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.
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.