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Surgery was the answer for me

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In 1995 I was diagnosed with Ulcerative Colitis.  I was prescribed Sulfasalzine for several years and it worked great.  I didn't change my diet, I ate and drank whatever I liked.  Then in 2009 I started getting some pretty serious flare ups.  The flare ups weren't going away and were consistent.  My Dr. prescribed a prednisone taper.  This taper took place over three weeks and worked but after I stopped the taper the flare up came back. 

From 2009 until 2015 I was off and on prednisone and the last and mostly on for the last two years.  I had tried changing my diet over the years but to no avail.  I was very anemic and getting very little nutrition from my food.  In the summer of 2015 I had gone from 150 lbs to 120.  I had gone from being an avid cyclist riding five to six times a week to riding once and week and feeling destroyed after a short ride. 

I was using the bathroom 9 or 10 times a night.  Once I started to feel it coming on I had very little time to find a bathroom.  I had to start wearing diapers as I'd had too many accidents in my car, work, the grocery store etc...  I was sick.   

My Dr. put me on Remicade which didn't work.  I tried another drug similar.  After a year of infusions and nothing worked, I decided to have the J pouch surgery and it was the best decision I've made. 

March 9th of 2017 I had my J Pouch created and my large intestine removed.  After the surgery I was using an ileostomy bag until my Pouch was fully healed.  i was in the hospital for four days and came home.  Once I came home I did have a hick up.  I couldn't keep food or water down and after three days I ended up going to the ER.  They did a scan and realized I had an ileus.  This is when the small intestine just stops working.  This can happen from the trauma of the surgery.  I spend another four days in the hospital recovering from the ileus. 

A month after my surgery I had gained 25 pounds.  I was actually riding my bike again.  I got used to the ileostomy bag after a week and a half or so.  I took a few weeks to get good an changing out a barrier and putting new bags on but it became 2nd nature after a while. 

I was amazing not having to worry about knowing how far away a bathroom was.  I didn't have to worry about losing control and needing diapers.  After three months I went for my 2nd surgery on June 15th.  This surgery was to close the stoma on my side where the bag was attached and to reconnect the small intestine to my J Pouch. 

The surgery was a success.  After 6 weeks of taking it easy and doing slow walks my doctor gave me the green light to be active again. 

By the end of September I was back up to 145lbs and feeling better than I had in several years. 

I'm now back to riding my bike actively again and being active with my family again.  I have nothing but good things to say about my experience.  I would consider myself normal again and couldn't be happier. 

If anyone has questions about my experience or want more detail please feel free.  I'm happy to share. 
Story Author Image

TobyBiery
Joined Jan 7, 2018
Diagnosed: 1995

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