Jen's Story

Jen, Age 15

In August of 1998, I was diagnosed with Ulcerative Colitis. I spent 2 months in the hospital, not able to eat or drink anything. I was on TPN, and IV prednisone and even required several blood transfusions as my blood levels were very low.

After almost 2 months of trying to get the colitis into remission, things were getting worse. It got to the point where surgery was no longer an elective thing. So on September 25, I had my very first surgery. It went well and my whole colon was removed. Biopsies came back negative for crohn's disease which was great. I spent only a week in the hospital after that surgery and in that week, I was taught how to look after my new bag, which I named "bunky."

Bunky took some getting used to which is very normal but within a couple weeks, it became a part of me. Things were great for the year that I had the ileostomy for.

In august of 1999, I decided to go for the J-pouch surgery. I had it and things seemed good for the first few days except that I was in a lot of pain which is normal, after all, it's a huge surgery.

But shortly after that, we realized I was having some problems. I was very nauseated all the time and therefore, did not want to eat or drink. However, when I drank even a few sips, things went through me and into my bag (I had a loop ileostomy) within minutes. I could not come off of the IV because even being off it for 3 hours made me dehydrated.

I had a picc line inserted and was given TPN daily for nutrition. It was then discovered, that I also had a narrowing in my bowel which was causing all the nausea.

After 7 long weeks, just enough time had went by for me to have the hookup surgery so that I would no longer need the bag. The doctors decided that instead of doing it through the stoma incision, they would open up my original incision just so they could see why I was still in so much pain. They then cut out the piece of narrowed bowel, but also discovered some kind of mass. This was biopsied and 2 weeks later, I was still in hospital with problems with the NG tube draining too much and me throwing up.

The biopsies came back inconclusive. It was either something called "Inflammatory myofibroblastic pseudo tumor", or scar tissue. If it was the pseudo tumor, It would need to be removed. We waited it out and had a CT scan every week to check on it and for some reason, after 3 weeks, It was so small you could barely see it. I got better and the NG tube stopped draining over 3000cc's a day.

I finally went home after 3 long months in the hospital but this did not by any means turn out to be the end of my long journey.

For the next few months, I experienced a lot of pain. I had a bunch of tests multiple times such as CT scans, ultrasounds, barium x-rays, and even scopes of my new pouch. None of the tests showed anything that would be causing all of my pain. I took Tylenol 3, then straight codeine, and even demerol pills from December until March. In March, we decided that something had to be done so I had laparoscopic exploratory surgery. A lot of adhesions and scar tissue were found so they were cut in hopes of helping the pain.

It seemed like a miracle, that helped. But before long enough, the pain was back again, interrupting my normal 13 year old activities. I took a lot of pain meds once again and like before, none helped. I had pouchitis in May which caused some bleeding and more pain, and then I started to bleed from higher up in my intestinal tract. They did a scope from both ends to see how the pouch was, and what was going on higher up and found that my duodenum, the first part of my small bowel, was very inflamed. It bled just from barely touching it. Biopsies were taken from both the pouch, and the duodenum and the pouch came back as pouchitis which was already known. The duodenal scope was inconclusive. I was kept in the hospital and had yet another picc line inserted, this was my third one. I had TPN, and no food or drink to see if it would solve the inflammation higher up but it did not. I spent the majority of the summer of 2000 in the hospital. There, I had tests, received IV pain meds, and more.

In august, we decided to go ahead and do yet another laparoscopic surgery to cut the adhesions. School was to start soon and I wanted to be there for my first day at High school. This time, the surgery worked, but not as much as it did the first time. I had some problems getting off the narcotic pain medication after that, as I was on it for a year straight. I was given time release morphine, and cut it down gradually. 2 months later, I was finally off of it.

I did not do too bad for those few months but scopes once again in October Revealed that the Pouch inflammation and the duodenal inflammation was still there. Biopsies started to show small signs of Crohn's, or some other type of inflammatory bowel disease anyway. Doctors believe there are other forms that have not yet been discovered and named and therefore, I just have IBD. I was put on something called Budesonide (Entocort) which is a steroid that is pretty new and is supposed to be good because you do not get as many side effects as you do with Prednisone, but on the other hand, it works topically so is not as effective. We decided to give that a try but it did not work.

I was again put on prednisone orally, and did that for 2 and a half weeks. In that time, I had scopes from both ends, and it was found that I still had inflammation in my pouch, as well as my duodenum.

I had to be admitted to the hospital AGAIN, which made all of my time spent in hospital the past 2 and a half years, equal 1 year. That is more than a third of the beginning of my teenage years. I was in the hospital this time for 2 months, and was given my fifth picc line, (peripherally inserted central catheter)and through that I was given IV prednisone, and TPN. I was not allowed to eat anything either.

I have been on flagyl (an antibiotic), as well as losec (a drug that cuts the amount of acid produced by the stomach drastically) for 14 months now. The Flagyl does not come without it's own side effects, which include nerve damage in the hands and feet. Sometimes I wonder if I would be better off without it, but without it, things are not manageable.

I still need to undergo a few more rotten tests including an enteroscopy, where I will not be completely anesthetized. They will stick a tube with a camera through my mouth, all the way into my small bowel to see if I really do have Crohn's disease.

I am currently 15 years old, and I miss out on so many of the things that normal 15 year olds should be doing. More research needs to be done to help other teenagers whose lives could be ruined by inflammatory bowel disease, as mine was.

By Jen - June 2001

November 2004

It's been a few years since my story has been updated. I am now 18 years old, and spent a month or so in the hospital this past summer for surgery #6 to return to an ileostomy bag after 5 years of j-pouch failure. This, like the others, was not without its complications, and I spent the past 4 months on IV hydration.

I am hoping to eventually try the j-pouch again, which will mean another operation, but I am willing to give it a shot.

My main focus now is on nursing school, which I just started this year, as I hope to become a pediatric nurse practitioner working with other children and teens with IBD!

Return From Jen's Story To Home