Crohn's Discussion Group

My Life’s Story Dealing with Crohn’s Disease
CROHN'S DISCUSSION GROUP·THURSDAY, OCTOBER 25, 2018·
The main reason I started this page is because I have so much information I can share with people that have been affected by this horrible disease. Secondly, I'm going to share my story. Needless to say there is some information about me that some people don't know and that I've tried to keep to myself for many, many years. I was diagnosed with Crohn's Disease at the age of 10. Not able to eat and losing weight rapidly. I still remember the day they told my Mom what was wrong because they took her out of the room, and when she came back, I knew she had been crying and that something must have been very wrong because this was the strongest woman I've ever known and if she was upset, something must have been terribly wrong. Well, a few weeks in the hospital and some aggressive treatment with Prednisone, I started eating and gaining weight, so I was able to go home. Had many flares of the Crohn's throughout my teenage years and on and off the Prednisone. Here comes the part of the story that a lot don't know about and this is so hard to share, but if it helps even one person, then it was well worth it. The year is now 1991 and I'm 21 years old. That Summer I started feeling ill, but made the mistake of keeping it to myself. By the time August came around it got to the point where I couldn't hide it anymore. Had some testing done and was admitted to the hospital late August, early September. The doctors tried major doses of Prednisone, but I wasn't responding. Then the internal bleeding started getting worse and had to go to Intravenous feeding because I couldn't eat at all and even if they had said it was okay, I had no appetite at all. So, we're a few weeks into my hospital stay when the internal bleeding got so bad, one morning at 2 AM they transferred me to the I.C.U. I bounced back and forth from D3 to I.C.U. My blood count would fluctuate to the point they would tell me, if it stays at this certain point, you can go home, but that was never the case. They are still feeding me intravenously and giving me blood transfusions a couple times a day, my weight is falling faster than the Wall Street crash of 1929. We are now late October and they were finally able to do a Colonoscopy. The doctor says there's nothing left of my Large Intestines, he says it's like raw Hamburg, but fortunately the Small Intestines look good. So, on 10/31/91 (yes Halloween) the plan is to operate. When admitted into the hospital I weighed 175 lbs. The day of the surgery, I weighed 134 lbs. The plan is to remove the Anus, Rectum and all of the Large Intestines, so I'll have to wear a pouch over a Stoma (now the opening where stool will drain into) on the outside of my body. I left my room the morning of surgery at 9 AM and didn't return to my room until 10 PM that night. I spent another few weeks in the hospital and was discharged after gaining some weight and learning how to take care of this Ostomy. The second part of this story, in some ways were much worse than the first. Imagine for a moment, you're twenty one years old with the best years of your life in front of you. Marriage, children, career and friends. Now, you're stuck with this awkward thing that you have to wear for the rest of your life. I don't know about anyone else, but I'm thinking, this is it. Life as I know it is officially over. I'll never get married, have children, a career and certainly none of my friends are going to want to have anything to do with my because I'm a freak. Well, with the support of my family, especially my Mother, these feelings slowly started to fade and I started getting up and around, out of the house and doing some of the activities I enjoyed doing. Now this is the best part of the story. About six months after being discharged from the hospital, I met the woman I now call my wife. We married in 1994, had two beautiful children, Scott in 1996 & Becka in 1998. Next May will make 25 years of marriage. I've had some additional surgeries to have pieces of my Small Intestines removed, but with the strength and support of my family, I've been able to get through much easier. Now, because of the major doses of Steroids I've been on throughout my life, it's taken a major toll on my body. Four neck fusions, three back surgeries, both hips replaced, Glaucoma, Macular Degeneration to name a few. I would,love to see everyone share this page so more and more people can read my story. As I said, if this effects even one life, then I've made a difference.