Fun with Crohn’s Disease…



03/16/2017  I have decided that I don’t have enough time for Crohn’s disease so I am going to ask it to leave.

02/19/2017  Its almost time for my yearly colonoscopy again which I have promptly about every five years. Got new doctors at Aurora Grafton Hospital this time rather than Froedtert because we have now moved north to Hartford.  Making sure that I have an anesthesiologist present this time because last time I had some significant problems.  Hope to God they don’t find anything that a Doctor considers interesting and that everything is just routine. I really would prefer not to have any additional surgeries.  I don’t have the time for more surgeries and I sure as hell don’t want any.  Maybe remicade is keeping everything under control long enough for some bright doctor to come up with a better long lasting cure or I might just die from something else before I need more surgery.

I don’t want any knife happy surgeon cutting me a new one. I’d like to live the remainder of my life with all my original plumbing basically working normally but I have a sneaking suspicion that I will not be that fortunate. I hate colonoscopies and I think there should be a Trump executive order against the procedure. I would probably be just fine if they would have given me medical marijuana as a treatment. I know I would have a better attitude right now.

12/25/2016 I have found that Crohn’s disease is an incredibly expensive disease.  It’s amazing what my insurance pays for my Remicade and other medications even without any operations.  A rough estimate for medications is $100,000 per year and I plan on living a long time so I hope I can keep that insurance.  I would like to avoid any major operations for as long as possible because the results are not something I like to think about. Crohn’s disease doesn’t usually kill you directly but it can certainly make your like very very uncomfortable.  My father had told me I would be better off dead when I discribed Crohn’s but I think that he was a little excessive.  I would like to stick around for a while because I still enjoy life.

2015 or before:  If you have any symptoms of Crohn’s disease, please read this article from the CDC (center for disease control).

(I can no longer find this link on the CDC website but it used to be there a few years ago. I have quoted a small excerpt below because it appears to match what happened to me.)

The CDC also has a lot of other good information on Crohn’s.
The doctor I had in Illinois when I was first diagnosed with Crohn’s was dangerously incompetent and he never checked me for a low B12 level. I had the following symptoms of low B12 from the CDC article after my first operation:
” Common neurologic complaints include paresthesias (with or without objective signs of neuropathy), weakness, motor disturbances (including gait abnormalities), vision loss, and a wide range of cognitive and behavioral changes (e.g., dementia, hallucinations, psychosis, paranoia, depression, violent behavior, and personality changes). Tingling of the hands and feet is perhaps the most common neurologic complaint.2,41,42
The pathology of vitamin B12 deficiency on the nervous system is unknown.7 “
Other parts of the article state that there may be permanent neurologic damage from prolonged low B12. I strongly suspect that I have permanent damage of this nature which can’t be reversed.
At least the Doctors at Froedtert were smart enough to start giving me continuous B12 injections to prevent additional damage.  If your doctor is not checking your B12 get a new doctor quick.

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