Episode of Shivering in a 72 degree house.

I haven’t had one of these shivering episodes in a very long time. Felt like I was freezing in a 72 degree F house. I always keep the house rather warm because I can’t tolerate a chill. Don’t know if it was Crohn’s related but I hope this doesn’t become a common pattern for me. Couldn’t do anything but collapse into bed for about an hour with a mound of blankets over me. Now it feels like someone gave me a working over with their fists. Maybe it was just the onset of the flu and I am starting to feel better now.

Does anyone else with Crohn’s experience these types of episodes? Leave a comment if you do.

 

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Welcome to new reader from United Kingdom on my blog….

My mother and grandmother

Welcome to the new reader on my blog from the United Kingdom.  I have also read your blog and found the title quite unique.  It is apparent you know all about Crohn’s.  I wish your blog the best of success.  I have included the link below to your blog in case any of my readers want to check it out. Have a great day!

via A Real Pain in the Ass – 24 year old British bird with Crohn’s Disease and way too much to say

Colonoscopy is over !

…..Not real bad results and everything went easily.  Grafton Hospital is pretty good.  Doesn’t look like any major surgeries for Crohn’s are in the near future which is a very good thing from my point of view.  Some issues but these may be delayed by escalating the dosing of Remicade from eight weeks to six weeks if my insurance approves.   Insurance company will not like that but life is tough in the insurance business.  Just hope their money holds out.

The major point is no big surgery for me, at least right away.  No alterations to my lifestyle from Crohn’s are imminent so I’m happy.  Delay is the name of the game in Crohn’s because it is a slow acting disease usually.  Everyone’s case of Crohn’s is different so Remicade is not always the answer for everyone but it seems to be helping me even though its expensive.  Ultimately, we all die from something so I figure if I can keep my quality of life for a longer period of time that is a win.  The only complete cure I know of for Crohn’s is death.  It’s more important to get straight with Jesus for the real long run after I no longer have Crohn’s disease.

Colonoscopy Day Today so lets cut off some polyps…..

 ….Crohn’s disease is an opportunity to learn all about colonoscopies because you get to have them all the time even when you don’t want them.  They are especially memorable when the anesthesia is not quite right and you are basically awake for the entire procedure like happened to me a few years ago.  Hopefully, these doctors at Grafton Hospital got their act  together and there is no repeat of that type of entertainment.  They always say the prep is the worst part and that is generally correct unless you are sick for a week afterwards like happens to me just about every time but maybe not for this procedure.   Hopefully, they just snip off a few polyps and that’s it.  Unfortunately, the surgeons always like to cut out a piece of my large intestine in a later procedure because it is beginning to constrict near the small intestine and I am starting to run out of colon to slice up.  Maybe not today but the final end result when you run out of large intestine aren’t that pretty.

There are worse things than Crohn’s disease.  During my first surgery many years ago they told me I had cancer before the surgery which turned out to be false.  When I finally gained something resembling consciousness a nurse told me I had Crohn’s disease.  My response was “What’s that?”.  She said the doctor will explain it and walked away quickly.  I have gone many years without any really bad surgeries that would affect my lifestyle in a permanently negative manner so I hope that streak continues after this procedure.  Long stretches of taking Humira, Remicade and other medicines may have kept my guts in better shape than people used to fare without these medications.

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.)

http://www.cdc.gov/ncbddd/b12/manifestations.html

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.

Fun with Crohn’s Disease !

I have had Crohn’s related sores on the side of my body and legs for many years. The damn things hurt and they are starting to hurt more. The seem to be spreading out a little but they always have come in waves that go away during past episodes. If you brush the sores against something by accident they radiate a deep pain. I have told Doctors and Nurses about them but the only treatment seems to be using a special surgical soap. I have tested the surgical soap and it doesn’t work any better than any other type of soap.  The sores seem to just appear and stay for as long as they like, then they suddenly disappear for a period of time. As long as the sores go away I can’t really complain because I have seen the horrible Crohn’s sores on Wikipedia that other patients have. I am trying to keep this a positive post so I will not put any of those lovely pictures on this blog at this time.