettuce, certain fruits like watermelon and other veggies). I had also cut out a lot of sugar from my diet and substituted fruit for dessert. The result was that I seem to have gotten the upper hand on the... [ more ]
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J-Pouch ForumsPouchitis
Pouchoscopy--No biopsies taken
John95John95
CTBarrister Thanks John. Dr. O is still my doctor and the information I posted above came from him. He is great. I get the sense that he talks to Dr. Shen on a weekly basis and learns everything that is going on at his old stomping grounds, the Cleveland Clinic, where he did his Fellowship. Dr. O basically has me under control but like some others I have a stubborn case of refractory pouchitis and can't get off antibiotics, much as I have tried. Scott, I hear ya on the unnecessary testing and... [ more ]
John95 Scott, I appreciate your input. How terrible that you had to undergo such a major surgery unnecessarily. I certainly understand your point about the possibility of excessive testing leading to poorer outcomes. I suppose our views on these sorts of things are mostly colored by our own healthcare experiences. CTBarrister, I was also a patient of Dr. O when I lived in your area. He was fantastic. You're fortunate to be in such good hands. Hope you're doing well these days. [ more ]
Scott F Certainly someone who's already developed dysplasia or cancer should be monitored. John, it sounds like you *might* be getting better care than in the US. One of the (numerous) reasons US healthcare has poorer outcomes than most of the developed world is that we've been programmed to expect more tests and procedures than are good for us. Every test has the risk (not small) of an incorrect result. Every procedure carries a risk of an adverse event. Most people without specific risks or... [ more ]
See all 8 replies...
J-Pouch ForumsPouchitis
Only one antibiotic at a time?
J JD1943
CaySeeBee Thanks for the input. JD, your last sentence is what I've been telling myself lately. My GI is a brilliant clinician, but I've only been working with him for 3 years and this is easily the worst flare (and only real issue) I've had in that time frame. Otherwise I saw him twice a year for check ins/scopes. There were 11 rough years of UC, surgeries, pouchitis before him and my old doctor, who held my hand through it all, would absolutely have prescribed me both had he seen the last scope. [ more ]
Scott F The combination isn't very risky, and it's not like you got the Flagyl illicitly. Your GI will just need an update, however it turns out. Whatever you decide, good luck! [ more ]
JD1943 CaySeeBee. I've had my pouch for 15 years. I've seemed to get pouchitis around once a year or so. Maybe once every 9 months. If you can handle flagyl, then definitely do both. I've found that when my pouchitis is bad that I absolutely have to take two antibiotics at a time to knock it out. The case I have now is slight and I caught it early, so I'm trying just Levaquin. If I had caught it later, I would be doing both. Flagyl probably will help you. I just didn't want to deal with the side... [ more ]
See all 10 replies...
J-Pouch ForumsPouchitis
any shakes or meal replacement ideas that conform to sugar free,no starchy carbs..di
R Rebe0505
Rebe0505 hi all pretty sure any whey protein would be bad idea for me to use as i think whey is like my having starches..thus bad for me as i avoid all starches and sugar outside of fruit..so another protein to drinks is what i have to do..will look into others mentioned..would love to gain some good weight with drinks added to my three meals..want to contribute to weight from lean muscle not fat..i do train with weights three times a week but am just because of my issues a little to lean.. [ more ]
Rocket TE Marie, I use just cold water. I need to lose about 10 lbs and not doing a good job of it. The flavor is not very tasty. I use the Vanilla Plant Fusion. I do love chocolate though. I do drink Almond Milk, Vanailla Light, which has 60 Calories. I don't care for the Original Blend. I wish I could tolerate Bananas, but cannot. Every time I eat a banana, it feels like I swallowed a a bowling ball. Just very heavy. Peanut Butter? I have to look at my chart to see if I can tolerate that. That is... [ more ]
TE Marie Rocket, I use chocolate PlantFusion, unsweetened vanilla almond milk with ice in my vitamix and it tastes like a ice cream shake. (well pretty close) If you can eat bananas and peanut butter add them to the above and the shake is awesome. Almond Milk has twice the calcium as milk and maybe you can tolerate it. I haven't tried rice or soy milk. I like it as it only has 30 calories per cup! [ more ]
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J-Pouch ForumsPouchitis
After Cipro
C CaySeeBee
Scott F VSL #3 comes in DS (double strength) form by prescription only, but is over the counter at lower strength. The retail price of the two is about the same for truly comparable doses. If your insurance will pay for the DS form it will save a lot of money. [ more ]
CaySeeBee Thanks again everyone! I don't think my GI is big on the idea of full time antibiotics, at least not yet? It's never come up before but I'll talk to him. If I still feel off in the next couple of days I'll call his practice and see what he suggests - maybe I can get another round. I tried VSLIII at one point but don't remember having a good enough reaction to justify the cost. Then again, since that time I cut out gluten, went low dairy and low residue and those have all made big impacts, so... [ more ]
Scott F I'm also on antibiotics full time. They're used to treat pouchitis that just won't stay away without them. Treatment of persistent stricture is generally a bit different, depending on what's causing the stricture. I've seen dilations or surgery mentioned more often than medication. [ more ]
See all 8 replies...
J-Pouch ForumsPouchitis
Cefpodoxime (Vantin) for Pouchitis?
D DZAtl
CTBarrister I have the same deal, been on rotating antibiotics for 20 years, diet improved things, but can't get off antibiotics for more than 7-10 days before severe pouchitis sets back in. Probiotics alone have not worked. It is scary how bad I get, quickly, when I go off antibiotics. I am an antibiotic junkie. [ more ]
See 1 reply...
J-Pouch ForumsPouchitis
green bm waste..what does it mean
R Rebe0505
ccpoucho I have noticed that if I don't eat a lot, my bowel movements are green as well. When I asked my surgeon he said it wasn't anything to worry about. [ more ]
clz81 If you're on antibiotics that are treating your pouchitis, I would solidly go with blueberries! Or if you've been eating something with a lot of dark food coloring. That will make it green for sure. Otherwise, very runny and green is usually a sign of either a virus or bile if stuff is moving through much too quickly (you would see this with pouchitis possibly). [ more ]
Rebe0505 thanks sharon for inquiring..i do eat blueberries every morning..no unusual odor..do not think its antibiotics ..none are new..no cramping or unusual day to day..output sea old same old..i fluctuate between a little more solid or not can`t figure each time i would go crazy..no pain and not feeling completey empty is what i concern myself with.. just wondering if that rang a bell as to something to be concerned about..will eliminate latest pprobiotic see if that changes anything.. i just got... [ more ]
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J-Pouch ForumsPouchitis
Food for those on low carb no sugar diet
elsiezeeelsiezee
elsiezee Yes, at this point he couldn't tolerate any other rice. Jasmine rice is still working really well and he eats a lot of it. [ more ]
Savannah Hi Elsiezee. I just saw your post and am curious about it. Was your husband sensitive to other kinds of rice? I am also experimenting with a low sugar, low carb, low FODMAP diet. I am sensitive to most grains, including white and brown basmati rice. I haven't tried jasmine rice yet so I was wondering about your husbands experience with other kinds of rice? Thank you. [ more ]
See all 2 replies...
J-Pouch ForumsPouchitis
Antibiotics - side effects?
B Brows
Scott F Seeing your doctor sounds like a great idea, Brows. [ more ]
Brows Thanks Scott. I haven't really felt much of it today. Maybe I should just call my GP and get checked out in general. Could be something else is up or they got advice... Somehow easier to explain things too than over a hurried phone call. [ more ]
Scott F While you can't be sure the symptoms are from the medications, it's prudent to presume so. Flagyl has roughly the same warning as Cipro: "The appearance of abnormal neurologic signs demands the prompt discontinuation of Flagyl (metronidazole) therapy." This includes the sort of peripheral (limb) sensations you described. Good luck! [ more ]
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J-Pouch ForumsPouchitis
VSL#3 DS Was A Complete Fail
CTBarristerCTBarrister
TE Marie apa and others, thanks for including the recommendations for using more than one dose per day. I am going to increase my dosage. Especially since I've discovered I have a "large" pouch and now have a confirmed pouchitis diagnosis. In the past it wasn't active during pouchoscopes. I use one DS per day and take it while taking my antibiotic, at least 3 hours in between doses of the antibiotic. I don't care if my insurance won't cover it at this point. s.boulardii is the c.diff prevention of my... [ more ]
CTBarrister I have not given up on it. I am currently taking xifaxin morning and night and one packet VSL#3 DS in the middle of the day. I will try going off antibiotics again in another week or two when I feel good. The 4 packet a day dose has to kick in at some point, the question is will I ever be able to make it to that point without needing antibiotics. My deteriorations when I stop taking antibiotics have become intolerable within 6-10 days. If it takes 30 days to kick in I will never make it that... [ more ]
apa As we all know, all bodies are different, but I would definitely recommend giving VSL #3 DS another shot at the 4 packets/day dosage. I had NO improvement with the regular strength VSL and also no improvement with taking 2 DS packets/day (took for 6 months), but a few months after starting the 4 packets/day my symptoms dramatically improved. I had my surgery 4 years ago and have battled Chronic Pouchitis since June 2011. I've been hospitalized multiple times since my original surgery, but... [ more ]
See all 15 replies...
J-Pouch ForumsPouchitis
How do I change my diet?
BebeksporBebekspor
CTBarrister You definitely can. It's true that the strict gluten free diet is for people with celiac disease, but there is some overlap from what I have seen in analyzing various diets that are being promoted for IBD. The Paleo, SCD, Fodmap, UMass and other diets, while having various differences, do have some common themes. One is to reduce carbs and sugars, and develop an intake of more complex carbs. This involves getting rid of white flour or all purpose flour, and instead using almond or sorghum or... [ more ]
Bebekspor I remember cutting out my daily desserts and sweets when I had gestational diabetes. Once I got through a few days, the sugar cravings did minimize. I think I can do this! I read on CC only to go gluten free if you have celiac disease. When I tried going gluten free before my surgery (last ditch effort), my body hated it! Apart from my sweets addiction, I really don't eat that much sugar...I make the yogurt at home, from a scoop of plain Dannon and regular whole milk. My husband read a paper... [ more ]
liz11 low FODMAP is an elimination diet with the goal of trying to figure out the worst triggers. Get the book I referenced in my FODMAP post, it explains everything in vast but understandable detail. White bread and white pasta is NOT low FODMAP. and also a lot of fruits are ok, but some are extremely high fodmaps - like apples and mangos... feed these bad bacteria. So yes you definitely want to eliminate certain fruits but you can eat others. look at that chart in detail. CC pirated it from the... [ more ]
See all 9 replies...
J-Pouch ForumsPouchitis
ct how are you doing
R Rebe0505
Rebe0505 good luck ct in i hope getting antibiotic working again.. i am on antibiotic now total three weeks ,second antibiotic(two weeks on one started another this week for two weeks)i have had the best week so far in a long time. got me to again realize how freakin good it could be if operation was totally successful!!! sigh! found out i do not have any yeast infection..doing my diet,taking antibiotic and enjoying every moment of these good days!!! i have not even counted bms.i think this is what... [ more ]
CTBarrister As I mentioned my Doctor scrapes the skin and confirms by looking at skin flakes under a microscope. It takes all of 30 seconds to do. My dermatologist was able to confirm the rash as yeast on the spot. You know it is gone when the skin looks healthy. As I said I have seen rashes come and go before I needed to go to the Doc. It was there in my armpit one day and gone a few days later after applying Zeabsorb. [ more ]
Rebe0505 thanks i hear you..keep updating however....what you do certainly helps me think about what to do or try.. ct i know you have yeast problems..thinking i may have had it or have it with itching in butt area and vaginal area outside but it is not continually..yours sounded pretty bad but how did you know you had it?some days i have it other i do not..does that sound possible?if i am more diligent with my witch hazel wipes sees to relieve it..but does a dr. examine you for it? how do you know... [ more ]
See all 4 replies...

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