My Remicade Infusions to be Increased in Frequency

There 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.

 

 

 

Advertisements

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

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!

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….

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.