When my husband was 17 he was diagnosed with ulcerative colitis. He ended up getting his large intestine removed and had an internal colostomy done. He still had fatigue but not as much and he seemed to be getting better. We never imagined that 12 years later that would all change.

At age 29 my husband was diagnosed with Primary Sclerosing Colongitis. What is PSC? This is a question I get asked very often. It is the hardening of the bile ducts which the bile cannot freely flow through so it backs up into the liver slowly damaging it.

We both have never heard of this disease and we were both scared. The doctor didn't have much info for us so of course we turned to the Internet and we found some information but nothing to give us hope. My husband went into a depression thinking this was a death sentence and I didn't know how to react to all this. We had two girls and a baby on the way when we got the diagnosis. The doctor didn't know how to answer any of our questions and we left feeling hopeless and scared. We were informed that you can only treat the symptoms but there is no known treatment for the disease, there is only one drug that was prescribed, Urso DS and we were told that it would only slow the progression of the disease and there is no guarantee that it will work. The doctors failed to mention to us that he would get excruciating abdominal pain as well as itchy skin unlike anything he has ever felt before among other symptoms that arise when the disease progresses. More or less your life will be consumed by pain and agony and there is nothing they can do!

"We both have never heard of this disease and we were both scared."

It's been a roller coaster ride for us. We both did a lot of reading on the disease but there was nothing on how to live and cope with it. It was difficult because we were going through it in different ways. In the beginning I would get mad at him for sleeping all the time and spending a majority of his awake time in front of the computer. He had shut us out and was totally unplugged from us. I was angry! I thought how could he be like this when we have three kids and we were both so young and that he wasn't fighting hard enough, and it wasn't fair that he was doing this to us. We ended up separating for a short while. I learned through all this that our communication skills needed to be a priority if we were gonna get through this. I also learned that he shut me out because he didn't want me to bear anymore of what he was going through since I became fully responsible for our daily things as well as a partially single parent to our kids. The computer was a way of him escaping his everyday reality. We needed to figure out how to function as a family with one parent being ill. I also had to prepare myself that I couldn't change what he was going through. I had to do what I could to understand what he was feeling and what the disease was doing to him. I started reading stories of other people living with this disease and it gave me insight of the nightmare my husband was living with. My eyes were finally opened. It is still a day to day battle but we are doing it. We both love each other very much and make sure we do what we can to stay connected. It was difficult for the children to understand why dad isn't like other dad's. Why their dad sleeps lots and doesn't take them out to do things.

They now understand that our family is different because of dad being sick but we are a loving family and we do what we can to make it work! I read many stories of families divorcing because they cannot cope and I understand!! There are days when I want to pack my bags and run! Not because of the lack of love but because of the responsibilities that lie on my shoulders. The reason I don't run? Well it takes work. I have to keep myself in check, that it is not only difficult for me but it's even more difficult for him.

I take the time to look at him and realize that I do need him as much as he needs me and if the shoe was on the other foot he would be by my side. When life gets to be too much I verbalise it not internalise it. That is what helps me most. We both realized that we need to be honest with each other about how we feel, that is the only way we will get through it is by being honest.

It's been 6 years since he was diagnosed and it's not any easier, it's still a roller coaster ride only we are just taking each twist and turns one day at a time.

- Nannette

Side Note:

Nannette shows us that no one is perfect and you learn from your own mistakes as well as others.  She has proven that you can go through hell and back and deal with it if you are strong.  Love and support will get you through hard times.  You can't feel their suffering or even they can't feel yours (emotional) but you can try and understand the best way you know how and remember why you fell in love with them in the first place.  It is never easy.  Amanda Lynn