medicinal rope

THE END OF MY MEDICINAL ROPE?

(Or “I’m getting an F in Chronic Illness”)

 

Back in my school days I wasn’t the sharpest tool in the shed. Don’t get me wrong, I wasn’t a horrible student by any means (unless it involved math – couldn’t stand math!) but I also wasn’t “Mister 4.0”. Fast forward to my adult life and my Crohn’s diagnosis and I sort of feel like I am back in school. Only this time around I am a foreign exchange student. Who doesn’t speak the language. Who wears strange clothing and has questionable hygiene practices. Basically, I have no clue what the hell is going on.

 

The following is a list of medications/surgeries that I have taken and undergone in an attempt to put my Crohn’s into “remission”. My report card if you will.

 

Here, let’s have a closer look:

 

MEDICATION

GRADE

NOTES

PREDNISONE

B-

Student demonstrates a willingness to eat everything in sight. Student needs to work harder at gaining weight. His Road Rage is actually impressive. High marks for that.

COLAZAL

F

(Surgery for Fistula/Abscess)

C-

Student complained about “packing” in his butt. What did he expect? Also still complains about his bum being scarred. What is there to worry about? I’ve never heard of a beauty pageant with a “butt-hole” competition.

CIPRO

F

FLAGYL

F

Student complains about it ruining the taste of food. And the medication is “not doing anything to make him better.”

HUMIRA

F

Student complains about having to do the injections. And the medication is “not doing anything to make him better.”

CIMZIA

F

Student complains about having to do the injections. And the medication is “not doing anything to make him better.”

IVIG

B+

Student successfully overcame c.diff.

(Total Colectomy & 6 months later reversal of ileostomy)

A

Student lived through it. Props for that.

PENTASA

F

Student reports that it is “like swallowing Smurfs”. I don’t think he has the maturity to continue on this medication.

6MP

F

Student complains small bowel just keeps getting worse and worse. And the medication is “not doing anything to make him better.”

HUMIRA

F

 

Seriously though, before my colectomy I had reached the end of my medicinal rope. I had taken all of the courses and failed. Failed pretty miserably. My Dr. refused to try me on Remicade – since both Humira and Cimzia proved worthless I believe his thinking was I would just fail it as well. Trust me, I held onto that damn rope as long as I could. I refused to let go. Medicine was like the “gym class” of my Crohn’s and I was always a pretty decent athlete. Eventually though I realized that I was really turning the end of that rope into a noose and slowly placing it around my neck. Can you blame me though? I strongly believed in “Medicine.” And I was scared to death of surgery.

 

When I had my colectomy I weighed 120 pounds (I am 6’1” and usually weigh 180). After surgery I bounced back nicely. I gained 11 pounds the first week home from the hospital. Surgery; however, is NOT a cure for Crohn’s.

 

My reversal surgery was September 12, 2011. I then went all the way to March 3, 2013 without having a scope. On that day we discovered that Crohn’s was of course still hanging around and has now taken up residence in my small bowel. So, I started 6MP.

 

In August of 2013 another scope revealed that 6MP wasn’t doing anything. So, 6MP is doubled. Third scope in November showed yet again that 6MP was useless and my Dr. started me on Humira. This is the second time I have been on Humira. Honestly I feel that it is working. I mean, I feel fine. Of course, I ALWAYS feel fine. It is only when my Dr. takes a peek inside that he scratches his head and wonders how in the hell I function the way I do. My last scope was Friday January 31, 2014. Unfortunately I have failed Humira once again. The next step is to try Remicade. Will see what happens with that.

 

Sometimes I really do wish I was a foreign exchange student and Crohn’s was just a school that if you flunked out of it would be no big deal. I would be Dieter from Germany and when I fail out of “Chronic Illness” school my parents will move me back to Hamburg. And I will take up gardening and get my degree down at the Biergarten. Because hell, if you are going to garden anything it may as well be beer. Prost!

1 Comment
  1. Jeannie Reply

    What a nightmare you are living. When my 41 year old son was first diagnosed with Crohn’s two years ago, I thought good, they’ll give him a pill and he’ll be fine. That obviously was before I knew anything about Crohn’s. He has gone the Remicade route, prednisone, and is now on Humira–for a few months now. His worse symptoms were when he was initially diagnosed—diarrhea, bleeding, total exhaustion, etc. He never really had any horrible pain–thank God. His doctor is also shocked by the lack of symptoms he shows. The only way the doctor can tell what is going on is by CT scans and colonoscopies, then he is shocked by how severe his Crohn’s is. So far, no surgeries. Remicade did nothing for him, so now he is using Humira. Not sure when he’ll go in to be rechecked. I’m so sorry for all that you have gone through. It is a horrible disease. I did talk to a doctor once who does research, and he said that there was no doubt in his mind that Crohn’s would be curable in Brad’s (my son) lifetime. This doctor is a pediatrician, but he is also a research doctor. I certainly do hope he is correct. Best of luck to you.

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