Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength
Diagnosed with severe Crohn's colitis in May 2005. I deal with daily arthritis ALL over my body, cystic acne, & fibromyaglia. Have taken Imuran, Remicade, TPN, Colozal, Entocort, Flagyl, PamineForte, Cipro, Dicyclomine, Prednisone, Asacol, Prevacid, and the list goes on. Currently being treated with 4000mg of Pentasa daily, 60mg solumedrol, and Remicade.
Diagnosed with severe Crohn's colitis in May 2005. I deal with daily arthritis ALL over my body, cystic acne, & fibromyaglia. Have taken Imuran, Remicade, TPN, Colozal, Entocort, Flagyl, PamineForte, Cipro, Dicyclomine, Prednisone, Asacol, Prevacid, and the list goes on. Currently on Remicade every 4wks, 20mg Pred, Asacol, 75mg Imuran, etc.
First of all let me tell you that last year I was also on 80 mg of prednisone, I was really depressed, crying all day, moon face etc, but it did wonders on my bowels so if I was having a major flare like last year, I would still take it.
Now, I also had a bad experience with my first GI, he is considered to be one of the best Crohn's specialist, and you realise that since Crohns here in Greece is a very rare disease, doctors who specialise in that area are only a few. Anyway, I had to fix an appointment to see him and the waiting period was approx. 2 months. Then I would wait to his office for about an hour, and when I finally saw him, he stayed with me for 10 minutes, unwilling to reply to my questions, and then I was walking home wondering what happened. One day I saw some blood in the toilet, so I decided to call him so that he could advise me what to do. You know what he told me over the phone? "I have hundreds of patients, I don't even remember who you are, call my secretary and fix an appointment, so that I can see you" My reply was "But doctor, your appointments are already fixed for the next month, what am I supposed to do until then? You told me not to take or change any madication without discussing with you first. What do you propose I should do until I see you?" His reply, "If you feel that it's an emergency, go to the ER". I hang up the phone, started crying, and that was the last time I spoke with him. I found a great GI, who even gave me his mobile number to call him whenever I have questions, and he also sits with me for approx. 40 minutes in every visit, so that we can discuss the situation. And believe it or not, I feel so much better, just knowing I have his mobile number in my purse.
Doctors should also be studying bed side manners, apart from medicine.