When does energy come back?

I was hospitalized Jan 3-10 this year, and am newly diagnosed with moderate pancolitis. Was on IV Pred and Delzicol in the hospital. When I went home I was on 40 mg prednisone and Apriso. Doctor had me tapering to 30 mg after a week. I was unable to even fix my own food when I first got home I was so weak. Once I tapered to the 30 mg, I started having 7-8 bm's again after getting it down to 2 or 3. Two weeks post hospital the doctor switched me to balsalazide (3x a day) and Uceris. (1x a day) I now have 1-2 soft bm's a day, and have not been having any bleeding. Occasionally I will have it start out with d, but it doesn't stay that way. I have been doing more housework lately as I am able. Friday this last week I went to the grocery store with my husband, and then to lunch. We planned to go to Costco afterwards. I could tell I was getting tired, and planned to use the electric cart once we got there. They were all in use, so I shopped without. I was so exhausted afterwards, and have been feeling very poorly since. After I overdo it like that, I have issues with what feels like my blood sugar. I can feel like it is low even after having eaten, and my back hurts-but not in the tight or pulled a muscle way. I don't think I am gaining much weight back, though I am trying to eat very well. Any thoughts? Is this just normal? It feels like I will never be able to go for a walk for exercise again when daily activities get me like this. I don't work outside the home, but I have three children, home school them, and do some bookkeeping for my husband's business.

No blood work since the hospital. They said I wasn't anemic when I was tested there. I never did see the typical numbers I am used to that measure iron on my labs, so I am not sure what they determine that with?

Fatigue and pain is my worst enemy with this illness. All my blood work is normal, and i'm still really fatigued. It's the worst during a flare, but I have had fatigue on and off even in remission. I never got back to baseline energy levels personally, but i think others do. I think it's from having a chronic illness.

Hi, the kind of exhaustion you describe is the kind I have too. When my back hurts I know I need to sleep. I can't go to Costco either without feeling faint.

How much longer will you stay on Uceris?

It usually takes me a couple of months to recover from a flare. Although the flare itself might be in check already, my whole system needs time. I'm still fatigue, probably because I'm on azathioprine but I can do stuff again. I used to sit on the floor folding my laundry and couldn't get up by myself.

I think it really helps to push through and try to motivate yourself to not be lazy and lay around. That alone always gave me energy, even when my hemoglobin was 6.8. I'd try to go to the gym and exercise lightly just to get some mental energy and motivation back...

Exactly what I just mentioned, push through and take it easy though. If you get mentally motivated and really try your best to get going it helps a lot. Feeling sorry for yourself only makes it worse, I had a week or so of that too. My GI actually saw me in the gym and kicked me out saying he didn't want me to drop dead in front of him.

Obviously, I had 2 blood transfusions shortly after and had to have surgery, so couldn't live on that forever and the low blood was 1 reason for surgery but at the time I just tried to push through, I made it to work every day 7-5 and then tried to get to the gym twice a week at least. Not feeling like you're on your death bed does wonders for your health even if it's crap.

Ever been tested for lupus? Chronic fatigue can sometimes mean another autoimmune condition like it.

How about checking your vitamin b, b12 (folite) and d levels? Also common deficiencies that plague us (in addition to anemia). They can cause fatigue if sufficiently low.

Your GP should be able to order a blood test for iron, and the various vitamins: b, b12, and d. Any of those are easy to supplement in your diet if low or out of range.

I'm not sure if you know much about lupus. The spoons theory is the best description. I could be entirely wrong but it's just another possibility to rule out. /butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Nobody knows the cause but unlikely I'd wager.

Bull101 said...
Exactly what I just mentioned, push through and take it easy though. If you get mentally motivated and really try your best to get going it helps a lot. Feeling sorry for yourself only makes it worse, I had a week or so of that too. My GI actually saw me in the gym and kicked me out saying he didn't want me to drop dead in front of him.

Obviously, I had 2 blood transfusions shortly after and had to have surgery, so couldn't live on that forever and the low blood was 1 reason for surgery but at the time I just tried to push through, I made it to work every day 7-5 and then tried to get to the gym twice a week at least. Not feeling like you're on your death bed does wonders for your health even if it's crap.

Yeah, this is some dubious stuff right here. And what are the odds of bumping into your GI at a gym, seriously. Was it a hospital one, or something?

Anyway I had a haemoglobin of 7 and could not have exercised at the gym without physically collapsing. In fact I struggled to keep up with my 70-year-old mum when walking. It wasn't my mental attitude that was at fault; it was my body. Nowadays I have to slow down a bit to enable my mum to keep up with me.

NiceCupOfTea said...

Bull101 said...
Exactly what I just mentioned, push through and take it easy though. If you get mentally motivated and really try your best to get going it helps a lot. Feeling sorry for yourself only makes it worse, I had a week or so of that too. My GI actually saw me in the gym and kicked me out saying he didn't want me to drop dead in front of him.

Obviously, I had 2 blood transfusions shortly after and had to have surgery, so couldn't live on that forever and the low blood was 1 reason for surgery but at the time I just tried to push through, I made it to work every day 7-5 and then tried to get to the gym twice a week at least. Not feeling like you're on your death bed does wonders for your health even if it's crap.

Yeah, this is some dubious stuff right here. And what are the odds of bumping into your GI at a gym, seriously. Was it a hospital one, or something?

Anyway I had a haemoglobin of 7 and could not have exercised at the gym without physically collapsing. In fact I struggled to keep up with my 70-year-old mum when walking. It wasn't my mental attitude that was at fault; it was my body. Nowadays I have to slow down a bit to enable my mum to keep up with me.

Thank you. I thought I was crazy.