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The following is Kaitlyns story that led us to Manhattan this week. The journal entry is long. I promise it only scratches the surface of the complete journey. We now refer to family events and memories as pre- or -post kaitlyn disease. Our family is not the same. Everyone's experience has been different. Nothing prepares you as a parent to watch your healthy child become ill and suffer permanently. We only have a glimpse of what Kaitlyn has suffered. There have been positive moments and miraculous and heartwarming experiences along the way. The following (long) story attempts to highlight significant parts of the journey. A journey that has been full of pain, disappointments, hope, and much expense- emotionally, physically, and financially. It has also seen many small miracles along the way.
Jan 2012 Kaitlyn was diagnosed with Inflammatory Bowel Disease. Depending on location of disease found in the bowel, it is either Crohns or ulcerative colitis. Kaitlyn was the latter. Her UC remained mild & manageable until Aug 2013. After colonoscopy we were told it would be a fight to save her diseased colon.
And so began Kaitlyn's love/hate relationship with TPN, which stands for Total parenteral nutrition. (This method of feeding bypasses the GI tract, and is administered through a Picc line- commonly called total gut rest) Kaitlyn spent months on and off TPN. She began high doses of steroids and immunosuppressant medicines, and had some adverse side effects. Side effects that bothered her the most were debilitating bone pain, and about 40% hair loss.
Treatment failed & Kaitlyn had a total abdominal colectomy. Nov 2013. The surgery was scheduled to be 5 hrs.
THE COLECTOMY SURGERY Part 1 : All large intestine was removed by means of laparoscopy and a small incision below her belly button (think c-section)
Step 2 was to connect Kaitlyn's small intestine to the "cuff" of her rectum. The surgeon was then met with an unexpected complication. Kaitlyn's blood vessels wouldn't "stretch" all the way. Part 2 of surgery became vascular. Multiple blood vessels were divided and checked for viability. One was eventually found, but would not allow the surgeon to trim the cuff to the normal 3cm. He had to leave about 9-10cm for Kaitlyn to have complete internal function of her intestinal tract again. (Be bag free) Her small intestine was stretched and a new fake colon made (called a J-pouch) with a small piece of small intestine. This allows waste to have a small "holding" area before exiting the body.
Third and final step was to divert her small intestine at the ilium. (Thus the name ileostomy) Kaitlyn's food would be passed through a stoma and captured in an external bag. The surgery was complete.
Start to finish on the operating table was close to 12 hrs.! It was a long, exhausting day that we will never forget.
Additional unexpected surgeries followed, including stoma revision and bowel obstruction. Kaitlyn then contracted an infection that was resistant to antibiotics. Our girl's abdomen opened up and became a gaping hole. A medical device called a wound vac (portable vacuum that sucks the infection through sterile sponge) was used until Kaitlyn's abdomen closed. (About 2 months). A few months following complete wound healing, Kaitlyn was able to be reconnected. No more bag!
Kaitlyn felt well until June 2014. Her next roadblock came in the form of Pouchitis (yes, this is a real medical term!) This condition became the norm, as well as inflammation in the cuff area.
Kaitlyn's medical journey was far from over. She was referred up the chain to Vanderbilt. Months of new medical treatment included expensive antibiotics, injections, and monthly infusions. The remaining cuff at her rectum was the culperate, as well as the placement of the j-pouch.
Kaitlyn was not able to attend school for her Jr and Senior yrs. She worked hard with home- bound teachers and tutors, and was admitted to BYU for college. A huge accomplishment for any student- much less a sick one. Her doctors agreed she was healthy enough to attend college, as long she was seen/followed by the head of GI at University of Utah in Salt Lake City.
Kaitlyn attended BYU, had monthly infusions and shots. Each medication increases her chance for cancer. Her worsening ulcerated colon "cuff"increases her chance for colon cancer. Kaitlyn's team of GI drs consulted and all agreed she was rare enough to consult head of colorectal surgery @ Cleveland Clinic. He agreed to see Kaitlyn & we met May 2016.
Dr Feza Remzi felt he could give Kaitlyn a quality of life back by performing a three- surgery process that would of her small portion of diseased bowel, and to bring her existing j-pouch down. We kept in contact and made plans to have surgery in Cleveland. Dr. Remzi left Cleveland for NYU sept 2012, and we followed him there.