A Long, Long journey…..
I am writing this in the hope that it will help younger people. You see, I am 73 years old and I have had ulcerative colitis since I was 16 years old. It has been a long, long journey.
In the beginning, the journey was really lonely. There was no internet; there were no support groups that I or anyone in my life knew existed. I got sick very suddenly after a minor surgery for a deviated septum as I seem to often have colds, allergies, sinus issues.
It was 1961. I was taking antibiotics after what seemed like a routine procedure and I suddenly had diarrhea so bad, cramping non-stop for 24 hours. My parents were quite upset and took me back to the surgeon to see if I had an infection as I had a fever too. The jerk talked down to me and my parents, told them we were overreacting, and just said to give me aspirin every four hours. As you can surmise, that was probably the worst thing. In a few more days when I was worse, the doctor acted on the phone like I was faking it, and my dad was livid. He then took me to our GP, he took one look at me and sent me to the hospital. A week had gone by, I was down nearly 30 lbs and needed five blood transfusions.
Back then, in the dark days of hospital care for teens, if you were over 12 you were put in the adult parts of the hospital. It was winter, the hospital was crowded and since I was considered an emergency they put me in the cardiac care unit. Not so much fun for a teen.
So, there I was a self-conscious 16 year old girl with pooping problems and no one knew why. There were no colonoscopies, just the barium enema, and the sigmoidoscope, both which were totally embarrassing and painful. No sleep meds, just pain. I spent a full month in the hospital. It took them two full weeks to diagnose back then, then they tried all kinds of drugs, and FINALLY they decided on cortisone. Now remember this was 1961. Cortisone had only been on the market for inflammation since 1949. Prednisone since 1955. They started with cortisone for me, warning my parents they did not know the long term affects. But it worked. Aside from the moon face, and the increased appetite, immediate side affects were unnoticeable to me as I was happy to FINALLY start feeling I could go a couple of hours without cramping and bleeding. I was on cortisone, then prednisone on and off for the next several years, up until about age 30. Then I found a wonderful GI guy in the city where I had moved for a new job, and he got me started on Sulfasalazine, gave me a prescription for Immodium which was not yet OTC. He also prescribed prednisone when I needed it and told me no special diet, but just go easy on dairy, the total opposite of years ago when they told me NO roughage, creamy drinks. After nearly 15 years, I ate an apple and I was in heaven. I added more and more things to my very bland diet and started feeling better. I learned there is no one way to live for IBD patients, that there is no one drug or diet that works for all. What a concept.
It had been a lonely time, because I had no one with whom to discuss this disease and doctors never talked to me cause I was not an adult. My parents were all over the place, doing any and every thing to help me feel better. Neither of my parents had much of an education being immigrant children of the depression. They were made to feel guilty that somehow they did something wrong. But they did not. As we all know, IBD just happens. Back then they treated it as if “the ulcer” part of the disease meant I was stressed, or had a bad diet, neither of which were true. So finally finding my new doctor, who talked to me, took time to explain things, was such a relief. By then I was in my thirties. Now in my seventies, I sometimes feel I know more about living with UC than any doctor. But I have relocated back to my childhood home and have found a new doctor who I really like also. I have been getting colonoscopies yearly since I was 33 years old. This year for the first time ever, the doctor said I could wait two years. Yea me.
When I was in the hospital all those years ago, back in 1961, I spent hours telling my colon, “You will not win. I will beat you.” While I was not cured, as no one ever is, I got the disease under control enough to move on. I went to college, got a teaching degree, and taught for 40 plus years. After menopause, my inflammation seemed to lessen. While I still flare occasionally, I would say I am more often than not in remission since about age 50.
I did not marry. Relationships were hard when I was young. I was too embarrassed to tell people about my disease. I did not want children because I was afraid all the steroids I took would affect an embryo. But it worked out. I was always an independent type anyway. I have had an active life. When I was young, I would go skiing, play sports of all kinds, do art, dance, have fun. Now I do more art and love to read and while I do not have grandchildren, the granddaughter of my deceased sister is my pride and joy.
I am thrilled with all the online communities to support people with IBD. I think that was the hardest thing….not knowing another person with the disease until I was well into my forties.
Now I just want younger people to know they should look forward. More and more meds are available to reduce symptoms and allow more remissions. And the online communities can let you know, you are not alone.
I hope one day there is a cure. But know you can live a happy life, even with IBD.