New user ^^

[Faye11]

Hello! I'm Faye, 21.

I've had Crohn's since i was 14. I might say it screwed up my life. Hospitalised three times in 2 years, I couldn't finish high school and having a new Principal at my senior year, I got kicked out for missing too many days.

For 5 years i've been healthy on remicade, minus continuous stomach pain, headaches and migraines, joint pain and a "constant stuffy nose".

I forgot to take my RDV for two months straight this summer, for remicade. I've been switched doctors two times and my latest one wanted me to stop taking remicade and do a Colonoscopy. I said fine... but my new doctor didn't believe me that Golitely for me just doesn't work, I can't stop puking it out. So we had to reschedule and he kept at it many many times. He rescheduled so often that now I'm really sick again. Can't stay more than 20-30 minutes standing, hurt like I used to hurt and I just recently started a business.

I come here seeking some help, if anyone knows how to have energy (my body is in total fatigue) so I can work at least 8 hours a day? I can deal with the pain, but the lack of energy is making me late in everything i have to do. I seek my own clients and if i can't do that, can't pay rent.

How do you deal with work and Crohn's symptoms?

 

[crazycanuck]

God Im sorry I wish I had answers for you but luckily the extreme fatigue has eluded me. I really hope you get some relief soon and good luck with the business. Welcome to the forums.

 

[Rebecca85]

That's something I have been struggling with. The doctor ran a few tests on me (diabetes, thyroid, iron, b12, folate), you might want to ask your doc to do the same. My iron stores were low, and iron supplements have helped somewhat, but the latest theory is that it is from stress. So I am going to try part time work for a while, see how it goes. Obviously that isn't an option for you, but is there any way you can adjust at work to reduce stress? Maybe hiring an assistant? Just throwing ideaa out there!

 

[Sandy]

Hi Faye,

I sympathize with you -- I sometimes feel that Crohn's screwed up my life too. I got it at 9, but fortunately it was never as bad as you describe. I can't believe you were kicked out of school for being sick???? That is criminal. They should have HELPED you.

It sounds like you need a different doctor, someone who can help you find a prep that will work for you.

I think Crohn's just saps energy, especially if it's active. Maybe you could get blood work done, to see if there's any supplements that might help, as Rebecca said. I hope you can find help!

Best wishes,

Sandy

Dx 1963
Now on:
Asacol
Azathioprine
Rowasa
Budesonide (sprinkled lightly in Rowasa, shaken, not stirred)
Folic acid

 

[glum chump]

Hi Faye

Welcome to the forum! Fatigue is such a huge part of this disease for me. I agree with Rebecca and Sandy that you should get blood work done to see where your iron levels are at. You might also want to get them to check your B12 levels as well. Iron and B12 shots really helped to get some of my fatigue under control.

Good luck!

 

[Jennjenn]

Welcome

I cannot help with the working and fatigue part. I am on disability and am not able to work at the moment because of everything that comes with Crohns. I go for iron infusions and B12 infusions also but the energy level is still not where I would like it to be. My doctor says it takes time to be built up again, since I was almost depleted of it when I got referred to her. I hope that you start to gain back some energy soon and feelo well

 

[Astra]

Hi Faye
and welcome

I'm sorry, but fatigue has eluded me too! I have no answers!
I work full time and all I can do is rest when I get home, go to bed early and get plenty of undisturbed sleep.
The only time I had tons of energy was on Prednisolone, I could move mountains!
Good idea to get your bloods checked tho
good luck
Joan xxx

 

[carrollco]

Hi, Faye: I hear you and had horrible fatique before I was finally diagnosed. I kept on working, dragging myself out of bed, thinking it was all in my head for almost four years. (irritable bowel, stress, etc.)

I just wanted to say that I am/was REALLY anemic and getting the right vitamins was so important to my quality of life. After my first dose by that afternoon I felt so much better. While I'm fighing the lousy pain of this disease right now, I'm not fatiqued. Just pissed that after fighting adversity all my life it took Crohn's to finally bring me down.

However, once I get the pain under control, watch out. I never ever give up.

 

[Faye11]

Thanks to everyone who has replied. I completely forgot about the forum until the "update" newsletter came in. I found ways to deal with fatigue which are not the most healthy but worked until I got my remicade back on.

I'm fine now, looking for natural ways to overcome Crohn's, which I have found and will go on it soon. As I wanted to switch to raw food, I fell on this book called Self Healing: Colitis and Crohn's by David Klein, Ph.D and it makes total sense to me. However, I don't really have the resources to full rest so I'm still wondering about when to start it. Oh well, besides being horribly smelly around the house, my symptoms are okay XD

 

[xJillx]

Thanks for the update. So, you are back on Remicade? You say your symptoms are okay; are you still having trouble?