Losing Hope

Hello. I have "early onset Crohn's" according to my GI doctor. I have a lot of other things going on with me that are driving me crazy. Horrible anxiety, constant shaking, pain in my abdominal region has just started up again as of 2 weeks ago, it's so hard for me to keep up with my Pentasa since I started my new full time job. It's so awkward and embarassing to sit in a room full of people and start popping pills. My body is shaking all the time, my body feels like it's vibrating or something, in my legs and my feet, but they aren't moving. I noticed today i have unusually dark veins in my underarms and along my arm and it freaks me out a little because I'm not used to seeing them so dark. I have headaches every day, and if I don't keep up with my meds they turn into migraines. I take so many meds. I take 1000mg of Pentasa every 6 hours, Klonopin every 8 hours, tylenol every 6 hours as needed, I usually take 2 pills at least once during the day, I take 2 tylenol PMs before bed or else I can't sleep, and I take Tramadol as needed when I have a horrible migraine.

My doctor has yet to return my phone calls, or to call me in general about my Capsule Endoscopy, he knows I have inflamation in my stomach and terminal ileum. I have an appointment with a neurologist on the 22nd. My rheumatologist basically wrote on his diagnosis chart "connective tissue disease" but told me there was nothing I had he could treat me for. Then I found out 2 weeks ago I have mononucleosis and I could have had it for months, along with acute sinusitis. Nobody has really been able to help me or tell me anything. Bouncing back and forth between "oh you have early onset crohn's" to "oh you might have lupus" or "you might have lyme disease" is making me so frustrated. I have no news and the waiting is killing me. I feel like I have something very wrong with me, as I just started having this weird thing where every now and then I will have this little tiny white "spark" if you will in my vision, like a little tiny dot. But not like a normal floater that you usually get in your eye.

I'm sorry if this is a wrong spot to put this in or anything. I just don't know what to do anymore. Everybody around me keeps saying oh you will be fine, but I don't feel like I will be. I don't know.

it sounds really tough, maybe try to take a anxiety pill like clonasapam, they work quik. I take 1mg when I am getting a bit anxious. I had to get really sick for them to figure me out, that or I would have died. this was in 1970-71. I went from a horse jockey(just starting career) to bedridden within 2 months at the ripe old age of 20. stayed that way for a year, finally total blockage and removal of 8ft of sma. bowel, then remission for 19years, then broke my jaw in racing accident, twice within 6weeks, surgery both times, when on the second time they wired my jaw shut, I had to have resection within 6months.

AG

I agree 100% with Sniper! The constant anxiety is not good for your Crohns. There is nothing you can do until they get all the tests ran, so just be gentle with yourself in the time being. Gentle hugs!

Adam, I switched from taking my Pentasa every 4 hours to twice a day. Mostly because I WASN'T taking it midday or afternoon. Either I'd forget to bring it to work, or whatever. My DR was totally cool with me splitting the whole dose btwn morning and night.

Thanks everyone. It's just hard to feel positive lately. My head is always aching, my heart is pounding, my stomach hurts and my body is just twitching away like crazy.

And I take two 500mg capsules of Pentasa every 6 hours...

Adam, I just wanted to second what Kazbern said too. I take the sister med to Pentasa called Asacol and I kept forgetting the mid day dose also, so now I take 1/2 in the morning and the other half at bedtime. Hope that helps up to remember your meds.

I too suffer with anxiety and take Xanax when needed on those bad days. If you use it like that you don't have to worry about the dependency issues. Hugs!