Chronic pouchitis and exercise.

Have you been trialed on any biologics like Remicade or Entyvio or Stelara? You sound like a prime candidate for that next step in treatment. When I got my Remicade infusion yesterday there was another woman in the infusion room with me and she said she had been on Remicade 10 years and hasn't had a single symptom since starting the treatment. She looked like she was in her 60s.

This could be completely unrelated, but i have a lot in common with your situation.  So far, there is no real answer, but I’ve been focusing on sleep recently.  My weight also fluctuates, and i do exercise.  When I’m heavy, i experience obstructive sleep apnea.  I was diagnosed with a sleep test, and got a c-pap.  I found that something so simple as getting better sleep took the edge of of all these symptoms.  I still have 10+ bowel movements a day, and wake up several times a night to go to the bathroom, but the nighttimes still seem less disruptive. I’m 60, so that’s a big difference.  I was diagnosed and had my colon removed at 40, and was still fit and otherwise healthy.  At this point, my fluctuating weight (and the Crohn’s) has caused a lot of joint and back issues, so keeping on top of things has gotten a lot more difficult, but i still think it’s terribly important to exercise when and how i can.  Maybe talk to a sleep doctor?  See if there’s anything that can help you get a more solid night of sleep.  Good luck!  I know it’s hard.

I am not a man so feel free to dismiss my input… but I relate to the desire to live life to the fullest after somewhat reclaiming my health after colectomy surgery. I was so happy and relieved to not be controlled by my symptoms, but also experienced simultaneously some new versions of depression and anxiety. Honestly I think years of dealing with chronic illness takes a collective toll on our mental and physical health, and it takes time to fully “recover” and recalibrate. And even feeling much better after surgery we still can’t expect our bodies to be “normal” - we’re missing an organ after all!
I had to do some internal work finding peace and rest within my limitations… not pushing myself too hard and enjoying the gifts I have been given. And really I can do a whole lot more than I used to, but I still feel a little bit more fragile than the general population. As I tell my husband, I’m like a super car… I require fine tuning or I don’t operate well

I still enjoy doing things that were previously very difficult for me - travel, sports, working out, social events… but also try to be mindful of when my internal drive switches from fun to pushing too hard.

Unrelated and maybe obvious, but might be worth looking into nutrition/supplementation for the low energy. Maybe not focusing as much on weight loss but feeling energized and well. Even though my blood work usually looks good I try to keep up with a good multi-vitamin, magnesium, etc. because I feel like without a colon I’m at a disadvantage. The book “What To Eat With IBD” is a resource worth checking out.

My friend I don't know what I can say to you. It's a different life for us it seems. I think you really need to enjoy the "good" days. It sounds like you are very active and I commend you with envy. Sleep is a nightmare, and key to energy levels. You obviously have immodium ? I use it religiously at night to try to fight off the night shift on the toilet. I just keep hearing that time is what it takes. But no idea how much. I don't even know if we ever get "good" again. It's a living hell sometimes. Stay as strong as you can and look for joy when you can get it.