Someone asked me to write a little article on what it is like living with Crohn’s Disease. I am happy to do so and actually I just had this conversation recently with my parents while they were visiting for Christmas. It is thus fresh on my mind.
Living with Crohn’s feels like being a prisoner. You are a prisoner with a spear at your back and that spear is real. You feel this hot constant pain near your spine that bleeds through to your stomach on the worst days. On normal days it is a dull pain that you are always aware of. There is no cure for Crohn’s disease, but there are forms of relief. I feel like it is a waste of $80 a month in copay for pills that just relieve the pain. Instead I purchase my medical marijuana and use that instead. It is accepted under the red card in Colorado as a relief. There are certain strains that help displace the pain from flare-ups.
People are quick to judge you if you smoke weed. In Colorado that outlook is quickly changing. Not many people know what it is like to live a life in a constant pain, especially those that are still young in years. This pain is not always terribly great, but it still feels like hot coals in your side throughout the day. That is the type of constant pains those with irritable bowel syndrome and other types of intestinal ailments share in common.
We actually learn to displace our minds from the pain after a time. We learn what foods not to eat and to never, ever eat those red or green peppers. That is a horrible idea. Many young kids with Crohn’s may have it a little easier or a lighter disease. Mine is most likely more advanced due to the fact that no one knew what it was before I was finally diagnosed in 2009 and I am 32 and drank my way through college. I had suffered from this disease forever, but there was no classification and thus it did not exist to doctors. I am sure modern medicine will come up with something to fix this soon and I truly hope they do. I honestly can’t tell you whether the acne medication I took was worth getting Crohn’s or not. They both suck.
-OM
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Hey OM – I am an Endoscopy nurse and have seen how painful it looks on the inside of a Crohn’s colon. You rock on with your bad ass take no prisoners attitude ! ( My opinion from reading some of your other posts) Glad the stuff is legal in your state and I’ll light a candle for your colon to stay in a remissive state.
Thank you I appreciate the kind words! 🙂
My empathy is infinite. While my autoimmune condition is very different, I know too well the constant pain, whether small or great and the displacement activity. Worse than the pain, I always find, is the rush to judgement of others. I was once outside in my wheelchair during a theatre interval. When I crossed my legs, I could hear the disparaging comments of a group of people nearby who clearly considered I was faking it. After all, how can you cross your legs if you’re disabled. Well, listen here, people: paralysis isn’t the only disability that requires a wheelchair. No intelligence and no imagination.
It is tolerable and I appreciate the kind words!
My heart goes out to you OM. I know that what you live with is a very difficult burden to bear. I pray that a cure can be found soon for Crohn’s and IBS. I have a granddaughter with IBS She has found that eating a gluten free and dairy free diet helps her a lot. (especially gluten free) A friend of mine is finding the same thing. No, neither one has celiac disease and they don’t have Crohn’s. I have no idea if gluten free helps alleviate some of the discomfort of Crohn’s or not. Good luck to you my friend.
Thanks Elaine that is very kind! -OM
I feel that it’s absolutely ridiculous that you should have to pay that much for medication at all. Some people don’t have even have an extra80 bucks to put towards anything.
It is, but that is the price for feeling “better.”
Acne medication? There’s a link?
I am told and I believe that an acne medication I took called “Acutane” caused many to get crohn’s disease. I am in a law suit now, I don’t expect to see a dime. But I believe it was. You can google it and find tons on it.
Wow. I’m glad I decided it was too expensive when the doctor prescribed it for my autistic son. I can’t imagine what living with him in pain all the time would be like. He already screams the house down every time he coughs.
Yea… it is now being sued hardcore for not having this or that approval.
I know several people with this disease. Wish there was an easy fix.
I hope there will be one day as well! 🙂
😉
I would recommend Reiki as an added modality to help with pain management. Anyone can learn it and is an amazing Energy.
I appreciate the advice and thanks for giving this a read!
I work with a woman who has suffered from Crohns for many years. It was originally misdiagnosed. She has recently undergone surgery to have her Chrohns cut out of her bowel and had a stoma put in. Unfortunately, the stoma hasn’t taken and she has to have further surgery to fix this. My wish is that the pain goes away for her. I have watched her suffer day in and day out, so I am able to empathise with you.
Thank you for the kind words. I normally wouldn’t write this article, but at a request I will. I appreciate people reading it. 🙂
And people simply to not realize how exhausting constant pain is.Even if when displacing it in your mind it still wears you out. So you’ll get no judgement here.
Thanks for giving this a read! -OM