Hey - oh yes, I understand. I've had the j pouch for 29 years. I struggle with fatigue a lot. Early on, I did really well with it. Then, somewhere around 15 year in, I got so tired so easily.
Yep - eat - and poop - eat and poop. It's exhausting.
Advice: I don't know your specific situation - your age, if you are working, etc. - all of those are factors. I eventually quit my job about 7 years ago. I just couldn't do it anymore - I was a teacher and counselor for 23 years and I so wanted to make it to 30 years.
I have no easy answers. It's so individual and everyone is different. My sister also has the pouch. She got on isagenics? I think that is the name - it's expensive and I can't afford it - she gets it on amazon. It's really helped her energy. I think it has really helped her get more nutrients to "stick" and that has helped her energy.
I keep planning to go and get a nutritionist and I don't do it - but I think that is the best plan and I plan to do so after my scope early next year. I believe in the future they will discover a link between chronic fatigue and the j pouch - I really do. I've heard this from so many others. So, I think seeing if we can get nutrition to stay in is the goal. I'll commit to trying to do that.
I also think we have to be realistic. I am 52 and try not to beat myself up that my energy is low. Depression is also a factor and I take Zoloft - I think it helps me a bit. I am able to entertain myself a lot as I love to read, knit, watch Netflix. I used to go out a lot more than I do now. I still do socialize, but not as much. Luckily, my husband is ok with this. He still goes out with friends at times and I just don't go all the time like I used to.
I'd love it if I could get my BMs down - I tend to not eat just because I get so tired of pooping it out so fast....which is obviously not a good solution. So, let me know if you think a nutritionist is a good idea. There are tons of products out there - I thought about buying them - but then I thought - wait a minute - I could spend a ton of money and they may not work. So, rather than doing that, I thought : get a referral from my GI person for a nutrition person and see if my insurance will pick up some of the cost. God knows we pay a ton for our insurance - I ought to see if it will help me more. Hang in there - you are not alone.
