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Hello, I've had my J-pouch for 2.5 years now, and for the first 2 years, because of other health problems, I was on very high doses of opiates, Dilaudid, MS/OXY contin, Fentanyl patches; I only had 2-3 stools a day, I could eat absolutely anything, drink soda, beer, anything I wanted. 6 months ago, I stopped taking all of my pain meds, because I underwent a stemcell transplant and it greatly helped the pain causing issue, and because of long term risks/issues opiates cause, I asked to start coming off of them. Overall quality of life is reduced, but there are problems with being on opiates long term.

Since coming off the pain meds: At first I had SEVERE diarrhea as my body adjusted and my bowels were waking up, which lasted a couple weeks. I was told by my surgeon to take 2 loperamide chewed up with apple sauce 30 min before each meal, and to eat a carb/starch heavy diet, additionally to eat saltine crackers every time I drank fluids and/or eat apple sauce to quench thirst, also drink G2 gatorade, and take metamucil with 2-4oz water 1-2 times a day; eventually work up to 30g fiber a day from food/supplement. This worked very well, a diet of bagels, toast, pasta, frenchfries, pizza, applesauce, and fiberone brownies brought my output to 2 stools a day, and I could actually pass gas.

Currently: over the last 3-4 months, I am having more troubles with gas, bloating, loose stools, and increased output to 5-10+ times a day, and some cramping. Then about 2 weeks ago, I had a bad night blood in the stools and ended up in the ER, I thought I ruptured my pouch or something, but a CT showed it was intact, so they treated me for pouchitis with flagyl. after a couple days of Flagyl I got very sick, extremely nauseated etc, and stopped the Flagyl. Today I was seen by an Internal Medicine Dr, who said pouchitis did not show up in the scans I had, but treated me with Maxofloxacin(avelox) anyways to be safe, I will not be able to see GI for a few weeks. A year ago, I was also thought to have puchitis, but a scope showed I was clear, but that I had the equivalent of a canker sore inside my pouch and there isn't anything they could do for it, and it turned out the pseudo-pouchitis was caused by taking too much gas-ex (which my primary Dr. told me to take). Anyhow, not sure if I actually have pouchitis or not, I am VERY sensitive to the side effects of antibiotics due to other health problems, and am petrified of getting C. Diff

My question to those that know far more than I do about all things J-pouch is:
My diet seems to be contradictory to what much of what I have gathered from the forums here, should I be eating tons of applesauce and loperamide/ BRATY diet foods?

Also, My girlfriend is graduating from Law school, and as she is applying for jobs, we are deciding what state to live in. She was thinking we should go to Colorado or California so I can be put on medicinal marijuana, as it seems to be a good treatment for all my ailments, anxiety, pain, nausea, stool output, insomnia etc. Does anyone use marijuana for GI or other symptoms here? Doctors where I live have no knowledge or experience with the drug so they haven't been helpful at helping deciding if this is something I should look into, though the state board of pharmacy where I live has been advocating its use as a medical treatment for a few years now, lawmakers are ignoring this. I wish I could make a trip to California to see if it would even help me, but you have to be a state resident to even try it. I love where I live, so I don't want to make a move across the country, only to find out it doesn't even help me. So if any of you out there have any experience, please give advice. I have lots of troubles healthwise, and there is a serious lack of any clinical data regarding marijuana, but people seem to be claiming its a wonder-get-your-life-back-drug.

Please help, if its my diet thats off or the Immodium, or whatever else, I'm all ears.

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It doesn't sound like you are eating much protein. Do you eat anything like Greek yogurt or Fruit Protein smoothies or meat? Maybe your doctor was suggesting that diet for just then as it doesn't sound like a good diet for the long run. I don't think you need to eat all that applesauce. I use Loperamide prescription capsules so they don't need to be crushed. I've had my j-pouch 3 years and can take up to 8 of these a day. I usually take between 3-6 depending on what I eat. I also still take Norco pain medication daily but it doesn't seen to affect my output like the medications you were on did.

I have disabling fibromyalgia and peripheral neuropathy, etc. Many who live in states with legalized medical marijuana sing it's praises. They tend to use it in an eatable form and many have dosages figured out just like any other medication. I too would like to try it but there are differing strains and there are specific ones that are best for medical use. I would also like the strains that do not produce a high and make one have the munchies! It is my understanding that Colorado is going to allow anyone to use it so I'm assuming visitors will be able to purchase and use it as well. You might want to look into this. I'm not going to try it without the approval of my Internist but it sounds better than narcotics and that it works better. Plus it works for chronic pain that I have no relief from currently. It is natural and probably better for our livers and kidneys than narcotics as well.

I hope things improve for you!
TE Marie
The carb heavy diet is mostly for the early post op period. Long term it just fosters SIBO (small intestine bacterial overgrowth), where the symptoms are similar to pouchitis without pouch inflammation seen on scope. Lots of gas is very much a predominant symptom. So, my first advice would be to go light on the carbs, especially sweets and processed starchy foods. If your diet is heavy in proteins, fruits and vegetables,you may be happier. You may have a higher frequency, but if you feel better, does it really matter?

You really need to be scoped to properly diagnose pouchitis. I am not sure what scans are reliable in that way.

You should not still need to chew your Imodium and you can just space it out during the day (it peaks after about 4 hours). I never heard of simethicone (Gas-X and similar) causing intestinal lesions, so I don't know what to make of that. It is one of the most benign drugs out there. Even safe for babies. But it sounds like you had pouchitis symptoms without pouchitis. The typical diagnosis in those cases is SIBO or IPS (irritable pouch syndrome, essentially the same as IBS). Some people have pouchitis diagnosed due to a single ulceration in the pouch. You don't need your whole pouch involved.

As for the medical marijuana, a number of folks here have said it was helpful for them.

Jan Smiler
Jan Dollar
San Diego is shutting down medical marijuana dispensary all the time. Our current D.A. wants to enforce Federal law. However, it is now considered a minor citation to an individual if you have more than 1 oz on your person or more than 4 plants. I don't know if there is any evidence it would help with your pain.

I do think that if you pissed positive for THC (prescribed or not), you could seriously hurt your chances for getting a job. Disability discrimination? Not per Federal law.
Lesandiego
PLEASE HELP ME!!!!!!!!
I am trying so hard to accept this j pouch, I just dont think its agreeing with me. My takedown was in Aug. of this year. So far, I have had 2 ubstructions both from limotal or immodium. I am no longer taking them for fear of having another ubstruction (yes, i have tried splitting the tablets in half and still had problems). I need to know what else to use to slow my motility?? I am using the metamucil cookies that bulks it up pretty good but does not slow it down!! Do you know anything I can use? Please I am truly miserable, I am still losing weight and am very concerned. I also just had my 2nd pouchoscomy both had biopsys and they both showed no disease. Since I left the hospital I have had alot of gas with a little of stool coming out its now 8:41 PM and so far I have used the bathroom 13xs today. Please please help me, I am so over this thing I swear, my stoma was easier ( even though I hated it). I could eat what ever I wanted and now I cant. I also still have this awful butt burn. I dont want to give up but I am so sick of being sick all of the time. What do I do??
PLEASE , PLEASE, PLEASE HELP!!!!!!!!! LJK
L
Immodium sucked all the moisture out of my body. I felt totally dehydrated, dry mouth, dry skin, constipation to the point I could not pass stool without horrid straining. I told my doc, they put me on Tincture of Opium. For me, it is much gentler. I take 10 drops every 4-6 hours as needed and it seriously slows me down (usually.) In don't know what I would do without it.
kta
Tincture of Opium (DTO) is about as Rx as it can get. Plenty of doctors won't prescribe it because it scares the heck out of them. It's enormously helpful for some folks, and slows the gut more powerfully than anything else. OTOH if Lomotil caused unacceptable side effects/obstructions, I'd expect DTO to have a stronger effect in the same direction.

ljk, did you stay well hydrated while taking the Imodium/Lomotil?
Scott F
I just wanted others opinions on the situation, thats all. Sometimes I feel as if we (jpouchers) sometimes know more than the M.D., Because we are the ones living with it and going through different experiences with it as well. Yes the M.D. have the knowledge of what to advice, but until you actually walk in someones shoes that has a Jpouch, then you really have no idea how that person is feeling. I know for me if someone were to ask something that I have personally dealt with and someone asked me. I would give them all the information I know to help. This is all very new to me since its been so long having my ostomy for years and then to a Jpouch. Yes, I do get afraid. I am trying to make this work as best that I can, but everyday I am personally learning what works best for me, like I said its still very new to me and yes sometimes I am on the edge. I apologize for any incoviences that I have caused. The unknown is scary! LJK
L

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