I wish to respond to the article in the November 9, 2011 edition of Yorkton This Week, titled ‘Crohn’s Awareness Month.’
The symptoms of this disease are horrific. My own consist of nausea, 25-35 movements a day, sleep deprivation, depression, weakness, vertigo, skin cankers and feeling flu-like 24 hours a day with the odd fever thrown into the mix.
I was fired from my job 3 years ago for being “unreliable”. I’d never been a recipient of health benefits because there was no diagnosis.
This is an expensive illness. At this point I need 3 to 5 Glucerna (meal supplements) a day and 2 Electrolytes. That alone is $13.45. Now add in up to 8 gravol per day at $1.92 plus the 4 Metamucil w/calcium pills a day at $.48 and the Immodium 3 times a day at $1.14 and the Acetominaphen to help with the pain of the inflammation, plus 2 rolls of toilet paper at $2.00 a day.
It costs me $18.99 just to get out of bed. That is a yearly cost of $6,955.
The article of Nov. 9 refers to the cost of an IBD patient on our medical system as being approximately $9,000 annually. That number could be greatly reduced, in my opinion. Here’s how:
#1. A patient buys the meds to purge their already over-stressed bodies in preparation for gastric scopes. OK, we do it because we want to know why we are sick. Well hello doctors... if you are going to put us through that, shouldn’t you be doing all you can by being thorough? Biopsy! Biopsy! Biopsy! It is the only way to detect IBD(s). Unfortunately, I had to be at my 3rd specialist before I was biopsied. Earlier detection may have helped my body accept the heavy medications, giving me a life again. As it is, my body rejects all those treatments, so far. So doctors.... wake up!
#2. If medications and food supplements were covered for us, many of us could sustain ourselves at home, reducing the need of hospital beds for feedings and rehydrating. The government could help us by working with our pharmacies, setting up a plan where all the “basic right to live” foods and medications are paid directly to the pharmacy. OR, insist our private insurance plans begin to cover things like Glucerna, once there is a doctor’s order and diagnosis in place. We pay top dollar for insurance, but can’t get the help.
#3. Stress is a huge instigator in flare-ups and so I feel a mental health group would totally benefit all IBD patients. Reduce the mental stress and the body should respond positively. Hence, less depression, less anxiety, less flare-ups, less doctor visits, less feelings of selflessness.
IBD patients live in a bubble, in a sense. We are all humiliated, embarrassed, socially neutered, emotionally torn-up. Some of us are financially broken, loveless and I think all of us feel depression occasionally, if not often.
Hey government: If you can help with Diabetes with free monitors, free insulin, free check-ups etc. and if you can help Alzheimers patients with subsidies for medications and respite, why not help us? Unlike Diabetes and Alzheimers, IBD patients, given the tools, can really do an amazing job of self-care. Try helping us and see how every tax payer wins when I’m not in the hospital, taking a bed for 2 weeks if it doesn’t have to happen in the first place.
Helping the 1 in 160 who have this illness in a proactive way can only be a benefit to every last one of us. That hospital bed can be used to save a life, while we, the “IBD gang”, maintain our health at home.
As soon as I get a grip on my own illness, I do plan to be a voice for this cause. Also, I’d like to start a support group so we don’t have to face every day alone with our toilet paper. I miss having social time and I think I’ll do something about that.