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Crohn's Disease Forum » Your Story » Still learning to deal with crohns


09-28-2012, 10:07 AM   #1
Sbear
 
Join Date: Sep 2012
Location: Saskatchewan
Still learning to deal with crohns

My name is Sherry and I'm in my mid thirties. I was diagnosed with Crohn's about 6 years ago and aside from the first year it has been mostly inactive.
I was on prednisone to get it under control at first and asacol since. I am terrible for taking the asacol properly because I feel terrible when I take it. I become afflicted the the mysterious disease draggin azz.
I just learned that it is probably not as inactive as I thought because although I have dealt with abscesses since before I was dianosed I have had one for the last 3 years that was larger, and more painfull then any of the others. I had surgery in May and it is only healing now. The surgeon is sure that it is hidradenitis and thinks I should start remicade. I have been referred to an infecteous disease specialist. My crohn's doctor has left me frustrated because when I have asked him about this he only shrugs his shoulders and tells me to take my asacol.
My family doctor and I have decided to take over, she has referred me to a new crohn's doctor and an infecteous disease specialist. She is testing me to see if I am vitamin deficient to try to help make the asacol easier to take. Then hopefully it will be able to help and I won't be put on remicade. Any other advise on the asacol would be wonderful I have read on this website and it has already gave me ideas.
Holy that turned out to be long winded, anyway I just found this forum and I think it is great and has already helped me. I look forward to using it more often.
09-28-2012, 10:16 AM   #2
Clash
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Sorry that I don't have any advice on asacol but I think getting your vitamins levels tested is a great move. Alot of the members here do find that they are deficient in some of the vitamins. You have probably already browsed the thread but under the treatments sub forum there is some great info, advice and experience on asacol as well as the other CD treatments. I know that there have been studies suggesting asacol may not be as effective in CD as it is in UC and I think there is a thread that discusses this as well. I hope you are feeling better soon.
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
09-28-2012, 09:25 PM   #3
David
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Join Date: Feb 2006
Location: Naples, Florida
Hi Sherry and welcome to the community. I'm glad you found your way here and joined!

Where is your Crohn's disease located? Just in the colon? Just in the small intestine? Or both? With that information I'll provide some opinions on Asacol

All my best to you.
09-29-2012, 09:55 AM   #4
Sbear
 
Join Date: Sep 2012
Location: Saskatchewan
Thank you David. If I understand correctly my Crohn's is just in my small intestine. I take 800mg of Asacol 3 times a day.

Your opinions are appreciated. I will know more next week because I was called back to my family doctor regarding the tests she did. She tested for everything so I will have a better picture of what's going on. But any insight you can give would be wonderful.
09-29-2012, 05:17 PM   #5
David
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Location: Naples, Florida
My issues with your being on just Asacol:

1. It is formulated to release based upon intestinal pH in a manner where it is intended to treat inflammation of the large intestine.

2. It is intended for use in Ulcerative Colitis as it is thought to act topically (sort of like lotion) whereas Crohn's can affect every layer of the intestinal wall.

3. It sounds like you don't tolerate it well.

I'm fine with people with Crohn's disease taking Asacol in conjunction with other treatments. But alone, especially if you have active disease in the small intestine, in my opinion means your disease is being mismanaged and over time that usually turns into bad news.

So yes, get to a new gastroenterologist who knows how to manage Crohn's disease. I'm glad to see your regular doctor is testing you for vitamin and mineral deficiencies as that's an important aspect of IBD management, but Crohn's is such an intricate disease that being monitored by a specialist is important in my opinion.
10-03-2012, 04:55 PM   #6
Sbear
 
Join Date: Sep 2012
Location: Saskatchewan
Saw my crohn's doc today with a little bit of success. Off the asacol and on to pentasa to see if I do better on that. Still waiting for the letter for the new crohn's doc for the appointment. Remicade is probably not in my near future and to be honest I'm happy about that. Unfortunatley he did not really pay attention to any of the recommedations of the surgeon and only shrugged when I asked him directly about them. I see my family doctor on Friday so I'm sure she will have answers for me on what to do while waiting to get into the new crohn's doc & infecteous disease specialist. I have also left a message for the surgeon to see if he has any recommendations for the wait.
I'm optomistic I'm on the road to better crohn's management.
10-03-2012, 10:46 PM   #7
David
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Thanks for the update! I'm glad you're feeling more positive about things
10-03-2012, 10:54 PM   #8
Judith
 
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Join Date: Mar 2012
Location: California
Welcome to the forum Sbear,
It sounds like your GP is on the ball..... that is excellent. Your GI would drive me crazy..... I cant believe he just shrugs you off.
Dont get me wrong, I respect a doctor that can say "I dont know"..... but it should be followed up by a ".....but I will find out!"

I wish you the best of luck with your new GI and Infectious Disease specialist. Please keep us updated and feel better soon.
10-04-2012, 07:43 AM   #9
Sbear
 
Join Date: Sep 2012
Location: Saskatchewan
Thank you David and Judith. I was still a little frustrated when I wrote that yesterday. I'm almost certain a diagnosis of hidradenitis is coming soon, but my GI was asked to rule out any crohn's issues before I see the infecteous disease and of course he just shrugged it off. The surgeon I have has been wonderful. The surgeon told me yesterday to assume hidradentis and to find the things that work for me for relief.

I will keep updating I've already learned a lot from cruising around on this site.
10-04-2012, 07:44 AM   #10
Sbear
 
Join Date: Sep 2012
Location: Saskatchewan
I should have said temporary relief until I see Infect Disease.
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