My story begins in 1978. I was 18 years old and recently married. I came home from work one night with abdominal pain and diarrhea. I didn’t think too much of it thinking I had caught a bug. This went on for a couple of weeks before I decided to see a doctor.
I went in to see a doctor and they ran all kinds of embarrassing tests. I’m a very shy person so these tests were very hard for me. The diagnosis was Crohn’s disease. I had no idea what that was but would I ever find out.
The doctor started me on steroids and some other drugs and kept me in the hospital for a few days and I started getting better. Over the next few months my marriage fell apart which made me extremely stressed. Symptoms soon returned. I started having abdominal pains and diarrhea to the point I could not control my bowels and was having accidents. My weight went down to 110 pounds. I went back and forth in the hospital and to doctors for tests again. This time my doctor told me I needed surgery. He sent me to the Cleveland Clinic.
I met with the surgeon and he reviewed all the test results and said he would need to remove some of my large intestines and I will have a colostomy bag. I woke up with an ileostomy and a compete Colectomy. My large intestines, my rectum, anus and some small intestines had been removed and my ileostomy would be permanent. I dealt with it fairly well. I had been so sick for 2 years I was feeling good again. I started getting my life back together.
I started thinking about dating and finding a job. I met a young lady at the local store a day we started dating 3 months after surgery in 1980. I found a job about the same time so my life was going well. We were married 3 years after we met. The hardest thing was the “talk”. I had to tell her about the ostomy when things started getting serious so if things got a little sexual she wouldn’t be surprised. She took the talk well.
Everything went well with my Crohn’s from 1980 until 1999.
In 1999 I started having pain again with diarrhea. I knew in my head what it was. The monster inside me had awoke. I went to the doctor and was admitted into the hospital for fluids and steroids again. I also had a burning pain in my right side. After a few days I was sent home to rest and I told him again about the burning pain. It was dismissed. A few days later that burning pain got so severe that I could not get out of bed or walk. My wife called an ambulance for me.
They did an ultrasound and found my intestines ruptured and I was leaking I to my abdomen. That was my burning pain all along. I was transferred back to Cleveland clinic. The same surgeon from 1980 met me and said he needed to cut open my side and put a drain tube in. It would be a few days of that before he could operate.
After a few days my surgery was done where he removed more diseased small intestine, repaired the ruptured and moved my stoma from the right side to my left side. I recovered after about 3 weeks in the hospital and went home to rest and heal. Everything went well again until 2013.
In 2013 I had some abdominal pain so they did so easy more tests and found it had a parastomal hernia. In January 2014 I had surgery to repair the hernia. I had many complications while in the hospital. My blood pressure tanked and I spent some time in the ICU and then I began vomiting severely and they had to insert an NG tube down my nose into to my stomach. I was in the hospital for 11 days for what should have been a 4 day stay. The surgeon also moved my stoma from the left side back to the original location on the right side.
I was only home a couple months when my left side began to swell. I looked pregnant I was so large. I had another parastomal hernia. This time I went to a different surgeon. I had to lose 30 pounds before he would do the surgery to repair the hernia so in October 2014 I had another hernia surgery but this surgeon inserted mesh to support my abdomen, removed a lot of scar tissue and dead muscle and moved the stoma up in location. He moved it right into where I bend at the abdomen, terrible spot.
A few months later I developed pyoderma gangrenosa on both sides of my stoma. I went to the doctor and he did an ileoscopy to see if I had active Crohns. He did not find detailed active Crohns but said I had a stricture and would need surgery. I decided to do some research to find a surgeon I wanted to treat me.
I found Dr. Megan Costedio at the Cleveland Clinic. All the reviews sounded like she was the doctor for me. My first visit with her she looked at the films the doctor gave me and said she does not see a stricture and wanted to do some tests. I agreed and told her about the pyoderma, she asked if she could look at it and started treating it immediately. I asked her if she could move my stoma because I didn’t think the pyoderma would heal where the stoma was. She was reluctant to do that since I had been through so much in the last year.
I did all the tests and came back to see her and she said I do not have a stricture and do not need surgery. She again treated the pyoderma and asked me to see a new GI doctor there. I again asked her to move my stoma and again she said no for the same reasons.
I went to the new GI doctor and she did a capsule endoscopy which showed the active Crohns. She started me on Humira to get it under control. I went back to the surgeon again because the pyoderma still would not heal, by now it’s October. I asked her again to move my stoma and this time she agreed. The pyoderma would not heal until we moved the stoma. In November of 2015 the surgery was done to move the stoma and within 2 weeks the pyoderma was healing. Dr. Costedio is the best doctor I ever had the pleasure of meeting. All her reviews were dead on.
Since surgery in 2015 I have been able to get my life going again. I no longer work because of the Crohn’s and I developed severe depression and anxiety over the years of feeling so bad. I also have a social anxiety disorder so I don’t do well with groups of people. I am being treated for the depression and also go to therapy sessions every 3 weeks.
I enjoy the outdoors tremendously so I spend my time when it’s warm outside fishing or working around my house. I try to live every day the best I can because I know that silent monster will wake up again some day.
– Terry, Crohn’s disease