Crohn’s Disease Testing Nauseates Me.

 

scarecrow
Scarecrow in my garage trying to warn me about Crohn’s disease tests.

Before the doctors can increase my Remicade infusion frequency the insurance needs to be sure it will help me. Insurance companies don’t like to spend $17,000 – $23,000 every six weeks for my remicade infusions.  I sympathize with the insurance company because I don’t like going to infusions for the next twenty years even if they do seem to help my symptoms. I have mentally adapted to infusions because the procedure is starting to become almost routine to me.  There is no way I could pay for these infusions if the insurance didn’t take care of the bill.

In order to justify increased infusion frequency, it is necessary for me to take tests that make me want to vomit.  I have found out by recent experience that my mental threshold for causing vomiting is not that high.  It was necessary for me to get some help with the home tests because I simply couldn’t comply with the repulsive procedure for the home test without making mistakes and a gruesome mess.  I am sure other people can handle it but I just simply can’t do it no matter how hard I try.

The tests rule out any other condition that may be causing any symptom.  So far they are all negative which is a very good thing.  I already have sufficient pills, treatments and procedures for a fun time without adding anything new.

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My Remicade Infusions to be Increased in Frequency

cropped-100_0997-e1488588998256There are a lot worse things in life than Remicade infusions but that doesn’t mean I have to like them.  Doctor is going to increase the frequency of my Remicade infusions to every six weeks.  It may be a good trade off if it reduces symptoms of Crohn’s disease.  Having a needle poked in me and a 3 hour slow drip of Remicade is not my idea of a fun time.  It seems to raise my blood pressure and I have been told there is always a remote danger of some type of random sudden dangerous reaction but that has never happened to me. The nurses monitor pretty close and there is always a doctor in the general area.

By the way, if the nurse can’t get a needle started in you just have them wrap your arm in a hot moist towel for about 15 minutes.  Also, I have found it seems to help needle insertion success rate if you delay taking your blood pressure medication until after the infusion but I may be wrong on that.  I have veins that seem to give nurses a lot of difficulty.  The needle goes in and it looks like it is working but then it pops or something and they have to do it over.  At one hospital they had to try five times before they brought in a specialist who did it without any effort.  I always tell them right away to use the hot towel trick and it seems to really make a great difference in success rate.

I would be a lot worse without Remicade so I am glad someone invented the stuff.  There are more experimental medications being developed so I may switch to them after several years because Remicade will eventually lose effectiveness.  If I can hopscotch through multiple medications perhaps I can avoid any unnatural surgical plumbing arrangement for my guts.  I would take that as a win.

 

 

 

Another Colonoscopy in 6-9 months…..isn’t Crohn’s a blast of fun?

cropped-100_0997-e1488588998256
My son named our cat Frederick Engels 

Another Colonoscopy in 6-9 months…..isn’t Crohn’s a blast of fun?  I didn’t have any cancerous polyps in April 2017 but things looked so fascinating to the doctor that she wants to do another colonoscopy within a year to see if everything is hunky dory.  The Crohn’s appears to be kept in check by the Remicade but the doctors always seem to think that cancer lurks in every polyp and I always have at least one to snip out.  In addition I had a single fistulous opening, severe inflammation  and some gross things I won’t mention.  Remicade is not a panacea but things could definitely have been a lot worse for me.  I doubt that my insurance will pay for another colonoscopy so soon unless the doctor gets special permission.  It is good to know that colon cancer on polyps is easily treated if you catch it early but colonoscopies are really a bummer no matter what anyone says.

I suppose I could be more cheerful but I must admit complaining a little bit does make me feel better.  Complaining about an illness is like a cheap medicine so why not indulge in it.   The problem is most people don’t like to listen to you talk about it but don’t worry I write it down for my blog readers education and enjoyment!

Episode of Shivering in a 72 degree house.

I haven’tGlenn 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.

 

How to Prevent Crohn’s Disease … article review.

Dr Mercola’s website has a lot of good information about Crohn’s disease and general health.  True prevention of Crohn’s is difficult because the exact cause is not clearly understood as Dr Mercola says in the article link at the end of this post. Your medical condition is unique and you should follow the advise of your doctor but you could mention the ideas on Dr Mercola’s website to your doctor.

I have had some lousy doctors and some fantastic doctors for Crohn’s.  My first doctor for Crohn’s symptoms had no clue what I had. After many horrible tests he concluded my best treatment option was to go on a vacation from a stressful job and practice yoga. The problem was totally in my head according to him. Let me say that I have nothing against vacations or yoga.

Finally the pain in my gut got so bad one day that I went straight to his office and told him I was going to die right there in front of him. He proceeded to poke his hand in my belly and I then insisted he send me to a hospital at once. He asked me if I wanted a Taxi, Ambulance or if I wanted to drive. Reeling in pain I managed to mumble that a taxi would probably be OK.

I was unable to get out of the taxi so someone must have wheeled me into the ER. They did some tests and said they thought I had cancer. Surgery was indicated. I didn’t care about any of that until they gave me some morphine so I could tolerate the pain. Sounded pretty bad to me after that. Fortunately it turned out not to be cancer. There are worse things than Crohn’s.

mercola.com/crohns-disease/prevention.aspx

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

momlittle
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

Welcome to new reader from Australia….

glennjudyfancy…….Welcome to the new reader from Australia on the blog!  I believe you are the engineer with Crohn’s disease who likes to stay fit according to my statistics page.  I am a former engineer with Crohn’s disease but I don’t think I will ever be fit.  That’s because I am not trying. I followed your blog fitnessandguts because it looks interesting and maybe I will be motivated to get fit.  Thanks for liking one of my posts!