Monday, June 5, 2017

Living with Crohn's Colitis in 2017


​So, every 6 weeks, I have to have an IV infusion of a type of "Chemo-Therapy" drug called Remicade.

I have been on Remicade since mid 2001. 

Remicade + Immuran is what is keeping me alive, for all intents and purposes. (Immuran is a pill I take)​

This combination of drugs are used to combat Crohns Disease, the type I have, specifically, is: Crohns Colitis. 

Rare
Fewer than 200,000 US cases per year
Treatment can help, but this condition can't be cured
Requires a medical diagnosis
Lab tests or imaging often required
Chronic: can last for years or be lifelong
Crohn's disease can sometimes causes life-threatening complications.
Crohn's disease can cause abdominal pain, diarrhea, weight loss, anemia, and fatigue. Some people may be symptom free most of their lives, while others can have severe chronic symptoms that never go away.
Crohn's disease cannot be cured. Medications such as steroids and immunosuppressants are used to slow the progression of disease. If these aren't effective, a patient may require surgery. Additionally, patients with Crohn's disease may need to receive regular screening for colorectal cancer due to increased risk.

I read something from a Crohn's group I belong to on Facebook, where someone had financial difficulties and/or insurance challenges, and stated that it took about 5 weeks for the Remicade to "wear off", and for said person to begin to get sick again. 

5 weeks. 

At any given time, I am 5 weeks from getting very very sick. 

Its a very sobering thought for me. 

Once the Remicade wears off, it will begin gradually, but quickly morph into full on illness. 

I am so lucky to have the job I have, with the insurance I do. 

Be grateful that your immune system works correctly. 

Be grateful you don't have to give careful consideration to the types of foods you can or can not eat. 

Be grateful you do not have to be careful around inconsiderate people to come to work sick, thus putting your health at risk.  

I've not given up on a cure, but I am beginning to belive that it will not happen in my lifetime. 

H O W E V E R....

I will NEVER give in and submit to large intestinal removal for any reason. 

I will NEVER become a "bag" lady. 

I salute anyone who has the "Guts" (no pun intended there) to do it, the strength to undergo this, but it will never be me. I will never ever do that. 

Would I rather die than be a bag lady?  Many would not understand, but yes. I would rather die than have a "shit bag" attached to the front of my body for the rest of my life. 


That will never be me. 

So, for the time being, I hold on to the belief that if I keep my damaged diseased intestine intact, someday someone will be able to fix it. 

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