Have had my j pouch for over 20 years it was my new normal. About 5 years ago had horrible painful spasms and lose of control. My gastrointestinal doctor who I loved and respected said I needed a specialist and was at cleveland clinic next day. Was told with so many infections pouchitis my j pouch has become weak. Had to stop working and was put on Belladonna /Opium suppositories every 12 hours changed my new normal and put my life emotional and financial in a tail spin. My ins paid for medication and then went on medicare and would not pay for it. It costs 1500.00 a month. Doctors not knowing what medications cost said valium 5mg suppositories which were 2000.00 a month. Help with spasms but not pain . Found compounding pharmacy and it costs me 120.00 a month. Always had hypothyroidism now hashimoto and have gained over 50 pounds not blaming all hashimoto but also not being able to work has not helped. Now I am trying to find a nutritionist that can help me figure out a diet or way of eating for both and help with my hormonal imbalance and now depression. Yes I am a mess. I live in the akron ohio area. Anyone going through this that can give me some words of wisdom? Thanks so much Frances
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Hello, Frances.
I am so sorry about your new difficulties. There are some online support groups for people with Hashimoto where you can post questions and answers, similar to this j pouch group, but specific to Hashimoto diet and food plans. I had never heard of Hashimoto before and only did a quick Google search. You have probably done all this already.
Most dieticians charge a fee for their services and that might be a further financial burden for you. The cancer support centre I attended last year offered nutrition and cooking classes for free, not specific to j pouch living but to general wellness and how to choose and eat nutritious, whole foods to support and strengthen the immune system. I learned a lot, gathered what I needed and applied it to my new j pouch life. Could you try searching the website of your local library or major hospitals to see if there are classes or lectures on nutrition, and from there you could network and find other resources? Or google for a Learning Annex in your city for wellness or nutrition classes? Try to fix one thing at a time starting with what is easiest for you. I'm sorry I am not more helpful than this. Wait and see if anyone in this j pouch group knows more about Hashimoto and can help you.
Hi Frances! So sorry to hear about your digestive issues! I've had a pouch for 23 years and have had more changes over the last 5 years or so. My new normal for the last 2 years has been: No uncooked fruits, Minimum green and yellow vegetables (cooked or not), NO beef or pork (only chicken, turkey or fish). Lettuce and tomatoes in small amounts seem to be okay. I'm good with dairy, so I eat lots of yogurt and cheese. Eggs are okay. If I stick to this, I have no spasms or pain. If I stray, I'm in for at least 24 miserable hours, maybe more. My gastroenterologist has me on omeprazole and mira-lax. Before I started restricting my own diet this way, I was in almost constant pain and taking opioids every day. I hope you can find relief soon! Diane