• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Day by day

Crohn's disease is my affliction but not my definition. I am 46 years old, I am a husband, father of 3, grandfather of 1 and football coach of many over 25 years. I struggled with what I thought was a spastic bowelost of my life but in 2006 after thinking I was having pain from ulcers and irritable bowels from stress I avoided Dr's. I began to have severe pain in my rectum but chalked it up to a problem from fissures I had battled for a few years. I sought some medical treatment in Feb. and started a Celiac diet(no help). In August of that same year I rapidly went from 200 pounds to my lowest 106 on Sept 15th and was admitted to the hospital. It was there that we discovered my Hemoglobin count was 4 and I was in walking dead. After several days of testing I found out that I had several fistulas and miraculously the drainage formed a softball sized abscess in my right glute that was pushing my rectum over about an inchand a half causing the severe pain. After consulting with the medical team and weighing options to fly to Cleveland clinic for maybe a state of the art procedure or to let Dr Barbe a terrific (IMHO the best)colorectal surgeon do his best to see if he could save me. Well after 18 hours of operating to remove several areas of massive infection and resections with an Ileostomy along with removed alll of the infected tissue in the glute he saved my life. After I left the hospital almost 40 days later I learned from my mother a retired nurse that they gave me a 5% chance to ever leave. I never really knew how bad off I was and I guess that is one of the things that got me through it, may attitude. I always expected to make it. After 1 year my ostomy was reversed, although I would have kept it(I felt safe and in control) my wife talked me into attempting he reversal. I now weigh about 170 and I am 6'3". Crohn's has changed my life dramatically but in my case I consider it a blessing and a curse. It bankrupted my family, we lost everything to medical bills including our 3 businesses my wife and I owned when I went in, we lost our house and struggled to make ends meet. On the positive side I learned the true value of the people in my life, found beauty and contentment in every little thing I took for granted and just found a whole new appreciation for living and living with purpose. I rely completely on God. Now I just take it day by day, I never used to be late, now I never wear a watch, God will put me where I need to be, when I need to be there. When I have bad days, I am just thankful I have days, when it stretches to weeks I try to remember just how far I have come. I pray for everyone who has this condition and battles the pain and uncertainty that go along with this disease. I have somewhat adjusted to my almost 10 year new normal and just try to do what I can do when I can do it. I have some physical limits and of course have days where leaving the house is no option but I do have days and each one I consider a gift. I have tried several different meds and most did not work, my system is very small now and I fast when I know I should be somewhere with my kids, my wife or my team. I have had success with a bile reducing powder I started about 3 years ago when I was home bound for about 3 weeks with attacks, it was usggested by my general Dr. and it has given me some type of reliability on my bowel situation but I still wear several layers of clothing just in case. So that is the short story. But I have pretty much been through it all over the course of the last 9 years so if I can help anyone in anyway I hope to be of service. God Bless You all. No Limits, not as long as we have a sound mind and a fighting spirit. - Coach V.
 
Hi, Coach :)

Welcome to the boards! You sure have been through a lot. Like you, I was told after the fact that I was near death and my odds going in were not good; in fact, it happened to me a couple of times. But I'm still here, I'm in remission, and doing good. Having this disease does change a person's perspective. It's up to the individual to decide whether or not to take a positive one, or a negative one. I struggle sometimes with the usual 'why me' syndrome, haha, but I feel I've taken a positive perspective overall.

Thank you for joining the group and sharing your story!
-Autumn
 
Put me in the game Coach!

Sorry to hear what you've been through, looks like you have a positive mindframe though. Best of luck!
 
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