Hi, my name is Judyc, I live in upstate NY, in the states. Have been living with this disease most of my life. Have had it now approx 38 years, so I really don't know what life is like without it, especially since it has progressed in the last 14 or 15 years, as I had to finally go on long term disability. I'm fortunate that I have it only in my small bowel and just had a colonoscopy to see that this was still the case and it is. But with it getting worse, 3 big surgeries, last one in Oct of last year, was already scheduled for this surgery at the Cleveland Clinic (excellent Digestive Center in Ohio, people from all over the world go there with the severity of my disease, about a four hour car ride for me), as I had many adhesions, two partial blockages but a week or so before my departure date, I got a lot worse with pain and was rushed into a local hospital here and with tests, found that my intestines were beginning to perforate so had to have emergency surgery there as I was unable to safely go in an ambulance for four hours. So knowing this was not the greatest care at this local hospital, it was a horrible surgery, my worst ever, took many more feet out with resectioning and I just had more pain than ever, was in the hospital for 9 days, a month later, I was in more pain, rushed again and the CT found fluid in my pelvic region from the operation a month earlier. So again, they rushed me to get this out via a tube stuck in my side (pain pain pain) and they got about 200 cc's out which was a lot more than I thought, all old blood from that surgery. If I had waited a few days later, I could have filled up with a bad infection from this, just got it in time but again, 9 more days in that hospital as it disrupted the healing of the original surgery. So by the end of December, I just still didn't trust this surgeon as he even said "I Might have missed something" to me TWICE, so I made a trip to Cleveland Clinic first week of January and they did many tests and said basically this surgeon did an OK job under the circumstances but couldn't tell me why the fluid, though one doctor said he might have knicked something on the way out! At any rate, I'm finally feeling better, back on 6MP, and oxycodone daily for some quality of life . I only take 3-4 a day of the pain killers which takes the edge off as I have pain daily but it's bareable. So that's the recent update on me. Mine is a long story, dating back to my early teens when they thought I was anorexic, when I was in and out of the hospital for my appendix, and it never was that, though they did snip that out during my first surgery in '93 when I only had six strictureplastys, which are nothing compared to those resectionings. It is in my family, my aunt had it for many years and died a few years ago at age 74 of cancer but she lived a long life with it. She was my inspiration. I would talk to her about what she would do back in her day for pain or the big "D", they really suffered much worse back then. She was such strong person...that was a tremendous loss for me. Well, I'll stop rambling now. Glad to get the invite from Mike. I used to go on the UK board but it got too big and I didn't know anyone there anymore so I'm thankful to hear from you, Mike....If anyone wants to ask any questions, feel free, I feel I'm quite the expert on this disease and feel so bad for people that just get dxed with it in the prime of their life. I can't imagine having a healthy life and out of the blue get this to deal with. It only made me a stronger person, I think. There are so many new things out now and new things coming out, my doctor tells me. Thanks again, Mike......Judyc
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