One Step Closer to Dx

I have spent 8 years trying to get a diagnosis. Doctors kept telling me I have Post-Infectious IBS, which I knew was absolute nonsense. I had too many Red Flag symptoms, and my illness was too severe. I went to the Mayo Clinic in March, expecting to see a great Doctor who would figure this out. It was a nightmare. The doctor was an IBS specialist, and she was leaning in that direction before a single test was done. She wasn't even willing to explore the possibility of IBD. I questioned her about it, and she got angry and proceeded to hang up on me. What a disappointment.

I wasn't going to give up, so I contacted the Cleveland Clinic. I chose my doctor, Bret Lashner, from the "Top 75 Gastroenterologists List". Unfortunately, he had to cancel my appointment because of hospital duty. I was assigned a different doctor instead. Luckily for me, I was assigned to the best doctor in the department (who I was unaware of). He is also the department head, and his name is Bo Shen. He has been wonderful. He even sends results to me and answers questions via email. For some reason, he said that he was confident that we would find something on the EGD/Colonoscopy. This surprised me, since nothing showed up in the past.

Well, I did the tests a few hours ago, and he was right! The results showed a lot of inflammation in my rectum. Unfortunately, I was in so much pain from the rectal inflammation during the colonoscopy that they were unable to view the Terminal Ileum. I don't remember anything about the procedure, but they said it would have been unsafe to continue. I wish they went ahead with it anyway, just so I would know whether there was any inflammation. But either way, I'm just happy they found something to explain my illness. I'm still waiting on the biopsy results, but I hope to start treatment soon and get back to a normal life.

I would recommend the Cleveland Clinic to anyone suffering without a diagnosis. They are wonderful here! So sorry for the lost post. Take care everyone.

Brian

Thanks so much for the reply. I am very excited about the possibility of starting treatment and finally getting some relief after almost a decade of suffering.

The Mayo debacle was really shocking to me. I couldn't believe this physician could be so crass considering the monetary and emotional investment involved with going to such a world class hospital. I actually did complain to Patient Services, and spoke to a really nice guy named Jeff. I explained that I came to the Mayo Clinic because I wanted to be thoroughly tested by the best doctors with the best technology. I told him how the doctor didn't take the time to really listen to my symptoms, and when I requested more testing, she got mad and ended up hanging up on me. I requested a new doctor, and that the doctor be an IBD specialist because my previous gastroenterologists suspected Crohn's. They called me back a couple days later, and told me that the head of the GI department reviewed my case, and didn't feel that it was necessary to test for Crohn's. It was obvious that I wouldn't be able to cut through the elitism, so I decided it wasn't worth it to go back.

I feel that it is really important that we as patients make an effort to be our own advocates when dealing with a chronic illness. Unfortunately, I have found that is frequently met with opposition from physicians, who would rather not be questioned or take suggestions. Like you said, we are paying doctors for their service, and we should be able to participate in medical decisions.

Once I am formally diagnosed, I plan to have my records sent directly to both physicians who didn't feel that it was important enough to explore the possibility of IBD. Maybe next time they will reconsider before they close the book on another patient's health with an IBS diagnosis.