I was first diagnosed with ulcerative colitis in 1980 when I was 27.
I am now 58. I bled for 6 months before I told my first wife. When I did, she was really pissed. I went to a local doctor (not sure if he was a gastroenterologist or not) and he asked me, “Have you ever had anal sex?” I said, “NO!” He then asked, “Are you SURE?” I’m thinking, “Uhhhhh, yeah Doc, that’s something I would remember, you idiot.”
Anyway, I went through a number of years suffering; visiting doctors who really had no clue on how to treat me. This was in the early 80’s and the only meds I was given was sulfasalazine. Either the drug didn’t work for me or the dosage was never correct.
Then I would go through a few years of remission where I could workout and compete in bodybuilding contests. I even started college in late ’83 (where I met my 2nd wife) but only attended one semester since my colitis started to flare up and I was spending more time in the bathroom than the classroom. So, I went to work for my wife’s family.
All was well again for a few years. In the summer of ’86 in between bodybuilding contests, I would eat like crazy trying to gain weight. During one period, I was even drinking a gallon of milk a day. I weighed around 240 lbs. Then, my body decided that it was “lactose intolerant,” (SURPRISE!!) had had enough of the milk, enough of the food, and rejected everything that I had been consuming. In short, I had a number of massive flare ups, going up to 27 times a day and losing all of the weight I had gained and more.
I was sick for 2 years straight where I almost never left my apt. I was so desperate, I was willing to try anything to get better. My brother had mentioned that he had had a “colonic” (for whatever reason) and maybe I should give that a try. I found a local clinic that offered that procedure and had it done. The next day, I started to feel sick, bleeding more than ever and spending more time in bed. Within a few weeks, I was bedridden, my wife had to spoon feed me, my eyes were light sensitive at night (I had to wear an eye mask) and had to put ear plugs in my ears. My body was starting to shut down and I didn’t even know it. I would try to get up at night to go to the bathroom but would fall down. This was in the Spring of ’88.
For 2 consecutive nights, I “dreamed” that I was dying. Very vivid. My body was spread-eagled on its back, going down a very long funnel that was grey and swirling around (picture maybe the inside of a tornado). My consciousness was looking down on me. I remember thinking, “If this is eternity, it sure is a long way.” An odd thing to think of in a “dream,” don’t you think?
The next day was a Saturday and my wife called my doctor. He told her that if she didn’t take me to the hospital, he would send an ambulance and it would cost us $200. That made me mad so I made it to the car and was taken to the emergency room where I had to wait 9 hours for a room. During that time, I almost bled to death as my bowels were shutting down and stuff mixed with blood just kept coming out. They filled bed pan after bed pan trying to catch all the “stuff.”
That night, I was given a blood transfusion with 6 pts of blood and 4 pts of plasma, I had no oxygen in my blood, my hemoglobin was down to 7 (body manufactures at 10.3), and my protein was down to 4 (body manufactures at 7-8). In my mind, I still weighed around 207 lbs, which was a good off-season weight for me. The next morning, the nurse came in to weigh me. Struggling out of bed, I stepped on the scale and it read 157! I told the nurse her scale was “wrong,” and to weigh me again. She did, and again it read 157. I was heartbroken, I started to cry. Somehow, I had lost 50 pounds (which is a big blow to someone who liked being big and prided himself on the way he looked), and I could not face that fact. Like I said, in my mind, I still weighed over 200 lbs.
Later in the day, a doctor came in my room and told me that if my wife had not had brought me into the hospital when she did, I would have died last night for sure. I told him about the colonic and he said that that was the worst thing I could’ve done, since doing that was like, “putting a Roto Rooter” up inside me. I was in the hospital for 13 days. Funny, you get used to being in there. But, it was great when I finally left. Feeling the wind, seeing the sunshine and the people outside. It’s the little things that you miss and learn to appreciate.
Kept hospital hours for awhile (awake at 2 am and up at 5 am) and it was a struggle to eat and take a shower. But, each day was a little better and I eventually got stronger and gained my weight back.
I never competed in bodybuilding again, but the next year, I did start my own small business. That was 1989. I lost it though in 1995 and the stress of that really affected my health. I eventually found a good gastroenterologist who put me on Asacol and that has been working well for me.
My last flare-up was just 2 months ago, after 3 years of having no problems. It was sudden and debilitating. I had run out of Asacol and could not afford my meds. I was getting them free but the company was sold and the new company is not offering the same program. I was on the toilet for up to 28 times a day at times. Then my wife found a program that got me my meds, I started taking them and after a month, I was better.
I still have a problem leaving the house in the early morning. In fact, I would rather not. I am not working, but that fact puts a big damper in me looking for a full-time job. I have 2 advanced degrees but zero experience in either discipline which does not help. I would love to own my own business again but don’t have the capital nor a clue on what to do.
Ulcerative Colitis Medications:
Asacol works well for me. After years of taking 6 a day (2-3x’s) my doc had me down to 4 a day. Now I am back on 6 pills a day. I have taken Prednizone in the past (3 years ago) when I would actually bleed a lot, but don’t like taking them. This past flare up, I did not bleed even though there was a bit at times on the tp, but not in the bowl.