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Hey guys it's been a while since I've been on here. Since the new year I've been experiencing a lot of pouch pain and urgency. I got down to 117lbs (from 150lbs), throwing up uncontrollably in the hospital for days. I was finally transferred down island to my amazing GI, and he got me on the mend. CT scan showed thickening of the pouch wall and some of my right side bowel. I did receive a fistulotomy a few years ago and it hasn't come back there since. He also felt in my pouch and said the inflammation didn't seem very bad. I've been home since friday and I feel better now than I have in years. I really want to try to maximize my success after these meds, and be as healthy as I can. I want your guy's opinions on a few things, as I'm not as familiar with some aspects of prevention.

My current meds are:
40mg of prednisone 1x daily, to be tapered 5mg down every 7 days until done
250mg flagyl 2x daily for 14days
250mg cipro 2x daily for 14days

I'm also taking loperimide 2-3x a day to help water absorption and slow things down, wild salmon oil pills, an opti-men mulit vitamin, and drinking aloe vera juice a few times a day. Drinking lots of water through out the day. I don't drink sugary drinks anymore, or sugary foods. Once I put on more weight I plan on training and taking protein. I want to know if there are any specific probiotics or other similar products I can take to help keep my natural flura count up, especially while on the two antibiotics?

There are so many different types I figured you guys would have your favourites for people with a j-pouch. Any other tips on how to keep my pouch happy and inflammation free would be much appreciated! Thanks for the help.


-Nolan

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I'm glad you are feeling better. I've been using VSL#3DS prescription strength probiotics almost since my take down 17 months ago and have not had pouchitis, yet. It's got 900 billion count in 7-8 different strains per daily packet. You keep it refrigerated so don't order it from anywhere unless they guarantee it will be refrigerated at all times. I get mine from Walgreens and my insurance pays for it. It's expensive in the USA. I don't know if Canada pays for it. You can buy VSL#3 non prescription strength and use 2 a day to equal one packet of DS. Some take more or less than a packet of DS per day. It is expensive and a sponsor of this site, see above. You can order caplet form but it is not near a strong. You can also buy some others in stores but if they are not refrigerated they are loosing their strength from the time they are bottled and don't have near as many billions in count.

There are several good threads on here discussing VSL#3 and other good probiotics people are using from over a year ago. LionsPride did all the research on how to get the pharmacy to order it in special for you.

I'm also using an non-allergic plant based powdered protein that is organic and has all kinds of good nutrients that are good for promoting cells etc. It's called PlantFusion, it provides 42% of the daily required amount of protein in one serving and they sell it on Amazon if you can't find it locally. If you go to their website and enter your zip code it tells you where to buy it retail in your area. I don't know about Canada. I love this and have several friends using it to as its nuts, soy, gluten, lactose etc. free. I don't have any food intolerances but use it anyway. I make fruit smoothies of all kinds and even throw in fresh veggies like spinich with the fruit at times with the vanilla flavor. I make a good peanut butter/banana one too with the Chocolate flavor. I use coconut water most of the time or another juice in it to. I mix my VSL##DS in it too.

Best wishes for your continued recovery.
TE Marie
Last edited by TE Marie
Thanks for the tips. I'll lay off the probiotics until my antibiotics are done in two weeks. I have an awesome medical plan that covers 100% of prescription costs, but I doubt they cover probiotic treatments. What's the best way to get my insurance company to cover it? Coming from people who have gotten it added to their plans, their must be a way to make it look appealing for them to cover it?

My GI was talking about maybe starting me on Remicade after this, since he thinks the thickened bowel wall might be Chrohn's now instead of UC, but that's not for sure. If I can stay on the mend after this course of antibiotics while tapering off prednisone, I'll try anything.
Subsky
LionsPride has all the information about the prescription VS#3DS which is a prescription and the only one classified so here anyway. He posted the relevant information, product #'s or whatever.

You might want to PM him as I don't remember exactly when it was posted but he can direct you better. Do you know how to do searches? It's on the menu at the top left hand side of the screen, the magnifing glass Icon with "Find". If you want to search it now look for VSL#3 or VSL#3DS and I'm pretty sure it might have been a year ago give or take a few months.

I hope they test you for crohns before starting treatment. I'm sure they will but that would be a bummer.
TE Marie
Thanks I'll look that up about the VSL#3DS.

I also hope it's not Crohn's. Last scope a received a couple months ago my GI took biopsies and they came back negative for Crohn's, but he said the biopsies can be tricky. Also the physical thickening of section of small intestine, not just interior inflammation as UC is, made them think maybe Crohn's.

My plan right now is to use this hitting bottom as my chance to climb back up. I've been feeling so ****ty from the pouch pain and frequency for so long, I forgot what good feels like. I smoked before, maybe 2-3 cigarettes a day from stress, ironically enough they were probably causing a lot of the stress from what they did to my body. I told myself I'm never smoking again, and it's been two weeks since I quit, haven't even looked at one since. Just needed a reason to stop. Knowing I could feel better and have a higher quality of life is all the motivation in the world I need to get better and live a healthy lifestyle.

All I can do now is try my best, keep a positive outlook, and listen to/try all the things you guys suggest to me! Smiler

-Nolan
Subsky
That`s why I became active on this site again, to help out others and let them know it gets better. I remember when I was in the hospital years ago a guy who had a j-pouch came in the visit me, and tell me about the surgery. He was very helpful, down to earth, and most importantly let me know what I could realistically expect from j-pouch life. He also told me about j-pouch.org, which I became a member of my first week out of the hospital after my one stage j-pouch.

For years I haven`t taken my health seriously. I`ve always been underweight, or sick. I forgot what it feels like to be healthy, caught in this haze of sickness and weakness. So now that I know I`m in control of how I feel, I want to give back and share my experiences with others going through a much worse time then me. Also to help answer questions, give support and let people know it really does get better. Believing that it will is the first step to getting well again.
Subsky

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