Washington University & Barnes Jewish

Wash U Rocks!

Saw a new gastroenterologist (Dr. Bellyfixer) today in St. Louis to discuss prognosis and strategies for my long term side effects from radiation. It was so nice to see someone who didn't try to convince me that radiation therapy was not the cause of my issues. He said he sees these side effects in persons treated with pelvic radation and also certain types of chemotherapy.

He told me that because there are multiple causes of the problems I have, medication therapies would have to be multiple also (generally I have tried one solution at a time which only ever partially worked). I came away with some hope that there were some remaining strategies still to be tried. The first thing I am trying is a drug that captures the free bile salts in your system (WelChol) and one that slows the motility of my digestive system (methscopolamine bromide), with permission to add Imodium to the mix if these do not do the job. The WelChol should also decrease my LDL levels and my HgA1c levels. That's lower my bad cholestrol and blood sugar average in plain English!!

Dr. Bellyfixer did tell me if my fecal incontinence continues to worsen, which is quite possible, that the only real solution is to have a surgical ostomy. He said he did not think I was at this point yet but it was best to start planning on it ahead of time. I hate to think that the only solution is surgical, but the colorectal surgeon had told me the same thing last summer. We discussed several strategies on ways to deal with this problem on a daily basis, and came up with a couple of new ideas.

We also discussed my pancreatitis. Since I have several relatives who died of pancreatic cancer and who did not drink at all, he said my pancreatitis might have an autoimmune/inherited inflammatory component. He stated that since I had already had four to five documented bouts of acute pancreatitis I maybe should have an esophageal ultrasound (EUS) every three to four years to keep track of it regardless of symptoms. Dr. Bellyfixer said pancreatic cancer is easily cured if caught early enough, but because it does not create a lot of symptoms it generally has already metastisized to neighboring organs before it is found (as in my relatives' cases). He was pleased I already had an appointment with Dr. Gnome to check on it.

Barnes Jewish (BJC Healthsystems) is the hospital Washington University works with, and is considered one of the top hospital systems in the United States - I believe #9 on US News and World Report 2009 listings. I found all the staff highly professional and Dr. Bellyfixer exceedingly helpful and friendly, and easy to discuss very personal health issues with.

We didn't discuss much about the pain/weakness of the legs, but perhaps I will need to find yet another specialist to deal with that. He did say that the nerve damage from radiation therapy will continue to worsen, and probably will not stabilize, and that this is as much a part of the diarrhea issues I have as the actual scarring from radiation. I appreciated the honesty. I have no problems facing hard truths and planning around them, but its difficult to make plans when you only get part of the picture. I'm sorta of an "OK - now what?" type of person, but I prefer to have the best information possible before going to the next stage.

When I actually come face to face with how many serious health issues I have, I find it hard to believe that this is ME, this person who is sick. While I get aggravated at the Dr. Dunces in this world I realize that I'm probably not the average patient with one or two problems that they see. I think I should be depressed, but I'm just tired. Too much driving today I think, plus it was free flu shot day today at the hospital so I think the entire population of St. Louis was in the lobby getting flu shots and clogging the adjacent streets and parking lots. Patience is a virtue that requires practice, and I got a lot of chances to practice today!

The Belly is complaining, and I was running a fever today - not sure if its from the pancreatitis or other issues, but will have to check it out tomorrow. I had to turn off my occipital stimulator because it makes me so sleepy driving, so The Headache is back in business now. Going to medicate and go to bed, so night all!