Crohns – Getting the diagnosis right

I was diagnosed with Crohn’s Disease three years ago when I was 15, but I had been very sick for many years before I received that diagnosis. I always felt extremely weak and tired, was in a lot of pain, and had low blood counts. I also got dizzy a lot and would often have to throw up.

Over the years I saw a number of doctors and specialists (although never a GI specialist) and had numerous tests done. But no one was able to figure out what was wrong with me. I felt horrible all the time and there wasn’t anything anyone could do to help me. I had to be home schooled due to the fact that I was not well enough to attend school regularly.

In October of 2004, my illness got dramatically worse. I was having bloody diarrhea more than 20 times a day and, aside from frequent trips to the bathroom, I was barely able to get out of bed for a month and a half. In addition to this, I lost 10 pounds (putting my weight at under 7 stone) as a result of being unable to eat very much during that time period. I was in so much pain it often hurt my stomach to breathe. My mother insisted that I go and see my doctor, even though I felt as if I were to weak to attend the appointment. We were expecting him to do some tests to try find out what was going on and to check my blood counts, but he said that wasn’t necessary. He told us he could already tell that I was “profoundly anemic” and that I most likely just had a really bad case of the stomach flu on top of the other health problems I’d already been suffering from. He placed me on a bland diet and said he would call in a few days to see how I was doing. I started getting fevers and my condition continued to worsen, so I ended up having to go back to see my doctor later that week (even though at this point I was really barely able to walk). He finally ordered a whole bunch of tests and it took hours to do them all. When we got home I was so exhausted I just collapsed on my bed. At around ten o’clock that night, we received a call from my doctor; he said my blood counts were so low that I would have to go to the hospital that night. I ended up needing three blood transfusions and was told that most people would have died if there blood counts were as low as mine were. I was up most of the night answering all of the doctors’ stupid and annoying questions, having more tests done and getting IVs put in. The doctors still weren’t sure what was wrong and did a bone marrow test the following day. Then I finally saw a GI doctor who, after doing both a sigmoidoscopy and a colonoscopy, diagnosed me with Crohn’s Disease. After spending two weeks in the hospital getting IV medicines and fluids, not being allowed to eat anything, and drinking a lot of horrible tasting nutritional formulas, I was sent home on 20 pills a day. I was still in a lot of pain and had a very low blood count.

After my diagnosis, the doctors told me that I would start feeling better really soon, since they finally knew what was wrong and would be able to treat my illness. Unfortunately, that has not been the case. Since my diagnosis, my illness has only gotten worse. I have been in the hospital many times and have been on extremely high doses of Prednisone. During my longest hospital stay I was there for over a month (which included both Christmas and New Year’s) and things got so bad I nearly required surgery. My doctor says I have very severe case of Crohn’s. I have never had a remission and have had bloody diarrhea pretty much non stop for three years. In addition to the stomach pain, I also suffer from joint pain. This combined with the anemia and fatigue, often makes it difficult for me to lead any kind of an active life. I have tried a number of different medications for my Crohn’s, none of which seem to help much. And most of the pain medications don’t really help either. I find it unlikely that I will ever feel better, but I still want to get on with my life. I finished secondary school with 4 A-levels and I would like to become a doctor someday, so I can help other kids with chronic illnesses.