NF / THANKS to all the OFNr's that have donated to Crohn's and Colitis Foundation

[irishfield]

As the title suggests, I just want to send out a big THANKS to those members here(that our daughter hit up automatically from past years) that have donated to this worthy cause. It, the cause, seems to not get the fanfair of all the other terrible diseases out there. Maybe because nobody wants to talk about how that area of the body is working!

 

Anyhow.. some shameless for anyone that would like to help find the cure for this life altering disease. The fund raising walk/run/wheel she is participating in is on Sunday in Barrie. She also did the Richmond Hill one last year as well, the following weekend.. not sure of her plans this year.

 

Daughters story and donation page.

 

https://secure.ccfcfindthecure.ca:443/ParticipantPage.aspx?PID=9890&L=2&CCID=82&GC=GTv2

 

Edited June 4, 2010 by irishfield

[kickingfrog]

I've had an email from her in my in-box, but I was not opening it because I didn't recognize the name.

 

At least something kept me from deleting it.

 

Glad you posted something about it Wayne.

[Slop]

I will be doing my part here in Ottawa, getting the $5.00 car wash and $5.00 burger n'drink.

[ketchenany]

Irish, thanks for posting. It's not a disease most people can relate to. I know very well what your daughter has gone through. My wife was diagnosed at 22, six months after our first child. She went through the same symptoms, tests, medications etc. We were very fortunate to have found two amazing doctors. One actually had a twin brother with the illness.

They tried everything to control it. She had two more children and it came back stronger than ever. The surgeon/us finally decided it was time to operate after a long, long meeting weighing the pros and cons and success of the procedure.

 

She came out of it very fortunate, he removed more than he had said to try to stop it.

 

AND HE DID IT. That was back in '85 and free of it since.

 

She owes he life to those two Doctors, and over the years we have donated to the cause and hopefully a cure can be found.

 

Hope your daughter keeps her spirits up one day this thing will be wiped out.

[anders]

I too can relate my godfather had crohn's and my gf has colitis and goes from Bad to Worse, back to Bad. We support every year and are always hoping for a cure. The doctors cant believe that she is able to work or even get out of bed on most days due to her white blood cell count, but she is the strongest, toughest and most stubborn person i know...so there is no doubt she will get through it.

 

I sincerely hope all the best for your daughter and that she recovers fully and completely and lives a wonderful life!

 

Anders

[FLEX ROD]

It was scary reading your daughters story, as it sounded in the beginning as a carbon copy of my poor nephew.

 

The main difference is that the poor guy is still going through it right now, but I hear that he is now on new meds that seem to be helping the only problem is the cost $4300.00 every 3 months.

As I understand this is a new drug so it may be of benefit to look into it.

 

Good luck to your daughter,

 

 

FLEX

[irishfield]

She was going thru ~ $6000 of drugs every quarter Flex... surgery stopped all that for now! She now has two spots on her Colon...

[capt bruce]

Irish good to see pics of the daughter smileing , with great parents like she has , even with this terrible disease she has lots to be happy about , my wife has suffered from this since the birth of our first child and if I could change places with her I would , cant explain if you have never seen how much they suffer ,on a good day my wife 5' 10" and weighes 90 pounds. Right now with an infusion every 6 weeks after 3 bowel resections (cost of meds 6,000 , with 2,000 dollar clinic fee every 6 weeks), thank god I have a good job with great insurence,she gets by , but would not wish this on my worst enemy . If you can give to this cause , they need to find a cure.

[irishfield]

Thanks for adding that Bruce.. we'd talked privately before, but many don't realize just what goes on with Crohn's and Colitis.

 

We tie a rope to Jen so she doesn't blow away... You can see in her arms there's not much to her.. but she's been doing good and holding at about 108 lbs.

 

Advice to any parent here that has a child showing symptons of an eating disorder.. complaining they can't eat anymore and their stomach hurts or feels full. Years of making her sit at the table until she finished her supper or went to bed... you feel like a real .... when you look back!

 

Serious advise!! Contrary to popular belief.. you DO NOT need a referal to take your child to sick kids. Walk into emerg and skip the run around. Just wished we'd known that then!!.. instead of putting up with doctors that looked at her and thought.. young teen girl.. blonde.. bulimic to stay thin...

Edited June 6, 2010 by irishfield

[Billy Bob]

I also have Colitis but I think I am much more fortunate then others as it was diagnosed in it's early stages and now have it under control with the use of Colazal...http://www.salix.com/products/colazal/about.aspx

 

It started out about 10 years ago with my left eye bothering me until it got so bad I couldn't stand ANY light...went to a eye doctor for 2-3 weeks getting drops, shots in the eye and finally steroid pills to clear it up...I had a Iritis....http://www.webmd.com/eye-health/iritis... they tested me for everything under the sun and finally I was sent for a colonoscopy where they found I had Colitis.

 

I wish your daughter well.

 

Bob

[canoeing north]

I also have Colitis but I think I am much more fortunate then others as it was diagnosed in it's early stages and now have it under control with the use of Colazal...http://www.salix.com/products/colazal/about.aspx

 

It started out about 10 years ago with my left eye bothering me until it got so bad I couldn't stand ANY light...went to a eye doctor for 2-3 weeks getting drops, shots in the eye and finally steroid pills to clear it up...I had a Iritis....http://www.webmd.com/eye-health/iritis... they tested me for everything under the sun and finally I was sent for a colonoscopy where they found I had Colitis.

 

I wish your daughter well.

 

Bob

[canoeing north]

My wife went through a long struggle with Crohn's while giving birth to 2 healthy and great kids which are now 16 and 20 years old . The picture of your daughter reminds me of my wife 25 years ago . She got as low as 80 lbs at times but being the strong person she is she would move on without a complaint . She ended up getting a Colostomy around 8 years ago and is now living without the pain she probally endured for years and for the most part her life is back to normal . A colostomy is probally an operation that most Crohn sufferers do not want to think about but beleive me the quality of life for the patient will improve dramatically .

A month ago we had the MM Meats fundraiser and seen another great turn out from the community .

All the best to your daughter and if she ever has any questions or experiences that she needs to share with someone going through the same lifestyle , my wife is very supportive .

[tightline]

Hey Irishfield thanks for bringing this topic to light...I'm a 36 year old male who suffers from Crohn's and have been off work most of the week battling an episode. It's a pretty tough disease to talk about because of like you said the parts of the body it affects. I have a few good friends that know what I go through because there good friends and I can talk to them. Lots of people don't understand the magnitude of pain and suffering that go along with this disease and it makes it easy to pass off as nothing.

 

I was diagnosed at 17 and have been in and out of hospital over the years. I've tried all sorts of remedies to combat it but in the end<---no pun intended it wins every time. I'm fortunate enough not to have had surgery yet but I can tell over the past few years that it is progressing as the attacks come more frequent and have been lasting longer. My thoughts go out to your daughter as I know what she suffers with on a daily basis not only the physical but the embarrassment and emotional side of it too. There are some great companies out there helping the cause like the M&M meats BBQ <----like a big juicy hamburger and a coke are going to help me...hahahahaaa but the funds they have raised over the years goes to research that may help so I drop in a 20 every year and skip the meal.

 

I would love to donate to your daughters walk if you could PM me the info on who or where to send a check I would gladly do so asap...Send her my thanks and prayers as a fellow sufferer I know how hard life can be dealing with this. I've lost jobs, disassociated myself from some people who find it amusing, and on one occasion was so depressed with my quality of life I considered ending it. The gross totality of it is IT SUCKS damn HORRIBLE so if you could OFC'rs dig deep this cause gets very little recognition, and affects every aspect of a sufferers quality of life.

 

Thanks again Irishfield and Best Wishes for your Daughter

[irishfield]

She hasn't raised near as much as previous years.. but she's almost filled the goal she set.

 

Here's the link again..

 

https://secure.ccfcfindthecure.ca/ParticipantPage.aspx?PID=9890&L=2&CCID=82&GC=GTv2