My story is a real life horror story. My name is Karen, and I’ve been living with severe Crohn’s disease for 35 years. I have been allergic to all the medications that are used for the treatment of this horrible disease. I was first diagnosed with Crohn’s when I was a mere 15 years old, I am now 50 years old. At that time, I had never heard of Crohn’s disease. I had no idea what this disease was, or what challenges I was about to face. I would soon find out.
I have had 16 major surgeries, starting with many small bowel resections. I have had so many resections that I now have short bowel syndrome. Due to so many stone’s in my right kidney, (caused by Crohn’s) the kidney eventually turned gang green. I had to have emergency surgery to remove the dead kidney. I also had my stomach burst wide open from ulcer’s (also due to Crohn’s) which the doctor’s had to do another emergency surgery. The next surgery I had, was to have part of my colon removed. The last surgery was when I had a prolapsed colon (which is when your colon falls out your anal area). I also had to have my gall bladder removed, not to mention the countless hospital stays. It has to be in the hundreds as a matter of fact.
The first year of my daughter’s life I was in and out of the hospital so many times. I’d be in the hospital for a month, then home for a month, then back in for a month and so on. When my daughter first started saying “mama” she was not calling me “mama,” she was calling my ex mother-in-law “mama,” since she was the person who had been taking care of her every time I went in the hospital.
My story is so long with so many experiences that I could write a book. Now at age 50, this disease has caused so many more health problems for me. I now have nerve damage from years of low B-12, because they took out the part of my small intestines that absorb B-12. I take B-12 shots, but I don’t absorb, so my B-12 level is always super low. Now all the nerves in my body are damaged and very painful. I can’t absorb nutrients like calcium, magnesium, vitamin D, etc. For all these years my nutrition has been very poor, it has caused my bones to deteriorate and the cartilage around my joints have also deteriorated so much that now my knees, hips, elbows are bone to bone. This is very painful also.
I am also a 3 out of 4 points away from osteoporosis, and I also have severe arthritis. Not to mention all the bad reactions I have had to all the new miracle med’s they come up with for the treatment of Crohn’s disease. I also have tried many experimental drugs and have been enrolled in many different studies.
This is just a brief description of what living with this horrible disease has been like on and my two daughters. I have two daughter’s 25 and 20 year’s old. This disease has made it very hard to do normal everyday things with my children. At one time I would not let this disease control me, but now living with this disease for so many years it finally has taken control. It gets very hard when your head tells you to get up and do something and your body will not allow it. It is like having a battle with yourself. The statistics say Crohn’s disease will not kill you like other diseases, but if it was not for Crohn’s disease I would not have had all these other health problems.
Three out of the sixteen surgeries I should have died. Each one of the three the doctors were amazed that I recovered. As I battle this disease I have fought like a girl, a guy, a boxer, a pit bull and the karate kid and I always won. For the last four years the disease is winning more and more. I still have some fight left, but it gets harder and harder every day.
I also want to mention how people just do not understand how hard it is to live with a deliberating disease. Thirty five years after being diagnosed with Crohn’s disease there still is not much known about this disease. There is still not much funding for research on Crohn’s; the cause, the treatment, the cure. But if you have this disease, you learn a lot about yourself. This is the first time I have told my story to anyone but family.
The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.