Nicole's Story - A Mother's Perspective

In March of 2011, my daughter Kaileigh started off with what we thought was the flu. We were getting calls everyday from the school saying that she was complaining of stomach pains. The school thought she was trying to get out of testing and it was all in her head. She had tried to hide the fact she was bleeding from her rectum, which at this point was severe. She was pretty much living in the bathroom and now was vomiting.

We took her to the ER and she was given fluids for the flu for a second time but she had lost 7 lbs in a week. After the second week things weren't any better and she now was having trouble walking to the bathroom and was drained. We took her to her regular doctor, now more blood than stool and down another 11 lbs.

We were sent to the ER at Hasbro where she was admitted. After a week they did a colonoscopy and Kaileigh was disgnosed with ulcerative colitis. She was given a series of medicines but nothing was working. Kaileigh couldn't keep in any foods and the blood loss was too much. We had to put Kaileigh in a chair because she didn't have the strength to stand.

Kaileigh had 2 blood transfusions and a tube for feeding her, we were told surgery might be sooner than we thought. After 4 weeks, we received the ok to try Humira; she received four shots and now hoped it would work. Finally after 2 days the bleeding was lessening and were able to go hone after 6 weeks of being in the hospital.

We had ups and downs after always being worried. In July of that year, Kaileigh started bleeding again. We found out she had C-Diff and was put on meds, which affected her other meds for the colitis. In December, Kaileigh was still constantly in the bathroom and not getting better.

In January of 2012, the doctors did a another endoscopy/colonoscopy. Dr Shapiro came out and brought us to the parents room and we were told that he didn't even know how Kaileigh was making it through the day. Her colon was filled with ulcers from the top all the way to her rectum and she had lost all the ridges in her colon so we now had to worry about the ulcers turning into cancer. Now it was time for surgery. Kaileigh was put on 20 pills a day and steroid enemas to make it through the day at school. She couldn't sleep at friends houses because she was havung accidents and no longer had control over her bowels.

On February 14, 2012 she had the first part of her surgery where they removed her whole colon and rectum and added a J pouch from her small intestine. She was doing great and then ended up with a blockage and spent her 16th birthday in the hospital. Then on March 25, 2012 she had the reversal of the ileostomy and attached her J pouch. She was told she now had to try going to the bathroom, crying and pushing herself to get out of bed but she did it.

Kaileigh was back to school and doing great. Now in August, Kaileigh was rushed back to the hospital and had bilateral kidney stones and had to have stints put in her kidneys and surgery again. A typical teenager, Kaileigh had 8 stones all together in the year following. She has been a mentor for others going through the same surgery and has finally been able to talk about it to others. My daughter is my hero and my strength. She is an amazing young lady. She is now in her second year at URI and joined a sorority where she feels comfortable and can be open about her condition. Although things will never be the same, we are so grateful.

 

 

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