Sharon's Story

My name is Sharon and I have IBD. More specifically I have crohn's disease. I know I will be skipping around a lot but so much has happened to me in the 23 years that I have had crohn's its hard to separate it all except by the different systems that have been affected. Please bear with me while I tell you my story.

I was diagnosed in 1981 at the age of 15 after dropping half of my total body weight of 125 lbs. I started having abdominal cramps and diarrhea in December of 1980 and by January I was vomiting every thing I ate. When I saw the doctors at Children's hospital in June of 1981 I weighed only 52 lbs. I was very close to death from dehydration. I was taken directly to surgery to get a broviac catheter and put in for Hyperalimentation and not allowed to eat for the next 2 weeks while I was in the hospital. After 2 weeks they slowly introduced foods again. They started with clear liquids and I slowly graduated to solid foods that were easy to digest with no fiber. I was 50 miles from my family and friends while going thru this. I was there a total of 35 days that time and for the next 2 years I was in and out for a month at a time each visit until I finally had a bowel resection at age 17. I got out of the hospital on my 18th birthday just happy to be alive and able to eat. Thru all that I was put on medications with side effects like violent mood swings, cataracts, osteoporosis and insomnia. I was never told of these side effects because I was just a child.

After the resection I had 8 very good years with few problems and no maintenance drugs. I did have sporadic problems with fistulas and chronic diarrhea but nothing I was going to let hold me back. Until February 1992. That's when every thing changed. I started with cramps that would double me over with their intensity. The vomiting started and I had a miscarriage after a flexible sigmoidoscopy and a barium swallow with small bowel follow thru. No one even asked if I could be pregnant. I was as much at fault as the doctors because I was told I would never get pregnant after the bowel resection. I was lucky that I had a man that loved me and was willing to stand by my side thru all of this. We got married in October of 1992. Normally I wouldn't add that to this story but I want you to realize just how lucky I am because most women with crohn's aren't. After the wedding it took 4 months for me to get admitted to the hospital. I was there 3 weeks having tests run by doctors I didn't know because now I was an adult and in a new state. February of 1993 was my second major surgery. My gall bladder was removed, a resection was performed and a drain placed to heal an abscess.

Unfortunately the problems persisted for the next 8 years with fistulas, weight loss, appetite problems and medicines that either didn't produce the desired effects or had side effects that made them impractical. I had many surgeries during this time... some minor and some major. I don't even remember all of them. I do remember the surgery to place a stoma in 97, the one that took most of my colon out later that year, and many fistula surgeries to place cetons, or open and drain them between 93 and 2000. I worked thru all this at a daycare center teaching preschool until in 1993 my doctor decided I needed to get away from that career. I got a job at a convenience store close to home so I wouldn't have far to drive because the bathrooms on the drive to work had been a major problem for me as I live out in a very rural area 45 minutes from town. Accidents from chronic diarrhea were a daily part of my life. Forget American Express, I never left home without baby wipes, toilet paper, and at least 3 changes of clothes. That soon became too much for me and I had to apply for SSDI in 1995. I started receiving SSDI in 1997 shortly after I got my colostomy.

During this time I found that if I was on prednisone I could get pregnant. I consulted a fertility specialist that said I showed signs of early menopause. So we started fertility drugs in 1994. I also realized that I was never going to be a mother because of the disease. I suffered 2 more miscarriages and an ectopic pregnancy that had to be terminated because of the risk to me. Adhesions had formed from the surgeries and I was unable to carry a child to term. I started getting very bad pain from ovarian cysts. So bad that it would put me in the hospital for pain meds. Again I was very lucky to have a great fertility specialist available to me and he was able to guide me. In 1999 I had a hysterectomy. My ovaries were also taken so I started estrogen replacement therapy.

In 1995 I broke a rib coughing. My doctor sent me for a DEXA scan and I was diagnosed with osteoporosis. The rib healed and I started taking Miacalcin and calcium supplements to try to reverse the osteoporosis. I am still unsure if its from the prednisone I took for so many years or if its from the crohn's disease itself or a combination of the two. Either way I was 30 and had this osteoporosis.

I developed arthritis in 1993 that made mornings a nightmare. Some days I had to catch myself from falling as my knees hurt so bad. Vioxx came out and it helped me tremendously! I recently tried to get off that med because of new side effects found that affect the heart but I am not happy with the pain levels that has brought on.

I have been one of the lucky ones. Yes I said lucky. I have had great doctors and wonderful care. I have researched my disease and understand a lot now that was kept from me as a child being treated. I have a wonderful husband and great support from his family as well as my mother. I talk to crohn's patients every day online that have medical care that I wouldn't even force on my dog and no support from friends or family. Doctors are not as educated as they should be and would like to educate themselves at our expense. I know this because I couldn't get my primary care doctor to send me to a specialist until I fired him. That I blame on the insurance companies trying to keep costs down. A lot of us are alone because spouses are not ready to deal with the complications IBD can throw in the road of life. I do not blame the spouses ... I wasn't ready to deal with all that IBD meant for years after being diagnosed. But I do think that if IBD was better known and had better treatments it would make it easier for families to get thru the difficulties that come up. Support is a very necessary ingredient in having some semblance of a life for those of us with IBD. Without it we are isolated and feel like we have failed every one around us. The internet has made that easier on those of us that have the means to buy a computer and find some help online. It's those of us that have money problems and can't afford to have a computer or pay for internet access that are the ones that need help.

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