Hello all,

I was wondering if any of you have chronic fatigue with your j pouches? I've had my pouch since 2004, UC since 1991, and I have always struggled with fatigue. I feel better with my pouch, no question, however, I am still so tired and worn out. I am now on disability due to chronic fatigue in addition to heart arrythmia, chronic pouchitis, etc. Is this common for others or am I dreaming this up?

Thanks for your input!

Alli,
I am sure you've had your blood work done numerous time since you feel this way for several years. Several j-poucher here need prescription strength iron. Ask your Doc if you should get Iron shots. We don't absorb B-12 as good. Have you tried Forvia multivit. It is high in B12.
Hope you feel better.

Hi Alli, I experience the same issues. I have to work now, but used to lay in bed or on the couch for 5 years. I get a good amount of sleep (9-12 hours a night) but I am always exhausted.

One thing that is similar to what beucfree mentioned about iron is something that happened to me recently. I was hospitalized for a massive infection and accepted a blood transfusion for the first time. My friend's mother is a great nurse, and is chronically ill herself, and encouraged me to do it. I did and I have never had more energy!! I am going to look into whether this is something I can do on a regular basis, since I do bleed everyday and I have chronic pouchitis, and I think I am starting to experience the beginning of RA. My doctor has always said that I either suffer from Chronic Fatigue, or it is just a huge part of my autoimmune issues.

Can I ask you if there was a way your doctor actually diagnosed you with with Chronic Fatigue? I didn't think there was any definitive test, and certainly didn't think disability could be based on it.

But you are not alone... I hope that makes you feel better. At least you know there are pouchers all over the globe napping at various times during the days so you are always in good company!

Thanks for your input guys I haven't been diagnosed with Chronic Fatigue officially, I'm just always so so tired all the time - sorry for the confusion.

I have been on iron shots before, probably need them again. Just wondering if anyone else out there has the same energy deficiency that I seem to have. It does help to know that this is "normal" for some j pouch folks.

Glad you are feeling better after your transfusion. Sometimes I wonder if I need a top up myself

Fatigue is and has been my very worst symptom!

Fatigue and wooziness is what beats me down and has been for a long time. Recently diagnosed with Ankylosing spondolitis which is also an autoimmune disease. Its an aggressive arthritis. Also been battling a c-diff infection. Not having fun. Hope you feel better.

I have fatigue but I know it's because I am anemic. I'm a year and a half out from surgery and still dealing with a low blood count even taking a supplement.

Alli, thanks for bringing this up...you definitely
are not alone! I've often felt a fatigue in my joints
(especially knees & elbows) that's very difficult to
describe. I used to try talking about it but eventually
gave up. I'm much more active now than I ever was with
UC, so people simply said "slow down...don't do so
much." But in my heart I know that's really not the
answer; the fatigue is something beyond over exertion.
Anyhow, I eventually gave up trying & now just keep
it to myself & accept it as par for the jpouch course.
I try not to let it slow me down & take naps whenever
I can. ;-) Sorry for the rant/vent and thanks again
for raising the topic. Prayers & Best Wishes, Steve

Fatigue is a symptom, not a disease, so I sure would not allow a diagnosis of chronic fatigue unless all causes of chronic fatigue were ruled out.

If you have any source of chronic inflammation, fatigue would be a common symptom, since inflammation causes fatigue. The body is devoting resources in dealing with the inflammation, leaving less energy for the things you need to do to live a productive life.

Chronic pouchitis can do this. Anemia can make it even worse, as it makes your heart and lungs work harder to get the same amount of oxygen to the tissues. But anemia may only be part of it. I know that when my arthritis is flaring, I feel like the air is made of molasses and every step is a big effort. That is the inflammation causing fatigue. My blood counts are always good and my vitamins too (tested every 3 months). I was deficient in vitamin D, but nothing changed when that was reversed.

Jan