Hi everyone! I've had a membership to this website for a while... but I haven't actually been on it until now. I had jpouch surgery about a year ago, and I got to say, it has not been an easy ride. I am in a constant flare-up, and it seems like no doctor can help. It affects my entire life. I have to force myself to eat; I have absolutely no appetite. I'm always so tired and weak that I have trouble focusing at work and in school. I work at a vet clinic and I'm studying to be a veterinary technician, so lifting heavy dogs is a big part of my job... that I can't do. Does anyone have any advice? Maybe a diet that works well? Thanks to all of you ;
ManderPanderz
Primeboy
Hi Mander. I had J-pouch surgery in 2004 which lasted for 6 years, then I had to get a permanent ileostomy because of precancerous cells sticking their nose into things. Life with a J-pouch was OK, but I had to deal with occasional flare-ups and frequent BM's. Anyway, in 2010 I got a permanent ileostomy and never looked back. Keep in mind I am probably in your grandfather's generation, and what works for me may not be good for you; but with an ileo, I have had none of the problems you describe and I feel younger each succeeding day. So, my advice is simple: if your J-pouch is causing your unrelenting pain, and diets don't work, consider a permanent ileostomy. My experience with the bag has been nothing short of exceptional. I feel like I can do anything now that I did when 19, even better. That's my 2 cents. Good luck! PB
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ManderPanderz
I have been in a constant flare-up since I had the J-pouch surgery. Going back into surgery and getting it reversed is something I have been thinking about for a while. I was feeling a lot better when I had the bag, but I dread going back into surgery :-/
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vanessavy
I have a BCIR. Continent ileostomy. I have an issue with SIBO (small bowel bacterial overgrowth). Have you been tested for that? It could be adding to your issues. It is from eating white bread, pasta, and sugar. I had about 1.5 years of horrible gas, pure liquid stool, and horrible pain. I was told about a low FODMAP diet, but I stuck to a Paleo diet since a high-fat diet doesn't let bacteria form and helps you gain weight and nutrients that the body is lacking, and it turned my life around. It can take a few months to feel better, but I was on a 14-day course of Tindamax, an antibiotic that treats SIBO or other bacterial infections, and started to eat high protein, healthy fats, uncured bacon, and olive oils. I see Dr. Bo Shen at Cleveland Clinic; they suggest this way of eating for the above-mentioned reasons. I was eating bread and pasta a lot and tons of chocolate in the beginning since it was just easy to digest, but it was making me worse, and I didn't even know about SIBO. I wouldn't give up just yet on your pouch; it sounds like you still want to fight to keep it. I would look into Paleo; I alter it a bit since some veggies I cannot eat. I also cut out fruit since that is still a sugar.
I do not miss out on food though. I make all kinds of cake and ice cream that is sugar, dairy, and grain-free. There are a lot of books and cookbooks out there for Paleo and tons of free blogs, Pinterest with endless recipes. It might help, and perhaps see about having a test for SIBO to see if you have an overgrowth. I know bacteria can contribute to pouchitis, ulcers, and other IBD-related issues.
I am not sure if you are really in a flare or if it is something else. For example, I was told I had pouchitis for a year, and my nurse, the idiot, kept giving me Cipro and Omnicef. Turned out I had C. diff the whole time, and the antibiotics made me even worse, and I was just told to keep rotating. I can go on Tindamax and Flagyl only if I have a bad case of recurring SIBO. For me, even if I went to a bag, I would still have SIBO issues since it starts to form in the gut. Make sure you get tested for C. diff since it is becoming more common that people without colons pick it up.
Past Member
Hi young lady,
I'm sorry you are having a hard time. I've never heard of Paleo but agree 100% that all white foods, sugar, flour, etc., can cause a myriad of problems in the belly. In fact, my surgeon told me that is why he does so many ostomy surgeries (the American diet). He is Chinese and in his country, they don't even have a name for ostomy surgery because no one needs it. Their diet is comprised mostly of fish and vegetables. He told me sugar is a "hotbed for bacteria". I do trust my surgeon completely. He saved my life. When all the "specialists" were running around the hospital like chickens with their heads cut off, screaming "cancer", "ovarian cysts", I lay slowly dying. Once he was called in, he calmly told me he was going to have to go in for exploratory surgery because I was so infected, no one could read the scans. No one knew how to cure the infection and no antibiotics were working. He said I had less than 24 hours to live after writhing in excruciating pain for one week in that hospital bed and losing weight by the minute to the point that I looked like a POW. Anyway, I agree with PB (I always agree with PB!), if it ain't broke, don't fix it, but if it is broke, get help! PB convinced me a plane ticket to the Mayo Clinic was do-able, so I did it and have never regretted it. Surprisingly, their services are cheaper than NM (where I live) or TX (where most New Mexicans get treatment). My plane ticket was the most expensive part. (I am a senior though and do have Medicare). I was finally diagnosed correctly following a multitude of cascading complications from the surgery (not the fault of the surgeon) but how my body builds scar tissue, erosion of my pelvic floor, high blood pressure that was causing renal failure, hypothyroidism and fibromyalgia were all causing me pain because my organs were being damaged from these undiagnosed, untreated conditions. The right foods, exercises, and medications have given me my life back. Like PB, I'll probably never get a reversal. I'm fine with the bag and freedom from pain is such a joy. Try the Paleo (I'm going to - can never get too healthy), get a qualified opinion (even if you have to travel) and read as much as you can about others on this site. This site has also saved my bacon a number of times (like when I had a mechanical blockage). Boy, I learned fast how to avoid those! Don't give up and may God be with you, little one. Loretta
I'm sorry you are having a hard time. I've never heard of Paleo but agree 100% that all white foods, sugar, flour, etc., can cause a myriad of problems in the belly. In fact, my surgeon told me that is why he does so many ostomy surgeries (the American diet). He is Chinese and in his country, they don't even have a name for ostomy surgery because no one needs it. Their diet is comprised mostly of fish and vegetables. He told me sugar is a "hotbed for bacteria". I do trust my surgeon completely. He saved my life. When all the "specialists" were running around the hospital like chickens with their heads cut off, screaming "cancer", "ovarian cysts", I lay slowly dying. Once he was called in, he calmly told me he was going to have to go in for exploratory surgery because I was so infected, no one could read the scans. No one knew how to cure the infection and no antibiotics were working. He said I had less than 24 hours to live after writhing in excruciating pain for one week in that hospital bed and losing weight by the minute to the point that I looked like a POW. Anyway, I agree with PB (I always agree with PB!), if it ain't broke, don't fix it, but if it is broke, get help! PB convinced me a plane ticket to the Mayo Clinic was do-able, so I did it and have never regretted it. Surprisingly, their services are cheaper than NM (where I live) or TX (where most New Mexicans get treatment). My plane ticket was the most expensive part. (I am a senior though and do have Medicare). I was finally diagnosed correctly following a multitude of cascading complications from the surgery (not the fault of the surgeon) but how my body builds scar tissue, erosion of my pelvic floor, high blood pressure that was causing renal failure, hypothyroidism and fibromyalgia were all causing me pain because my organs were being damaged from these undiagnosed, untreated conditions. The right foods, exercises, and medications have given me my life back. Like PB, I'll probably never get a reversal. I'm fine with the bag and freedom from pain is such a joy. Try the Paleo (I'm going to - can never get too healthy), get a qualified opinion (even if you have to travel) and read as much as you can about others on this site. This site has also saved my bacon a number of times (like when I had a mechanical blockage). Boy, I learned fast how to avoid those! Don't give up and may God be with you, little one. Loretta
Living with Your Ostomy | Hollister
ManderPanderz
I have been curious about the paleo diet for a while; it's something I'll have to look into more. I've been looking up some recipes and a lot of it looks really good! I've been tested for C. diff, and it came back negative.
It seems like everyone has had good luck at the Mayo Clinic. I've been trying to go for a while, but my insurance has been getting in the way. I feel it would be my best option since all the specialists I've been to in Colorado seem to have no idea what to do with me!
Thank you all for your ideas and support!