My IBD Story

Ulcerative Colitis | Five Major Surgeries | Living My New Normal

–  Living mindfully thanks to IBD –

How it started.
I had two severe flare-ups. My first flare-up started in July 2012 and lasted until the end of August 2012. I was diagnosed and given steroids to stop the bleeding and Asacol to treat the inflammation. My second flare-up started three months later, November 2012, and led to toxic megacolon, and my colon happened to perforate while getting operated on. I still have the surgery write-ups.

What’s a flare-up?
A severe flare-up in my experience is the inability to eat or drink due to pure bloody diarrhea and pain 24/7. This means weight loss, undernourishment, anemia, and dehydration takes place. I could not eat, I could barely drink water, and I was exhausted due to pain and extreme daily blood loss.

What medications and other treatments did I receive?
At different times I was on Flagyl, Cipro, Prednisone, Asacol, Imuran, Remicade, and enemas. I had multiple procedures such as sigmoidocopies, ct scans, x-rays, iv fluids, blood transfusions, TPN (tube feeding through a PICC line), blood tests, NG tube, and rectal exams, etc.

Date of Diagnosis.
August 2012 (symptoms for 1 month prior)

Major surgeries:

1) Colon removed and end ileostomy created November 2012
2) High-grade bowel obstruction surgery December 2012 (small intestine twisted)
3) Jpouch and diverting loop ileostomy created April 2013
4) Fistula repair surgery July 2013
5) Reversal of ileostomy December 2013

Minor surgeries:
1) Fistula evaluation and dilation May 2013

2) Investigation of pouch advancement flap healing and another dilation September 2013
3) Evaluation of pouch and pouch barium x-ray November 2013


2 thoughts on “My IBD Story

  1. Am not a youngster like you, but have empathy with you having gone through many of the procedures you listed, including the PICC line. Just wish the medical profession would come up with better procedures to treat patients after the initial operative removal of colon / parts of the digestive system.

    1. Thank you. All this has definitely taught me more about empathy. Yes I wish there was another way to handle severe IBD. I had a hard time deciding what to do- ileal pouch or permanent ileostomy.

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