So I had my first follow up appointment since being diagnosed and getting out of the hospital. I had been anxious about discussing my desire for natural treatment with my doctor, since he is basically a new doctor to me, my condition is new to me, and I had no idea what his response would be.
The Good News:
I am very pleased with my GI doc, so far. He explained the medication(s) he would like to use and wanted me to do my own research on them so I was fully aware of how they work and side effects, etc. Very impressive to me - In the past, I have only had doctors tell me what do to, without much explanation or options.
I told him I had already been doing research and was very interested in pursuing a drug-free, controlled diet treatment, and - ahem - what did he think?
I was ready to be pounced on for being unrealistic, or reckless with my health, or a difficult patient...but...
He wasn't shocked at all and said he'd definately be willing to work with me towards that goal. He said he personnally only has one patient that is using diet only to control their Crohn's, and therefore wasn't the best informed on the diet aspect. SO - he's setting up a consultation for me with the Inflammatory Disease Specialists at Cedar Sinai in LA. He said they are the ones to go to - they can guide me and set up a plan, and then we'll all work together on what I want to do.
The Bad News:
I didn't realize just how bad my crohn's attack had been. In the hospital, I was so out of it when the doctor talked to me, that I didn't ask questions and get a full explanation of all the test results. Once on the Prednisone, my symptoms went away so quickly and completely, that I've been kind of thinking that the Crohn's flare had been more moderate and that the combination of the C. Diff infection is what had made me so sick.
BUT - at my appt, I found out that it was really bad. He said my colon was so inflammed and damaged that he only saw the lower part of my colon, he was afraid to go higher and risk causing further damage. He also said I am the only patient he has even seen since he's been practicing (21 years) that had esophagial crohn's - he's only read about it!
Yikes! The news gave me a bit of a reality check I think.
So, although I would like to try a diet only treatment, because of the severity of my attack and the damage caused, my doctor said he would be very nervous about going straight from the Prednisone to nothing at all. He recommended that I try the drug 6MP for 3-6 months. If everything is under control and no relapses during that time, then I can wean off the 6MP and transition into my controlled diet treatment. It sounded like a reasonable suggestion, so I'm going to give it a try.
I have a month to go that I'll be weaning off the Prednisone, then I'll start the 6MP. I'm nervous about the side effects, but hopefully I will only be on it for the intended 3-6 months and not any longer.
I have already changed my diet and am taking a ton of supplements. Hopefully, these changes will or have already been helping the healing process, restoring a healthy balance to my body especially while taking drugs, and hopefully help counter-act some of those side-effects, particularly the scary low-immunity.
Next post, I'll list all the supplements I'm taking so far...
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Found your blog through your post on facebook. I blog about Crohn's also but also about politiclly related issues since it's a release valve for my anxiety.
ReplyDeleteI probably am not that into food related treatments of Crohn's with the exception that I am interested in the role of carbohydrates in inflammation and I follow two physician blogs in which this is discussed. My doc is a strong, strong believer in probiotics but I haven't found the information I need to start on a program such as "which bacteria, how much, how often?