Crohn's Disease/Colitis

[BROCK]

This might be too personal for some but I was just wondering if there are any other members here that have Crohn's Disease or Colitis?

I was diagnosed with it 1991.

I'm in the beginning stages of starting a support group and just thought I would share something a little personal about myself.

 

[yorkem]

This might be too personal for some but I was just wondering if there are any other members here that have Crohn's Disease or Colitis?

I was diagnosed with it 1991.

I'm in the beginning stages of starting a support group and just thought I would share something a little personal about myself.

I have Crohns. It sucks! I get remicade infusions every 8th Tuesday, which is a 4 hour IV, and that has been controlling it pretty well for me for the past couple of years.

 

[Smallville]

Not me, but I see quite a few people who have it when I am selling Life Insurance. It's not generally anything that affects your rates a whole lot.

 

[BROCK]

I have Crohns. It sucks! I get remicade infusions every 8th Tuesday, which is a 4 hour IV, and that has been controlling it pretty well for me for the past couple of years.

I have had a handful of surgeries and as of right now do not require any meds.

I've never had Remicade but I feel for ya though. The disease sucks and can be very painful at times.

 

[BROCK]

It's not generally anything that affects your rates a whole lot.

Just my golf game!! That's my story and I'm sticking to it :confused2:

 

[Super Tuna]

Not me but my wife sits on the board for a Crohn's/Colitis support group that does a tone of out reach stuff. If you need a hand or just someone to bounce idea's off give me a shout and I'll dig up all the contacts.

 

[BROCK]

Not me but my wife sits on the board for a Crohn's/Colitis support group that does a tone of out reach stuff. If you need a hand or just someone to bounce idea's off give me a shout and I'll dig up all the contacts.

That would be great. Any advice is always welcome. Never can have too much info.

 

[yorkem]

I have had a handful of surgeries and as of right now do not require any meds.

I've never had Remicade but I feel for ya though. The disease sucks and can be very painful at times.

I've had a couple surgeries too, but, I know some folks that have it a whole lot worse than me so I try not to b!tch too much. You have any food issues? I have a couple, but my 1 major issue is beer, which sucks, because I loved beer.

 

[DawgDaddy]

My oldest daughter had ulcerative colitis, she passed away in 1992 from some complitations.

 

[BROCK]

Can't say that I have any kind of issues right now. Things are going good at the moment. I usually eat what I want without any reprocussions.

I get the occasional cramp but otherwise I can't complain . I was at a support group today and there are definitely people worse off than me right now. As you know though, when you're sick there is no one worst off than you!

 

[Perkins Rooster]

I have crohn's. I'm on Humira every 2nd week. Diagnosed in 1999. IBD sucks.

 

[Perkins Rooster]

My oldest daughter had ulcerative colitis, she passed away in 1992 from some complitations.

My worst fear for my 2 year old daughter. I'm so sorry to hear that. They say IBD isn't fatal but I do hear about deaths every now and then.

 

[BROCK]

My oldest daughter had ulcerative colitis, she passed away in 1992 from some complitations.

I'm very sorry to hear that!! How old was she? Treatment has improved but it's usually something people don't perceive as fatal.

 

[KellyBo]

I have Crohn's but I'm in remission and have been for about 13 years after having emergency surgery and being so sick for a while. I do suffer from IBS since the surgery though. It can be pretty miserable at times. I don't take one day of remission for granted because I know it can rear its ugly head at any moment!

 

[bert]

My wife had Colitis when she was very young (5 or 6 years old) but hasn't had any problems since then. She is now 49. Back then it could have been misdiagnosed--who knows.

 

[DawgDaddy]

My worst fear for my 2 year old daughter. I'm so sorry to hear that. They say IBD isn't fatal but I do hear about deaths every now and then.

I'm very sorry to hear that!! How old was she? Treatment has improved but it's usually something people don't perceive as fatal.

She was 21, it was not the actual colitis that did it, it was the internal pouch they constructed inside here that caused the problem. Long story shor,t the pouch ruptured and it poisoned her internally, even though she got to the hospital quickly when it happened they could not clean the infection up and she passed away after a month of pain.

 

[Chunkylover77]

Man DD I am so sorry to hear about that.

 

[Super Tuna]

DD, I'm very sorry to hear that.

Brock: This is their website: http://www.weneedideas.com/
If you use the contact us email on the bottom it goes to the founder. I'll see about getting you the rest of the direct contact info as well.

For anyone else reading: They're very happy to help anyway they can regardless of where your located. They don't bite, I promise, and it never hurts to have someone else to talk to.

 

[tdinbr]

My wife has Crohn's but it has been in remission since she had surgery many years ago to have a large section of her intestines removed.
We have been very lucky that she has not had any flare ups since then....

 

[yorkem]

My oldest daughter had ulcerative colitis, she passed away in 1992 from some complitations.

Wow DD, I am really sorry to hear that...I don't even know what to say.

Can't say that I have any kind of issues right now. Things are going good at the moment. I usually eat what I want without any reprocussions.

I get the occasional cramp but otherwise I can't complain . I was at a support group today and there are definitely people worse off than me right now. As you know though, when you're sick there is no one worst off than you!

I was coming off of knee surgery when I first started my symptoms, and went undiagnosed for a year and a half. Literally suffered through malnutrition for 18 months. Lost 30 pounds and was under 170 (I was between 195 and 200 lbs since I was 17). Finally got diagnosed and the first 2 drugs they tried put me in the hospital with side effects, and then tried the Remicade. It is a miracle drug for me. I felt better the very first day on it. Unfortunately, my metabolism went to crap and I gained 50 lbs fast once I started gaining weight again. I am now stuck between 215-220, and my wife and family say they would rather see me 20 pounds heavy and healthy than 30 pounds light and sick. I woud have to agree.

 

[KellyBo]

Wow DD, I am really sorry to hear that...I don't even know what to say.



I was coming off of knee surgery when I first started my symptoms, and went undiagnosed for a year and a half. Literally suffered through malnutrition for 18 months. Lost 30 pounds and was under 170 (I was between 195 and 200 lbs since I was 17). Finally got diagnosed and the first 2 drugs they tried put me in the hospital with side effects, and then tried the Remicade. It is a miracle drug for me. I felt better the very first day on it. Unfortunately, my metabolism went to crap and I gained 50 lbs fast once I started gaining weight again. I am now stuck between 215-220, and my wife and family say they would rather see me 20 pounds heavy and healthy than 30 pounds light and sick. I woud have to agree.

Yorkem - my CD was just the opposite. It came out of nowhere and had done so much damage by the time my symptoms appeared that I had to have emergency surgery. I remember losing about 30 pounds in no time. Unfortunately I found it and then some!

 

[BROCK]

I was in the Army deployed to Panama when I first got sick. I went from 192 to 145 in six weeks. Finally was shipped back to the states. Went through a bunch more testing at Walter Reed and was basically kept on a maintenance plan with some prednisone and other meds. After I was discharged, 2 months later I had surgery at Cleveland Clinic. I have to say that the time leading up to the first was some of the worst pain I have ever felt. I wouldn't wish it on anyone.

Anyways, I weigh about 235 now and could stand to lose some weight.

My goal is to get in game shape for the THP outing and help bring Team Jones to victory lane!

 

[dadoffive]

Just saw a reference to this thread, so I thought I'd wake it up. I was diagnosed with UC when I was in High School. Managed the disease with sulfa drugs, prednisone, cortisone enemas, etc. for 11 or 12 years until I had my first of 5 or 6 surgeries in '93, most recent 2006. I've had a permanent ileostomy since 2004 (yeah, I'm the golfer with the extra "bag" on the course).

Normally, the ileostomy doesn't get in the way, the hardest part being the timing of meals. As I have no control when my "****** little friend" wants to be active. It makes eating a "decent" meal before a round of golf difficult as it is almost always active within an hour or two after eating, and some of these tracks do not have "decent" facilities for emptying, unless your at the club house.

While playing, if its active, the pouch will start to balloon. Being LH'd and the pouch is located on my left abdomen, I try to protect it (not hit it during backswing...), which leads to an "outside" takeaway... at least that's what I blame my slice on!