It's been a while since any of us have posted anything here - would really like to get these blog posts going again and get some new people on here sharing their life stories and their battles / successes with Crohn's. If you're interested - email me.
My life over the summer has been pretty crazy. For those of you who keep up with me, you know I'm pretty OCD with my running and I this year I started competing in triathlons. Got 2 triathlons under my belt & was training pretty steady for running a full marathon this fall... Then the wheels fell off...
Not literally off my bike... but I ended up with a stress fracture in my left shin. What does than mean to a runner - NO RUNNING for 12 weeks!! So I have not run since the first of July, until today. The doctor has now cleared me to run and I was able to get out and run 1 mile today. Thank Heaven for the small things in life.
Have to wonder in the back of my mind if the stress fracture might somehow be tied to Crohn's and the lack of nutrition that our bodies get and keep inside. I was not training hard and was not increasing my mileage severely - I guess anything could happen and cause a stress fracture, but have to wonder what role Crohn's played. Probably will never get the true answer this side of Heaven.
Still taking Humira on a regular basis - 1 shot every two weeks. I take Pentasa, but have the biggest struggle trying to remember to take it 4 times a day. When I take it I can tell that I feel better, but dangit - why can't they just make it one pill a day. We Crohn's patients do try to have a life - & trying to fit those pills every 4 hours into a schedule is tough. Should be that tough, but it is...
Hope you guys / gals are doing ok out there & we'll chat again soon.
Tuesday, September 29, 2009
Tuesday, June 16, 2009
Why I Run
I often get asked why I run? Why would I put my body through the training to be able to do triahlons and marathons and ultimately IronMan. Why would anyone put themselves though this? Why would you give the most precious commodity the we all have in our lives - time. Why would you want to give when Crohn's, the disease racking your body every day, only wants to take.
Put simply I run because I can. I say that not out of any type of arrogance but out of the knowledge that there was a time in my life that I was bedridden and simply struggled with the basics of life - and the unfortunate knowledge that I may one day return to that state. So here I am, Carpe Diem & running because, and while, I can.
Those of you who know me, know that I do not wear my Crohn's on my sleeve. I know that it influences my life and my daily decisions, but I refuse to allow it to define who I am. I am not a Crohn's patient who is able to do all of these things - I am a man who does all of these things and manages a medical aspect of his life. It is also fun to talk to people who we have known since we moved to Dacula (3 years ago), who have had some involvement in our lives and then find out "oh by the way, you know I have Crohn's, right?" It just doesn't come up and I refuse to be known as "that guy with Crohn's" - wow, I'm rambling.
But there are times when God opens up the Crohn's door for us to be a support to family and friends who are potentially struggling with this horrible disease. One of those doors has been open recently with some new friends in our Sunday School class.
Their son has been a pretty sick little boy and the docs just can't seem to get a handle on what it is. Any of you with Crohn's or Colitis understand this process. Test after test after test. His next test is tomorrow morning at 6am - the dreaded scopes (need I say more). Please be in prayer for this family and pray that the doctors can find what is going on. Only then can treatment truly begin. The unknown is the hardest part, but there is a possibility that this is Crohn's or Colitis.
I don't know if any of you will be willing to take time to do this tomorrow morning - but I'm going ask. I have been running in the morning and tomorrow, am scheduled to run 4 miles. My commitment is to run these 4 miles in honor of Chase, because I know that tomorrow morning at 6am, he can not run. I feel strongly the need to run for those who can't. Tomorrow is my hill run day - so I will have 4 miles of peaks and valleys of one on one...Me & God time to pray for this little guy. Any of you willing to dedicate your morning run miles tomorrow to Chase and to pray for him while you run.
If you can't run early at his procedure time - then just run anytime during the day. His mom and dad need your prayers all day long, just as much as he does. Pray for their peace.
I pray that God will guide the hands of the doctors to find out what is wrong. I pray with all my heart it is not Crohn's or Colitis - I would wish this disease on my worst enemy. But if it is, Then I pray that God will provide the love and support that this young man and his family need... right now.
Why do I run.... I do it for those who can't.
Put simply I run because I can. I say that not out of any type of arrogance but out of the knowledge that there was a time in my life that I was bedridden and simply struggled with the basics of life - and the unfortunate knowledge that I may one day return to that state. So here I am, Carpe Diem & running because, and while, I can.
Those of you who know me, know that I do not wear my Crohn's on my sleeve. I know that it influences my life and my daily decisions, but I refuse to allow it to define who I am. I am not a Crohn's patient who is able to do all of these things - I am a man who does all of these things and manages a medical aspect of his life. It is also fun to talk to people who we have known since we moved to Dacula (3 years ago), who have had some involvement in our lives and then find out "oh by the way, you know I have Crohn's, right?" It just doesn't come up and I refuse to be known as "that guy with Crohn's" - wow, I'm rambling.
But there are times when God opens up the Crohn's door for us to be a support to family and friends who are potentially struggling with this horrible disease. One of those doors has been open recently with some new friends in our Sunday School class.
Their son has been a pretty sick little boy and the docs just can't seem to get a handle on what it is. Any of you with Crohn's or Colitis understand this process. Test after test after test. His next test is tomorrow morning at 6am - the dreaded scopes (need I say more). Please be in prayer for this family and pray that the doctors can find what is going on. Only then can treatment truly begin. The unknown is the hardest part, but there is a possibility that this is Crohn's or Colitis.
I don't know if any of you will be willing to take time to do this tomorrow morning - but I'm going ask. I have been running in the morning and tomorrow, am scheduled to run 4 miles. My commitment is to run these 4 miles in honor of Chase, because I know that tomorrow morning at 6am, he can not run. I feel strongly the need to run for those who can't. Tomorrow is my hill run day - so I will have 4 miles of peaks and valleys of one on one...Me & God time to pray for this little guy. Any of you willing to dedicate your morning run miles tomorrow to Chase and to pray for him while you run.
If you can't run early at his procedure time - then just run anytime during the day. His mom and dad need your prayers all day long, just as much as he does. Pray for their peace.
I pray that God will guide the hands of the doctors to find out what is wrong. I pray with all my heart it is not Crohn's or Colitis - I would wish this disease on my worst enemy. But if it is, Then I pray that God will provide the love and support that this young man and his family need... right now.
Why do I run.... I do it for those who can't.
Friday, November 7, 2008
Running the Race
No updates from me in a while so I thought I would take a minute to share what is going on in my life & dealing with my Crohn's... This is cut from my personal blog, but I thought it might be relevant here today.
Wow... how time flies!!! Seems like no time ago I was just getting started back into running & here I am ready to head out to my first half marathon tomorrow in Chickamauga, GA. I know I am really bad about keeping these notes up to date, but I figured since the entire reason for starting this was to keep track of training progress to my running my first half marathon, I should at least update it today.
I started running again in September 2007 - with my motivation being to run with the Crohn's & Colitis Foundation Team at the ING Marathon in Miami last January. Well, with the best laid plans and intentions, I was not able to make that trip as life got in the way. But I found something in running, and that training, that I had forgotten about. There is a peace and clarity of thought for me when I run, that really doesn't come any other time. I think a lot of that is because I take my running time to get alone with God and just talking about... everything.
You have to keep in mind that up to this point in my life, I have not run in almost 18 years - since high school. Most of the reason I have not run is from fear of what running will do to my body because of my Crohn's. Fear of not finding a bathroom soon enough - fear of some adverse reaction to my medications while I run - fear of.....Crohn's. But as of late I have come to a realization that I refuse to live my life in fear and that even if all of these things do happen - I will not be a victim to Crohn's anymore.
So here's to the Battlefield half marathon... Ready to run. Pictures and commentary to follow after the race.
Wow... how time flies!!! Seems like no time ago I was just getting started back into running & here I am ready to head out to my first half marathon tomorrow in Chickamauga, GA. I know I am really bad about keeping these notes up to date, but I figured since the entire reason for starting this was to keep track of training progress to my running my first half marathon, I should at least update it today.
I started running again in September 2007 - with my motivation being to run with the Crohn's & Colitis Foundation Team at the ING Marathon in Miami last January. Well, with the best laid plans and intentions, I was not able to make that trip as life got in the way. But I found something in running, and that training, that I had forgotten about. There is a peace and clarity of thought for me when I run, that really doesn't come any other time. I think a lot of that is because I take my running time to get alone with God and just talking about... everything.
You have to keep in mind that up to this point in my life, I have not run in almost 18 years - since high school. Most of the reason I have not run is from fear of what running will do to my body because of my Crohn's. Fear of not finding a bathroom soon enough - fear of some adverse reaction to my medications while I run - fear of.....Crohn's. But as of late I have come to a realization that I refuse to live my life in fear and that even if all of these things do happen - I will not be a victim to Crohn's anymore.
So here's to the Battlefield half marathon... Ready to run. Pictures and commentary to follow after the race.
Thursday, October 9, 2008
Petiton against NICE withdrawing Infliximab and Humira for maintenance
Hi there guys and gals,
First of all, I'm really so sorry that I haven't been around for quite a while now. I've had a lot going on, but it's still not really an excuse to be so quiet :(
Just wondered, if any of you know about what NICE (National Institute of Clinical Excellence) in the UK is proposing to do? Well, don't know if you have heard of either Infliximab (Remicade) or Adalimumab (Humira), which are anti TNF drugs used in the treatment of Crohn's disease. Well, basically, they are considering withdrawing both these treatments for maintenance purposes, which could potentially be devastating to many Crohn's sufferers who are currently being treated with these medications to help keep their Crohn's under control (including me). For me, Infliximab has been my lifeline, and I truly do not know what I would do without it.
If you want to know a little more, there is some info on the NACC website (National Association for Crohn's and Colitis) found at http://nacc.org.uk Then click on the " NICE Anti TNF Therapy Guidance" box for more information.
I would be so grateful (and I'm sure so will many others) if you would take the time to sign this petition - please click on the link below. Unfortunately it is only open to UK residents or expats, but obviously there is strength in numbers, so the more people we can get to sign, the better chance we have. We have to collect 200 plus signatures before 15th October, so we don't have long. Thank you so much in advance for your support, it is hugely appreciated.
Ok, so here's the link:
Thanks again, and best wishes to all, Ruth xx
Tuesday, September 9, 2008
Crohn's Disease - Living with Crohn's Disease: Signs that You are a Chronie! (Ahh, Love Crohn's Disease Jokes)
OMG!!! This had me in stitches. I definately could relate.
Thanks Scottie Roy.
Crohn's Disease - Living with Crohn's Disease: Signs that You are a Chronie! (Ahh, Love Crohn's Disease Jokes)
Thanks Scottie Roy.
Crohn's Disease - Living with Crohn's Disease: Signs that You are a Chronie! (Ahh, Love Crohn's Disease Jokes)
Monday, August 18, 2008
Wanted to share
This is the update on my surgery. I don't feel like posting twice so I am just gonna link you to my other blog. Hope you all are great.
Two Steps forward...
Two Steps forward...
Saturday, June 21, 2008
Sussman at sea
Special thanks to Joe who commented on a previous post for turning me on to what Ari Sussman is doing to raise funds for the Crohn's & Colitis Foundation of America.
Here's Joe's comment - "Three years ago a good friend died from post-op complications after his colostomy. He was 26 at the time, and as you can imagine it was a huge tragedy all of us in his life. Another friend is now sailing across the Atlantic, and using the opportunity to raise money for Crohn's and Colitis research (he has secured a $10,000 matching grant). Part of the inspiration for this campaign is the adventurous spirit of our friend Yossi, who passed. The campaign can be found here: https://www.thepoint.com/campaigns/sussman-at-sea. I hope this is something you find interesting and share with your community here at Confessions of a Crohn's Patient."
Click on the link and go check out where he's doing and where he's at now in his quest. Give if you can. This is a pretty cool way to raise awareness and money at the same time. Hopefully he'll get to his goal of $20K.
Here's Joe's comment - "Three years ago a good friend died from post-op complications after his colostomy. He was 26 at the time, and as you can imagine it was a huge tragedy all of us in his life. Another friend is now sailing across the Atlantic, and using the opportunity to raise money for Crohn's and Colitis research (he has secured a $10,000 matching grant). Part of the inspiration for this campaign is the adventurous spirit of our friend Yossi, who passed. The campaign can be found here: https://www.thepoint.com/campaigns/sussman-at-sea. I hope this is something you find interesting and share with your community here at Confessions of a Crohn's Patient."
Click on the link and go check out where he's doing and where he's at now in his quest. Give if you can. This is a pretty cool way to raise awareness and money at the same time. Hopefully he'll get to his goal of $20K.
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