My story of IBD/Colitis?
Surviving Colitis and living with out a Colon
I went through times when I did not believe I would ever enjoy my life again. But I have a great life now and get to enjoy many activities with the family, living a relatively “normal” life. Feel free to read this at your leisure, as this is a work in progress. As I go over my own words I remember things that I had purposely forgotten so I will be adding a few thoughts to this story from time to time and correcting some of my grammar as Pattie finds the time to check it for me. Please feel free to add comments or to e-mail me if you just want to express your personal experiences with IBD. I will start out with some memories of living with colitis.
When I was finally hospitalized I remember wondering if I would ever get to live a normal life again. Whatever ”normal” is? I did not want the operation to remove my colon. This is not an operation you can undo later. I believed that there was hope that they could cure me as long as I still had my colon (whatever condition it was in). And there is some truth to that I guess. For some people this is a decision they can think about for a while and gather some information about it. For me (and others) the decision to have my colon removed had to be made quickly. It was not without serious personal debate but it was made basically in a day or should I say over night. It has been a few years since my operation and although I would like to have a colon I don’t and yet I have a very active life. And normal is different for everyone, both with and with out a colon. My dreams of being international spies are shot but other than that I can do pretty much any thing.
Not Dinner conversation .
I remember feeling incredibly isolated -I did not want to talk about it with anyone and didn’t think most people wanted to hear about it (that was probably true). Now I have met a few more people that have suffered through IBD and realizing that many others are secretive about it, possibly living in denial as I did. I thought I would share some of the not so fun experiences I went through with this disease. Experiences, both before and after having my colon removed. Even today this is not an easy thing for me to share, but I think that it is important that any one with IBD know there are people that unfortunately truly understand. I didn’t believe anyone else could possibly be going through this or understand it as nobody talks about it ( It is not exactly dinner conversation) but I was very wrong. That is to say - other’s, unfortunately, understand all to well - it is still not the best dinner conversation, at least not if you want to have dinner with the same people again. People do not want to hear about how I was bleeding out my butt – somehow that just kills the conversation. So I never talked about it.
What do I have? A little background about my diagnosis.
Let’s start out with the fact that I was having some problems long before I went to the doctor. Not a lot of pain (but some). The frequent stops in the bathroom and the blood in the toilet should have been a sign that things were not right. I thought that it could be cancer so I really did not want to go to see the doctor and have that confirmed. So like most tough young men I ignored it – it will go away. That makes sense, blood in the toilet might be a sign of cancer but if you pretend nothing is wrong you’ll be fine. Yea I no stupid, but – never mind – it was stupid. I was in my twenties and thought I was tough enough to fight it (whatever it was) and at the same time too embarrassed to talk about it. So I ignored it. Guess what!!! It didn’t get better - it slowly got worse. And yet I still refused to see a Doctor.
You will find I talk about this time in my life as the time that my testosterone level was higher than my I.Q. – a common ailment of men in there twenties.
Slowly the pain started to get worse. The trips to the bathroom increased to several times a day. The need to find a bathroom quickly became NORMAL for me. I knew where every bathroom in the state was and if I went into a store that I was not familiar with, the first thing I did was take note of the restroom sign. I still was not going to see the doctor.
Finally one day I was in to much pain to climb out of the basement by myself. So I had to call a friend (Tod) to help me. Good thing there was a phone in the basement. Maybe, just maybe its now time to see a doctor. Yes the first thing he did was tell me to bend over so he could put a scope up my butt. I am sure that they have a technical name for this test. I just think of it as the first of many embarrassing tests with the main purpose of humiliating me. Looking back these tests were not as horrific as they seemed at the time. My doctor was not much help though, even after looking inside of me. He could not say for sure what I had if anything. It was time for a specialist.
Finding a specialist:
I actually went to the yellow pages to find a Gastroenterologist. That took a while because I could not spell Gastroenterologist. When I finally picked one out (a group of specialists) I was a bit surprised to find that they could not get me in for weeks. Thank god someone canceled their appointment so I got in sooner than anticipated. Why would some one cancel an appointment that took weeks to get? I do not know but it got me in. Once I was able to see the doctor he was relatively sure he knew what I had. It was not cancer (the good news) but most likely Ulcerative Colitis. Great what is that?!!!! This is one of a group of diseases known as Inflammatory Bowel Disease (IBD) – inflammation of the large intestine and, in some cases, the small intestine. The most common of which are Crohn’s disease and Ulcerative Colitis (UC). Crohn’s can affect any part of gastrointestinal tract. Ulcerative Colitis only affects the large intestine.
What exactly is this and what do I do about it? He tells me your colon is inflamed and bleeding. YOU THINK – I could have told you that. As a matter of fact I did tell you that. You may have fatigue, rectal bleeding, joint pain, etc. I already knew the symptoms – now what? And no, if someone asked how I was doing – I did not say, I have rectal bleeding -how are you? It just seemed that that would kill the conversation. Again it is just not typical dinner conversation. Well not if I wanted be invited to dinner a second time.
Next question’s – why do I have it? What did I do to get it? What do I do to cure it? What pill do I need to take?
