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Crohn's Disease Forum

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Nov 22, 2010
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Hi. I have had IBS since my 20's and stomach ulcers, actually called an ambulance once the pain was so bad. A year ago last July was the first time I was diagnosed with Crohn's, then they said no, then in January an ulcer in my colon burst and I lost about 2 units of blood. They said again it was Crohn's and Ulcerative Colitis. They put me on steroids that time and I felt great while I was on them, but gained back 40 pounds of the 67 I had worked so hard to lose. It was very depressing. I only agreed to stay on it 6 weeks but it was about 8 before they got me off it. It took me about 3-4 months to get my strength back. I was on Apriso and Carafate liquid.

I have never taken the pain meds for the Crohn's but for back and hip problems. I fell down the stairs 44 years ago when I was 7 months pregnant. I got arthritis in my upper and lower back, spinal stenosis.

When this last episode came on, we were getting ready to go on a cruise so I started taking the Apriso to ward it off. It worked until Nov. 4th when we were in the Caribbean with Hurricane Tomas. I got severe headaches and all week had an ear infection. I'd also had a sinus infection that didn't go away after antibiotics 3 months ago. I never take pain pills during the day normally, but had to for the headaches. I ran out of Apriso when I got home and went downhill fast. I started bleeding again a couple weeks ago with horrid pain in my abdomen. I've eaten very little since everything turns the cramps on and I'm running. I've been so weak I either am sitting or in bed.

I went back to my original GI doctor and he did another colonoscopy in May when I was feeling pretty well. (He was on vacation when I got so sick the first time so had to switch.) He said it was definitely Crohn's and Ulcerative Colitis, but not a severe case. It's fairly unusual for people 64/65 to get it. I had a bleeding ulcer in my stomach about 3 or 4 years ago and my colon still looked fine at that point. My chiropractor recommended a natural supplement called Okra Pepsin E3 and a health food store recommended something called Intestinu. Both are supposed to coat your intestines.

Right now my worst problem is a bad sore on my leg. It's like a boil, very red, raised and very painful. Can't touch it at all. I'm going to my primary dr. in the morning to see if there's anything to do for that. So to sum up, I have several problems with arthritis, fibromalgia, headaches, sores in my mouth and body, sinus problems, sore throat. Right now I get very sick if I eat anything sweet so I'm sticking to very bland foods like crackers, white toast, yogurt and tea. I'm hoping to find out about these sores on here if anyone has them or knows about them.
Thanks,
Ragtop
 
Ragtop: Glad you're going to see the doc about those sores. They can be related to Crohn's, but either way, it doesn't sound pleasant at all. Happy to have you join the group, it is really great and a fabulous font of CD wisdom and experience.

Good luck at the doc and please keep us updated!
 
Thank you Cat. I have a lot of reading to do on here and lots to learn. I'll do it as I'm able to concentrate. If I could get rid of all these side problems I could deal with the rest easier. It's overwhelming sometimes, especially when I'm nearly 66.
 
Eyes, I thought one or both of us was going to die that day. Didn't think I'd ever catch my breath again.
 
Problem

For some reason, I can't get in to see what responses people are sending me. Once I get it straightened out, I will answer.
 
For some reason, I can't get in to see what responses people are sending me. Once I get it straightened out, I will answer.

hi Ragtop - i have emailed you :) hope everything's ok for you regarding using the forum now... any more probs, just shout! and welcome! :)
 
Sores

I went to the doctor this morning and he said the big sore above my ankle is a Pyoderma Gangrenosum or (less likely) Erythema Nodosum. He put me on a 10 day regime of Prednesone (40 mg) down to 10 mg the last day). He said it could open and ulcerate so he made an appointment for a dermatologist too. I'm glad he squeezed me it because it's very hard and purple on top and about 3-4 inches wide.
 
Ouch!.....yes, that sounds like either the PG or EN...hope it is the latter!.....

I take it you and Thunder are related???.....

Good luck with everything - there is a ton of info to go through here!
 
Thanks. Yes, Thunder is my first and only son. He found this forum for me and I'm trying hard to learn how to use it.
 
Yup, having some problems with the links my mom is getting in her emails not working, saying you don't have permission to view that link. Odd, I never have seen it before until today, I get it on another forum, almost like no confirmation or something on the user email. really odd.

Thanks. Yes, Thunder is my first and only son. He found this forum for me and I'm trying hard to learn how to use it.
 
Welcome Ragtop!! Glad he got you to join as well!! My son takes okra pepsin also. Whether any of his supps are really helping, I don't know since he also takes 6mp and asacol but he has had a very good year!! I hope you get that place on your leg figured out. Good luck!!
 
I tried Asacol but it didn't seem to help much. I forgot to mention they gave me Dyciclamine for the cramps. That helps some since it depresses your nervous system. When you are running every 5 - 10 minutes, it's worth having. They started me on 40 mg of prednesone today. I was feeling a little better but then I tried spaghetti for supper and have been in a lot of pain ever since. Guess I'm not ready to try anything other than bland food yet. I haven't heard of M6. I'll look into that one. There are a lot of medicines on here I need to find out about. I'm going to make a list for my next dr. visit. Now that I'm on Medicare, the costs are outrageous! My copay for Apriso went from $50 for 3 months taking 8 a day to $377 for 3 months taking 4 a day. The anti-inflammatory he wanted to try me on for 30 days was $500 for my copay. I have to keep telling them to keep it.It would be nice to find natural supplements that would work like the Okra Pepsin and Intestinu. They're not cheap but they're not as expensive as the drugs and they don't have side effects.
 

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