Unexpected Turn of Events

I thought that I would try to write an update on what's been going on. Actually a ton happened but I'm going to try to make this as simple and to the point as I can but it might still be a bit lengthy.

So since my last post I continued to improve little by little everyday. Last Wednesday (the 14th) we took a trip to Logan to visit a friend of Chris' dad who we were going to talk to a little about what she knows about Crohn's and diet, etc. As the day went on I began to feel worse and worse and by the time we reached her house I was in a lot of pain. We were there for awhile before I was in tears and decided that we needed to go to a hospital. I was having symptoms of an obstruction, and hadn't been able to go the bathroom since we left our house that morning. We drove to a hospital in Logan and went to the ER. I was in so much pain all I cared about was getting some relief. They gave me pain meds, but had to give it several times before the pain was even bearable. They did a CT scan and said that it showed maybe some air and stool in the intestine, but nothing too significant. At this point I had never been in this much pain before in my life. I cried. A lot. I really didn't think that the hospital in Logan would try to make me go home in that much pain, especially since my home was 3 hours away, but they basically made me leave. We stopped at a gas station before leaving town and I didn't think I could make it. I threw up some (I had also thrown up CT contrast in the ER) and I told Chris I could not ride in a car for 3 hours, but he said we just needed to get me to Twin because they are familiar with me and could help me more and that the ER in Logan would just send me home again. Luckily Chris' dad was with us so he drove while I laid down on Chris' lap in the backseat. Now at this point I thought it was the worst pain I had ever experienced and the worst/longest 3 hours of my life. Chris gave me a blessing and I was able to sleep some, and eventually we made it to Twin.

We dropped off Chris' dad but I wouldn't even let Chris take me home, so we went straight to the hospital. They gave me more pain medicine but I was still in so much pain I could hardly stand it. We weren't in the ER for very long when they told me that Dr. smith was on call and was admitting me. Chris went home about 5:30 so he could get ready for work and his dad came back and stayed with me until my mom got there about 7ish. They did an x-ray which showed lots of stool in my intestine so Dr. Smith wanted to do a sigmoidoscopy to help decompress it and get it out. (BTW, sorry if this is TMI). They weren't going to be able to fit me in until the afternoon but I was in so much pain that they were able to bump me up to 10:30. I was really happy that Dr. Smith was actually on call and I felt he wouldn't stop trying until he had some answers. Well I remember waking up from the procedure and Dr. smith explaining to me that they were going to life flight me to SL to the U of U Hospital. It was all kind of a blur after that. My mom texted Chris and told him he needed to call her so he took his break early. After talking to her he told his supervisor that his wife was being flown to SL and went home and packed some things and came to the hospital. Dr. Smith was able to clean out my J-pouch quite a bit, but when he could actually see the intestine itself, it looked sort of blue and like it was not receiving the blood flow it needed for the tissue to survive. He said he'd never seen my pouch look like this before. He wanted me to go to SL in case I needed surgery, they needed to remove or reconstruct my pouch, etc.

We were originally going to fly in a helicopter, but the weather was bad so we had to take an ambulance to the airport and get on an airplane and then fly into the airport in SL and taking an ambulance to the U of U. My mom drove Chris' car to SL and Chris rode on the plane with me. I was a little disappointed that he couldn't sit in the back with me because there wasn't room for him, but he got to sit in the very front with the pilot which he thought was way cool.

Well I wrote this above part a few days ago when I was feeling a little better....

After all this, a bunch of other stuff happened that I will write about in another post. But I just want to give an update of where we are right now. Here is a message that Chris sent to his family that explains what happened.

Sunday, March 25, 2012. 5 PM.

This message will be too long for a text message so I'm sending it on Facebook. Jill was scheduled for a sigmoidoscopy for tomorrow morning to get some biopsies to test for a few viruses. They moved the procedure to this morning at 11. They went in and got some biopsies. After she woke up, the doctor thought it might be a good idea to get a few more biopsies to test for a few other things. When going in the second time, they noticed a perforation in the bowel about 1 inch in. They immediately withdrew the scope and let Jill wake back up. They x-rayed her and compared it to previous x-rays to when the perforation occurred. They found that it happened this morning the first time they went in. It was decided that it probably wouldn't heal on its own and they didn't want to risk that especially since there was a lot of stool in her intestines that could escape into her abdomen and contaminate other organs. All this happened from 11 this morning till 4 this afternoon. She went into surgery at 4:10 this afternoon (Sunday). It's expected to take 3 hours give or take 30 minutes. Her J-pouch is in such bad shape that they want to give it time to heal so she will wake up with an ileostomy bag. It's supposed to be temporary but it might be permanent if the J-pouch doesn't heal. They are going to fix the perforation with some tissue from the J-pouch. While she is in surgery, they will try to repair any of the strictures that are accessible. It's called strictureoplasty if you'd like to look it up. As the week has gone on, it's been more likely that she would have surgery on Thursday. It's unfortunate that there was a perforation but because of it, the surgery on Thursday is cancelled so we might be coming home sooner than we thought. I gave her a blessing and she gave me a smile before they wheeled her into the operating room. Hope to see everyone soon. We appreciate the prayers and all the help.


Sunday, March 25, 2012. 7:15 PM.

The surgeons just came out to talk to us. Her J-pouch looked really bad and in terrible shape. Some of her intestines and the J-pouch were actually out of place and looped around each other so they decided to take out the J-pouch. They told us that her intestines were in good shape and not to a point to cause all the pain she's been having. The surgeons were optimistic that she should feel much better when she recovers.

Monday, March 26, 2012. 1:30 PM.

Jill’s Mom and I saw Jill right after surgery last night and she was in good shape. I had never seen anyone after surgery so I didn’t know what to expect. All her doctors and nurses were very surprised at how well she was doing considering how malnourished she was. I took their word for it that she was doing good cause to me, it looked like she was hurting bad. I guess that could be expected though. They put her in the Surgical ICU because of how suppressed her immune system was and they thought she might become septic. But she’s doing great. It was hard to leave her last night but Nada and I needed some sleep. We came in again this morning and her bed was tilted up and she was watching TV. She’s been on two walks this morning. The doctors are very pleased that she is doing so good. Her small intestines are in good condition. They had to remove 30 centimeters of the end of it but the rest of it was good. She also woke up with hardly any feeling in her left arm. The doctors think it may be from laying on it during the surgery and that maybe a nerve got pinched. They think it will get better over time. Overall, she is doing better than expected. Doctors say 7 to 10 more days in the hospital for recovery.

Wednesday, March 28, 2012.

This is Jill again. I am doing much better. The biopsy that they did to test for the virus CMV came back positive. The doctors think this caused the problem with the J-pouch. I was moved out of the ICU Tuesday. I was having a lot of pain the first couple of days but we think we've got it under control now. They left my incision partially open because of the risk of infection but they are planning on closing it with staples tomorrow. The feeling in my arm is coming back slowly. I am able to lift it up some and grip some things which I could not do right after surgery. They are still concerned about my nutrition status but I did get to drink juice yesterday and I might get to have Jello today. I am still receiving TPN. Last night I went outside for the first time in almost two weeks. Today I get to wash my hair for the first time since Friday! Because of all this, I have a permanent ileostomy, but I am looking forward to feeling good again! Things are going better than the doctors expected and hopefully we will be able to go home early next week. Thank you for all your prayers, fasting, thoughts, phone calls, visits, love, and support.