Monday, March 8, 2010

My ulcerative colitis story

Well I have been working on this post for quite awhile actually. I have wanted to write all this down in one place, so that I don’t forget anything, and decided this would be a good place for it. Also, I’m sure that there are lots of my friends and even family members who don’t understand or know a lot of what happened. I still get questions all the time asking how I am, and maybe this will help answer that. But first, there are a couple of disclaimers. 1. This post is bound to be very long-don’t feel like you have to read it. 2. This post will have very few pictures, as neither my mom nor I ever thought to take any during my 8 stays in the hospital. Though honestly, I’m sure if she had broken out the camera I would have resisted because I hated taking pictures of me when I had my prednisone face. And 3. I’m not writing this so anyone will feel sorry for me. I just thought it would be interesting to share. I am thankful for my trials because they make me stronger!

Ok, so it all started around my senior year of high school, maybe even the end of my junior year. I started noticing a faint pain on the left side of my stomach, every long once in awhile. It was never very bad, just kind of there enough to notice it, and as time went on it occurred more and more often. The next thing I started noticing was bleeding. It took me probably 3-4 months to tell my mom about it. I think I was scared that it was something bad, and never could find the right time to bring it up. Finally I did, and of course she took me to our family doc in the next couple of days. He declared it was just a fissure, and told me what to do to get it better. I was so relieved I didn’t worry anymore. I don’t know why I never thought that losing that much blood could not be good. Well, it never got better and I just figured it was because I didn’t try very hard to get it better.

I started my freshman year at ISU, and that’s when I started to notice things getting worse. I started getting HORRIBLE stomach aches all the time. I knew where every bathroom was on campus, and used the restroom before class, after class, etc. I remember being terrified that I would be giving a speech, and suddenly having that horrible ache come over me. As the year went on, I became very tired. It was hard work to walk up the hill to Reed’s Gym, so I would take the bus. After walking up two flights of stairs in the physical science building, it would take me several minutes to catch my breath. I thought I was just out of shape. Finally Conference Weekend in April I went home, and that was the first time that I got REALLY sick. I went to a movie with my friends from high school, Carrie, Tayli, and Liz (I even remember we saw Ice Age 2.) Afterwards we hung out at Tayli’s for awhile. I got home a little after midnight, and rushed into the bathroom. My mom was up watching TV and cross-stitching, and when I didn’t come out for several minutes she asked me if I was ok. I immediately burst into tears. The rest of the night was miserable. I finally threw up a couple of times, and then again in the morning. I had never been so sick before. I was in soooooooo much pain. My mom and I knew that it was not just the flu, but that it had to do with all the stomach pain that I had been having. I missed a history and statistics test Monday because I was still too sick to drive back to Pocatello. My statistics teacher required a doctor’s note to make up a test, so my mom tried to make an appointment with Dr. Dowdle (a gynecologist) in Burley, thinking maybe I had cysts on my ovaries or something, and if not, he would still be able to help. Of course he had no open appointments, so I just went back to the family doc and got the note, without telling him everything that had been going on.

I was able to finish out the semester, with good grades for the most part. A few weeks before school got out I started looking for a job in Burley, with no luck. I moved home and looked and looked and looked. I applied to approximately 30 places (I’m not exaggerating) and had several interviews. But I didn’t get hired for some reason or another. I was very frustrated because I was worried about saving money for rent and to fix my car, which was having problems at the time. But in the back of my mind I was also worried that I wouldn’t be able to hack working full time, because I was so tired all the time. Meanwhile my mom had made an appointment with Dr. Dowdle but we had to wait about 3 weeks to go. The week before the appointment, we went to a family reunion in Utah, in which we spent a day at Seven Peaks Water Park. I love that place, and I had a blast, but I remember running up the ramps to the slides with my cousins and noticing that I was the only one who ever seemed out of breath. Right before the appointment my mom and I were talking and she told me that I had done everything possible to find a job, and that the Lord must have other things in mind, and that He knew what was best for me.

Anyway, the appointment came and Dr. Dowdle said that he would start with treating me for IBS, and gave me a prescription. He said to come back in a month and if things weren’t better then we would talk about Plan B or C (ulcerative colitis or Crohn’s.) They also took blood that day. Apparently he called my house THAT NIGHT, but we weren’t home, because I was helping my mom clean a house. When we got home she noticed that he had called, but didn’t tell me because she didn’t want me to worry. The next morning he called again and told my mom that it wasn’t IBS, not to fill the prescription, and that I needed a blood transfusion immediately! I remember when my mom came and woke me up and told me, I pulled the covers over my head. I knew this could not be good. Apparently my hemoglobin was 4.5, which is ridiculously low. It should be more like 11 or 12. Before we left my Uncle Blaine came and gave me a blessing. So we went to the hospital and had a blood transfusion, during which I watched While You Were Sleeping, my all time favorite movie. While there I also saw Dr. Harris, a general surgeon in Burley, and scheduled a colonoscopy. He said after just looking at me that he was surprised I was not passed out on the floor. We waited more than a week because he was going on vacation for the 4th of July.

I had the colonoscopy, which was fine except the prep for it. The lady told me to mix the nasty drink with Gatorade, but it was still so gross it made me gag. I was supposed to drink 3 bottles, but I only got down 2. That night Brother Winn and Brother Rasmussen in our ward came and gave me a blessing. After the colonoscopy Dr. Harris told my parents that it was ulcerative colitis, and that I would need to stay in the hospital for a couple days. No wonder I had not found a job-the Lord knew what was going on. Poor Kyler was on the pioneer trek with our stake at this time, and came home to find me in the hospital. On the upside, the steroids they gave worked wonders and the bleeding stopped within a day or two, and I felt much better. I went home on the third day with prednisone. (I had no idea of the evils of it at this time!) It was actually a huge relief to know that there was a cause for everything I had been going through, and that there was treatment for it. I really wasn't expecting everything that eventually happened though.

If you don’t know much about ulcerative colitis (UC for short), basically it’s a disease where the lining of the colon (or large intestine) becomes inflamed and can get ulcers, which can then bleed. This causes pain, fever, nausea, vomiting, diarrhea, which can then cause malabsorption, anemia, and weight loss. It is not caused by stress, but stress can exacerbate it. It has a genetic factor (I actually have a cousin my age on my dad’s side of the family who was diagnosed our sophomore or junior year), and is an autoimmune disease. It is a lifelong chronic disease, with periods of remission and flares, and there is no cure except for removing the colon.

The rest of the summer went ok. I was able to make a little money working with my mom and also cleaning a lady’s house and watching her kids a few days a week in our ward. I started school again and that’s when things got worse. My mom called Dr. Smith, the GI doctor I had been referred to in Twin, and he started me on prednisone again, which is a steroid. About 3 weeks after starting the prednisone, one morning after being extremely sick all night, I called my mom bawling. She called Dr. Smith and he said I needed to come into the hospital. By the time he returned her call, I was feeling better and wanted to go to A&P that night and take my quiz, so I drove home that night when I was done, my bishop came and gave me a blessing, and the next morning we went to Twin to the hospital. When I was admitted I had a little fever, and really wasn’t feeling that great. I remember they kept bringing me food like soup. After a day or so they brought me real food, and the nurses were all excited, but I really just wanted more soup. I was there about 5 days, from a Thursday to a Monday. I wasn’t improving as much as the doctor wanted, so he wanted to start me on Cyclosporine, which is an immunosuppressant (often used for transplant patients), but you have to have it through an IV for the first 2-3 days. He gave me the option of staying and doing that, or coming back the next weekend. I opted for the next weekend so I wouldn’t miss more school and my mom wouldn’t miss more work.

So the next weekend we went back and this time I had IVs in both hands. I was there from Friday afternoon to Sunday evening. I had a microbiology test on Monday and an A&P test Wednesday, so I spent the whole weekend studying. By the time I left, I was feeling significantly better, but was very tired. I think I got a B on the Micro test, but I think it’s safe to say I didn’t do well on the A&P test. Looking back now I should have told my teacher what was going on and gotten more time to study. I think I just wanted it over with.

Well, the year went on, and I developed a VERY poofy prednisone face, one of the evil side effects. The drug works wonders, but for a price. I think my mom will also tell you I was a little moody, and I craved junk food all the time. I would do ok as long as I was taking at least 30 mg of prednisone, but once I got down below that, I would just get sick again. I had many times when I was very sick, and a couple times when I had to leave class early, and would be in tears by the time I reached my car, barely able to walk because of the pain. My doctor would tell me to call him every week, which I did, and he always acted like he had all day for me (he's amazing!) In December he started warming me up to the idea of surgery. He explained that you really should only take prednisone for 3-4 months at a time at the most, and I was already hitting that limit. If you were on it longer, it could cause permanent damage, and would basically be like trading one disease for another.

By February or March, I was still really sick, and it got to the point that even very high doses of prednisone (like 100 mg) weren’t helping. I should mention too that I had also tried many other drugs. Asacol is an anti-inflammatory commonly used to treat Crohn’s and UC, which I took. One drug, 6-mercaptopurine, an immune drug, I had an allergic reaction to and couldn’t take anymore. And I took antibiotics quite often as well. Also at this point it didn’t matter what I ate, I never felt well. I was living off of Darvacet every 4 hours, and using a heating pad every night when I went to bed, it was very frustrating. I used a large pill box in which I filled every week (still do, actually) and my roommates had fun telling me that that’s what their grandmas used. I was very fortunate to have wonderful roommates that year who were very fun, and despite everything I was going through, I managed to have some good times. My roommate Amy probably heard me complain a lot, but she was always there for me. Anyway, I never slept well because I got up so many times in the night, and consequently was always exhausted. Miraculously, I still got through school with decent grades and was accepted into the Dietetics program. (Yay!)

Around this time I was getting very tired of never feeling well, never sleeping well, and it was getting me pretty down. I tried to stay strong and postitive, but when nothing worked anymore, it was very discouraging. My only other option besides surgery at this time was a drug called Remicaid, which is only available in an IV, is very expensive, and you have to take it pretty much for the rest of your life, every 6-8 weeks. I was not very keen on this option because it could take several treatments to tell if it was working and I did not want to go through all that if it wasn't going to work and I did not want to have another school year like the one I was having. I wanted to be able to study and sleep and eat what I wanted, and not take a 25 pills a day (yes, really, I took that much or more in a day), and I wanted to go places without being on the lookout for the bathroom, and I wanted to be able to have fun with my friends and family.

One day in particular I sort of had a meltdown after talking to Dr. Smith and he once again mentioned surgery. I had a Chemistry and A&P test that week and I was exhausted from studying. I had been accepted to the Dietetics Program and was terrified that I would not be able to handle another semester of school. I also had a bad cold that I'd had for weeks because of the immunosuppressants. I usually tried not to tell my mom much of how I was feeling because then she would just worry, but I broke down in tears to her on the phone. She suggested I call my brother Brock to come give me a blessing (who thankfully lived in Pocatello at the time.) I did and he came over and gave me a very comforting blessing. We had a good talk and I felt a lot better about things. I was so thankful for the priesthood in my life and for the comfort it gave me. I know that that is one of the reasons that I was able to get through all of this. I think this is when I really decided that surgery was what I needed to do.

In April, I was pretty bad and Dr. Smith told me I could decide what to do. He had been recommending surgery, and my family fasted for me. I couldn’t really fast because of all the medication. He referred me to a surgeon in Boise and one in Salt Lake. We made an appointment with the one in SL because we couldn’t even get into the other one till like June. I went and saw Dr. Eyering in mid April and he totally agreed I needed surgery, so we scheduled it for mid May, after school got out.

That same week Dr. Smith put me on 100 mg prednisone, and said that by the end of the week if it wasn’t helping, then I could choose to go into the hospital if I wanted. He knew finals were approaching, and said if I thought I could manage without it, then that was fine too. The day after going to SL, I had a test in Meal Management and was too sick to go. The next day I called Dr. Smith and told him I needed to go into the hospital. I really needed some relief and I thought it would help me just enough to get through the last couple weeks of school. I didn’t go in until Monday because he wasn’t on call that weekend and I didn’t want to be there without him there. Kyler also had prom, which I didn’t want my mom to miss, and I had stake conference in Pocatello, at which Elder Oaks was coming to, and I didn’t want to miss that. So I was in the hospital from Monday to Wednesday night. I had a chemistry test Thursday that I didn’t want to miss. The nurses remembered me as the girl who constantly studied while being in the hospital.

That time the hospital stay and IV steroids and antibiotics did me no good, but somehow I got through finals. I think some people might have thought I was rushing into this, but it was a big testament to me that I really did need to have surgery.

So I moved home and the day came. A couple days before all my family was at my house and my brother Chad along with Kelby and Brock gave me a blessing. It comforted me so much and I think this is what gave me the strength to do this. We went down to Provo the night before, and stopped in SL and got blood work done and stuff. This time the prep was even worse than before. I opted to take the pills this time instead of drink the nasty stuff, which was going ok, until about midnight. We were sleeping at my Uncle Parley’s, and I woke up soo sick. I was miserable the whole night. Let’s just say I was more than gagging this time. Parley and my cousin Phillip had to give me a blessing in the middle of the night. The next morning I was supposed to shower with a specific soap, and I didn’t shower at all because I could hardly stand (I had showered the night before though, so I wasn't too worried.) I slid down the stairs very slowly and made my way to the car in my pajamas.

My Aunt Shirley and my brother Kelby were at the hospital waiting with my mom. Before surgery my heart rate was too fast, and the nurses seemed kind of worried. Then they asked me if I was nervous or something. Uh…YEAH! But even though I was as nervous as heck, I was okay with it, maybe even a little excited, because I wanted that stupid colon out of me! I had tried very hard to not let my thoughts wander about what could go wrong. I did make the mistake though of reading a Reader's Digest article a few days prior on the dangers of nights after surgery in the hospital. It talked about how at night is when mistakes happen because the nurses and doctors are tired. It had all these true stories that freaked me out. I made my mom promise she would stay with me at night, especially the first night. Anyway, I don’t remember much about after the surgery, except for Kelby being the great brother that he is, kept reminding me to push my pain button and giving me ice chips. The surgeon told my mom and brother that my colon was very diseased and never would have gotten better on it's own. Phew! We made the right choice! We had also planned on a laparoscopic surgery, but he wasn't able to do that because he said when they put me under my blood pressure dipped really low (he attributed that to the prednisone and my body just being under so much stress), so he went ahead and did an open surgery to save time. This really stressed me out when first found out, but it was okay...I also remember that it was the day of the American Idol Season Finale, and it was on the TV, but I couldn’t stay awake enough to watch it. I told me mom to watch and tell me who won, and when I asked her the next day she couldn’t remember. It took me like 2 days to figure it out!

The surgery I had was a colectomy with an ileal pouch anal anastomosis (IPAA), or J-pouch for short. Basically they took out my entire colon and created a pouch in the shape of a J out of the small intestine to take the place of the colon. I had a temporary ileostomy for two and half months while that all healed, and then had the ileostomy reversed. If you want more of an explanation or pictures, here's a good run through of what they did:
http://jpouch.org/

So I ended up being in the hospital for 8 days, instead of the 3-5 that my doctor had predicted. After the first couple days, I was able to start eating solid food again, but the next morning I woke up with a bad stomach ache. My stomach was very distended and eventually I started throwing up, a lot. It was not fun. So lucky me, I got to start over with clear liquids again, full liquids, etc. I was also having some problems breathing, even after several days. They would come check my oxygen stats and they’d be low, so they’d make me put the oxygen back on. I began to get very frustrated. Every time I tried blowing into the little thing that makes the ball go up I could barely get it to move. I remember once I tried getting up to go walk and I sat on the edge of the bed trying to catch my breath for like 10 minutes…I couldn’t breathe and my chest hurt so bad I started crying. I thought I was just a wuss. Then the respiratory therapist came and told me I wasn’t doing my breathing exercises enough, (and she was not very nice about it.) She told me I needed to do it 10 times every time there were commercials and she would be back in an hour and it better be better. So I did… I tried really hard, and she came back and it was worse. I felt like a failure. Eventually they released me, and quite honestly, I don’t know if the doctor ever knew there was this breathing issue going on.

We got home on a Tuesday afternoon. We were greeted by balloons, streamers, a poster, and TONS of cards made by my many aunts, uncles, cousins, siblings, nieces and nephews, who were all together that weekend for Memorial Day and had all come over and decorated our living room. Right here is where I would insert a picture of that but I haven’t been able to find it on my computer. It’s probably on my mom’s computer. Anyway, it was really cute and made me feel special. The next morning I woke up and ate breakfast. I fell asleep in the recliner with a big quilt on me. I woke after about 45 minutes or so and I was SWEATING hot. I kicked the blanket off and told my mom that I was so hot. She took my temperature and it said 104. She took it again and it said 104. She got a different thermometer and it said 104.1. So she called the surgeon’s nurse who said, “Go to the ER right now.” So when we got there we were checking in and my mom explained to the lady at the desk that I had had my whole colon removed the week before and the lady was like, “You mean part of it.” My mom said, “No, the whole thing.” The lady said, “Ok, so part of it.” My mom: “No ALL of it!” Some people… Anyway, they did a CT scan and some x-rays and found a blood clot in my liver that looked like it had traveled there from my lungs because they looked so distressed. Hmmmm…..no wonder I couldn’t breathe! The doctor in Burley was floored that they hadn’t found this in SL. So, I was admitted for about 6 days and was on blood thinners and so forth. President Young (who is in our ward and used to be our stake president and is now the stake Patriarch) came and gave me a blessing. I got to go home Monday.

Wednesday night I woke up a little after midnight and was throwing up. I felt pretty sick. My mom was pretty worried so we went back to the ER. They did more x-rays and another CT, but couldn’t find anything. They gave me something for the pain, and when I felt better I got to go home.

Friday I started not feeling that great again. I remember distinctly eating lunch and only being able to eat about half of it. I didn’t eat anything for the rest of the day, even though our neighbors, the Christensens, brought us dinner, which was lasagna, which is my favorite. Finally around 11:00 or midnight my mom convinced me to eat a bowl of cheerios so I could take a pain pill with something in my stomach. I woke up about 3:00 throwing it all up. I felt a lot better afterwards and convinced my mom not to take me to the hospital. But the rest of the night was pretty rough. I woke around 6:30 that morning and my stomach hurt really bad. My mom heard me groaning from the hallway. She called the doctor in Burley and she said to come in to the ER and maybe they could figure out what was going on, and if not, they could at least give me some relief from the pain.

So back to the ER again. More x-rays and this time an ultrasound. They decided not to do another CT since one had just been done and didn’t find anything. The ultrasound showed that there was something up with my kidney’s but they still weren’t too sure what. They had a REALLY hard time getting blood and starting an IV because I was dehydrated. (By this time my veins were shot and my poor arms were soooo bruised, I wish I had pictures, they looked terrible.) They eventually got a little blood from my feet. I was still in a lot of pain, so eventually they decided to send me back to SL because the surgeon would know more about what to do. Brother Winn and Brother Rasmussen came and gave me a blessing before we left. I rode all the way to SL in an ambulance. I was able to sleep some of the way, but it was pretty miserable. Every time we went over a bump I winced. I also remember being soooo thirsty. My aunt Bev made sure I had some ice and my chapstick to take with me. (She knows I can’t go without my chapstick!) My mom followed us in her car. When we got closer to SL I got another fever and my blood pressure was dropping dangerously low. This is when they turned the ambulance lights on, which freaked my mom out. They took me straight to the ICU. They did more x-rays and tests, and had to start another IV because the one I had didn’t even last, which again, took several tries.

They found that my adrenal glands were failing. The adrenal glands are located on the kidneys and they supply a hormone called cortisol. Prednisone (the steroid I had been taking for months) also gives you cortisol. So when you take it for extended periods of time your adrenal glands stop producing cortisol because you are getting it from the prednisone. When you go off the prednisone, you have to taper off of it very slowly, which I was doing. This is to give the adrenal glands a chance to kick in and start producing cortisol again. Some people’s adrenal glands never kick in again so they have to take a low dose of prednisone for the rest of their life. The doctor had some name for all of this, which I don’t remember. So anyway, they had to give me “stress doses” of solu-medrol (the IV form of prednisone). They also found that I had a small bowel obstruction, which is not uncommon with the surgery I had. So they had to place an NG tube (a tube that goes down the nose and throat into the stomach or intestine). This can be used to feed someone or for suctioning. In my case it was for suctioning to help clear the obstruction. So I spent the night in the ICU. I also had very low potassium levels, so they had to replace the potassium through the IV. Potassium burns somewhat while going into the vein, and my nurse told me that wrapping a warm towel around it can help relieve that. She was so nice and kept getting me warm towels all night.

The next afternoon all my siblings came to see me, without their spouses or kids, with the exception of Tanner and Kelsi. I was very touched that they all traveled a long ways in one day to see me. While they were there I was moved out of the ICU. I remember actually missing the ICU bed because it was so comfortable. Haha!

That night, Sunday night, my mom went and slept at my cousin Lindsay’s apartment who lived like 5 minutes away from the hospital. I had told her to go and that I would be fine by myself. Well I woke up in the middle of the night to find my IV had come out. I think I dreamed that I pulled it out, and I might have really done so. It was bleeding all over the place because of the blood thinners I was on. The nurse walked in then and saw and went and got a CNA to help her. They got the bleeding stopped and everything cleaned up. The nurse didn’t even want to attempt starting another IV because she knew how hard I was to start on. So she enlisted the help of an “expert,” someone who worked like in the ER and had more experience with hard-to-start patients. But even so, it still took 3 tries. About this time I became very emotional and started to cry. The nurse was not sympathetic and said in a not so nice way, “Why are you crying?” I brushed her off and said that I was fine. Once everything was taken care of she left. The CNA was more concerned and stayed in the room with me. She started talking to me and asked if I wanted to call my mom. So she gave me my phone and I got a hold of my mom and she was on her way. While we waited for her to come she just stayed and talked to me about normal things. She asked me about school, my family, etc. I told her about my nieces and nephews. And even though I was still emotional I was starting to feel better. Of course, when my mom walked in I started bawling all over again. I think I had just been holding everything in and this was just the straw that broke the camel’s back. I never knew the CNA’s name but I was so grateful for her kindness and willingness to listen to me. I saw her a few days later when I was leaving and told her thanks. She acted like it was not a big deal but it was a big deal to me. I will always remember her kindness.

The next day, Monday, I received a PICC (Peripherally Inserted Central Catheter) line. This meant no more starting IV’s all the time and no more poking a thousand times for blood every morning. A PICC line can be used for long term, several weeks if need be. I only had the PICC while I was there in the hospital. The doctor wated me to go home with it so that it could be used to draw blood from, but I talked the nurse into talking the doctor into taking it out.

Anyway, I also received a blood transfusion that day, which made me feel tremendously better. They also removed the NG tube, but before they did that they put some contrast through the tube (so I didn’t have to drink the nasty stuff) and did a bunch of x-rays. The contrast was actually able to push through the obstruction and clear it, which was a big relief. The doctor had said that if it didn’t clear up soon then he would have to go back in and do more surgery. He also said that if that was the case, he would reverse the ileostomy while he was at it, which would have made me happy. But in the end he said he probably wouldn’t have because he would have wanted more time for everything to heal. But surgery wasn’t needed anyway.

So I stayed this time until Thursday. I was feeling quite a bit better and I was glad to finally be home. A few days later I was finally feeling up to going out somewhere and I was wanting to get out of the house. Project Mutual Telephone (PMT) which is down the street from us was having a big promotional thing going on and were giving out lots of prizes and free food, so we decided to walk down there and check it out. I made the mistake of eating lots of fresh fruit. They had really good grapes, strawberries, pineapple, etc. and I ate a little plateful. Near the end, my mom won a Goofy phone, which was exciting, but I started to not feel so good. By the time we got home I was feeling horrible and I just sat on the couch and cried for a long time. My mom kept trying to get me to let her call someone to come give me a blessing and I didn’t want to because I didn’t want to bother someone AGAIN. Eventually I let her call Brother Christensen and Brother Rasmussen and they came and gave me a blessing. I actually threw up right before they got there, which helped, but I was still miserable. My mom called the doctor in SL and he said it was probably another obstruction and to ride it out, and if it wasn’t improving in a couple more hours to go to the hospital. It's actually not uncommon to get small bowel obstructions after the surgery I had, though I did not know that at the time. Luckily it finally started to let up a little. I eventually fell asleep on my mom’s bed once I wasn’t in so much pain and could feel things moving through again. I learned after that to chew my food, especially my fruits and veggies, VERY well.

After that things started to really improve. The biggest thing was trying to get my strength back. It took a long time to get my energy back. Just showering for the day was sometimes all I could handle doing. But I had a good rest of the summer and was able to start getting my strength back.

The first week of August I went back to SL to have the ileostomy reversed. Before the surgery the surgeon told me he was going to Park City for the weekend, and no matter WHAT, I was not going to leave until he got back and saw for himself that I was doing good. He was worried because of all the complications I had had and because I lived so far away. This surgery went off without a hitch. My mom asked me if I was going to miss the ostomy and my answer was a big resounding NO. :) Once I got the hang of things, it was just fine, but I was glad to not have to deal with it anymore. I had the surgery on a Thursday and was able to go home Monday. I did really well. All the nurses kept telling me how much better I looked this time than previous stays there. I got to where I walked around the huge nurses station in one minute. I was so bored and was doing so good, and the other doctor, who was my surgeon’s partner, really wanted to let me go home, but he was under strict orders that I couldn’t go till my doctor got back. So I got to go home Monday and that was that. After that it took some adjusting and patience to start feeling better. Even though I didn’t have a diseased colon anymore, I was getting stomach aches again. The doctor assured me that this was perfectly normal, because the small intestine had to adjust to taking the place of the colon.

I was able to start school again in a couple weeks and after awhile things started to really improve. I started learning what things (like fiber) would help me feel better. I started taking a probiotic, which helps a ton. For awhile I was having problems with pouchitis. Pouchitis is when the pouch that they created out of the small intestine gets inflamed. The symptoms are similar to ulcerative colitis. For several months, basically from January to October I was always taking antibiotics. Every time I would finish a round I would start not feeling great again, but when I would take them, I would feel better than I had felt in years. Eventually I learned that Metamucil helps me way more than Benefiber was, and now whenever I don’t feel great, I take some Metamucil and I feel tons better. Mostly I just learned to take care of myself and feel good. If I slack off, I don’t feel so great. But let me be clear that when I say I don’t feel great, it is nothing compared to what it used to be. Mostly it’s just annoying. But for the most part I feel really good!

Last March I had a bone scan because prednisone can take calcium from the bones and cause osteoporosis. It showed that my bone density was on the very low end of the normal range. So I started taking 3 calcium pills/day, which was recommended by my GI doctor. I have continued to follow up with him and things are going well. I have kind of slacked off on the calcium lately, but I drink milk and eat yogurt and cheese like crazy. Also this summer I started having a lot of pain in my knees, no matter what I was doing. At a check-up with Dr. Smith, he asked me as usual if I’ve been having joint pain and I explained that my knees had been hurting all the time, when I was sitting, standing, walking, sleeping, etc. So they did a blood test and he called a few days later saying my ANA (antinuclear antigen) was really high, indicating arthritis. He didn’t specify, but I know that ANA is used to test for autoimmune diseases like lupus and rheumatoid arthritis. I also know that rheumatoid arthritis, or just joint pain in general can go along with ulcerative colits, even when the colon is gone. The doctor also said it could just go along with the pouchitis flare ups, which I have noticed happens with me. I take Asacol, the anti-inflammatory that I took before I had surgery to help with this. But most of the time they don’t bother me.

So I just wanted to share this story and let everyone know that I am doing well. I’m so thankful for everyone who has been there for me along the way. I am so thankful for my family who stayed with me at the hospital or at home whenever my mom couldn’t be there. I’m thankful for everyone who helped my mom with her job so she could spend more time with me. I’m thankful for the ward who made sure Kyler had food to eat and was ok while I was in the hospital, who brought us meals, helped my mom financially when she had to miss so much work, brought me flowers, books, blankets, and many other gifts, who visited me in the hospital, and for the MANY MANY phone calls on my behalf. I’m thankful for my friends and roommates who let me complain and were there for me along the way. I’m thankful for my friends who visited, called, brought gifts (even though you didn’t need to), and who genuinely care about me. I'm sooo thankful for the priesthood and for the many priesthood holders who dropped what they were doing to come give me blessing after blessing. And I am so so so thankful for my wonderful mother! She was always there for me and I am so thankful for her love, encouragement, and patience with me. She took good care of me and slept in a plastic chair for like a month! I love her so much! Thank you thank you everyone for everything!!

I have a testimony of the gospel and know that without it I would not have been able to get through this and continue to deal with it on a daily basis. I love my Heavenly Father with all my heart and know that through His atonement, he knows just what I went through and is always there for me no matter what. I know that through this I gained a stronger testimony of the atonement and of patience. I know that the Lord IS aware of what we are going through, and that he places people and the priesthood in our lives to help us along the way. I grew closer to many people through this and am so thankful for that. My family was with me every step of the way and I am so thankful for the wonderful family that the Lord has given me. I just want everyone who is reading this to know that I love the gospel!

12 comments:

Jill and Levi said...

You are amazing! I remember when all of it started our freshman year, but I guess I didn't realize it was so serious. What a great roomie I was huh ;) Glad to hear you are much better! Love ya!~

Lorraine said...

An amazing read. I am glad you are doing lots better. While You Were Sleeping is one of my all time favorite movies too.

Dani said...

Thanks for sharing Jill. I had no idea you were in the hospital that many times; I knew it was a lot, but 8?! That's insane. I always feel bad when I think of how much you have had to go through the last few years; I'm sorry I wasn't there for you more. Even when we were roommates I had no idea the extent of the pain you were in, and I wish I could go back to that time and be a better support for you. You are one of the strongest people I know and I look up to you in so many ways. Normal people would not have been able to go through what you went through and still get through the tough school program that you did, and continue to do. You are AMAZING girl! And I love you soooo much and hope that the worst of your trials are over (because if you ask me, I think you have had more than your fair share of trials!)

p.s. I didn't know lasagna was your favorite?! I thought you didn't like tomatoey stuff?

Johnny and Maren said...

Wow, Jill. I remember a comment you made in class once about you having your colon removed, but I had no idea what it all entailed. Pretty darn amazing if I do say so myself. Thanks for sharing =) Good luck on finishing your internship and studying for the test of your life! Clearly you have been through a lot more, so you should do great!

Lana Boehler said...

Jill You are AMAZING! I had no idea you went though all that. I still remember my mom calling me and telling me that she saw you and you were sick. :( That story is a huge testimony builder. Glad you are doing better. Love ya.

Halfords said...

I'm so glad you wrote this. I remember when you were in and out of the hospital but being married to a male cousin of yours I don't always hear the details. What an ordeal. I think you have endured it well.

We love you!

Jill said...

Danielle and Jill, don't feel bad at all because I didn't even know how bad it was. I hardly ever even mentioned it to my mom that year. Danielle I remember once that year when I got sick, you had a glass of water waiting for me when I came out of the bathroom and you were all concerned, I thought that was so sweet and have always remembered that!
Lana-you are so sweet, I love the Willow Tree you brought me and I was so touched be that.
Maren, I'm excited to read your blog! I'm glad you found mine!
Amanda-I remember you and Clint visiting me in SL when you were on your way back from Burley, and that meant a lot to me!
Lorraine-While you were sleeping rocks!
Everyone thank you for being such great friends/family!

Brock and Kristina said...

Jilly Bug!!!
I'm glad you wrote all that down! Wow. Even hearing most things from Brock, I still missed a lot of it!! I remember when things were scary and dicey there, but hearing it all in your words makes it so much more emotional and scary!! I am so glad you are doing better and I hope that arthritis stuff goes away and leaves you alone. Do you know if it is long term? Yuck.
You are so AMAZING. Seriously. I didn't hear your complain hardly at all about any of this stuff. We love you so much and Taylee loves you too!!! (and Porter, but he can't really talk yet and tell us how much)

SAYDA said...

Wow Jill, I knew you had UC, but I never knew you went through all this. You are such a strong person. I'm sure this has only made you stronger. I am so glad that you are feeling better. You are quite a special young lady. Thanks for sharing your testimony.

Jill said...

Kris, I don't know if the arthritis is long term. Dr. Smith doesn't really know either, haha. We'll just have to see. Danielle, I hate fresh tomatoes, but tomato sauce, ketchup, etc, I don't mind. Plus my mom's lasanga is not tomatoey at all. (She's actually made your skillet lasanga a couple times too and it is yummy!)

LINDSAY said...

Jill thanks so much sharing. I'm so glad that you wrote this down. I didn't realize how much you were in the hospital either. You are AMAZING!!! I just kept thinking that there is no way I would have done school. I am a BIG wuss!!! I would have quit the first semester. :) You have a great ward and great siblings and Uncles (other family too) that was always there to do a blessing. I'm so happy they were able to be there for you. You are such a strong person. I love you so much and I am sooo happy you are finally feeling better!!!

Jill said...

awww...thanks Lindsay, I love you too! I always appreciated you being there at the hospital too, letting my mom and Kyler stay at your house, and for the cute pajama pants! and yes, I am very thankul for all the blessings I received! love you tons!