Recently Diagnosed

[CrohnsCrony]

I was diagnosed over the phone with a stomach ulcer in November 2011, which turned into diarrhea and dehydration until I ended up spending the week of Christmas in the hospital. I found out then about the Crohn's, which was quite the shock. I rested at home for 6 weeks with a hand-full of medications before returning to my full time job. I have been taking just Pentasa, but couldn't take feeling tired & weak and my hair falling out, so my doctor switched me to Asacol just today. My tummy has been relatively ok, but dizzyness has been the biggest issue I have had since the hospital. I am blessed with wonderfully supportive friends and family, but I am also comforted by the fact that there is a lot of people out there that know exactly what I am going through and I am not alone in my fear, difficulties of the disease, and side effects of the medications.

 

[David]

Hi there and welcome to the forum! Let me start out with an apt comment for this:

I was diagnosed over the phone with a stomach ulcer in November 2011

:facepalm:

With that said, you're just taking Asacol right now? Are you considered to be in remission because that's more of a maintenance drug than a, "get you into remission" type of medication.

Are you under the care of a gastroenterologist?

Again, welcome!

 

[kd82286]

Welcome! I was mad dizzy when I first started Asacol HD. It faded once my body started to heal but like David said the Asacol is really only a maintenance kinda deal so until you are in remission you may still have to battle all the fun stuff that comes along with our very attractive disease! Everyone on the forum knows exactly what you are going through and is generally very supportive so whether you have a question or you just want to talk to people that know what you are going through then you found the right place! Again Welcome to the Forum! Good Luck!

 

[CrohnsCrony]

I was misdiagnosed with a simple little stomach ulcer because of the aspirin-based pain killer I took for a week for my back. I had a colonoscopy in the hospital for the diagnosis of crohn's. My MD and my GI's nurses thought Pentasa was a bad idea for me because the side effects were too similar to a crohn's flare-up. The last time I had diarrhea was in the beginning of January, so I have been in remission for 3 1/2 months now. My GI took me off the Pentasa for the past 4 weeks to see if it would alleviate the dizzyness. So I have been on no meds whatsoever and the tired, weak, face rash, itchy scalp, etc, went away. I am unsure of not using the Pentasa or putting salt back into my diet to raise my blood pressure to a normal range helped with the dizzyness or not. My GI did another colonoscopy two days ago and said I do need some sort of med because I have a spot of erosion, but didn't explain what that means, if it can heal, or anything. I am a pill bottle & a lab result to him, nothing more.

 

[David]

I'm sorry you feel that way. You MAY want to search for another GI. And this (at present) is a lifelong, chronic disease, I think it's very important to have a GI you trust and feel positive about.

 

[CrohnsCrony]

Thanks for the warm wishes from both of you. When I ask my doctor questions, he leaves the room and when I ask about all the side effects of the Pentasa, he thinks I am obviously having other health issues and need to talk to my MD about it. He rolled his eyes at me the other day and he recently Threatened to give me azathioprine if I didn't take the Pentasa. I feel like my dentist and his crew are more concerned with helping me to maintain good dental health than my GI and the crohn's, and I can definitely feel the difference. His nurse came up wtih the idea of the low blood pressure & dizzyness and said MANY people who are seen there have the low blood pressure & dizzyness... but the GI doesn't think it's concern of his. Yeah, you could definitely say I am a bit bitter about the whole thing and should probably transfer to a different doctor. I almost laughed when a friend of my said her GI "sat down and discussed her tx options with her and her husband, helping her to chose the one with the lowest long term side effects."

 

[David]

After reading that, remove the "may" from my thoughts. Find another GI. There are tons of really good ones out there and that's what you deserve.

 

[kd82286]

After reading that, remove the "may" from my thoughts. Find another GI. There are tons of really good ones out there and that's what you deserve.

I couldn't agree more! That is ridiculous for your doctor to be so calous!

 

[CrohnsCrony]

Oops, I guess I am not in remission yet as I do still have small lesions and that one spot of erosion. I thought I understood this mess, but I guess I don't. I do know that my pills are the full dose of Asacol, not HD, if that makes a difference? Is there a way that will I know when I am in remission, besides colonoscopies? I do have regular blood draws to check for inflammation, but one said no imflammation (pentasa), next month elevated (pentasa), next stable, and it stabilized while I was NOT taking any meds. It seems that I have a bad week or a good week with the dizzyness, it has gotten to the point where I gets waves of dizzyness instead of constant hours of it.

 

[David]

One thing to keep in mind is that it's not necessarily the medicine that is causing your dizziness. There are many potential causes related to IBD ranging from the medicine as you mention to dehydration and low electrolytes to anemia.

And either way, Asacol is more of a maintenance medicine.