Salt Lake

First I have to share some good news: I am off prednisone!! I got down to 10 mg and took tht for about a week and a half. Originally I thought I would have to sill take lower doses for awhile before I could completely stop taking it. But then the dr in Salt Lake told me I could just stop taking it, so that was a nice surprise. I was super excited. I have done pretty good going off of it this time. The one thing I noticed is that my joints are bothering me more now, but I'm going to start taking another medication for that. I have actually been feeling a lot better, especially the last couple weeks. I haven't been having very much pain, and overall have just been doing better.
On Friday I had another appointment in Salt Lake. Chris came with me and sat at the hospital wth me for 3 hours. First I saw the Nurse Practitioner again that I saw last time. She was really excited that I gained about 4 pounds since last time I saw her. I'm finally almost back up to my normal weight. She said she could tell that I feel better than I did, and that I have more color in my face. She said she wishes she could take the credit for me feeling better, but that that's probably not it. She said that prednisone must not be my friend like it is for other people, which kind of made me laugh. She told me for now to keep doing what I'm doing. She said to just keep in touch with her and let her know how I'm doing periodically. If I start to have problems, there are always other things that we haven't tried. I have another appointment in 3 months.
After that I had the breath test for bacterial overgrowth. She still wanted me to do it. I just had to drink some not-so-good-tasting-stuff and blow into a bag every 15 minues for about an hour and a half. They said that everything was normal, so that's good. There was another lab test I was also planning on doing there, but she said since I'm feeling better, we can hold off on it for now.
Once we were all done at the hospital, we wanted to have some fun. We went to the Hogle Zoo. I haven't been there since I was about 12. The weather was perfect and it was really fun. I couldn't believe how many people were there though. My favorite part was the giraffes.

After the zoo we went and walked around Temple Square. We took a tour of the Conference Center, which I have done a couple times before, but every time is different and I learn new things. It was really fun and a really good trip. We went home the same day.

A New Fence...and other stuff

Last week my brother Brock was here. They came and stayed with us for about a week now that Brock is all graduated from Dental school. So last weekend Kelby and Tysi came too and we had some fun. First of all, we got a new fence in the backyard. I wish I had before and after pictures, but for those of you who have seen our fence, you can tell that this one is so much better!

Here are some pics from the rest of the weekend:

Taylee thought this costume was pretty cool.

I love this little girl!

One night we went to the park and played some baseball. I was the best. haha

Cauldron Linn

Chris and I have visited Cauldrin Linn a couple times this year. It's crazy how much water is there. The second time we went there were even some people kayaking over it. It was really cool to see. Shoshone Falls has tons of water right now too. Next time we go I will have to take some pictures.

Busy, Busy, Busy

I have been pretty busy lately, but that's a good thing I guess. I bought this 2 weeks ago and have not had a minute to watch any of it. Sad. :( I'm going to watch some today though. Yay!

3 Good Things:

1. All my tests have come back normal so far (no Celiac, gallbladder problems, etc). I'm going back to Utah in June to do a couple that they don't do here.

2. I'm down to 20 mg of prednisone. In two days it will be 10 mg. I told the dr. I'm going off of it no matter how I feel.

3. I bought a car!! Yes, it's another Neon. I didn't go looking for a Neon, I just found it and it was a good deal. I did not want to go another summer with no air conditioning, so it was time to part with my dear old friend. I will miss the old one...we have been together for 8 1/2 years, but I am really really excited about my new one!

Old Car

New Car!

On the right track

Well I had my appointment at the University of Utah on Thursday. It went really well and I am feeling a lot better about things. We met with a nurse practitioner who spent probably an hour with us. She had all my records that Dr. Smith had faxed her. We talked about a lot of things. She said that about 40% of j-pouches fail, so that it's actually not that uncommon to be having so much trouble. She said some people end up going back to an ostomy eventually, but she said there are lots of things we haven't tried and that we are way off from that. She also said that she's not so sure that pouchitis is my main problem. Because of where my pain is located a lot of the time, something else could be going on. We are going to do a bunch of tests. I didn't do them there because of insurance purposes (they are not in my network, plus if I do it at St. Luke's I get a 25% employee discount). First she ordered a blood test for Celiac's disease. (I'm crossing my fingers it's not that). She said about 10% of people with irritable bowel diseases get Celiac. She also ordered some kind of breath test that detects bacterial overgrowth in the small intestine. When she felt my stomach she said she could tell there was inflammation there. Then on Friday she called me and said she's had a chance to look over my records more and wants me to do a HIDA scan (to check the gallbladder) and a couple other lab tests. She said it might feel like she's "throwing the kitchen sink at me" but I think it's good we're doing all this. She threw out a couple other things too like doing a pill camera to see everything, but I think we are just going to start with these other things first.

We also talked about a lot of different medications we can try. She's having me try a different probiotic than the one I take now called VSL #3. I've thought about trying it before and once Dr. Smith even gave me a prescription for it, but I didn't fill it because he didn't write it for the double strength dose, which is what the insurance pays for, and I never asked him about it again. There is actually strong research that it helps pouchitis. She gave me a different antibiotic to try and another medicine that's similar to one I already take but supposed to be better. We also talked about doing a low dose of an antibiotic (like Cipro) all the time, Entocort (a steroid like Prednisone but it's not absorbed so doesn't have all the side effects-I took it a long time ago before I had surgery), and she talked a lot about Remicaide. Remicaide is a drug that's only available in an IV, you get it about every 6 weeks. It's used a lot for Crohn's disease and Rheumatoid Arthritis. Dr. Smith has debated using it too but I think he was saving it as a last resort. She was kind of surprised I hadn't ever tried it. She also said it might be good for me because of the arthritis, we could kill two birds with one stone. But I think she wanted some of these tests back before we decided anything else.

A couple weeks ago I also did that blood test that Dr. Smith let me do for free. It didn't really show much except that I might be worse in 30 years...haha. He said that everything looked pretty normal though. The NP looked at it and said that that test is usually for Crohn's disease and usually there's a test they do before that to check for Crohn's disease (unfortunately sometimes people are diagnosed with Ulcerative Colitis when they really have Crohn's). So she is also checking into that to see if that got done or if we need to do that one too.

I had been taking 80 mg of prednisone, then 60, and started taking 40 that day. She told me to stay at 40 for now until we find out some things. She said she doesn't use prednisone very much anymore because there are so many other options that work and aren't as bad for you, so hopefully some of this other stuff will help and I can get off it soon. I'm tired of my poofy face and not sleeping well. :( All in all I think we are on the right track and I feel a lot less frustrated and hopeful!

volley ball, pizza, ping pong, and Clue

Well my mom and I went to Utah on Thursday and Friday this week because I had my appointment at the University of Utah on Thursday (more about that later). Thursday night we went to Orem and stayed at my Uncle Parley and Aunt Marilynn's. My cousin Katie planned a little get together with a bunch of my cousins around my age since I haven't seen some of them since like June. We had so much fun! It was really nice because usually there are SO many people around when we are together, but this time there was just a few of us and we actually got to visit and spend some quality time together. (But don't get me wrong because I LOVE it when ALL my cousins are there too). We ate some pizza, played like 5 games of volleyball, played ping pong, and watched one of our favorite movies, Clue. I don't know how many times we have all watched that movie together, but for whatever reason we get a kick out of it.

Here's the boys, Braden, Sam, and Shayne. Of course they wouldn't smile very good for me.

Me and Katie

Me and Aersta

Here's most of us who were there. Aersta and Katie's husbands were there too. Lizzie stopped by just for a minute and Kylee showed up at midnight when she got off work and stayed for a couple hours (yes we were up late).

We were also able to do some shopping on the way home. It's amazing how much better the shopping is there. I got some clothes for work that I have been needing. Anyway, it was a short but very successfull trip!