Chrons Disease

Diagnosing Crohns: a Personal Story

Written by Aidan Gillen

Crohns disease is still a real mystery.  Even though doctors have medicines and medical procedures to help control the symptoms, no one has discovered either the cause or the cure. Additionally, no two patients have exactly the same health issues. One person may have a mild case that is easily controlled with medication most of the time; another individual may be unable to lead a normal life and constantly in and out of the hospital. Another problem is discovering the disease in the first place.  Most of the symptoms can also be a myriad of other illnesses, and crohns is often the last thing physicians consider.  In truth, discovering the source of your illness can be the most difficult aspect of the disease. In Trouble I was diagnosed with crohns disease when my youngest child was just an infant. One day I got up to get him out of bed, and I had very sharp pain in the lower right quadrant of my abdomen.  My husband, who was in the military, was leaving for 6 weeks for temporary duty elsewhere.  Thinking it would pass, I did not say anything. Unfortunately, the pain kept recurring, and the bouts of diarrhea started.  The episodes became so intense; I had to purchase a playpen from a friend, so my baby would be safe while I was stuck in the bathroom for up to 4 hours of each day.  It was time to go to the doctor.No Big Deal? Unfortunately, at the same time I was having a severe crohns attack, my husband was gone and both of my children came down with the chicken pox.  So, the first thing the doctor assumed was that the massive bouts of diarrhea were stress related.  I was basically told to relax and the symptoms would go away. But, it became a very big deal when the pain and diarrhea only got worse.  I was losing half a pound a day, and still trying to nurse a baby.  It became imperative that the doctors find an answer to my problem.  It was time to investigate further. So many Tests The tests were almost worse than the disease.  I actually started to feel like a pin cushion.  It seemed like they took so much blood that a vampire would be proud.  Then I had the upper and lower G-I’s.  The tests are not so bad, but drinking that chalky barium is definitely not fun.  Plus, if you already have crohns, the need to throw up or rush to the bathroom is extreme.  But, if you do either, the test will simply start all over again. I was poked, prodded, weighed, interview, fed nasty stuff so it would show up on x-rays.  I actually began to wonder if I was going to start to glow in the dark.  Meanwhile, I continued to lose weight.  I began to wonder if I was dying.  Then, the regular doctor came to me and let me know it was time to call in the big guns.  The military base had a doctor that specialized in internal medicine.  Usually, it took six weeks to get an opportunity for an appointment.  But, I had become so sick by then that I only had to wait two or three days.  They were checking for colon cancer.  I was in big trouble. Added Concerns Part of my problem was location.  I was living in Japan at the time.  I was six thousand miles away from family, my husband was on temporary duty elsewhere, I had two small children at home, and I already had mobility issues due to cerebral palsy.  Plus, I was still nursing a baby.  The doctors were desperately trying to keep me out of the hospital. The testing process actually took so long that eventually my husband returned.  But, he also had an unpleasant surprise for me.  During his time away, he decided that he did not want the responsibilities of marriage, especially to a wife who might have cancer. So, with all of these issues looming, more tests began.  I had a colonoscopy.  I was so scared.  Then, it was time to wait.  A few days past and I got the dreaded phone call.  The doctor said he had bad news.  I had crohns.  Having no idea what he was talking about, I had one question: Can I live with the disease and raise my children?  Facing the possibility of cancer and not living to raise my 2 small children, I must admit I was very grateful that it was only crohns. Living with Crohns The next step was to send me and the kids back to the states.  I was sent to my sister who was a nurse.  She lived near another military base.  Then, more tests began again.  I needed surgery.  But, I was too sick.  So, the object was to get the disease under control, learn to eat differently, get on the right medication and begin living with crohns.  After 3 years of eating the equivalent of baby foods, surgery came. Today, I have learned to manage crohns.  Of course, I have good and bad days.  But, learning to eat what my body tolerates, getting plenty of rest, taking my meds, and having a positive attitude helps tremendously.  Diagnosing crohns, my personal story is not necessarily positive.  But, hopefully it will help you to know that there are people out there that understand what you are going through.  I am still very grateful that I was not diagnosed with cancer; I am raising my children as a single parent.  But, life is good.  I still have to live with crohns and do what I can to keep it under control.  However, the disease does not control me.  So, keep up your spirits, follow the doctor’s advice, and hopefully you too can learn to live with crohns and have a good life in the process.

 

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