long time crohns patient

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MDdave
Regular Member


Date Joined Nov 2007
Total Posts : 74
   Posted 11/13/2007 1:26 PM (GMT -7)   

Hi, I am new to the board but have battled with crohns for most my life, I am 41 and have been diagnosed since age 13(Shan’s Teaching Hosp in Gainsville, FL) in 1980 but had IBS issues since 1976.

I have had multiple resections in the late 80’s and was medicated primarily with prednisone during those years.

I got married in 88 and had a son and moved to Maryland in 92 during that time I managed with prednisone and tried a few other new drugs that did nothing for me.

 

I suffered in the mid to late 90’s and had a loosing bout in 1997 with anal fistulas that would not dry up and put me in John Hopkins 5 times in 3 month for surgery.

I went to my gastro specialist for a follow up (the best in the country Dr. Theodor Bayles a teaching Dr at Hopkins) and I was not doing well I could not sit on my butt and I had a donut to use in my car, things were so bad he sent me down to Baltimore JHU to have surgery on the fistulas again after the surgeon went in and took a look he waited for me to come out of recovery and said there is no way he can continue to cut in the area to remove the fistulas as I would loose the function of my sphincter muscle and he said to me we are loosing the battle and I need to think about going to a ileostomy, so at that time I was in so much pain I said just promise me I will be better off. I was in the hospital for 10 days and got out on July 4th 1997 and have had two other visits with doctors in ten years.

 

So here I am today feeling good and (now have a 6 year old son along with the 18year old) but have had some abdominal pains lately and decided to make myself go back and see my original doctor Dr.Bayles to see me and look with a scope and see what’s going on.

 

I have been thinking about going to get a reversal and I am young enough to get it done and live

with out a bag, I got an appointment for Dec 10th               

 

Just a side note...my mom has had Crohns since early 70's with two resections and I have a sister and a brother that have colitis. Johns Hopkins has done a blood test on all the members of my family to help them understand more about family genes.

Post Edited (MDdave) : 11/13/2007 1:49:03 PM (GMT-7)


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 11/13/2007 2:31 PM (GMT -7)   
Welcome to Healingwell. You will find alot of wonderful and supportive folks here. Let us know how your appt goes.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.

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