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02-12-2017, 12:32 AM   #1
mackraslo
 
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This is me

Good Evening All,

My name is Mike and I am a 30 year old living in Vancouver Canada. I've been using this website for over a year now and I think it's time I wrote an introduction.

I have been dealing with "Symptoms of Crohn's Disease" and after seeing several specialists and a overwhelming amount of tests, have been told "My professional best guess is that you have Crohn's Disease.

Alas, no diagnosis after 5 years of pain and frustration. Not that a diagnosis would instantly grant me relief, but it is a certain kind of limbo not really understanding why I am constantly sick.

After trial and error, as well as myself bringing ideas into my Family Doctor, I have been on Low Dose Naltrexone, which seems to have helped my symptoms. I still have 24/7 fatigue, depression, off and on nausea, and get flares every few weeks to months, but I am doing a lot better than I originally was.

I really miss riding my bicycle. I need to vent a bit. I used to be a bike courier when I wasnt sick years ago, biking was my meditation, my gym, my escape, but now I am lucky if I have the energy to go for a ride once a month. I used to ride 9+ hours a day for work. Times change and I change with them. I now work in a Corporate Office space, which is pretty manageable and works out well for someone who is tired and sick all the time. It can be stressful at times, but I am slowly learning how to deal with the stress in a better way.

I'd really like to meet some new friends on here, people who understand the struggle we all have. Most of my current friends do not understand why I always have to cancel plans, or never want to do anything after work because I am so tired, so I have been feeling very alone lately.

As much as the depression consumes me sometimes, I still regain the part of me who is a survivor, who wants to thrive and overcome all the negativity this disease brings. I really enjoy all the threads on here, hearing all the support from people all over the world.

Thanks for having me, I wish you all the support and hugs I can provide.

-Mike
02-12-2017, 02:09 AM   #2
ronroush7
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Welcome, Mike. Have you had your blood levels tested to see if you are anemic. You mentioned there was no diagnosis yet. There is a support group in the forum for people who are undiagnosed. I hope you feel better real soon.
02-12-2017, 02:35 AM   #3
mackraslo
 
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I have low iron, so I have been taking iron supplements to help. Doctor said it looked fine last visit.
02-12-2017, 02:35 AM   #4
mackraslo
 
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And thank you very much for the support!
02-12-2017, 04:40 PM   #5
Jabee
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I'm sorry you haven't been given a firm diagnosis but only a "guess". It's more common than you think, though, and very frustrating. Is there a specific reason your doctors aren!t sure? Is there any other treatment you'd like to be on? Are the docs helpful?

I'm wondering if there is a Crohn's support group near you. Not that you want to spend all your time talking about crohn's, but you might find some people who understand what you're going through.
02-12-2017, 06:21 PM   #6
mackraslo
 
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I'm sorry you haven't been given a firm diagnosis but only a "guess". It's more common than you think, though, and very frustrating. Is there a specific reason your doctors aren!t sure? Is there any other treatment you'd like to be on? Are the docs helpful?

I'm wondering if there is a Crohn's support group near you. Not that you want to spend all your time talking about crohn's, but you might find some people who understand what you're going through.
I have no idea why they havent given me a firm diagnosis. They have prescribed crohn's drugs, crohns testing, and say that it is most likely crohns, but never have given me a diagnosis. The appointments usually end by them saying, "Well, if it gets worse, just make another appointment."

My CT Scans, Colonoscopies, Ultrasounds, blood tests, and whatever else I have done have all shown "Signs/Symptoms of Crohns Disease". I have inflammation and scar damage on my lower intestinal tract. My white/red blood count is off. My Testosterone and Iron are low. And I have a lot of Lymph nodes throughout my groin and stomach area which are enlarged... as well as one in my neck.

But, after all these years and tests, No diagnosis, no follow-up other than "if you get worse, make another appointment."

I feel so lost and I feel as if I cannot hold my life together anymore, its a supreme chore getting to work and making it home. Other than work and resting, It takes all the energy I can muster to make it out to Doctors appointments and blood tests ect.

Sorry for venting, it just flows out of me when I get a channel to speak about my issues. I just dont know what else to do.

Anyways, Thank you for the support and letting me talk about my problems, it really does help me some days to type out my frustrations and have other understanding people hear me out. Thank you very much
02-12-2017, 06:29 PM   #7
cmack
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Hey Mike,

Right on buddy! I'm so glad you joined us. I hear you with the fatigue thing and not being able to ride. I couldn't ride my motorcycle or bicycle for quite a few years. It is a tough road but we can walk it together. You can count me in as a friend. pm's are fine with me too. Looking forward to getting to know you bud!

Best regards,

Chris aka cmack
02-12-2017, 06:51 PM   #8
mackraslo
 
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Hey Mike,

Right on buddy! I'm so glad you joined us. I hear you with the fatigue thing and not being able to ride. I couldn't ride my motorcycle or bicycle for quite a few years. It is a tough road but we can walk it together. You can count me in as a friend. pm's are fine with me too. Looking forward to getting to know you bud!

Best regards,

Chris aka cmack
Hey Chris! Its always nice to find a local neighbour who knows how ridiculous this disease is. Beautiful British Columbia right on! Thanks a lot for the support and same back at you, count me in as a friend, always here to chat, listen to some venting, and just general support buddy.

02-12-2017, 08:39 PM   #9
cmack
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Mike,

Thank you so much for your kind words. I aspire to be your friend throughout this wicked journey. It is wicked. With that being said, I say what I mean and I mean what I say!

Your bud,

Chris
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