My First Thought

Lately, my life has been a big rollercoaster of dreams and thoughts but no action. I lay here in bed and ponder questions like when am I going to be able to go back to school, am I ever going to get a good job, or will I ever be able to support myself? Things healthy people my age are doing at this time in their life I’m not able to do. Everyday I see my friends planning for when they graduate and what types of jobs their going to work towards. I then hide away in my mind wondering if that will ever be me.

Living with Crohn’s disease is not an easy task to say the least. I am constantly wondering how others my age are dealing with this illness and thought it might help one person, or many, to read my story and relate (as well as have an outlet to complain and/or celebrate my days of feeling great!). One of the major annoyances we face at all ages is my favorite, the famous “well you look great”. Yes, I admit when someone tells me I look good it boosts my confidence a little bit, but after a while don’t you just get sick of it? I want to say “take a look at my insides and then tell me what you think!”

But, a little bit about me.. My name is Michelle and I am 21 years old. I have had Crohn’s Disease since 2005 (well I was diagnosed then). I am a very active person as I was a dancer and gymnast most of my life. This disease doesn’t define my life, but that is only because I don’t let it. I have tried almost every treatment out there and am still finding myself in the hospital one to two times a year and on prednisone more than I want to be. I travel about 2 hours to see some of the best doctors in the country in Boston, MA and seek every opportunity in new treatment as I can. I have a very difficult case to treat and as you can imagine it gets frustrating. My support system is unbelievable though, which I am so lucky for. Most comes from my family, especially my mom.

At any age this disease is pretty shitty and embarrassing (pun intended), but you have to laugh about it. Admit it, we’ve all had our accidents and potty emergencies and we know our way around every bathroom in town. That’s just how it is. At my age, the college years, when you’re supposedly “figuring out who you are” this disease is especially hard. Relationships, partying, making friends, getting jobs, an education. This illness affects every part of your life whether you like it or not. It’s just about how you deal with it and who you surround yourself with. You could hide and let it consume your life with embarrassment and shame OR you could tell it how it is, make the best of it, and laugh your way through the hard, embarrassing times. It is ultimately up to you.

10 thoughts on “My First Thought

  1. I also have crohn’s and i have never taken medication for it. i was wondering if you feel like the meds actually help? Also for your sleeping problem, i use melatonin, it works wonders.

    • If I didn’t take medication with my case I don’t think I’d be alive to be writing this so yes it has helped tremendously. But, my brother is 24 years old and was just diagnosed a year ago. He was on pentasa for a little while but as your typical 24 year old guy he wasn’t taking medication 4x a day. Right now he is on no medication, eating great, working 40-60 hours a week, and feeling phenomenal. He has his days still but overall he feels good. It’s amazing how much this disease differs from person to person. And I actually have some melatonin in my med cabinet I’ll have to try that, thank you!! 🙂

  2. Its amazing how different it effects people, you’re right. I am 23 and was diagnosed just before my 21st birthday only because i had an abbsess that burst inside me slowly killing me causing me to get surgery. I had a foot of my intestines removed and part of my colon. The doctors say i should be on meds but i cannot afford it. Some people say that marajana is a good way to help with the pain which is what i use.

    Oh and no problem with the melatonin it should really help.
    I was also curious about how you said you have back pains. I also have severe back pain, in fact my whole body is always in pain. How did they go about figuring you had arthritis? my doctor mentioned that happens in most crohns patients.

    • My brother actually uses marijuana often when he has bad days. We’ve been lucky enough for it to be legalized for us in mass. He has convinced me at times to but it doesn’t affect me like it does him. When I’m not eating it helps a lot but it helps him with most of his symptoms. And I have used it for my back pain and it definitely helps. I actually have kidney stones from Crohn’s disease and had several ct scans where in one they accidentally found a herniated disk so looking more into it they did an MRI and found the degeneration in my bones. I have bad joints everywhere ever since I was little. I’ve gone to physical therapy for it but that doesn’t do much. It seems to be better when I’m not in a flare and feeling good but it’s still always kind of a pain (literally).

      • I am also from mass so we are lucky its legalized. do you guys have a medical marajuana card? i was thinking about getting one but dont really know how to go about it. it is seriously the only thing that gets me through the day. its sad.

      • I think marijuana can actually do wonders. It’s no different than me treating myself with conventional medication. In crohns all you can do is treat the symptoms. My mom has been trying to get one for me and my brother just because it’s a lot safer having one. I know someone with one and it’s basically a letter from the dr. But it comes at a cost. $200 a year just for the letter. Atleast from the doctor in Northampton we’d consult with. I’m pretty sure you have to go to a special dr for it but I don’t know that much about it. I’ll look into it and write a post on it after I do my research!

      • $200 is a little high but its safer having that piece of paper. i have been trying to look into it but i dont have internet, just my cell phone and it is a piece of junk, so i cant really do any research myself. any info would be greatly appreciated. Also thanks for sharing this on facebook and taking the time to answer my questions. someone i know liked your post and i really think its a great way to get out there and talk about crohns like you said we can try and talk to our friends or family but no one really understands until they are going through it.

      • I will do my research and share everything I find! If you have any more questions id be more than happy to talk about them and try to help you figure them out. Helping other people is helping me understand my disease more! We’re all in it together 🙂

      • Hi! I wrote a post on medical marijuana like I told you I would and I’m sure I will be writing more in the future! If you are interested in the doctor I found in Northampton I can give you her info just let me know! 🙂

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