Is it normal to be exhausted with Crohn's Disease

[tiloah]

When I was in high school I didn't really eat food. I was also on the track team, doing sprints, pole vault (well, attempting it anyway), and discus. We had practice for at least an hour every day and I was exhausted. I finally came to the realization that I couldn't live without energy anymore. I started eating again, and I quit track. But I never really gained it back (I also didn't sleep great).

Since college, I have been sleeping, eating, doing whatever I can to get more energy. I know I wear out more quickly than my peers, and I need more sleep than them. I can't do as much as they can. When I finally got my Crohn's diagnosis I thought, "Wahoo, I finally know why I am so tired all the time." My doc told me when I went on the Humira I would get a lot more energy, because it was the TNF-A that was making me tired.

Well, I've been on Humira for a year or two now, and I don't really feel different. I'm not sure if I've ever been in remission (or maybe I've never been in a flare). But I was just wondering if it ever gets better? Am I doomed to just be exhausted all the time? Is it a self fulfilling prophecy? Is there anything that works for you to give yourself more energy?

 

[Liam]

Hi diesanduhr, it all depends and I can't really give a definitive answer. But I would say it's likely that things will improve in time. I would suggest trying to find a diet that suits you, also see what drinks suit you.

I don't do alcohol at all and I don't really do fizzy drinks...they equal pain.

With Crohn's it seems it's sometimes a good day and sometimes not so good and sometime it's bad.

But, I would say once you have tried various meds, and got a good diet going things should improve. Once I had done the above things improved a lot for me...it just so happened my diet was very restrictive.

Liam

 

[Astra]

Hi Diesanduhr
and welcome

Remission for me is no inflammation, flaring is inflammation.
The body initiates inflammation then sends out a response to fight it, so it's working over time, double time = fatigue!
When this happened to me, I ignored it, it escalated, I hit the deck, and was in hospital for a week with obstruction. I was on 50mg of Prednisolone, this blitzed the inflamm, but more importantly gave me tons of energy and my appetite back.
IMO diet alone won't do diddly squat if you have inflammation, but certainly helps with D, C and gas and bloat, nausea and pain, it's a process of elimination.
So have you got inflammation? Maybe the humira has stopped working?
It can be a self fulfilling prophecy, a positive attitude certainly helps, so does staying stress free and rest is crucial, listen to your body, abuse it and you will pay!
Things will get better, it's all about self management, there are loads of us in remission ie no inflammation.
glad you found us
lotsa luv
Joan xxx

 

[tiloah]

Thanks for your responses guys. I have no idea about my inflammation. We've always gone by subjective measures, and I'm not sure that's the best idea. I was going to ask about my blood tests (and what they show vs. when I started treatment), but they canceled on me and I'm rescheduled for Friday (it always takes a month to get in).

I think I'm just cranky and tired of being tired (I guess I should have put this in the venting forum). I have definitely been pushing my limitations recently and have been paying the price. I know the worst it ever was was right after I tapered off of steroids... UGH. But I was hoping you might have some specific things you do that help you? Don't know what that might be, but I'm open to any suggestions.

 

[dustydshook]

Crohnies don't absorb vitamins as well as other ppl from their food. Especially B12 which gives you your energy. So when was the last time you had your blood test for vitamin levels. Also since our bodies are constantly trying to heal themselves we need to eat more calories than others also to keep up. Have you tried adding some ensure or boost to your diet. It will add calories plus vitamins. Maybe you should talk to a diatictian, and ask your doc to check your vitamin levels. You may need B12 shots or you can get the sublinqual pills which disolve under your tongue instead of in your gut.

 

[ameslouise]

I agree with Dusty - check vitamin and nutrient levels, iron levels, etc etc. Sometimes RDA's for vitamins have to be adjusted due to low absorbtion.

While we Crohnie's are subject to exhaustion more than the general population, we can try to do as much as possible to combat it!

Good luck - hope you find your energy soon! - Amy