Suffering with a Chronic Disease

I remember the day well it all started in October of 1984.  It was the day after I had gone to Knott’s Berry Farm with my then boyfriend (now husband) Michael. I got what I thought was an ordinary case of "the runs" and took the typical over the counter remedies but nothing seemed to work. This ailment continued for the next two weeks and when I began noticing blood, I decided it was time to see a doctor. I went and saw a regular MD who had me undergo a lower GI barium x-ray which showed nothing. For a few days after that I had relief then it started up again with a vengeance; making me feel weak and exhausted. I then sought the services of an internist who performed no tests but put me on a more restricted diet and took my money for a year, only to have my symptoms become worse. I began to feel punished anytime I ate and started dropping weight. Finally my mother who had been worried sick about me, insisted I see a specialist. By this time I was so miserable, I agreed. His name was Dr. Cohen. He took my history, did a sigmoidoscopy on me and then informed me he was not going to mess around with my health like the other doctors. He was going to have to do a colonoscopy to find out exactly what was wrong.

After the procedure I was informed I officially had a "disease". It was ulcerative colitis and while there was no medicinal cure, there were things that could help. I was only 24 and was depressed to learn I actually had a disease. He started me on prednisone which many doctors call a miracle drug because it temporarily will remove many symptoms of an immune system gone haywire. What they don't tell you is how bad this drug is for you physically in the long run and how awful it makes you behave in the short term. It's like having perpetual "road rage" and raging PMS at the same time but it did stop my symptoms immediately. After almost 2 years of almost nonstop diarrhea, bleeding and abdominal pain, I had almost instant relief. During this time, I had gotten engaged and was planning to marry. The only thing I could say that I liked about the disease was losing the weight but it was a heck of a way to do it. To save money, I moved back home to Torrance and commuted to Orange County every day. I wouldn't eat or drink a thing until after I had gotten to work so as to avoid "waking my bowels" up. To say that I knew where every public bathroom was on my 60 mile commute was an understatement. Sometimes I barely made it to a bathroom in time despite not eating.

As the days and weeks progressed after our wedding, it took higher and higher doses of Prednisone to keep the ulcerative colitis in check. The increase in dosage also increased my heart rate, my rage and impatience and started bloating my face and body up to the point where I looked like an organ transplant patient who was fighting rejection of the new organ. My new marriage was taking an awful beating. I was practically chained to the bathroom, could hardly eat and was making life hell for my poor new husband who began secretly considering divorce before we had kids as I was no longer the person he had married.

By now I was up to 45 grams of Prednisone a day, I was having bathroom accidents frequently (which were totally humiliating) and if I continued putting up with ulcerative colitis for several more years, it would lead to colon cancer. My life had become so miserable that I really had no options left but to schedule surgery. At this time a Christian friend at work invited me to come to her church to hear a man preach who had a miraculous healing ministry. By this time I had scheduled the surgery to remove my colon and I was frightened of the subsequent pain and changes to my body. Even though by this time I had become quite jaded towards ministers claiming to have special healing ministries, I was desperate enough to try and attend; pleading with the Lord to heal me miraculously rather than through the expensive, painful surgery I was facing. I made myself a promise that I would not tell the preacher what was wrong; that if he was the real deal; God would have to give him a specific "word of knowledge" about my condition and approach me for healing, not the other way around. My husband was incredulous but agreed to go with me. I stood and wept silently throughout the entire service with tears streaming down my face, pleading with God to heal me so I wouldn't have to face surgery. The preacher either didn't notice me or was afraid to approach me. Whatever the reason, he made no reference to me and I left without having a miracle but still trusting the Lord.

I entered the hospital on October 8th, about a week before my 28th birthday. Next to me sat a young girl in the hospital admissions office that was facing open heart surgery. I decided I was glad that I was not having what she was but I was still apprehensive. My husband signed me in and they began prepping me for surgery the next day. The night before I had taken a colon cleanser (which resulted in another accident early the next morning before going to the hospital). That night there was no food, just a lot of antibiotic pills. So much so in fact that I ended up throwing them all up. Early the next morning I was wheeled down to surgery with my poor husband at my bedside. They had given me a shot of Demurral to calm my nerves and I was cracking jokes to the nurses. They wheeled me in, transferred me to the operating table and swabbed my entire abdomen with orange antiseptic. I remember counting backwards and only getting to 90. When I awoke from the anesthesia it was with a shock of pain. I couldn't talk and could hardly take a breath, nor could I ask the nurses for more Morphine for the horrific pain while they discussed the latest videos they had rented.

They wheeled me up to my post-surgical room. My nurse was Stella and I'll never forget how she hovered over me like a mother bird, putting pillows all around me, feeding me ice-chips and hooking up hoses and tubes to every opening in my body. Although I was weak I was very conscious of her exceptional care and was able to thank her months later face to face and tell her how much it had meant to me. I had a long vertical scar stretching from the bottom of my chest all the way down to almost my pubic area like a big zipper. I had a NG tube snaked down through my nose/throat into my stomach. I had a suction hose attached to where my rectum used to be and a large IV that was in my neck to feed me and hydrate me. And last but not least, I had an illesotomy bag and was catheterized to save me numerous trips to pass water in the bathroom.

I was only supposed to be in the hospital for 10 days maximum. I couldn't eat anything at all for a few days then only clear liquids to start. Food and restaurant commercials on the TV were absolute torture. Slowly they began introducing bland food into my diet and on my birthday my surgeon had sent a birthday cake to me in my room but for some reason it tasted like dirt. I was warned that I would have a lot of gas so when I started experiencing a lot of pain and belching, I attributed it to gas. The night before I was supposed to be released, I was watching the world series with my husband in my hospital room. My husband was eating fast food as was his custom. The commute from his work and our home to the hospital every night was a good 30 miles each way. Suddenly I snatched away the empty Carl's Jr. bag and threw up into it. That night my nurse spent the evening walking me around the corridor as I belched and belched, getting Demurral shots for the pain every 2 hours. The next day I was supposed to be released but instead of going home, I was given an emergency upper G.I. It's bad enough when the stuff was cold but even more disgusting when the Barium is room temperature! I was writhing in agony at this point and not knowing what was going on. Hours later, the assistant surgeon told me what it was. Since my entire large intestine had been removed, during healing the small intestine had twisted itself into knots (referred to as a blockage) and could burst unless a second surgery was performed.

"Fine!" I said. "Do whatever you have to do; just fix it!" I remember just before being put under for the second time telling the Lord that I was committing my soul into His care should I not come out alive. I had the second surgery but this time instead of staples, they had to sew me shut the old fashioned way. Inhaling was even worse this time when I awoke. I felt like I had been hit by a Mack truck. Everything that could have gone wrong with me, went wrong. My NG tube fell out while I was getting my hair washed and it had to be put back in while I was awake (horrible procedure)! This time however, while I healed my bowels stayed in place.

My poor mother and father were at my hospital bed every single day (a long commute from Torrance) for what ended up totaling 30 days. They are not believers and couldn't wrap their heads around the notion that we hadn't paid the people who had come from our church to pray for the entire first 7-hour surgery and the second 5-hour surgery.

Through it all, though I was in a lot of pain, I entrusted myself and my soul to the care of my creator just like a little child; knowing that whatever did or did not happen, that I was in the center of His will. It has been over 20 years since I had that surgery and I have never regretted it. As a result, I have been able to alleviate the fears of one of my mother's friends who was facing the same surgery and was scared to death. I changed my medical dressing right in front on him; showing him that it was really no big deal. Here I was a 30ish female, exposing my stomach with my cuffed small intestine sticking out through my skin and not acting like it was a big deal. It gave him a much needed lift and encouragement and he had the surgery. He never forgot this act of kindness and has since referred to me as his "angel". I always told him to thank God, not me, because I did it for the Lord. Recently he was able to pay the same kindness forward as he did the same thing for a woman friend of his who also had to have the same surgery and he was so glad that he finally got his chance to do someone else the same favor.

A year or so ago I ran into one of the nurses who had taken care of me.  I was attending a Messianic Jewish club event when I overheard this person telling someone that she had a really unusual name and that her mom had given all her daughter’s candy names. I walked up to her and asked if her name was Taffy and she replied “yes”.  I gave her a hug and told her that she had been one of my favorite nurses. She had actually been the one to walk me around the corridors at 2:00 the night I had the horrible obstruction, giving me Demerol shots. She looked me in the eye and said “We were seriously worried about you. I’m so glad you’re doing so well.” The way she said it led me to believe that my life back in October of 1988 might very well have been in more jeopardy than I realized at the time.  It is not uncommon for people to die as a result of a serious bowel obstruction.

Now I lead a very normal life; eat whatever I want, and going to the bathroom takes minutes, not hours.  Best of all I can't have any more colonoscopies (because I no longer have one) and I'm off those horrible drugs which caused my older sister to have hip, shoulder and cataract surgery even though took a lot less than me and for a shorter period of time. God brought me through the storm instead of flying me over it and while I would never want to have to repeat it, I don't regret any of it. It made me realize how utterly demoralizing, debilitating, and life altering having a chronic disease can be and how those who suffer with such things need our understanding and compassion.


  1. Wow, what an amazing story! I'm so sorry you went through so much pain, but an so thankful the Lord was there with you each step of the way. Thank you for sharing you story as it could help someone else faced with the same chronic disease and maybe lessen their worry over what's to happen to them.


  2. Wow. That's a whole lot of hope you've just given people who are facing that kind of surgery. Thanks for sharing!

  3. Thank you for allowing me the chance to read your story. I am 70 and have so many operations I now know what my pin cushion feels like.
    I hang onto my faith like it is silk thread and sometimes I feel it has broken and down into the black hole I go. My husband is wonderful, two of my four children have died one at39 one at 9 months, so the heart is broken too, my remaining children I have not heard from in 22 years.
    I have to wear a intravenous flow all the time, it may get taken out one day, hopefully.
    God bless you and yours katie