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My Daughter is a unicorn!

Wed, November 04, 2020 4:21 AM

Aloha Everybody!

My name is Susan. My daughter Katrina is 26 years old. In January 2020 Katrina thought she caught a stomach flu. By mid February, the symptoms were getting worse and I finally convinced her to see my PA. He gave her some antibiotics and Tylenol 3 for the pain and a referral to a GI specialist. The symptoms dissipated and she was feeling much better. In early April, the symptoms returned and the pain got so bad I had to take her to the ER. They did X-RAYS, a cat scan and rehydrated her. They sent her home diagnosing her with a bad UTI and medication. The next day, the ER doctor called her and asked her to come back in. Uh-Oh! He told her that the radiologist saw a small abscess. She went back in and they immediately admitted her. The next day, the on call GI specialist examined her and said he wanted to do a colonoscopy. He told her he thought she had Crohn's Disease. Sure enough, two days later the biopsy results confirmed she definitely had Crohn's. The Gynecologist ordered a new cat scan. The results came back that the radiologist thought she may have poly cystic ovarian syndrome. Katrina was feeling better and the Humira seemed to be working. I called to speak to her Doctor. The General Surgeon told me there was a gross amount of Crohn's affected areas than they originally thought. They resectioned 2 fistulas in her small intestine, 2 fistulas in her large intestines, they repaired a hole in her colon, drained the ovarian cyst and cleaned the infection from her Fallopian tubes. Then nonchalantly tells me "it's too bad that she's terminal at such a young age"and that I sholuld make arrangement for her to see a CD specialist. I almost dropped my phone. I think he just told me that my daughter was dying? When I hung up the phone, I started shaking and became hysterical. My Baby was dying! The next day, was my birthday. I spent the entire day crying.

SusanPC1967
Joined Nov 4, 2020

Wed, November 04, 2020 11:12 AM

Reply posted for administrator.

Hi Susan,

Thank you for sharing your daughter's story. We are sorry to read about the challenges she is having with her health.

First, we would like to let you know that that "death due specifically to Crohn's disease or its complications is uncommon". This information is included in our Fact Book at: https://www.crohnscolitisfoundation.org/sites/default/files/legacy/assets/pdfs/updatedibdfactbook.pdf

If you would like to learn more about Crohn's Disease view our website at: https://www.crohnscolitisfoundation.org/What-is-crohns-disease/treatment

It can be helpful to get a consultation from health care specialists who have experience in Crohn's Disease. We have a list of our physician members on our website at: https://www.crohnscolitisfoundation.org/find-a-medical-expert

Finally ,it is important to get emotional support. It can help to talk with other caregivers through support groups or the Power of 2 Program https://www.crohnscolitisfoundation.org/mental-health . If you just want to talk, call the IBD Help Center at 888-694-8872 x8 M-F 9am - 5:00 pm EST.

administrator
Joined Oct 12, 2017

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