Plenty of folks report it here, but that doesn’t make it “normal.” I suspect the most common causes for J-pouchers are dehydration and anemia. There are also plenty of non-pouch-related causes to consider. For example, sleep apnea is pretty common and often goes undiagnosed. I’d suggest thinking about things that might have changed, as well as getting a proper medical evaluation. I hope you are able to work out the cause!

I’m almost 4 years out and have “bouts” of weakness, no energy, no appetite, and sometimes with chills but no fever. Since it could be dehydration I keep Pedialite on hand, but still can’t say definitively  that dehydration is the issue. These “bouts” are usually accompanied with pouchitis symptoms and last a few days, then I get back to my normal. I’m also back in the gym. While it’s great to have some muscle tone back, I struggle to eat enough calories and getting enough recovery sleep. I’m up too many times at night and know that’s adding to my issues. SIBO test tomorrow.

Ever since I had my proctocolectomy, I have been tired/fatigued everyday since 10/13/2014. I accept the things I cannot change and I just work with it to be honest.

I have 14-20bms everyday, so I am tired from that since I do not sleep 8 hours a day.

Everything will be okay, just work with it and you will be fine, I have faith in you

If your fatigue is recent after 6 years with a j-pouch, this is not likely something that is j-pouch related or something to be considered normal. You could have a virus, poor sleep, dehydration, stress issues, or any number of things. While getting some exercise can help get you out of a fatigue loop that is related to stress, a heavy workout program can just worsen your fatigue.

If this persists after your rule out stress, sleep dysfunction and dehydration, you should talk to your doctor for screening tests to rule out an organic cause.

Jan

Hey Jacob, sorry to hear you’re having a rough time, I hear you tho.. fatigue is my daily nightmare.. as already mentioned dehydration .. this has been a big one for me, I used to have regular bouts that would put me in A&E every other month, that was at its worst about 5/6yrs after my surgery.. I found wearing a fit bit or similar that monitors heart rate really useful to help see it coming on.. my resting heart rate would always rise slightly before I physically noticed it. I also have a WiFi body scale that monitors water level in your body at the same time as weight and BMI etc. Maybe try having a rehydration sachet each day in the morning, can’t do any harm 👍

And unfortunately PSC, Primary sclerosing cholangitis - autoimmune disease of liver with strong links to colitis, often asymptotic… that’s turned out to be a major cause of my fatigue.

Rest when your body tells you 😊..  I put myself in hospital a few times trying to keep up with ‘normal’ people, or overcompensating for being unwell.. mistake! 😂

In fact the liver may play a role with fatigue. If the small intestine's barrier function is weakened (leaky gut), then bacterial residues can get to the liver through the portal vein, together with the nutrients that are absorbed. That can lead to an inflammation of the liver which may stay asymptomatic for a long time or only show in an enlarged liver.

For now I have signs of cholangitis that showed in my last MRI and the liver's blood levels are partially too high.

When the liver is harmed, the production of bile can be reduced or unregular, worsening the digestion of fats. That again irritates the bowel. It seems like a vicious circle.

My digestion is good when I take antibiotics, and when I leave them for some days it gets worse and inflammation of the pouch and the terminal ileum increases. On the other hand antibiotics stress the liver. And they also interfere with the possible solution - reinforcing the bowels barrier and mucosa is promoted by certain bacteria. It really lookes like a no-win situation.

Hi Jacob, I think it's related to dehydration at times. But other times it can be stress or just physical exhaustion. I try not to work 2 days in a row, so I work a casual job. I find the energy sports drinks help a lot. Hang in there! you're not alone, Glenys

@Glenys D posted:

Hi Jacob, I think it's related to dehydration at times. But other times it can be stress or just physical exhaustion. I try not to work 2 days in a row, so I work a casual job. I find the energy sports drinks help a lot. Hang in there! you're not alone, Glenys

Thank-you hon, this helped me

They have Gatorade Zero at the store too

And you might want to check for a VitD deficiency,  common with bowel disease.

Heyyo again,

thank you all for your replies! I have been doing better since I cut back on cardio at the gym and drinking more water.
But I do feel like it’s probably best for me to get a checkup regarding my J-pouch. (Believe it or not I never had a follow up since the surgeries lol)

@Jacob O. posted:

Heyyo again,

thank you all for your replies! I have been doing better since I cut back on cardio at the gym and drinking more water.
But I do feel like it’s probably best for me to get a checkup regarding my J-pouch. (Believe it or not I never had a follow up since the surgeries lol)

You never had a follow up since your surgeries?!?!!?! Its recommended we get checked every 1-3 years.

@Former Member posted:

You never had a follow up since your surgeries?!?!!?! Its recommended we get checked every 1-3 years.

No I just never got around to it. And I was feeling better so thought I’d be good haha. Plus my surgeon who I’d love to see again and follow up with Dr. Shew, no longer works at the hospital I go to unfortunately.

but I definitely will get looked at soon

@Jacob O. posted:

No I just never got around to it. And I was feeling better so thought I’d be good haha. Plus my surgeon who I’d love to see again and follow up with Dr. Shew, no longer works at the hospital I go to unfortunately.

but I definitely will get looked at soon

Okay good! I get my pouchoscopys done awake I can drive home

Remember, every 1-3 years.