Extreme fatigue 2 years out from j-pouch

Hi everyone,

I'm about two years out from my final J-pouch surgery. There have been ups and downs, but I feel lucky because my quality of life is so improved...except for one thing. For about the last year or so, I have been extremely fatigued. Like not just "go to bed early and you'll feel better tomorrow" tired, but "can't keep my eyes open at work, have to go home during lunch and sleep" sort of tired.

I pursued this with several doctors even told them that it was so bad that it was affecting my ability to work and live my daily life--all I got were vitamin B shots and high dose vitamin D. I had been all set to go to the Mayo Clinic because I was so pissed at being bounced from one doctor to another and getting nothing but a plan that I thought was not even beginning to touch the problem.

Long story short, my psychiatrist ordered a large panel of bloodwork for me and it turns out that my endocrine system is out of whack. I plan on sending this bloodwork to my GI doctor and I'm sure he's just going to send me to endocrinology yet again, which is just so frustrating because they are not GI oriented.

I know there are others out there like me but I have found no one who has been able to get a really satisfying action plan for how to deal with these long term side effects.

Can anyone relate to this and if so, have you been able to find a solution that has helped you to feel at least somewhat normal energy wise?

Thyroid levels are normal, but since I don't really have "healthy" baseline levels, your point is a valid one and I've been frustrated about that (I'm 35). I do take depression and anxiety drugs but I've not noticed major fatigue related to them (sometimes the xanax helps me sleep and thus I don't take it during the day if I need to be alert). Yes, I am proudly non-anemic--I say that because while I had active UC and was pretty much constantly bleeding I was severely anemic.

What I do know from the bloodwork is that I'm either low normal or low for a variety of hormones. Even more telling is that I'm making half of the lowest level of normal of the precursor molecule that makes most of these hormones (DHEA). Adrenal insufficiency can be caused by extended steroid use...unfortunately I was on steroids for over a year because that was the only thing that could keep my UC somewhat in check.

It may just be my doctor, but he is highly regarded in town. I just don't understand why given my history and no change with the vitamin B12 and vitamin D, why I have to force doctors to listen to me when I say this is a major problem. I lost a job because of it and I'm terrified of getting a new job and having the same thing happen.

Amanda I know this won't help you but I am wondering why you are still on UC meds with a JPouch, might be a dumb question!

Hope you figure out fatigue.

DMC, that just shows how long it's been since I've been on here, I didn't even notice that I hadn't changed my med regimen! Thanks for pointing it out, gotta get that changed!

I had j pouch surgery almost five years ago. I can relate but my problem is I don't absorb iron so my ferritin levels are always extremely low. I go for iron infusions every three months. I will assume someone checked your ferritn levels. Not just your hemoglobin. I think I need my thyroid checked out too because even with the infusions I still get really tired. My quality of life has greatly improved too thanks to my j pouch but this is the only issue I have. It seems the infusions are going to be a maintanence thing for me.

They are giving you b12 because it is well known that absorption after a j pouch is low.

But anyhow here is a possible, that they may not know.

Old Mike

You might try vitamin B1 saturation, 600mg if you are about 60kg in weight,the idea is to saturate the blood,so the

b1 can transport into the cells.

http://www.ncbi.nlm.nih.gov/pubmed/23379830