extreme fatigue with ulcerative colitis

Just got out of an eight day hospital stay due to a severe flare. I had to have multiple blood transfusions and lost over 20 pounds in weight. Currently i am on 9mg entocort, 4.2 mg of lialda, remicade (just had second infusion this morning). I also take iron supplements and probiotics. As of now my condition is manageable but the one major problem i am having is serious fatigue. At first i thought it was due to anemia, or low blood count but the blood work i had done a few days ago show i am right in the normal range along with my b12 levels as well. I have put on a healthy amount of weight since leaving the hospital and have been eating very healthy. I've read that remicade can cause fatigue also, but i was experiencing fatigue before i had my first infusion. I don't know if this is something that just comes with the disease or if there's anything else i could due to help with this because i am having a hard time working a measly 4 hour shift at work. I would very much appreciate and suggestions from people dealing with this similar problem because i need to get back to full time work asap to cover this costly disease. I also wanted to ask if anyone has heard of using adderall for this, a fellow co-worker told me he was prescribed adderall for his fibromyalgia and that it helps him tremendously. However i wasn't sure if adderall is a no no for ulcerative colitis. Again anyone with knowledge on this it would greatly be appreciated.



diagnosed may, 2012
currently easing out of second major flare
meds. include 9mg entocort, 4.2mg lialda, remicade (2 infusion)
supplements include iron and probiotics

moose I am *amazed* you are back at work already at all! Don't be so hard on yourself. Being in the hospital can really sap your strength. How are your symptoms now? Are you still having bleeding? How many BMs per day?

I am still having blood in my stools and some urgency not bad though. I had to get back to work to start paying all the bills i accumulated while in the hospital. I normally work full time but i barely made it through a 4 hour shift at work yesterday. I guess i am just looking for ways others have coped with fatigue whether it be from supplements, nutrtion, or presrcibed medicine. thank you for the help

Ah the fatigue. I battle it daily. I get tired of hearing myself say "I'm tired."

Try to rest as much as you can. I did a week in the hospital last November and I was definitely zapped for a while.

Sherry...I'll take one of those magic pills! I watch my 7 year old run around constantly and think....If he could just give me a teeny bit of that energy I would be good to go!

i'm a total zombie... ALL the time. i'm very anemic though, but i also think it's just from the disease. my
b-12 injections do nothing for my energy. luckily, i don't have to work, but if i did, i'd be fired so quickly from falling asleep on the job or making careless mistakes.

When you got your transfusion, was your hemoglobin in the normal range or did you just get brought to a stable non threatening level? My doctor said it could take up to three months before returning to normal levels. I would imagine you'd feel tired until those levels are back up to normal

What is the benefit to iron supplementation when your hemoglobin is down?

I would ask your doctor to check your EBV (ebstein barr virus) level for this mono causing virus. High levels may go hand in hand with UC , chronic fatigue syndrome. There are drugs out there for this virus that may help some people, although they did not help me.
My fatigue is ridiculous!!! I have high EBV levels that were found more or less by accident.

Adderal is a stimulant and stimulants speed everything up in your system including your GI tract so if I ever started it I would do a trial at home before I took it at work!

Good luck. Fatigue is awful and the least understood problem for many of us!

When I first came down with UC I got extremely sick because it took months to get properly diagnosed, and by that time I had lost probably 40 lbs and a lot of blood. I was in the hospital for about 2 weeks, and even after my stool was formed again, it took months before I felt better. I was off work for several months, and even going for a walk I felt like an old man doddling along.

As long as you feel your doctor(s) are on top of your care and there are no complicating factors in your recovery, be patient and expect to feel like c_rap for a while before your energy level comes back, and that is assuming your U.C. stays under control.

i'll add to the crap pile - as long as you have this nasty sshhitt, you'll probaly be tired - sorry, just a fact -

i don't know if getting a bag solves that or not -

as your body heals you will feel better -

if anyone has any positive experience with fatigue reduction, maybe all of us can share notes back to our Doc's. why does Vicodin help? does it mask the fatigue? is there a cocktail of drugs that work? I know as long as I have UC I can't eliminate symptoms. but I will settle for some abatement techniques.

Steroids help with fatigue.

I felt like a superstar after I got two units of blood.

I was exhausted the night of and day after Remicade infusions - I knew those were going to be lost days.

My longterm fatigue strategy is to pace myself. I have overdone it on so many good days. I'm slowly and stubbornly learning I just can't do as much.

If I have to do something big after work, like DS's orchestra concerts, I've had success with 5 Hour Energy instead of a soda. I haven't researched the affect on UC at all, but I've stayed awake...

Post Edited (Tornado6) : 3/17/2013 6:44:29 PM (GMT-6)