My first post

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Joined
Apr 7, 2013
Messages
4
Location
Chicago, IL USA
I'm in awe of the many blogs I've found on the web from people coping with Crohn's Disease. After many years of coping with Crohn's, and relishing in what I read from others, I finally decided to start a blog of my own.

At the time of this post, I'm 52 years old. My story starts in the early 1970s when I remember missing a lot of school because of stomach aches. I was always small for my age and bullied relentlessly. I was the proverbial 98 pound weakling. The only advantage I had from missing so much school is that I was able to self-study, which allowed me to surpass many in my grades.

My father was a Pediatrician. (At the time of this writing, 83 years old, retired, with early Alzheimer's Disease.) To this day, I don't think he ever really believed anything was wrong. In 1974, he finally relented and brought me to a Gastroenterologist, Dr. Klaus Meckeler in Somerville, New Jersey. I was referred to a Radiologist who did a series of studies - upper GI, lower GI and (how I hated these) Sigmoidoscopies. Back in those days there were no torture preps like Golytely, so you prepped the old fashioned way, with an enema bag. At 13 years old, having your mother stick a tube up your ass can be embarrassing to say the least.

When the initial results came back, I remember as if it was yesterday sitting with the callous Radiologist who showed me the X-Rays and told me that I had not "cleaned myself out well enough". He said the fuzzy appearance of my illium was due to "**** still in there." I was crushed and embarrassed and went home feeling devastated. Fast forward a few weeks when one of the Radiologist's partners called. He said he looked at the X-Rays and wanted to check something out. I had to re-prep and undergo another lower GI series. From that, along with elevated Sed-rate blood tests, they diagnosed Crohn's Disease in 1974.

Throughout the years I have tried many drug therapies and surgeries to help stem the symptoms of the disease. I remember clearly being put on Asulfadine at first, then adding Prednisone. Now, in your early teen years before you've finished growing is not the best time to take Prednisone. My final growth spurts were missed and as an adult, I can reach 5' 7" if I stand on my toes. My life would be riddled with years of taking Prednisone - on and off for probably 30 of the 39 years since my initial diagnosis.

I've taken the standards and I've been in drug tests - Flagyl,, Asacol, Pentasa, Budesonide, Mesalamine, Methotrexate (self intra-muscular injections), Remicade (monthly infusion therapy) and for the past six or seven years Humira (weekly self subcutaneous injections). I'm sure I've missed some.

Then, there were the surgeries - a resection in 1988 to repair a fistula. This was done by one of the best GI surgeons in the world at the time at the University of Chicago Hospitals, Dr. George Block. (I list about 15 feet of small bowel in that one.) In 1996, Dr. Fabrizio Michelassi, the person who initially developed the Strictureoplasty operated on me to relieve a stricture. For good measure, he removed my Gall Bladder while he was in there. In 2004 I had three surgeries - a botched resection done in Houston at hospital by a doctor neither of whom I will reveal. Later in the month I developed an Abscess that was repaired at the little Missouri City Hospital in Missouri City, Texas and the following month another surgery done at the same hospital to repair adhesions that resulted from the Abscess Finally (and hopefully lastly), I had another resection in 2011 back at the University of Chicago. I've had countless hospitalizations for severe intestinal bleeding and for obstructions.

Now, at 52, I still have Crohn's Disease - primarily in the terminal end of the small intestine (I have no remaining Illium) and have short-bowel syndrome, I have chronic obstructive disease from which I am in constant pain. For my whole life I've suffered from Chronic Anemia. My blood pressure is high and I have high triglicerides. I can't sleep at night. And, from the years and years of Prednisone, I am chronically depressed (although controlled by meds) and just learned in the past year I have Osteopenia. I take medications and vitamin supplements for all of these. The only way to keep track of them is to have two of those one week daily pill boxes, one for the AM and one for the PM.

That's my medical story. Now the good stuff. Unless I'm in the hospital I have never let my disease control me. My wife and I will have been happily married for 28 years later this year. My wife has been a constant source of support and help for me. There have been many times when I don't think I would have made it through without her. She is my best friend. We have two grown children, one a college graduate and getting ready to go to graduate school, and the other still in college. Thank God, neither of them have ever shown any symptoms of bowel disease.

I've also been pretty successful in my career. The one time in my life that I let the disease get the best of me was in college. My anemia was terrible and I was truly suffering. So, in the late 1970s I looked for escapes - ways to forget about my troubles. The drug culture was at its peak and I found them to be a way to forget about my pain, but my grades suffered. By the time I realized what they were doing to me, I let my dream of becoming a physician like my dad slipped by me. I corrected my behavior, but was never able to recover my GPA fully. I graduated Emory in Atlanta early, in March 1982 with a degree in Psychology and immediately started a Masters in Clinical Psychology that summer. Ironically, although my GPA recovered to 3.1, I graduated with a 3.95 in my major. My only regret in life is giving up on the dream of being a doctor.

By the end of the summer of 1982, my part time job selling magazine subscriptions over the phone grew from selling to supervising to managing call centers. The company I was with transferred me from Atlanta to Tampa and I left grad school. Call Centers have been good to me and my family. After so many years, running call centers is still a big part of what I do for a living. I did end up going back to school - in 1989 I started to work on an MBA, part time at Kellogg Graduate School of Management (Northwestern University), graduating with a Masters in Management (MM) and a Masters in Business Administration (MBA) in 1993.

In the mid-1990s, I decided it was time to get into shape. My son was taking Tae Kwon Do at a local Dojang. After realizing I was there three days a week watching him, I joined. Today, I hold second degree black belts in Tae Kwon Do and Hapkido, and have studied Judo, Kuk Sul Won, Wing Chung Kung Fu and Krav Maga. Now, I'm a little out of practice. When I went through my surgery two years ago, my martial arts training got put on hold. I need to get back in shape and start up again.

Today, I work as Director of Sales for a mid-sized software company that focuses on the Auto Body physical damage industry. It was a stretch from the industries I'd been a part of in my career. But, I love what I do, and after 7 years with the company, have every ambition of remaining with them until I retire.

So, that's my story and I'm sticking to it. For those of you who made it all of the way through this, thank you. I plan to keep this up - telling you about how I cope with symptoms and medications and generally discussing how life goes.
 
Man, you do have a good story and I'm glad to have read it ALL.

I am retired now at age 62 but only found out that I had crohns when I was 61, right after I retired. I worked for Nationwide Insurance as a Training Manager for the claims dept. I am I-CAR certified and I would teach classes all over the US to auto adj.s. I used Mitchell matix's and APD estimating programs for over 20 years. I loved being an insrtuctor for Nationwide and working for the Home Office.


I hope I can stay as up beat as you have. I try

Jim (Pops)
 
I appreciate your reading my story and responding. I work for the other guys (CCC Information Services), but know lots of folks at both Mitchell and ADP (recently renamed AudaExplore).

Keep positive. It's the only way to get through it all.

Bob
 
Thank you for sharing your story with us!

It sounds like a long journey for you but the fact that you didn't let this disease hold you back and you managed to achieve many things (family, better health, successful career) is truly inspiring. I'm in my 20s and while I try not to let it take over, it does sometimes as it has definitely played a role in my struggling personal relationships, self-perception and job situation. But I also know I have to cut myself some slack as I have only shown symptoms/been diagnosed for almost a year now and there is definitely a learning curve. Your story shows me that despite the setbacks, it IS possible to eventually make something of yourself and be in a position where you are happy with your life.

I wish you continued health and happiness. :hug:
 
Rob,
I also used CCC est. during my years. We ALWAYS use CCC for our "Total Losses" I really miss working. I wish I could go back to traveling and teaching again, but I think that at age 62 no one would want me...lol Well maybe. I do bring alot to the table. If you hear of anything in the San Fransico bayarea. Let me know please.

Jim (Pops)
 

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