Answers......finally

On December 1st I had an appointment in Salt Lake for a sigmoidoscopy. Last time we were there we scheduled it for December 14, but the nurse practitioner told me (and told Chris to make me) to call her if I got worse before then. I got really bad a couple weeks before that and ended up in the ER. I have been feeling pretty crummy and not sleeping well. The idea was that hopefully I WOULD get worse, and we could do the scope then when it was bad, so that hopefully it would show something. So after a million phone calls we finally got the appointment on the 1st. We went down Wednesday night (the 30th) to Salt Lake and saw the lights on Temple Square. Chris had never been before and it had been a long time since I had been so we thought that would be fun. We left right after work and got there around 9:00. We walked around for awhile and this is just a small part of what we saw.

The lights and Nativities were amazing and we had fun just walking around together. We stayed in a hotel in downtown SL just a few blocks from the Temple.
The next morning we had to be at the hospital at 10:15. We got there and "checked in" and then waited to register. When we registered I had them change my last name. After that we went down to endoscopy and "checked in" again, and waited some more. Finally we went into a little room and I answered a bunch of questions that I'm sure they should have already known (allergies, current medications, etc, etc, etc). I changed into this lovely gown and got an IV started and we waited again. We watched the news about the horrible wind storms happening in Utah while we waited. After about 15 minutes they came and got me. Chris went to the cafeteria to get some food since he was starving. Since I couldn't eat that morning, he didn't eat. :) When I got back there, everyone was pretty confused because my name on my bracelet was different than the name on the board. Finally one of the nurses told me why they were confused and I explained that I just got married and changed my name in the system when I registered. They hooked oxygen and all kinds of monitors up. The doctor (who I had never met before) came in and talked to me for a minute. She was really nice and I liked her right away. The nursed asked me where we went on our honeymoon. I told them the Bahamas, and one of them who was giving me medication to put me to sleep, told me to just go back to the Bahamas. I laughed and that is the last thing I remember.

When I woke up 20 minutes later the first thing I asked for was Chris. They went and got him and he came back right away. I just wanted my Chris. :) I was freezing cold and he made sure I got a warm blanket. I was a little groggy but awake enough to listen and know what was going on. The dr came after a few minutes and told us what she found. She said that my pouch looked good except for a large ulcer and a small ulcer in it. Up above the pouch, in the small intestine she found more ulcers. She told us that to her, it looked like Crohn's disease. We knew this was a possibility but it was a little weird that she was actually saying it. I have been tested for it before and it has been negative. Anyway, she told us she took some biopsies that would tell us for sure, and she wanted me to stop by the lab and get blood drawn before we left to help confirm it. She also said I have something called cuffitis. I have heard of it, and I think even Dr. Smith has mentioned it, but I never really understood what it was or how they knew you had it. She explained that when they remove the colon, they have to leave a tiny part (like a centimeter or two) to connect everything to the rectum. That is called the cuff and it can technically still have ulcerative colitis, and get inflamed and cause all the same wonderful symptoms that you had before. Makes sense.

After I was a little more awake we got to go. We went to the lab and waited some more. After I was done, I was STARVING so we went to the cafeteria so I could get some food. I ate a big piece of pizza and a slice of cheesecake. Chris was so proud of me. :) I have lost about 10# in the last 2 months, so he gets really happy when I want to eat. :) By the time we left it was a little after 1:00, so altogether we were only there about 3 hours. We drove straight home-well Chris drove and I slept most of the way. He said he saw 6 semi trucks tipped over on the side of the road, and several more just parked on the side of the freeway because of the wind. Crazy. We stopped and saw my mom for just a few minutes and were home by 5:30 or so. It was a long day.

The dr had said that it would take about a week for the biopsies to come back and that they would call me when they got the results. So I waited a week and when I didn't here anything last Thursday, I called and left a message Friday morning. Keisa Lynch, the NP called me back about an hour later. She said that the dr thought that someone had already called me, so she apologized. She told me that it is fore sure Crohn's disease. I wasn't too surprised. For a long time it was my greatest fear that I would find out that I really had Crohn's, but now it is just relieving to know what is wrong. For so long I've been told it's just pouchitis, but then they would say my pouch looks fine. I'm sure that some of the times that has been the problem, but I think back in February when I was in the hospital, it was Crohn's disease further up where they couldn't see, because that's where my pain was. Anyway, I asked the NP if she thought that it had been Crohn's all along, and she said unfortunately, yes. She said that it gets misdiagnosed a lot, but that the testing for it has improved a lot over the last 5 years. She said that it is a bummer that I have already had surgery and had my colon removed, but I almost think I would have had to do that even if they knew. The surgeon told my mom that I had one diseased colon and that it never would have gotten better.

The NP told me that the dr wants me to start a medication called Cimvia. It is a shot that I would give myself once a month. It does the same thing as Remicade (the medication in an IV), but she said this would be better because Remicade is not good to take if you want to have kids. The Cimvia should also help the Rheaumatoid Arthritis, which I have also been having a lot of trouble with the last couple weeks since it has gotten colder. I'm excited to start it and I think it will help. I have been talking with drs for the past 5 years about starting something like Remicade, but at the time surgery felt like the thing to do. This group of medications is more successful for Crohn's than it is for UC, so I didn't want to try it, and then after a couple months find out it wasn't helping me and go through another school year like the last 2 that I had had. I just wanted to take care of business. :) She also told me to let her know if I lose any more weight. She was not very happy to find out that I have lost more weight since the last time she saw me. I know how important it is to gain some weight, or at least not to lose anymore (I am a dietitian) but it has been a big challenge lately. I think once I start to feel better though, I will be able to start gaining weight.

Well I really feel like we are on the right track now. I am feeling much more optimistic and I think we can get things under control now. I am so thankful for my wonderful husband. He takes such good care of me. Also so thankful for the prayers and fasting of our family. I have wonderful people in my life and much to be grateful for.

Well sorry for the marathon post but there is an update. Mostly for myself since I am terrible at keeping a journal. I like to go back and read how I was feeling at certain times, so everyone who reads this gets to too. :)