Randi's Story

Hello. My name is Randi and I have had my ileostomy since November 23, 2004. (As I write this, it has been just over two months.) My story is long, but I think it is important to include everything in case it can help anyone.

When I was 15 I was diagnosed with UC and put on some azulfadine and retention cortenemas. They fixed me up pretty well and I guess I went into remission until I went to college two years later.

I am not sure what triggered it, but once in college, I began to have symptoms of my disease again. Many people wrote about their own denial. I don't think I was in denial when I began to flare with UC. I think I did not know what symptoms were a big deal enough to seek medical help. And since I was on my own, my family could not help much.

Anyway, I was bleeding heavily, running to the bathroom about 70-100 times a day, and throwing up quite a bit. My friends thought I was bulemic. Finally, my older brother, who went to the same college as me, took me to a concert, where I passed out from anemia. My brother took me to health services, where they found I had lost 3/4 of my blood and needed to be taken to the hospital. My parents came and took me to a hospital close to my hometown. I was given blood transfusions and IV medication. I was in ICU for a week. I was so weak they put a little toilet next to my bed so I did not have to walk the 10 feet to the bathroom.

When I was sent home from the hospital, I was on a lot of medication. The only one that I remember was Prednisone. I was on a lot of prednisone. Before long, I was having kidney stones, gaining a ton of weight, having terrible mood swings, and horrible back pain. I also was diagnosed with glaucoma and high blood pressure. Anyone who has been on prednisone knows how evil it can be for someone's self esteem. I was very bloated and miserable.

After about 1 year, I realized that I still had a lot of stomach pain and that my quality of life sucked. I went to a colorectal surgeon, who did a CT scan. I was not allowed to leave the hospital because I had a perforation in my colon. I ended up having ilioanal anastomosis, which is J-pouch surgery. It took three surgeries. After the first one, a doctor realized I had 3 broken vertebrae in my back due to osteoporosis from the prednisone. After the next two, there were no real surprises.

By the time I felt decent, I was 21, and had met the man I would eventually marry. I finished school and we tried to start a family. I had an ectopic (tubal) pregnancy due to the scar tissue from my surgeries. Well, to deal with the ectopic pregnancy, I had another surgery. I was told that I would probably not conceive because they could not find the other tube.

About 5 years after that, I had what I thought was a cyst in my vaginal area and went to my gynocologist. He agreed that it was a cyst and did outpatient surgery to remove it. In recovery, he told me it was not a cyst and that it was the "largest boil" he had ever seen. He lanced it and packed it. It came back 2 weeks later. And again 2 weeks after that. Both times, I saw a general surgeon, who finally suggested I go back to my GI to get the right diagnosis. Abscesses and fistulae (which is what I had) don't happen in UC. They happen in Crohn's and are a sign of active disease.

OK-- got my Crohn's diagnosis.

Had my gallbladder out. Got pregnant (naturally, by the way... there is hope after all!!!) Had my baby 10 weeks early with a C-Section (by this time, I had 6 abdominal surgeries and 6 peri-rectal surgeries.

I became tired of fistulae. I became tired of not being able to sit, walk, exercise, make love, etc. But I waited until I began to have severe stomach pain to do something about it.

I went back to my original colorectal surgeon, who again ordered some tests. And because I had fistulae not only on the outside of my body, but all along the insides as well, I now have my ileostomy again.

I finally feel well. I can sit, walk, exercise, make love and I even have energy for my gorgeous 1 1/2 year old daughter.

Thank you for this site. I hope it helps others as it has helped me.

...Randi

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