Crohn's disease info.

Ack. The more tests they run and the more I read, the more I think it's Crohn's. I'm waiting for a call-back to schedule swallowing the camera pill, but meanwhile can anyone tell me your personal experiences with Crohn's, and particularly what treatments are out there?

History- until recently this was a once-or-twice a year thing where, seemingly with no specific trigger, my abdominal muscles would just go into this freakout spasm that would result in my eventually vomiting and pooping like mad, but it's like the spasming happens first and that leads to the barfing, etc.- I don't get nauseaous per se, I just barf because after a few hours of intense spasming that's what happens. Ditto poop. Anyway, it's begun happening increasingly more often so I'm more familiar with the details- it seems to start with spasm in the lower right area of my gut and move up and out, as if it's starting where the small intestine dumps into the large. I've had colonoscopy, endoscopy, and ultrasound- I have a polyp on my gall bladder and diverticulosis, neither of which really explain the absolutely screaming, intense pain this gut thing causes. I also have RLS, and when I did some research on that I came up with a whole slew of info. on an apparent connectionn between RLS and Crohn's- this after Jim had said several times that it seems to him my gut spasms much the same way my legs do with the RLS only on a much more grand scale.

What am I in store for?

Oh, I wish I could help you. Unfortunatly, I don't know anything about it. I'll be praying though. Looking forward to hearing what the tests say.

Ahhhh. I know just the person for you to talk to. An old friend of yours.


www.pdsa.org/forum/6-general-itp-discussion/12189-ibd-ulcerative-colitis.html

It does kind of sound like Chrohns. It has similar symptoms as the UC that I have but I don't have the vomiting or pain. I'm trying to get mine under control but so far I'm only at the beginning of my journey. Good luck with yours.

Gary, are you the same Gary who was a very active member of the board about ten years ago? I remember you giving me quite a bit of useful advice at the time as I had just come out of a ten - fifteen year remission.

Lib - I just caught the RLS part. I just skimmed a few days ago and didn't see that.

I had RLS until about a year ago. It wasn't just my legs though, it was my entire body. I had it for two years and was not falling asleep until 3 or 4 in the morning - horrible since I have to get up for work at 7. Both my Rheumatologist and Neurologist said it was Lupus related and they couldn't do anything about it. I begged for sleep meds like Ambien, but they wouldn't prescribe it. I threatened to hit myself over the head with a brick...they didn't budge.

Okay, I do have a point here. I had an office visit and I will usually ask for certain labs to be run if I haven't had them for a while. I asked for Ferritin for the heck of it. It came back at 12 which is pretty low. My Rheumatologist didn't want to treat because it hadn't affected my red cells yet. My thought is, why wait for that to happen? It's stupid! I bought some Ferrous Sulfate and started taking it, then began to research symptoms of low Ferritin. I kept coming up with RLS for a Ferritin level under 50. I didn't really believe that was my problem, but two weeks after starting the iron, the RLS stopped. I haven't had it since. I am a strong believer in coincidence, but this event was not.

So, I would suggest having your Ferritin checked just for the heck of it. I suffered for two years when the solution was simple. Pity we have to figure things out on our own so much. There are a lot of articles about that in Neurology - you'd think the Neurologist would have picked up on it. Nah.

Christine - are you Christine V from the old board?

No, I am cm from the last board. I have hung around this board for years.....and years....and years! and what a wonderful help it has been to me
Today at the "spa" I met a newly diagnosed ITPer and reccommended this board. I think she felt better finding someone else with the disorder, (especially as I was originally diagnosed in '78-'79), also this board was here.
May surplus platelets out there find there way to us!!!!!! Christine

Yes. I am the garylouisville who was on the board and quite active several years ago. I'm glad I could be of some help to you back then. Life caught up with me and I really haven't had the time that I used to have. At the time my wife was an ITP board "widow" and then I had a couple of kids who are now 6 and 4. Between all of that and buying my own business I decided to retire, especially since my ITP has been under control for quite a long time now. Since I recently came down with a "new" autoimmune disease I thought I would post to see if I could get any info to help me with my current problem. Unfortunately my new disease looks like it's going to be a lot harder for me to find a solution to than the ITP was.

Hi Gary and Sandi. Good to see you both on here especially Gary who we don't see too often. I'm not on here too much myself. Sarah is now 23 almost 24 and teaching third grade and loves it although she is working very hard. She is still ITP free.
I am sorry you hear you have another autoimmune disorder Gary. I'll look to see what it is. I hope you can get it figured out and find out what can help. Take care of yourself. You have two girls right? I remember when you had your second child. 4 years really goes by fast.
Sandi, take care too. Talk to you soon.

Yes, I have two girls now 6 and 4. Keeps me busy. It was nice to hear from you. I'm glad Sarah is doing well. My 6 year old has a young teacher and I am quite impressed with her. The first time I saw her my thoughts were, "gosh she's young!" but she is one of the better teachers I have ever seen. By the way, my 4 year old is named Sarah. Take care.