penfold_shush (penfold_shush) wrote in partners_of_ci,

Hello! I am new to this community

Hello everyone.

I began writing about my experience with chronic illness in my own journal and then discovered this community. I'm very glad to find it. As many of you know, there aren't many resources for people whose partners suffer from chronic illness.

I was only able to write out the first half of my story tonight.

My husband started getting sick in November 2005, but we didn't realize it. His energy level was decreasing slowly. He would get sleepy earlier and earlier and he needed to take naps more often. We both assumed it was depression. He was having trouble finding a job and I was the bread winner. He felt guilt and he was depressed. He agreed to go see a therapist soon. Before he did that, a friend of ours came to visit and we went out for brunch. At the restaurant, we noticed his eyes were very yellow. He had thrown up that morning and admitted that he had been having some gut problems and dark urine for a while.

He overlooked those things because six years previous, he had his colon removed to cure Ulcerative Colitis. He was given a J-pouch instead and was used to having occassional issues with his guts.

He saw a doctor on Monday morning and was told that he might be jaundiced because he had Hepatitis. The doc was great and got him tested immediately. It wasn't Hepatitis. The doc referred my husband to a good gastro doc. He saw that doc a few days later, but by now, his skin started to get itchier and itchier as it turned yellow.

After CAT scans and tests, they thought he had gallstones blocking his bile duct. He went in for an out patient procedure where they put a balloon stent into his bile duct to open it up. They also had to remove a lot of gunk and gallstones that had built up in the duct.

The procedure went smoothly, but it was no guarantee that it would fix things permanently. The doc said there was a lot of scarring in his bile duct. He called it Primary Sclerosing Cholangitis. He said it was common for people who have had Colitis or Crohn's disease to get this later in life.

It was all new to me. My husband already new it was a possibility though.

So we went home and hoped his duct would stay open.

He didn't get better. The itching got worse, the yellowing got worse and he wasn't feeling any better. He had almost no appetite. Most foods made him throw up.

So we planned for another procedure. This time they would have to put in a regular stent and keep it in there. It was the only option. You can't live with your bile duct closed up.

Since the first procedure was a little overwhelming for me, we asked that his mom come and help out. She was helpful. At first.

I am not ready to delve into the rest of this right now. I apologize. I'm going to have to save the rest of the story for another time.

To sum up, my husband is okay. We are still dealing with the aftermath of the extremely traumatic event. There is no cure for Sclerosing Cholangitis except to get a liver transplant, but that isn't even a possibility yet. My husband has to get regular blood tests to keep an eye on his liver enzyme levels. He got his latest blood tests this week and they were slightly elevated than his last test. It's not neccessarily bad news, but it's not very encouraging either.

I look forward to reading and sharing these stories with other people who understand. It is very comforting.

If you celebrate Thanksgiving, I hope you have a great one!
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