My life with Crohn’s, over 55 years and counting

I had symptoms at 8 years old and misdiagnosed till 16 with anorexia! I did have the body of an eight-year-old. This was in ‘71 when hardly no one had heard of this Crohn's disease. Now they have bloodwork, biopsies, X-rays, all kinds of tests for diagnosis. They actually put me in a psychiatric ward for 3 months for anorexia diagnosis! There were no places for eating disorders at that time.

Worst time in my life

They wouldn’t let me see my family until I had gained 8 lbs! I was 75 pounds from seventh grade to my junior year. I was rushed to the hospital many times with this right side pain which they kept thinking was appendicitis and it never was. My mother took me to so many different doctors. I was literally dying. So the latest doctors agreed that I should go into a psychiatric ward for the missed diagnosis of anorexia. At that time, in 1971, there were no eating disorder places and also hardly anyone had ever heard of Crohn’s back then. So at 75 pounds, my parents dropped me off there while I cried and cried because I couldn’t see them again until I was 82 pounds, which was so hard to get there. It took over 2 weeks.

Gaining weight was impossible

They would watch me eat for 1/2 hour only and what I didn’t eat they would substitute with this nutritional drink of 70 calories an ounce. I would get weighed every morning and if I didn’t gain half a pound every day, I would get no privileges like a radio, mail, TV, and of course, no visitors. It was virtually impossible to gain a half a pound every day when I was fasting for so many different tests. I had to see a shrink all the time which never helped me. My poor parents also had to see a different Shrink every week. They would come up to see the shrink and they were not able to see me because I wasn’t at the right weight. They put a chart on my wall and told me at what weight I could get certain privileges. I wanted to die. That was the longest two weeks of my life to see my parents.

They finally saw Crohn's

Into my second month there, they finally saw the Crohn's on an x-ray after I had been telling them how bad the pain was on my right side. They still wouldn’t let me go home. They wanted me to make it to 110 pounds but I never made it there, only to 102. I missed my first month of senior year as I was tutored there. Of course, that ruined my summer between my junior and senior years. I did meet some nice people there surprisingly. Most were there for life ending attempts and trying to get off of drugs. There were a few that were definitely mentally ill. Lots of them were there for depression. I did meet one girl that was anorexic as she was in an out all the time, she would gain weight really quickly and then she would lose it in a few months and come back, I knew that wasn’t me.

So fast forward to my first surgery in 91

Surgery was to open a very bad narrowing in my small bowel. I had three other surgeries after that over the years and none of them were laparoscopic. I was cut down from the top of my chest all the way down. It was just the worst pain when they cut your muscles like that and it was very hard time to recover.

I was able to work till I was 46, never thinking I would live to be this age and never thinking how bad this disease would progress over the years. And all the damage it did on my body from all the different meds, just the usual joint pain, arthritis everywhere, cataracts from all the steroid use, mainly the horrible prednisone, and then I got fibromyalgia. They finally put me on some much-needed pain meds which I still take to this day to get the little quality of life that I can get.

Thankful for my surgeon

I had my biggest surgery at the Cleveland clinic in 2001. Many many narrowing and my great surgeon had to cut half of my small intestines out but did save me from an ostomy. He told me I should of had surgery five years before that. I’m from Rochester New York where they have the most incompetent doctors and surgeons for this disease. One of my other doctors said, don’t let them touch you here because they don’t see very difficult cases like me here. So ever since I have been going to NYU Langone hospital in New York City because the doctor that I had at the Cleveland clinic is now the head of the G.I. department in New York City at NYU. A brilliant, brilliant surgeon.

The problems continue

These days I’m having a lot of problems with my esophagus and I have pyloric stenosis which they haven’t been able to fix. Also I have an anal fistula that they have to repair soon. Which I’m told is from having the disease for so long. I was tentatively scheduled for surgery in New York City but now with the virus, I don’t know what I’m going to do.

Also I wanted to mention that I have to have a colonoscopy every other year because as most know, the longer one has this disease like me, the higher chance of it turning into cancer, which happened to my aunt. She was diagnosed in her early 20s and she even lost a full-term baby from this disease. Then by the time she was 74, after numerous surgeries, it did turn into cancer and she passed away shortly after that. She was my rock and always told me never give up, keep up the good fight and always keep the faith. Oh how I miss her.

Never give up!

I wanted to mention that my Crohn’s for over 30 something years was contained in my small intestines but just about 10 years ago, they did find it in my colon. But after my recent colonoscopy, my doctor told me that my Crohn’s is inactive, which doesn’t help with the pain because I have so many adhesions and scar tissue from my surgeries. So you warriors out there, don’t ever give up. I have many bad days when I want to but then the next day I would feel better. You people are so much luckier than I was with all the new treatments and the Biologics that were not available for me. If anybody wants to get in touch with me, please feel free. I’ve become a very big expert on this lifelong disease. Thanks for listening but sorry so long....Judy!