I’ve been in the advertising industry my whole life and with today’s technology am able to work from home. My home office saved my life with the onset of UC. I’m one of the rarer one’s who was just diagnosed this past summer at age 55. Although there are many blessings about being this age, the hardest part about getting UC at this late stage is that I’m a stubborn mule and refused to think I was sick or needed help, as you’ll see from my story.
Some more about me:
I’m an east coast city boy. I was raised in Washington, D.C., lived in New York, Miami and now Atlanta. I travel a lot and have been to most major cities in the U.S., Canada and Europe. They all have their unique beauty and personality, but for some reason, I love the east coast and am happy to call it home. I enjoy history, art and theater, good food and I love to read fictional novels. Oh, and I do 4-5 crossword puzzles everyday. I live with my partner of 14 years and our crazy Border Collie that keeps us herded and moving in the right direction.
I am currently in remission although I still have very soft and frequent bowel movements, sometimes painful.
Denim: Friend or Foe?
Does anybody wear button-down fly jeans anymore? I do. Levi’s 501s. They were the “uniform” back in the 70s when I was a teenager. I’m 55 today and still love my 501 button-down jeans. Of course, I’m not wearing the same ones as 40 years ago, I regularly buy new ones. I love the thick, stiff denim and the process of breaking them in to the perfect comfort level. We used to go to the beach and swim while wearing a new pair to help soften them in the ocean water. So, I recently bought a new pair when my world turned up-side-down.
I’ve worked for the same company for 25 years when they sold it from under my feet. Like so many others in this modern depression era, I found myself unemployed and in my mid 50s. Being the optimist that I am, I came home and told my partner we should take this “opportunity” and move to a new city, which we’d been thinking about for several years. He was able to transfer to a new location with his same company and moved ahead of me to establish a place to live and settle in. I stayed behind to pack up the house, load the truck, say good bye to my family and friends and start a new life.
So it comes as no surprise that on the very first day of the rest of my life I had severe abdominal pain and found myself on the crapper with extreme diarrhea . Stress and nerves. That’s all this is. It was a crazy couple of months getting here and I’d been stressed beyond belief with my uncertain future. Stress and nerves. That’s all it is. It got worse, of course. Blood, mucus, pain, sleepless nights, fever. As soon as I’d leave the bathroom, I’d turn around and go right back in. I had at the very least, 10-15 bowel movements every day. And the pain just got worse. Stress and nerves. That’s all it is.
This persisted for about a month. It didn’t even occur to me to see a doctor. Stress and nerves. That’s all it is. I’d soon settle into this new city, this new life. A bit a good fortune befell me in the midst of all this. The people that bought the old company wanted to keep me on board and I could work from home, from a far away city. Sweet! Things were looking up. I knew I’d get better.
One day a couple of old friends were passing through town and stopped by. We had a very nice visit that afternoon and I was able to keep my frequent visits to the loo without notice. We decided to go for dinner at a nearby pub, only two blocks from my apartment. I could do this! I was nervous, but I could do this. While everyone else was in a feeding frenzy of juicy burgers, french fries, supreme nachos and beer, I sipped on a bowl of vegetable soup.
Made it through dinner, walked home and said good bye to our friends. We were waiting in front of our building for them to pull their car out of the parking garage and wave a final good bye when the urge came. Couldn’t wait. A fever broke while I was waiting for the elevator. Sweat streamed down the side of my face. My butt muscles clenched as hard as they possibly could and the panic rose in me like the seconds before Old Faithful can do nothing else but release the pent up pressure.
I swear, the devil himself lives in elevators. They just take their own sweet time, never thinking about anyone else, just themselves and their own needs.
Once inside, I’m pushing the “close door” button… tap, tap, tap, tap, tap, tap, tap, tap thinking it’ll never close and get me up to my floor. The door finally opens and I burst into a power walk, which then turns into a jog, which then turns into a full out sprint. Of course, my apartment is an end unit, and the furthest away from the elevator. Just my luck.
Door locks are almost as bad as elevators. Just saying.
I’m in my apartment, I’m in the bathroom, I made it!!!
Did I mention I was wearing my brand new Levi’s 501 button-down jeans?
Yes, the glamor never ends. I believe I was able to get one button undone before the dam burst, the pipes ruptured, the levee breached, the well spilled over, the Titanic sank, Noah rebuilt the ark, Neptune & Poseidon took shelter, Willy Wonka smiled, Waldo came out of hiding and families took to the hills.
Stress and nerves. That’s all this is.
Can you believe what an idiot I am? I mean, what is it going to take for me to realize that something is seriously going wrong? The blood alone (and there was rivers of it) should have set off the alarm bells in my brain to get to a doctor. But no. Stress and nerves. That’s all it is.
The fun doesn’t end here. That very next day I had to get on an airplane! It occurred to me that I’ve experienced this scene somewhere before. There’s a television commercial that has a lady walking around an airport but never getting too far from the bathroom. It must have been one of those medical commercials about UC or Crohn’s but I never paid any attention to it because it wasn’t me. But, as I sat in the closest chair to the men’s room while waiting for my flight, the thought of that commercial made me laugh. Still, stress and nerves, that’s all it is.
On one of my visits to the airport lav, I was so distressed that I left my Ipad in the stall. Fortunately when I ran back to fetch it, it was still there. It’s a good thing too, because that was my only means of communication. When I threw my jeans into the washing machine the night before, I also washed my cell phone!
There’s nothing worse than public toilets, that is unless it’s on an airplane. I became one of those people that everybody talks about when they get back to their seats saying, “I will never use an airplane bathroom ever again… whoever was in there before me…….” well, you get the picture.
I was back home for the holidays and totally spent them at home, not daring to go outside. I was in bed by 10pm on New Years Eve hoping I could sleep that night. It had been about 6 weeks since the beginning of the rest of my life and then another two weeks when the heaven’s finally opened up, the bugle’s blared, the bells chimed, the angel’s sang and a ray of golden warmth enveloped me like I was the new messiah… and I felt for the first time in two months, fine.
Normal, solid bowel movements. No more bleeding. No more abdominal pain. I could sleep. I could walk the dog. I could go out to dinner. I could visit friends. See? Stress and nerves. That’s all it was. I got over it. Done. Finished. Kaput. The End. Finito. Stress and nerves. That’s all it was. I settled into my new life. Everything was back to normal now and I was happy.
I sold my old house and drove the 12 hours to get there, empty the rest of the contents out and drove 12 hours back. No problem. I was working and playing and exploring my new surroundings and staying out for hours on end. No problem. Stress and nerves is all it was.
Not so fast, buddy. My normal life persisted for about 10 weeks when it all started to fall apart again. Deja vu. Exactly the same. The pain, the poop, the blood, the mucus, the fever and everything that came along with it the first time around.
This is no longer stress and nerves. I finally got it.
Doctor visit presumed bacteria and parasites. Took blood, found nothing except that I was anemic. What a surprise. He referred me to a GI which made me mad because I knew they were going to want to do a colonoscopy. Seriously, it’s not at the top of my bucket list of fun things to do in my life before I die. But, of course, that’s exactly what happened.
Diagnosis: Ulcerative Colitis. Pancolitis.
My diagnosis came six months after the first day of the rest of my life, just 3 months ago. I’m taking Asacol 800 mg, 6 per day (3 am/3 pm). The bleeding and pain have stopped, the soft bowels continue, but only about 4-6 times per day. There’s still a lot of discomfort but that comes and goes. It all seems so easy to live with after the horrific pain from the previous year. I’m just not sure what my new normal is going to be or what it should be. Like I said, compared to what I went through, this is a cakewalk.
Not so fast buddy. Joint pain presented itself just last week. I thought it was just another one of those “getting on in years” things. But, after a few days of wondering what could have brought this on, I decided to see if there was a connection between UC and joint pain. And, here I am, in Adam’s website, with all of you, and your stories. The greatest lesson in reading all of your stories is not only gleaning the wealth of information and experiences from all of you, but there is also a sense of comfort in the discovery of a new family.
Although I’m living pretty well right now, that is without pain or blood, it sounds like this SCD diet is getting many of you to complete normal. I’m not sure that’s the direction I need to go now… or yet. When is it time? How do you know? Is it now? I love bread! and fruit! and vegetables! I eat almost everything I used to, just in very small portions. So, your thoughts about next steps in this early stage of my UC are very much appreciated.
Thank you and all of your stories for being there for me. I look forward to our future.
And, one more life lesson: NO MORE LEVI’S 501 BUTTON-DOWN JEANS!! EVER!
I was first on Lialda but I didn’t seem to get much relief. My doctor switched me over to Asacol thinking that the twice daily dosage may be better and she was right. I stopped taking all my other supplements, like fish oil & vitamins and actually feel better without them.
written by AJF
submitted in the colitis venting area