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Quick thoughts because I need a place to vent

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Crohn's Disease
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Posted 12/7/2012 1:56 AM (GMT 0)
To whoever is reading this

I joined a CCFA webinar today on treatments and possible alternate therapies for Crohns and Colitis

They had a 45 minute QA session at the end of the call, and although the audience was asked to keep the questions general, most people were asking questions specific to their Children, Grandchildren, friends , and themselves.

I realized at that point how brutal this disease really is (I have had what is considered Severe Crohns for almost 20 years and have suffered for the larger part of that time - but it became such a part of my life that I just learned to live with it...it is a part of me at this point).  The reality is that there is no rhyme or reason to the disease.  Symtpoms are so different between each sufferer...Medications tend to be a blind throw at a dartboard, and the disease is so unpredictable that it is constantly a concern for sufferers.  The thing I realized is that there are no answers... it is just a bad disease.  Yes I know you need to stay on your Meds, watch the dairy (possibly gluten for people), stay away from the fatty foods...and then what...When you do all the right things and you still get the 15 BM's a day or the GI bleeds, etc... I just feel like the disease is so unpredictable, so pervasive, and untreatable. 

I know some of you will say that Humira or Remicade has done wonders...and what about when it stops working (I have been on Humira for 4 years and it no longer works).  What are the long term effects of these biologics, or 6MP, what about the massive doses of steroids we have all been on. 

Have I given up...Defnitely not... I know a cure will be found in my lifetime, and I know better treatments line Vedolizumab are on their way...and I know communities like this one are helping people get answers, talk about their disease, and just vent when needed.  As horrible as it sounds, it makes me feel better knowing I am not the only one going through this.

Thanks to HealingWell and the whole Crohns Community for their support since 2005.

Looking forward to a long remission a wishing a long remission for all of you

Keep posting...it means a lot to a lot of people

And thank you to everybody who has ever responded to a post...you are helping people more than you know...

 

Posted 12/7/2012 3:19 AM (GMT 0)
It is a brutal disease, it almost cost me my life this past August. We can't give up hope though, we have keep on fighting the battle for all of those people newly diagnosed or those who will be diagnosed.

You are so right, this forum and other support networks help to make the unpleasantness of this disease easier to bear. I mean there aren't a lot of people in my daily life that I would discuss bowel movements or my ileostomy output and how my new bag is functioning with! But everyday there are people here, reaching out, supporting people all over the world. It's astounding.

Keep smiling, keep laughing and keep believing that one day, hopefully soon, we will be rid of this awfulness and have on,y sunny skies ahead!

K
Posted 12/7/2012 4:38 AM (GMT 0)
Yes, stay positive! It's not denial, and don't let anyone tell you so. You are strong, and you will get through this, there may not be an answer to everything we are going through, but our pain has purpose. HealingWell is such a terrific community, I don't know what I'd do without. :)
Posted 12/7/2012 5:58 AM (GMT 0)
:) it felt so good to hear someone who has the disease be so frank about the matter. We often get bogged down by friends, family, doctors and the rest of our support system because we need to stay positive and constantly fight. Yet when people like yourself, who understand what this disease is like and just how hard the fight can be, just hearing that, someone saying its okay I know it's not easy every day, I don't know that one day everything will work out but I darn sure hope it does. Well hearing that relaxes me. Like you said crohns is very individual, everyone suffers differently, everyone's severity is unique and treatment is unique. Although no one will understand your situation is good to have a place to share your experiences with those who understand the most :)

I always need a good rant, sometimes I just need a good old moan. We may be broken but were still human. And if we don't hope, what else do we have left eh!
I too am so grateful for the crohns community and appreciate just how helpful everyone is.

Post Edited (novice) : 12/6/2012 11:01:31 PM (GMT-7)

Posted 12/7/2012 8:43 AM (GMT 0)
Thank you for posting what you did. I was just diagnosed in January this year, but I've been through a lot. And the people on this website helped me get through all of it, and helped me know what was "normal" for this disease, and what to call my GI about.
I hadn't heard of Vedolizumab, just did a lot of research on it. Thanks!
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