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Feb 12, 2009
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Hi everyone,
Glad I came across this forum, it's wealth of info and support.
Here's my story. I'm 57 and my wife and myself are full-time RVers, currently in Benson, AZ.
My first bout with Crohns occurred in 1989. After my first attack, it took almost 8 months to finally get it diagnosed properly. That took a trip to the ER were they found I had a twisted bowel. When they performed surgery, they found the Crohns and removed part of my small intestine where it hooks to the ascending colon. Treatment after that consisted of drinking Questran to help "bind" things up. That was it, no other drugs what so ever. That went on until a few weeks ago.
I went in to my GP and complained about some pains and she put me on a week on antibiotics, and the pain seemed to go away.
Then one day I woke up with the pains again and fought them throughout the day. Later in the evening I got D and nausea. That actually made me feel a bit better. Then about 1AM it struck again, and this time after the attack, we went to the ER in Tucson, AZ.
There I had a CT scan and they said I had a partial bowel obstruction and some inflamation of the small bowel in the area of my previous surgery. I was on IVs for several days, moving up to a liquid, then low fiber diet. I never did get a follow up scan and was released after a week's stay.
The meds they put me on were: Cipro and Flagyl, to fight the infection. I'm done taking these.
I'm still taking the following: Entocort (3mg) three times a day, Pentasa (1000mg) four times a day, Pantorazole (40mg) once a day, and Lactobacillus Acidophilus one tab twice a day.
Basically, my intestinal pains have gone, but I've had a kind of light headedness most days.
Then last week while at our local WalMart, I had a seizure that blacked me out and put me back in the ER for several hours while they ran tests all having to do with my heart. Go figure. I thought it might be do to my meds, but the Dr didn't seem to think so. They all came back negative and I was released.
I went the other day to my GP and I now have appointments to see a GI and a neurologist in the coming weeks.
My hope is that I can some of these meds reduced or have another scan to see just what's going on inside.
I'll post more back when I get some more info.
Rick
 
Hello, Armenian.

Well the RV part of your life sounds pretty nice. I always thought that it would be fun to travel around in one of those.

Sorry to hear about the seizure thing. You may want to have the doctor check your B12 level as your acid blocker can cause it to drop way too low in rare instances. Possibly this could be causing some dizziness problems. It is unlikely, but it never hurts to play it safe.

Welcome to the forum and please share some of your RV adventures.

Dan
 
Howdy Rick,

Diagnosed January 1990 -- when they cut me open. After the Flagyl, Questran, Sulpha and Cipro ran their course, I literally went decades without any sort of medication.

My relapse was last July. Currently on Asacol, Prevacid and a vitamin/supplement regimen. Asacol is similar to Pentasa, and yes, bigger dosages make me dizzy occasionally. I worry a bit about blacking out -- especially driving.

Take care and let us know how it goes.
 
Welcome Armenian!
RVer - yay! We only go 5 long weekends a year (being in NY, that's about how much it doesn't snow here) and we have a hybrid TT. We upgraded from a popup when we discovered how badly I need the potty right ON the campsite, as opposed to 4 or 5 over.

Good luck with your upcoming appointments. Hope you get some answers.
 
Thanks to all who've posted so far. As I said we're in Benson at the Escapees park. We stayed here last winter, too, and to be perfectly honest, if I did have to have an attack, it couldn't have happened in a better place. The out pouring of support to myself and my wife couldn't be beat. One guy even offered to drive our fifth wheel over to the hospital in Tucson so my wife wouldn't have to drive so far.
Did talk with my GP today and said the doses I'm currently on are normal. But, I also have a tingling in my fingers.
A question for you all. After your flare up and going on the meds, did you go off them after a while, taper off but still on some, what? From one scoop of Questran to all that I'm taking now seems almost overkill. Especially since I feel fine in the lower areas.
Take care all,
Rick
 
Can't remember too many details about the Questran, Rick, other than I wasn't on it for very long. The little packets were a pain in the ass, though. Long time ago for me (18 years, LOL). Completely forgot I was on that stuff until you mentioned it.

I'd talk to your doctor about decreasing or eliminating dosages though.
 
hi & welcome, Armenian :)

the theory that your faintness could be caused by B12 deficiency is a strong possibility, particularly as you go on to say that you have tingling too... i really would ask your doctor or nurse to check your B12 level. also, dehydration is something we Crohnies need to keep an eye on as we can lose so much more fluid (and electrolytes) than the next person, which if left unattended can cause dizziness/fainting.
 

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