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Tired all the time!!!

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Posted 7/4/2008 2:53 PM (GMT 0)
 

This has probably been a topic before but I couldn't find anything on it.

I was diagnosed with UC in May 2007 and spent 1 week in hospital.  Since then I have been on Prednisone off and on for the last year.  Tried Asacol but didnt work, Imuran but it made be violently ill, Pentasa which is working somewhat, and just had my 2nd infusion of Remicade which seems to be working...

However, I am tired all the time.  I work, have kids and a very busy life and it gets to the point where at nite I just collapse.  I sleep so sound that I dont hear anything, even the kids getting up at nite.  In the morning I still wake up tired and have a hard time making it through the day.  I usually nap whenever I can (which isnt often enough) on weekends.

Does anyone know is this the UC itself, the Remicade or combination of both.

Posted 7/4/2008 4:53 PM (GMT 0)
Exhaustion is one of the features of UC, unfortunately. If the Remicade works, you will gradually see your energy level improving, but it may or may not get back to your pre-UC level. Napping when you can is the best plan.
Posted 7/4/2008 8:21 PM (GMT 0)
I just woke up from 1 1/2 hours of napping. This is not unusual for me. Unfortunately you sound way too busy to ever get a good nap. I think the dehydration and loss of nutrients from diarrhea are a huge factor in stamina. All I can say is, try to squeeze in sleep whenever and wherever you can. If you're not already avoiding caffeine and alcohol, that might help too. (Caffeine makes you crash later and alcohol... well everyone knows how tired alcohol can make you.)
Posted 7/4/2008 9:06 PM (GMT 0)
try avoiding sugars...it may or may not help.

NBT
Posted 7/4/2008 9:11 PM (GMT 0)
I have complained of exhaustion for at least six months now. I have fallen asleep sitting up at my desk at work like 6 times this year. My doc tells me that chronic inflammation does that, and that my body is "run down" from this disease. My primary doc gave me some samples of a medication called "Provigil" that I take occasionaly and it does help. Unfortunately I think it is something we have to get used to. I wish I could tell ya different.
Posted 7/5/2008 1:20 PM (GMT 0)
 

Thanx for the replies...now I know that I am "normal".  I am trying to cut back on some of the running around and trying to squeeze in naps when I can.  The kids have been great lately  and understanding when I say I just need to lie down for a little while.

The Remicade is definatlely working and hopefully it gets everything under control so I can get somewhat back to a normal life.

Thanx again.

K

Posted 7/5/2008 3:18 PM (GMT 0)
My GI told me the same thing as Angel's. It's just another trademark of UC. I sometimes think that the fatigue is worse than the bloody BM's. I can sleep 10 hours at night and still need a two-hour nap the next day.
Another thing to check is if your blood levels (B12, hemoglobin) are in the normal range. However, you can still be extremely fatigued even if your blood is okay.
Posted 7/6/2008 12:41 AM (GMT 0)
Yup - fatigue is a "normal" UC thing. Makes me crazy! I've spent most of this long weekend napping/sleeping and I'm still exhausted.

A good multivitamin helps a bit as well. As soon as I'm off of the pred, I'm going to ask my doc to run some bloodwork and check all of these vitamins...
Posted 7/10/2008 2:29 PM (GMT 0)
I too am always tired.I've got two young kids (3&5 year old boys). The fatigue is getting worse. I'm short tempered and hate feeling this way. I've been dealing with UC since I had my youngest. I want my life back. I agree, the bleeding is bad, but the fatigue is worse. Thanks for sharing, neither you or me are alone in that boat. In fact, I think it is a ship with a bunch of us on it all wanting to take a nap.
Posted 7/10/2008 8:05 PM (GMT 0)
I'm always tired, too.  I may nap during the day, then when it's bedtime I'm not tired and end up taking Tylenol PM just to get to sleep so I'm not up until 4am!  Unfortunately for me, my hemoglobin is also on the low side and I have to have another blood transfusion tomorrow.  I have to see my hematologist on Monday so we can try to figure out why it keeps dropping.  I'm just out of a flare (no bleeding) and am trying once again to taper off of Prednisone.

Posted 7/13/2008 5:17 AM (GMT 0)
I too am always tired.

Have you checked your hemoglobin levels?

I had a really bad flare recently which caused a lot of bleeding. I was to the point where I couldn't stand long enough to take a shower, and even after I showered I had to practically take a nap. I am severely anemic now: my hemo levels were at a 7 when I had blood taken in May. They should be at a 16 or so for my age and everything. The thing is, when my cousin's levels were one point higher than mine are right now she was in the hospital getting a transfusion(she has Crohn's)... Weird. I haven't even landed in the hospital yet.
Posted 7/15/2008 10:20 PM (GMT 0)
I was diagnosed with UC after a horrific c diff infection a couple of years ago. I started taking Asacol right after I got over the infection. Since then I've been tired a lot, but it's been getting progressively worse. I've moved around a lot since my original diagnosis, so I haven't had a consistent doctor following my progress until recently. My new GI doc had some blood tests run and found out I was allergic to the medicine in Asacol (mesalamine). Since I've been tapering off the Asacol, I've felt my energy slowly returning, although nowhere near to my pre-diagnosis levels. I'm hopeful that I can stay off the Asacol without any bad flare-ups.
Posted 7/16/2008 1:17 AM (GMT 0)
most of us lose blood when we go to the toilet so there is a chance that u are enemic. plus if u think about it your immune system is fighting thsi disease 24/7 so it takes a lot out of u i would recomed taking vitiman and iron supplements not iron supplement alne becasue they can cause constipation but the multi vits u get with extra iron added to them try and get 9 hours of sleep a night dont sleep to much because this can make u more tired. plus if u are feeling down with ur condition u might be depressed which can make u feel tired. the best of luck xxx
Posted 7/17/2008 3:32 PM (GMT 0)
Oh, yeah, fatigue is part of the UC equation, as Judilyn writes above. We've done several threads on it in past yrs. I'm one who has it with bloods testing perfectly fine. The Centrum vitamins seem to give me a bit more energy, though, you might check them out (A-Z formula). Another possibility is Forvia, vitamins especially compounded for IBD patients. Hang in there, nap when you can, never feel guilty! / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily for maintenance of remission)

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