@PSJ posted:

Just curious...

I have had a j-pouch since 2009, so almost 15 years.  Many ups and downs over that time but in general how do you long timers feel?  I turned 59 this year but my energy is really low, I am sore all the time and my gut just feels lackluster.  My appetite is not great and I am losing a little weight slowly over time. I am always sore in my gut say like about 2-3 on a pain level so just enough to let me know it is still not completely happy.

My sleep is never great and I try everything to get more rest but I am also always tired.  I get 6-7 hours sleep on average I would say.

It is not that bad but I am just wondering if I could be better or if this is as good as it gets.

I am interested in people opinions.  Thanks!

I’m 60 and had my j-pouch for 42yrs, the last 10 have been rough, and I feel like ever since I turned 60 everything went to pot lol

seems like everything is harder, harder to get up in the morning, harder to get enough rest. Tire very easily. I’ve been on budesonide, which is a miracle drug for me. I’ve never had pain in my gut but joint pain yes. I started entyvio that seems to be working.  I just seem to push through no matter what, I’ve come a long way, can’t give up now.

you are my people! At 59 I am felling all of this. Waking 4-6 times a night is destroying me mentally. My whole body/joints ache most everyday. Had emergency surgery for a complete bowel obstruction in May. In hospital for 10 days. Helped some with pain but just worn out and tired all the time. Getting up is hard, mood is down. I am on Entyvio for a year now. Was diagnosed with Crohn's last December. Double lucky lol. Take lomotil rx and oxycodone when it's really bad. But that's a challenge to get so it has to be so painful I'm in bed. Any suggestions welcome. I had pouch evaluated at Cleveland Clinic in Aug. supposedly functioning normally.

check your vit D and B12 levels.. My husband found out that his levels were low.

I have found that where I am at is as good as it gets.

i cannot gain weight

I always have to watch what I eat, how much I eat, and  when I eat.

i am always tired since I am taking loperamide 3x/daily.

Always have to take into account restroom considerations when traveling.

vitamin d and b12 stay low without supplements.

on canasa permanently to avoid cuffitis.

have to avoid heavy simple carb intake to prevent recurring SIBO.

Having said all that, I am grateful that I have it well under control, and the alternative to our situation is  one that I am not interested in!

Im 43 and go back and forth between feeling great and feeling exactly like you describe. Maybe ill be where you are when i hit 60.

A lot of my stuff is mental health too though. I had depression and anxiety before the IBD and the IBD made it worse, and it in turn worsens gut stuff.

At the end of it all it is still a better life than UC.