Number 18

That's right, I just got out of the hospital for the 18TH TIME! This was my 5th surgery (6th if you count my surgery for my sinuses). All this has happened in the last 7 years. I wrote in my last post that when I was in the hospital in November for another bowel obstruction, the surgeon wanted to do surgery the next day. We convinced her to wait a couple weeks, though. This allowed us to get most of our Christmas shopping done, Christmas cards mailed, make some freezer meals, and get a plane ticket for my mom at a cheaper price. Chris also finished his last big project for school the day before my surgery. Here is our tree all decorated with presents wrapped!

First to give just a little update on the last couple of weeks…I just happened to have an appointment with my GI doctor a few days after being released from the hospital this last time. He hadn't heard yet that I had been in the hospital, and was very concerned. He agreed that I needed to have surgery, but really didn't want the surgeon to take out any more bowel. He didn't know my surgeon very well, so that was what worried him. I told him that I had an appointment with her the next day, and that if she mentioned anything about removing bowel, I would switch to the surgeon that he likes. I also asked him what he thought of me having a feeding tube put in during the surgery. When I had one last year it helped me gain 10#, and as hard as I have tried, I have not been able to gain more weight, and maintain it, since then. I have regretted getting that feeding tube removed ever since. He thought that was a wonderful idea. He also told me to stop taking the Humira for now, since it suppresses the immune system. I have an appointment in January and we will talk about restarting it then. It's purpose was to heal the fistula, so I don't know that I would need it anymore for that, but I might still need it for my joints.

When I saw the surgeon I still felt like she was a very good choice, and she definitely has the best bedside manor out of the 3 surgeons I have dealt with here in Spokane (including the really good surgeon my GI doctor likes). She said she wasn't planning on removing any bowel, and she didn't anticipate any active Crohn's, so that was good. To my surprise, she brought up nutrition. She said it was hard for some people to heal from this surgery, and she knew that I was not eating very well, especially after this last hospital stay. She wanted to give me TPN (total parental nutrition) for the week and a half before surgery. She wanted to do this instead of tube feeding, and I was fine with that. Tube feeding made me feel sick anyway. So I got a PICC line placed that next Monday, and started doing TPN at home. I started to feel much better, and felt like I had much more energy. By the time I had surgery I had gained 6 pounds, after only 9 days of TPN.

Next I'm going to apologize for how long this post is going to be…I write it all down so I can remember. So, you might not want to start this if you only have 5 minutes….it's a novel, and took me a couple days to write! Anyway, I was pretty anxious and nervous for this surgery, more so than my past ones. I think it was because I had more time to think about it. When I had my first surgery, I knew about a month in advance that I would be having my colon removed, but I had never had surgery and didn't really know what to expect as far as pain, recovery, etc. My two big surgeries last year were emergencies and I had about an hour's notice (if that) that I would be having surgery. So, not much time to dwell on it. But this time we prayed A LOT that things would go well, that I would heal well, and that there would be no complications. Both of our families fasted for me the Sunday before the surgery. I also received a priesthood blessing which helped put me more at peace.

I've kind of explained it in past posts, but for a refresher, I wanted to talk about what they did. The surgeon's plan was to remove a lot of scar tissue that has been giving me bowel obstructions. Since we were doing surgery for that, she also wanted to take care of the fistula, and I wanted to too, so I wouldn't have to have another surgery down the road. Best to kill two birds with one stone. But that meant that I would basically be having 2 surgeries at once, and I would be left with 2 incisions. To fix the fistula, she would have to make an incision at the anus, and remove the rest of intestine that was there, or "rectal stump," and then sew everything up. I have talked to tons of people on Facebook who have had this done, some with good outcomes, some not so much, so that was another reason I was worried. The surgeon stressed that it is sometimes very hard getting that incision to heal well, especially in someone with Crohn's and a suppressed immune system. Hence, the TPN for the extra protein and nutrition.

One of my worst fears was waking up in unbearable pain. I remember after the surgery in Salt Lake last year, it was such a long painful night. I was not looking forward to that. After the second surgery last year (in Twin) they kept me intubated for several hours, so that when I woke up the pain wouldn't be as bad. There is a family in our ward who we love, and the husband is an anesthesiologist, so I asked him if he would be mine for my surgery. I thought it would be better if someone I knew was there during the surgery, so I think that was something that helped me feel better. We also talked about having an epidural, which I have never had before for my other surgeries. He couldn't believe this, and said that he would not have this surgery without an epidural. He told me it would be a huge difference and I would feel so much better. So that helped me to feel better too.

My mom flew to Spokane and we picked her up Wednesday night. The surgery was at 7:30 am on Thursday and they said we would be done about 10 or so. When I woke up in recovery and asked what time it was, it was noon! The doctor went out and talked to Chris and my mom about 11:30, so the surgery took longer than was expected. There was so much scar tissue that my bladder was attached to some of my intestines. When they separated them it made a hole in my bladder, so they had to call the urologist in the repair it. This is exactly what happened during my last surgery! This means that I would have to have a catheter for 2 weeks after surgery. Ugh! Last time I got away with only 10 or 11 days, but this time it will be 2 weeks exactly. I am not going to lie, it has been really hard, and if I didn't still have this in than I would be doing much better, I think. I keep getting bladder spasms, which hurt a lot. The urologist gave me a medication to help, but it doesn't always work great….2 more days! Ahhh!

Because of this they also had to remove the part of intestine that was attached, which wasn't in the plan, either. We really, really wanted to avoid taking any more bowel, but the good news is it was only about 5 inches.

One other thing the doctor said was that she couldn't find one of my ovaries. During my surgery last year in Salt Lake, the surgeon told my mom and Chris that one of my ovaries was attached to something with scar tissue and that they didn't know if they could save it. After the surgery they said that they were able to save it. But then Dr. Hartnett couldn't find it. She said it might have been there still, but she wasn't sure why she couldn't find it. She said that everything was in the wrong place, though, and she had to do some re-arranging. So who knows where it is! At least I know that I have one for sure, and one is all I need!

When I woke up in recovery I felt pretty good. My whole abdomen area was numb, which was amazing. I had a button that was like a PCA pump, but it was hooked up to the epidural and I could push it every 20 minutes. But then I started to have some pretty bad upper chest and shoulder pain. It was making it very painful to take a deep breath. Our friend, the anesthesiologist came to see me and said that I could have some air above my lungs that escaped up there during the surgery. He ordered an x-ray and stayed there while they did it. It didn't show anything but he said it might just be too small to see, and that the pain usually resolved in a few hours. He had the nurse give me some pain medicine for it. It was feeling a lot better by the time I got to my room. I had to stay in recovery for 3 hours because they didn't have a room for me. It took forever! Near the end I started to feel some pain in my abdomen and the nurse gave me a little of what was left from before, but said that they would have some pain medicine for me when I got to my room. Boy was I in for a surprise...

By the time I got there or a little after, I was in agony. I wasn't numb anymore and I cried for like 3 hours. The nurse we had wouldn't really talk to us, she wouldn't look at me or try to help me. It seemed like she would just come in the room and use the computer and leave. She never said that she was sorry I was in so much pain, and she never had a look of sympathy on her face. I really think she thought I was over-reacting and didn't care. Brother (Dr.) Burns, the anesthesiologist had told me that he would order some other pain medicine as well, but the nurse said there wasn't anything else and that she tried to call him. Chris had his phone number and told him to call if he needed anything. So he called him and Dr. Burns couldn't understand why I was all of a sudden having so much pain. He called the pharmacy and then called Chris back. Come to find out when the first epidural bag ran out and they hung a new one, the pharmacy forgot to mix in the local anesthetic. So all I was getting was SALINE and a little fentanyl! (Which was not enough to help at all). He also said that he DID order other pain meds, the nurse was just looking in the wrong place (the hospital did get a new computer system about 6 weeks ago, so I'll give her that).  Once they figured out what was wrong, it took an hour to get the right stuff, and once they got the right stuff hung it took a good hour and a half for it to start working. He ordered lidocaine to be put straight into the epidural and that really helped speed things up. We were grateful to have him as the anesthesiologist. He told both me and my mom and Chris that my surgery was a really big surgery. And he has seen a lot of surgeries, so I think that is saying something, haha. Anyway, by the end of the night I was feeling much better and I even gave Chris and my mom permission to both go home and sleep. That is pretty significant, considering I had made them both swear they would not leave me alone during the first night! Even though I had requested it several times before the surgery, I did not get a private room, and I didn't want Chris to have to sleep in a plastic chair (been there, done that). So since I was feeling better, I decided to be brave and let them go home. I was given a private room the next day and then they took turns staying with me after that.  

The next few days were a little rough, but that can be expected after such a big surgery. It would have been a little better if I had had nurses who would give me my pain medicine on time. The epidural was helping pain from my abdominal incision, but wasn't helping pain from my rectal incision. One of the nurses said, "You look kind of drowsy and I don't want to give it to you when you are too sedated." Seriously!? Then why did the doctor say I could have it every 2 hours if I wanted? Ok, I get that nurses have to use their discretion and give meds when they feel it is safe, they don't want you to have respiratory issues because of too much pain meds, etc, but she made excuses all day, and after like 5 hours I asked again, and she said, "Let me check to see if you can have it yet."  I think she knew good and well that I could have it. Later that day the doctor came and ordered an additional pain med. That evening when the night nurse came on she told me that I could have it every 6 hours. It was about 8pm and she said she would give me the first dose at midnight. I asked why I couldn't have it now, and she said that it was because it was a scheduled medication. I got really frustrated and said, "I haven't had anything yet!" She got really mad and started saying that I couldn't give her attitude and yell at her. I told her I wasn't yelling at her. She just left but came back pretty soon with the medicine. My mom told her that we weren't trying to be short, but we had been having problems with this all day. Once she heard our side of the story she was pretty nice. I think that the day nurse had fed her stories about me, and that made her get mad at me within 5 minutes of meeting me. I understand that it's much easier for a nurse to give all the meds at the same time, and that is why she wanted to wait until midnight, but when a doctor orders something to be given every 6 hrs, (because you are in too much pain and need something else) and your other meds aren't due for 5 more hours, it's a little ridiculous to make the patient wait that long to get it.

We started going on lots of walks. Sometimes I just had to get up to get pressure off of my bottom, so walking around felt good. Some nurses and aids made comments about me being a "marathon walker." It was a bit awkward though, because I had so many things hanging out of me-my PICC line, JP drain, ostomy, catheter, epidural, etc. I definitely needed the help of my mom and Chris, or a walker to get around. After a few days they removed the drain and epidural, and that helped.

One day (sorry I don't remember which day-they are all a blur,) the doctor came and said I was anemic. My hemoglobin was 9, and they checked several hours later and it was 7.2, My heart rate had been too fast, and my blood pressure too low (even for me), so they decided to give me 2 units of blood. The next day it was back up above 10, and that is the last number that I know of. It is supposed to be 12 or 13. Once I received the blood, my blood pressure and heart rate were much more normal, too.

About 2 or 3 days after surgery I was noticing that my sore throat was getting worse, not better. It is always a little sore from the intubation tube, but it got to the point, I didn't even want to swallow water, even with as dry as my mouth was (extremely dry!). I had my mom and Chris look at my throat with a flashlight and they said there were white spots on it. Ugh, I was so upset. The doctor said it could be something viral, but was very unlikely to be strep throat. Then she looked at it again later and said that I definitely had thrush. I probably got it because I was on antibiotics. I looked at my tongue and it looked awful! It hurt to eat anything, and everything tasted like cardboard. I stuck to very smooth things, even after I was on a regular diet. I started taking Nystatin swish and swallow three times a day and it was helping, but it didn't feel 100% better until after I was home. 

On the second or third day one of the aids brought me a pediatric shirt and pants, because the gowns are just so big they are just in the way. They get all bunched up anytime I roll over in bed, and are really uncomfortable. I didn't want to put on my own clothes just yet, because I was having a lot of drainage from the JP drain that kept getting on my sheets and clothes, no matter how much gauze they put there, and I was having a lot of problems with my ostomy bag leaking. This was very frustrating to me. I usually can wear a bag 5-7 days with no leaking. It was just something we had to deal with, but things got back to normal once we got home. Eventually I convinced the nurses to let me wear my own pajamas and that helped me feel much more comfortable. 

My mom left on Monday, and I was still in the hospital until the next Thursday. Eight days total. The last couple of days we were mostly dealing with pain control. On Sunday, the on-call anesthesiologist came and said that they would leave the epidural in since we knew I wasn't going home on Monday.  But then Monday, the surgeon came and said we needed to take it out and change to pills in preparation for going home. All the nurses were telling me that she said in her notes that I should be ready to leave on Tuesday. I definitely didn't feel ready to leave,  when we just barely took out the epidural. So Monday they took it out, and she ordered some oral pain meds. We still had some IV stuff on board though to help with really bad pain when needed. On Tuesday when she came, I was in the middle of sitting up the the edge of the bed, with Chris' help, and she saw how much pain I was in doing that. She said she was hoping I would be ready to go that day, but could see that I wasn't. I was glad that she saw me trying to sit up, because if I had just been lying in bed, she wouldn't have known the pain I was having.

I just didn't have very good nurses. There were probably 2 or 3 the whole time that I really liked. I didn't get any of the nurses I had had during previous stays, but I was on the same floor. One nurse that I love happened to stop by one time when I needed help changing my bag and clothes and it was so refreshing to have someone help me who was actually nice and cared, and showed sympathy. One nurse told me about how she also has Crohn's and has had the same surgery as me, done by the same surgeon. I was able to ask her lots of questions and that helped a lot. It also made me feel better to know that she really liked the surgeon too. 

I felt like all the nurses thought I was just a drug seeker who wasn't in as much pain as I said I was. Or that because I'm little, I couldn't handle very much pain medicine at one time. Hello, I would like to see them have the surgery that I had! The first night when we finally got the whole epidural situation sorted out and the nurse found that I DID have something else ordered for pain, she gave me 1/2 mg, without even asking me what I would like, when the order said I could have up to 1 mg. It did nothing for me and I had to get the other half soon. I didn't tell her that I have gotten 2 mg of that med in the past….I had one nurse 2 or 3 times who worked nights. I think my mom had already left. This nurse did not want to give me what I was allowed. I had some medications that were "scheduled," and some that were "as needed." She gave me a really big speech one time about how I needed to not use this one particular "as needed" IV medication unless I REALLY needed it, because I was going to go home soon, and I was already taking other meds, and blah, blah, blah. It didn't matter to her that I was in tears. I really don't want to sound like I'm addicted to drugs.  After surgery, it is expected that you will be in lots of pain, and need more meds than normal.  Once the pain resolves, I am always able to wean off of them. Anyway, I waited like 3 more hours before asking for it again and she said, "You did really good, so I'll give it to you now." I was so mad. But there was no convincing her to give it to me earlier. 

The next evening, I was in lots of pain, and it was time for my scheduled meds, and I could also have the "as needed" meds if I wanted. I was crying and crying. We pushed the call light and no one came. After 30 minutes we called  again. (Also FYI, my room was right outside the nurse's station and I'm sure someone would have heard me crying, but nobody there cared). Finally 2 nurses came in who had just gotten there and said that my other nurse had left for the day and didn't even tell them it was time for my meds. They started giving me everything I had. They asked me if I had been asking for the one particular IV medication, and I said I was trying to go every 4 or 5 hours without it because I had gotten this big speech about not using it more than I needed. They were baffled by this and gave me the med. They said that obviously I was in too much pain to be going home soon, and that it wasn't up to the nurse to decide to follow the doctor's orders or not. Finally someone who made sense!! I also had a new med ordered that night that helped a ton, and they gave it to me right away, even though it was a "scheduled" med. I had a really good night that night. But then the next night, the other nurse was back and I just went along with her, and took the meds only when she wanted me too. I was so tired of fighting it. Plus, I was finally feeling better and wanting to get off of IV meds so I could go home.

I was bored a lot, and I slept a lot. I tried to work on a scarf I was making a couple times, and my mom told me that I should just give up, because I was too tired. I did my usual of saying some funny things that didn't make sense the first couple nights, which gave my mom and Chris something to laugh about. 

I had many visitors from work and from church, and I really appreciated that. Many of them brought cards and presents, too. Chris' mom sent me some beautiful flowers. My brother Brock and his wife sent me a wonderful Willow Tree that is a brother and sister, which almost made me cry. My Aunt Bev and my cousins Lindsay and Danielle mailed me (way too much) stuff in the mail, which definitely made my day when it came. We were also brought the sacrament from one of our home teachers and another man in the ward. I ate a piece of bread, even though my diet was still full liquids…shhh! It ALWAYS helps me feel better when I feel the love of those around me during these times. We have had a couple meals brought to us since we have been home, and many many people in the ward keep asking Chris about me. My wonderful visiting teaching companion, who is also my very good friend, sent me a text today informing me that she took care of visiting teaching this month, and she did it last month too! I love her so much and am thankful for her friendship and many other friendships I have in the ward.

We continued the TPN the whole time in the hospital, and the surgeon said we could keep doing it for a week or so at home until I was eating better. I had a follow up appointment with her this morning and and she was fine with continuing it through the holidays while I am off work. It is helping me gain weight, and I want to do it for as long as possible, even if it is inconvenient. We are leaving to go home for about 10 days on Friday the 20th, and so it will be kind of a pain, but I learned my lesson last time and want to keep doing it until I am at my goal weight.

I have an appointment Thursday (tomorrow) morning to have a cystogram, to make sure my bladder is healed. Then an appointment that afternoon to see the urologist and remove the catheter if everything looks good. I am praying and crossing my fingers, and dotting all my i's and crossing my t's that it looks good! I am so sick of this thing and will be so happy to have it gone! Definitely NOT looking forward to the test though. I had to have it last year when I had the same issue, and it was one of the most uncomfortable/painful tests I have ever had done (and I have had a lot)! They fill up your bladder with die and take a bunch of x-rays to make sure that it is not leaking where it was repaired. If everything looks good they will remove it and I will be home free!

Well, all that probably sounds really bad, but overall, recovery has been easier than other surgeries. I didn't love a lot of my nurses this time, but I have had far more good nurses than bad overall, and I really appreciate everything they do. Since I made it home, everything has been smooth sailing. I have felt pretty good (much better than I expected) the last few days. I even made it to our ward Christmas party on Saturday night. I brought a pillow to sit on and got to eat some food and watch some skits. Chris was in charge of all the electronics and microphones, etc, and I didn't feel like sitting home by myself all night. I did not go to church the next day though, because I didn't think I could sit THAT long, and didn't want to deal with a catheter AND a dress. Plus, I have been sleeping way late and just resting a lot. Chris is out of school for Christmas Break and taking great care of me.

 I think by this time next week I will be doing really good. A quicker recovery than last surgeries so far. I have been decreasing my pain medicine that last couple of days, and have been taking tylenol and ibuprofen, or nothing at all. I really do not want to be taking any pain meds after this is all over. I haven't ended up back in the hospital like all the others, and haven't had any more complications. (Knock on wood)! 

We are so excited to go home and have 10 whole days to see family and friends. All of our trips home so far have been very very short so this will be good. And I will be ready to go back to work on January 1! I am so thankful for my co-workers and their willingness to cover me for 3 weeks, and of course for my wonderful friends and family who have all been praying for me, and who have helped us. I was thankful that my mom could be there and I love her so much. Also my husband is right up there at #1-he is so sweet and has become the best nurse when it comes to flushing a PICC line and starting TPN. LOVE HIM!

p.s. Chris LOVES to take funny pics of me sleeping in the hospital, and I usually do not post them because I look ridiculous, but I gave in and posted a couple because even I think they are funny. :)

I think my insides hate me!

Well, last week was another fun one. Ok, not really. I couldn't sleep all night last Tuesday, and in the middle of the night my stomach started hurting. It wasn't too bad, and I thought I might have a little obstruction, but when I got up to get ready for work, I was feeling better. When I got to work I ate a smoothie that Chris made me, and some scrambled eggs. But quickly realized that was a big mistake. I was feeling VERY nauseated. I decided to just start with my 3 patients that absolutely had to be seen that day, and go from there. After seeing some of them, I actually got so sick that I threw up at work. I quickly typed my notes and said I needed to go home. I knew by this time that I needed to go the hospital. I think I got home about 12:30. Chris was home and I immediately started crying when I saw him. We quickly got ready and went to the hospital. The emergency room was packed. I was so annoyed. Looking around there were not very many people who actually looked sick. Most people were smiling and talking, getting up to get coffee, etc. And then there was me, crying constantly for 2 hours. I really wanted to just tell them all to go the urgent care down the street. There was one girl who got called to triage not long after we got there. She got up smiling and came out with an IV. The nurse came out a while later and I heard her say she was giving her something for nausea. I was so jealous. It took over 2 hours for them just to triage me. While we were waiting a guy came up to us and asked if he could "pray over me." We said yes, and he said a prayer asking that I would get to be seen soon and would get some relief. It was a little different than we are used to, but very nice. When they finally called my name, a lady who had been there longer than us told me that she was praying for me. Once I got in to see the nurse, he asked me how I would rate my pain on a scale of 1 to 10 (my favorite question, haha). I said 10, and he said that I was the first person who said 10 that day that he actually believed. Once triaged, we only had to wait about 5 more minutes before they took me back. 

They had a hard time starting an IV (as always), but once I finally got something for pain and nausea things were looking better. It at least made it bearable. They did x-rays and said that I did have an obstruction. They put in an NG tube like they always do. The purpose of the NG tube is to suck out air (and other stuff) and manipulate the bowel so it can move and, I guess, get away from the scar tissue that is restricting it. It took 5 tries to get the NG tube in. They nurses just kept pushing even when it wasn't going anywhere. It was painful, and on the 2nd try they gave me a really bad bloody nose. Finally a male nurse tried and he got it in right away. While in the ER, my GI surgeon came in and said that she was on call and was admitting me, and then said that we might need to do surgery this time because this keeps happening. She said she would put me on the schedule for the next day, but we could talk more about it in the morning. She left so quickly we couldn't even ask her any questions. I was admitted to a private room (finally!), and was given a pain pump. Chris loves it when I am on drugs. I was saying some pretty crazy things one night. It is so strange because I know I'm saying things that don't make sense, but I can't stop myself from saying them. I also would have dreams and not be able to differentiate them from real life. I would ask Chris about things that never happened, and sometimes I would dream that Chris was across the room, but then wake up and find him right next to me, which would just confuse me more, haha. The first couple times I tried to go for a walk I was so tired I didn't make it very far at all. Chris kept saying, "eyes open Jill!" Haha! I had a lot of output from the NG tube, and I didn't feel my pain was as well controlled as previous stays. One night I finally got the on call doctor to change my pain pump to a different pain medication that usually works better for me, and it helped some. I was only allowed to have ice chips at first, but my mouth was SOOO dry I convinced my doctor to let me have popsicles too. 

My doctor came Thursday morning and we expressed our concerns of having surgery that day. Chris is really busy with school and has 3 big projects due in the next couple of weeks. If we waited a couple weeks, he would be done with school for the semester and be able to stay home all day with me. Chris talked to my boss who said that it would be easier if they had a week or two to plan to cover for me while I was gone. We could also get my mom more affordable plane tickets if we had more notice. So she agreed that we could wait until the first week of December. She did say that if I didn't get better, we may still have to do it during this hospital stay, and mentioned that Dr. Juviler would be on call. He was the doctor on call the first time I was admitted here in Spokane and I was not impressed with him. The thought of him doing surgery on me was not a pretty one, so I told her I like her better. She just laughed. The next morning I was told that she called in sick, and that Dr. Juviler was on call. Grr. He didn't come see me until 8:30 that NIGHT! It was so frustrating. I felt like a whole day was wasted. When he finally came he said we could pull the NG tube and try clear liquids. Frankly, I wasn't too fond of eating anything yet, and the kitchen was closed by that time, so I just sipped some cranberry juice, which did wonders for my dry mouth! Friday afternoon my friend Garnet from work and her adorable daughter brought me the cutest card (handmade)! and a Duck Dynasty blanket and t-shirt. I will admit, I am a huge fan. I just think that show is hilarious. The blanket was soft and pink and perfect. I texted my really good friend from our ward to see if her husband was at the hospital and could come give me a blessing (he is a medical resident). Turns out they were both there signing up for their insurance, and so they came and saw me and brought me some very pretty flowers. He gave me a very nice blessing (Chris thought letting someone else do it for a change might be a good idea, haha). I felt much better and more calm and comforted afterwards. I am so thankful for the priesthood in my life. I cannot BEGIN to count the number of priesthood blessings I have received the last few years.

I was sooo happy to have the tube out. By Saturday night I was eating "regular" food again. I was sticking to things like mashed potatoes and macaroni, but it was better than broth! I was getting my appetite back and started to crave other things. They also took away my best friend (the pain pump) and started giving me pain pills instead. I was able to roam free without an IV in the picture below this. :) Sunday morning we were told we could go home. I was still having pain but just wanted to be in my own bed. Previously, once the obstruction has resolved, I have felt basically back to normal right away. That has definitely not been the case this time. Monday I basically stayed in bed most of the day. Chris tried to practice his presentation on me before he went to class and I think I only heard about 3 minutes of it because I fell asleep. I didn't want to go back to work, but I feel so guilty whenever I am gone and people have to cover for me. Plus, I am running out of paid time off hours and sick time that I was saving for our trip home at Christmas, and didn't want to use any more, especially now that I will be having surgery. I made it back to work on Tuesday, and today was better than yesterday, so hopefully tomorrow will be better than today. I heard today that my surgery will be December 5 for sure. I just have to make it 2 more weeks. :)

Also, can I just say (again) that I am so thankful for my husband. I don't think anyone could take care of me as well as he does. :)

It's a No Go

Well sorry it has taken me two weeks to write this post. You can probably tell from the title of this post that my appointment 2 weeks ago did not go the way I wanted it to. Actually things were going well at first. I explained to the doctor what I felt like when I was receiving the last Remicade infusion. I told him that I would really really like to try again. He said that he was a little nervous about me trying again, but that he could slow down the infusion and increase the dose of steroids, and try that. He said he wanted to talk to the nurse first though, and see what she thought. He brought her in and she was super surprised I wanted to try again. I told them both that I think that it looked worse than it was and that they over reacted to the situation a little. The doctor told the nurse that we could slow down that infusion and give fluids with it, and she said, "well I've never done that before, but if you really think that's ok..." She sounded very doubtful and kind of condescending. He asked her if she really thought it was a bad reaction and she said yes, than said that she would let us decide and she left. I was so upset. The doctor said that she has been doing this for 10 years, and he trusts her, and that we should switch to Humira, etc, etc. I was crying by this point. He was telling me how he has patients who have been on Humira for a long time, and that it will work just as well, etc. I was thinking in my head that he can't know for sure how long it will work for me, or that it will work just as well, but I finally said ok (because I had no other choice) and then he left. As soon as the door shut I broke down and just bawled. Chris was with me luckily and just let me cry for a minute.

That day I went home and was talking to people in my Facebook group that is solely for people on Remicade. Several people told me that they have had reactions with symptoms similar to mine, or even hives, and their doctors don't seem to think much of it. They just slow down the infusion, and they don't have symptoms anymore. Some also said that they had to switch to Humira too, or that they did Humira before Remicade, and that it didn't work as well for them, or that it stopped working after 1-2 years. This made me even more upset! I was so mad for like 3 or 4 days I couldn't even make myself get on here and write about it. In the meantime, the pharmacy was calling me and setting up a shipment for it. The good news was they said that my insurance would cover it 100% (it's super expensive, like thousands of dollars a shot). With the Remicade, I was on an assistance program called Remistart that paid part of what my insurance wouldn't pay, and we still had a copay left after that.

Anyway, my husband kept reminding me of what my mom had told me about trusting Heavenly Father, and that there was probably a reason that I needed to switch. I started praying that I could accept  this change and I did start to feel more at peace with the decision. I also started to not feel well the day after the appointment. There were a couple nights where I was up all night with the pain that I hadn't really felt in the last 2 months. I was blaming the fact that I didn't get the full dose of Remicade, but it might have also been Heavenly Father's way of telling me that the Remicade wasn't going to keep working, and that I would have have to switch anyway. Besides I did get almost the full dose.

The plan was to wait six weeks from the last Remicade infusion to start the Humira, but since I wasn't feeling well I called and asked the nurse if we could start it sooner. I already had received the Humira on Saturday. She called me Tuesday and said we could start it tomorrow. So last Wednesday I went to the GI office and met with the nurse. She gave me two of the shots, and I gave myself two shots. It wasn't hard to do because I used to give myself Cimzia and lovenox shots. Two weeks from that day I will give myself two more shots, and then it is one shot every other week, with the potential of doing it every week if I need it to work better. For two days prior to getting the first dose, I was having lots of pain where my fistula is. The day after the shots, I only had a little pain, and since then haven't had any. The nurse wanted me to call her Friday and let her know how I was doing. When I told her I was feeling better, she was really happy and said that was "the best phone call ever."

So I have become more at peace with this and have put my trust in Heavenly Father that this will keep working. We are continually praying that it will keep working well.

On another note, Chris and I just had our second anniversary! More about that later....

Wish Me Luck!

Well here are just a few recent happenings...

The day I got sick and ended up in the hospital, I had an appointment with my rheumatologist. I had been waiting for this appointment for a month. Ever since she gave me steroid shots in my fingers last March and April, they were doing really well. But in August when we were on our camping trip I noticed that they were starting to hurt again, and then I noticed that the first two fingers I got the shots in were really swollen. I posted a picture of that in another post. The rest of my hands started hurting a lot so I called the get an appointment. The soonest they could see me was a month away. I thought I was going to die-even clicking my mouse at work hurt. So I asked one of the physiatrists that I work with if there was anything over the counter that I could use to help in the mean time. He's a really nice doctor. He said there was a prescription cream I could get that would help, and said that my primary care doctor would probably call it in for me. So I called, and they actually wanted to call me in something different, but that was ok because it has been a lifesaver. Anyway, I finally had this appointment and I was hoping that she would just give me more shots. She didn't really want to and said that it's not something that they usually do numerous times. She wanted to give the Remicade more time to see if it would help. But then at the same time she told me that Remicade alone usually helps GI stuff, but for arthritis, you usually need another drug called Methotrexate along with the Remicade. The bad thing is you cannot take Methotrexate if you are trying to get pregnant, are pregnant, or are nursing. :( So I left with nothing being done, just hoping that the Remicade would start to work. I have another appointment in 6 weeks from that day.

I had an appointment last Wednesday with the GI surgeon, as a follow up from being in the hospital. We talked about our options and ultimately decided to do nothing right now, which I knew she would say and I am totally ok with. She said that it's good that the two obstructions I've had resolved on their own in just a couple days. She said that the x-ray with the contrast that I had in the hospital did not show any active Crohn's or inflammation that would cause an obstruction, and that's why they think it is scar tissue. She said if there was active Crohn's, she'd be more likely to go in and fix it, but surgery just causes more scar tissue, so we are going to try to avoid that right now. If I get another bowel obstruction, we might have to change our minds. I told her that the Remicade has been working well, and that I'm not having pain from the fistula, so are not going to rush into surgery for that either. I wish I would have asked her what I should do if I get another obstruction-should I go to the hospital as soon as I'm sure that that is what's going on? Or wait until it 's really bad and I'm throwing up. I like to wait because sometimes they will resolve on their own. I think if it happens again I will call her and ask what I should do.

And now the bad news. This has ruined my week and it's all I've been able to think about. Last Monday I was receiving my Remicade infusion and the nurse and my doctor thought that I was having an allergic reaction to it, so they stopped the infusion and the doctor said that we will probably have to switch to Humira. It's a biologic drug like Remicade, but is a shot you give yourself. It can also be effective in helping fistulas heal, but not as good as Remicade. :( :( :( :(
Here is what happened: I was almost done with the infusion (let it be noted that most reactions occur at the beginning of infusions, and this was at the end). Anyway, I started to feel a little sick to my stomach, but it wasn't that bad and I did NOT feel like I needed to throw up or anything. The nurse asked me if I was ok and I told her that my stomach hurt a little. She immediately got me a container in case I needed to throw up. I started coughing and she started asking me if I was ok again. OK- remember how I said I had the flu in the last post, with a sore throat and cough right after I came home from the hospital?? This was my same cough and I told her that. I was getting over it and that was why I had not really coughed before hand. Then she asked me if I felt a "lump" in my chest, or a heaviness. I said no at first and she kept asking me and then I kind of felt like I did. I felt like I needed to take a deep breath, and when I did, it was kind of hard to do. Honestly if she hadn't asked I probably would not have noticed. That is how insignificant it was. But she checked my oxygen stats and they were fine. She asked me if I wanted some oxygen on and I said no, I was fine. Then she checked my heart rate and it was 121.

Ok side note on the heart rate-clear back when I had my colon removed, my heart rate was really fast. Three years ago I was noticing my heart rate was fast a lot, and sometimes I would feel short of breath. Dr. Smith had me get an EKG and a chest x-ray that came back normal. He was concerned I had a blood clot, since I had had them before. My symptoms went away and I stopped thinking about it. The last two times I was in the hospital and every time I have any doctor appointment I am always asked if my heart rate is always that fast. I say yes. Sometimes it is faster than others, sometimes it is only in the 90's (normal is 60-100). I had an appointment with my primary care doctor an HOUR before my Remicade infusion, and my heart rate was 121. My doctor was a bit concerned and said if I ever had symptoms of dizziness or anything, than I should let her know, and threw out there that I could have sinus tachycardia. Oh great. Isn't that something that old people get!? And then my heart rate was also 121 BEFORE we started the Remicade. Ok so no reason to worry that my heart is racing from the Remicade, RIGHT?

Okay back to the infusion: the doctor came in and the nurse put oxygen on me, even though my sats were fine. I will admit it did help me feel more comfortable. But again, my oxygen saturations were normal. I was not in any danger. The doctor and the nurse stared at me. I stared back. I told them I was really fine. When the doctor said we might have to switch to Humira my heart sank. The Remicade was working SO well. The thing with these biologic drugs, is eventually, a lot of the time, they stop working. What if I start Humira and it stops working after a year? Then what? There are only so many drugs to try. I don't want the Remicade to be stopped when I barely started it. I truly believe that the doctor and nurse over reacted, and that my symptoms did not have to do with the Remicade. Even if they did, I don't think it was bad enough to stop it, (and they even cancelled my next appointment!) The nurse gave me a hug goodbye like she was never going to see me again. Are you kidding me? Just like that? Believe me, if I felt like all of a sudden I couldn't breathe, I was going to throw up, my heart was racing (and usually didn't do that), and I started coughing-then I would understand that it would be dangerous to try again. But I have talked to people that get hives at the beginning of an infusion, and still get it again, as long as they can be controlled with Benedryl. I could keep ranting but I will stop now.
I have an appointment with my GI doctor tomorrow to "talk" about it, and since I missed my last appointment because I was in the hospital. Chris is going to come with me and together we are going to explain what really happened and hope he lets me continue the Remicade. If I didn't get to continue it, I would feel like it was being taken away from me unfairly. The one thing has made me feel this good for this long in 7 years. Imagine getting a great job that you are really good at. This is the best job you have ever had. You have been waiting for this opportunity for several years. You finally know that this is where you belong. And then it gets taken from you, just like that, no discussion. You get a offered a different job in its place, but oh by the way, we don't know how long this new job will stay with you either. And you might not like it as well. And you might not be as good at it. That is kind of how I feel.
I will say that I talked to my ever wise mother tonight, (who I miss a lot, btw!) who reminded me that Heavenly Father has a plan for me, and if the doctor decides to switch me to Humira, then there is probably a reason. Maybe I would have had a bad reaction at the next infusion. Maybe it would have stopped working anyway. Whatever the reason, I will try to be ok with it if I do have to switch. I have been praying that everything will work out ok, and I trust that whatever happens will be the best for me, and it is the Lord's plan, and He will always be there for me.

On a completely other note, I just want to say that I was released from Cub Scouts this last week. I am now the piano player for Relief Society. I am very excited about this. I actually didn't mind scouts, but it was hard for me to feel like going to den meetings, after working all day. Even on days I feel good, I don't always have the energy I would like. And lately with being sick and in the hospital, I have missed a lot of meetings and I wasn't feeling too dependable at the moment. The Bishop told me that they felt this new calling would be easier for me, and I agree. :) I think it will be less stressful.

I will update after my appointment tomorrow, which brings me to the title of this post...Wish me luck!

Take Steps Walk

This last Saturday Chris and I walked in the Take Steps Walk for the Crohn's and Colitis Foundation of America. We only signed up for it 10 days before, because we almost forgot about it! But we had been talking about doing it for a couple of months. I raised $100, and together everyone in Spokane raised $14,000, all going towards research for treatments, and hopefully someday, a cure. Thank you so much to everyone who donated! I really appreciate it. Next year I hope that we live closer to home. It would be fun to do the walk in Boise and have more family there with us. We walked 2 miles. I wasn't even tired at the end. I don't think I could have done that one year ago! So thankful for the progress I have made and that I have been doing well.

Sick again!

Ugh! I feel like this is all I keep writing about...but I had another stay in the hospital this last weekend. Let me first go back to the last time I was in the hospital, about 7 weeks ago. The day after I came home, I had my 3rd Remicade infusion and within the next couple of days I started to feel really good. I went to work that week on my normal schedule, Tuesday-Saturday and was totally fine. I have felt great ever since then. Yay! But then Thursday (the 12th) I was at work and around 10 am started to not feel so good. A different pain than usual, but one that seemed familiar...I ate a pudding cup at noon and was still feeling really bad so I didn't eat anything else the rest of the day, which was disappointing because I had brought a lunch with leftovers that I was really excited to eat. Anyway I got home about 4:30 and crawled in bed. Chris came home about 6 or 6:30 and I was still not feeling good. I knew by this time that I had a blockage but I was hoping it was just pass. I have read that massaging your stomach would help it pass so I was trying to do this, even though it was painful. Not long after Chris came home, I started to feel significantly better. I thought that it was finally passing and we could avoid going to the hospital. Chris made me a smoothie, which I ate, but not long after the pain returned. I went to bed still having lots of pain. I had an appointment with my GI doctor the next morning at 8am, and thought if I could just make it until then, then I could avoid the ER. We also didn't want to go to the ER at 9pm because last time we had to wait over 2 hours to get seen and I was in agony. I slept off and on. The pain would come in waves, sometimes I would feel like I could do this, and then I would have a few minutes where I just wanted to go to the hospital. Finally around 2am I threw up a few times. This helped me feel somewhat better and I went back to sleep. But I woke up again a little after 3 in more pain that I had had yet. I told Chris we needed to go to the hospital, so we packed some things and Chris drove me there. Luckily there was no one else in the ER, I was so happy. We had to wait a couple minutes for someone who was in the triage area, and then they took me back. The lady registered me and actually started an IV and gave me some zofran (med for nausea) right then. By the time we were done, a bed opened up and they took me back. But they were really busy back in the ER and it was quite a while before I got any pain meds. The doctor couldn't see me for a while, so I had to go get an x-ray before I even had pain meds. I wasn't happy about it, but I survived. After the x-ray was done, the x-ray tech left the room and said someone would come get me and take me back to my room. I waited there at least 20 minutes ( I know because there was a digital clock on the wall) and I was really upset. Finally I called for him and he came back in and I asked him if someone was going to come get me. He said in a minute and left again. A minute later he came back and said that he would just take me. When we got back to my room, the nurse said the doctor had just been in looking for me, but I wasn't back yet. Great. Well he came back a couple minutes later and said that my x-ray showed I had a bowel obstruction. He was going to give me something for pain (finally!) put an NG tube in, and call the GI surgeon on call. The GI surgeon cam and said that since this was the second time I had had a bowel obstruction in 6 weeks, that I might need to think about having surgery to have scar tissue removed that was causing the blockages. He said we wouldn't make any rash decisions, but it was something to think about. I finally got up to a room about 7 am I think. I had to share a room and I wasn't happy, but they said they could get me a private room the next day. That night I asked if Chris could stay the night with me, and they said no since my roommate was a female, and he was a male, and that I needed to be considerate of that. I started crying, so the nurse asked my roommate if she minded if Chris stayed, and she was really nice and said it was fine. But they never got Chris a cot so the poor guy had to sleep on 2 chairs pushed together. I felt bad after that. I actually asked him in the middle of the night if he wanted to go home, but he said he wanted to be here when the doctor came. I really liked the doctor on call this time. He has actually been recommended to me a couple times, and I think he is the one that my GI doctor likes to refer people to. My surgeon came in on the morning I was admitted (Friday) and said that she wouldn't be around on the weekend, but that I was in good hands. I really like my surgeon too. I asked her what she thought about having surgery to get rid of scar tissue, and she said that surgery just causes more scar tissue, so she wouldn't jump to that right away. That made me feel a little better, but then I didn't know which doctor to believe. Anyway, the next couple of days were ok and I started to feel better. I was able to have ice chips and popsicles which was really nice. I had really good nurses this time and the second morning there they moved me to a private room. Then Chris got a cot to sleep on the rest of the time.
Before they moved me to the private room on Saturday, a dietitian came and talked to me. I never really had the chance to tell her that I am a dietitian too so I felt like the whole conversation was kind of awkward. She was saying that if I couldn't eat soon, then they might have to start "nutrition through an IV." I was like, "you mea TPN?" Haha she was surprised I knew what that was. Anyway, on Saturday they did a test where they put a tube into my stoma and injected contrast (which hurt my stomach and I cried a little). They were continuously taking x-rays to see if the contrast made it all the way back up to the stomach. The doctor said later that they didn't see anything physically blocking anything, like food. This means that I am probably getting these obstructions from scar tissue. On Saturday they clamped the NG tube and waited 4 hours and hooked it up to suction again for 30 minutes, and if there was less than 150 ml of output, then they would clamp it again. So they clamped it again and there was not very much output a second time, so they removed the tube Saturday night. The doctor said I could have clear liquids which I got for dinner. The next day at lunch I got full liquids, and the next day (Monday) I got a regular diet. They also switched me to pills for pain meds instead of a pain pump, and said if I tolerated breakfast and lunch well, then I could go home. So I got to go home on Monday about 2pm. We were so happy to go home! (I will spare you the picture Chris took of me sleeping with an NG tube in my nose and my mouth hanging open-I was pretty out of it some of the time).

I felt pretty good when we got home, but Monday night I started to notice my throat was REALLY sore, and I was getting a stuffy nose and body aches. My throat had been sore ever since they removed the tube, but now it was worse. I woke up yesterday feeling REALLY crummy. I stayed in bed most of the day. In the afternoon I got up and took a shower and got right back in bed, with my hair wet and everything. Chris surprised me by coming home around 4:30 when he got off of work, instead of going to class. I was really glad to have him home. I had body aches all day and felt like I had the flu. Last night I didn't sleep great, so I was up on Pinterest at like 5am, but was able to go back to sleep around 7 and sleep until 10:30 this morning. I have showered and made it out of bed now and am already feeling tons better than yesterday. Luckily things worked out so I could stay home from work until today. We have a student with us right now who has been doing a lot of my work anyway. :) I was pretty put out that I had to miss Tie Dye day and Western Day at work though. This week is Rehab Week, and so they have something different going on every day at work, and give treats and things out to all the employees every day. Friday there is a BBQ and they give out awards. I was nominated for the Rookie of the Year award. :)  I will let everyone know if I get it! (I can't believe it has been a whole year since I have worked there)! I always feel bad when I get sick and can't work, but am blessed to have a great boss and great co-workers who understand. Just when I was feeling great, I had to go and get sick again, but I try really hard to take care of myself. I drink lots of water and chew my food really well. I will have an appointment in the next week or so with surgeon, and talk about the possibility of surgery. If I do have surgery, they will go ahead and remove the rest of my rectum at the same time. At my last appointment with my surgeon, she said if my fistula doesn't show signs of healing by November, then we would do surgery. She said it's not a major surgery, but is sometimes hard to get the incision to heal because of where it's at. But right now I just take it one day at a time and try to not worry too much. We will deal with whatever comes when it comes. :)

I think Remicade is working!

Well just wanted to post an update on how I've been doing since being out of the hospital. I received my 3rd Remicade infusion the day after coming home from the hospital (3 weeks ago today). The infusion was on Monday, and I worked my normal schedule that week of Tuesday through Saturday and was totally fine! I expected it to be a long hard week, but I actually did pretty well. The next Monday I was able to help at Day Camp with my Scouts for 5 hours, and then Chris and I left the next Thursday for a little vacation. We went camping in the Tetons with his family. We went to Yellowstone one day and did lots of other fun things. Chris drove back to Spokane on Sunday, and I went to Burley and stayed with my mom until Wednesday, and then flew home. The whole time I felt really well. I couldn't really believe it. It was so nice to have energy and not have any pain.

Here we are in Yellowstone. We had to go down over 300 stairs to get here...I was pretty proud of myself that I made it back up.

I remember when we went camping with my family in July, I had not been doing well leading up the trip, and while we were camping it was hard to have energy to help with the cooking, cleaning, etc. If I did something (such as ride my bike around, climb a rock, go canoeing, etc) then I was worn out. Especially the last morning when we were packing up to go home, I felt so crummy and helpless watching everyone work. I actually went and laid down in my mom's tent (which hadn't been put away yet) for a few minutes. But this camping trip I felt so good and had lots of energy.
Saturday I started to not feel so good again, but it wasn't too bad. Today I woke up with stomach pain too. But I have read other people say that it takes a few months for it to fully get into your system. The doctor told me to give it 6 months to work. My next infusion isn't until September 23, and I wish it was sooner, haha.

One thing that has been bothering me is my rheumatoid arthritis in my hands. A few months ago I got steroid shots in all my fingers. I had two fingers done at a time. When we were camping I noticed my fingers starting to hurt again. Then when I got to my mom's house I noticed that the first two fingers I got shots in were really swollen. They have just been getting worse. I couldn't get an appointment with the rheumatologist until September 12. I don't know if I can wait that long, so I might call again and see if there is any way she can see me sooner. I wake up in the middle of the night and can hardly move them from the pain and stiffness. I can't open lids or packages by myself, and if I bump my fingers on anything, I feel an instant shooting pain that makes me want to scream. I was really hoping the Remicade would help the arthritis too, but maybe it just needs more time.

Here you can see which two fingers are swollen.

Some of you might remember that I had surgery on my sinuses a little over 2 years ago. It helped me to be able to breathe better, and I have only had one sinus infection since then, when I used to get about 3-4 a year. Well, since we moved to Spokane, I have felt like things have been worse again. Since I have met my out of pocket for my insurance, I decided to go see an ENT. I told him about all the problems I have had all my life. I told him about the allergy tests I had when I was 11 or 12 years old (which showed I was allergic to dust mites, a tree, and a weed. I told him how I ALWAYS have drainage going to down my throat, and have to clear it by making a kind of disgusting noise, otherwise I feel like I am drowning in my own secretions. Sometimes I wake up in the night coughing and cannot breath because of so much stuff in my throat. And I have a chronic cough. (My senior year of High School one of my teachers said to me, "Jill you have had that cough all year." I answered, "I have had this cough my whole life!." I told him that I have all these problems year round. I also told him that I have tried everything. I take Claritan and Sudafed every day. I use a prescription nasal spray every day. I use a humidifier every night. I have tried sinus rinses, etc. I also diffuse essential oils at night that are supposed to help you breathe better. So he put a camera up my nose, which was kind of uncomfortable, and looked around.

He didn't have the records from my previous ENT yet to know exactly what was done during the surgery, so he wanted to see himself. After we had talked about everything and he got done with the scope, he told me that I have about every problem that I could have. Go figure. He said he could tell I have chronic sinusitis, but there was no infection currently present. He said I most likely have allergies, but I just can't tell on top of everything else. He also said that I most likely have esophageal/laryngeal reflux. I get heartburn once every 4-6 weeks or so and most of the time it isn't bad enough to take anything, but every now and then I take Tums if it doesn't go away. He said what I think is drainage coming from my sinuses, is actually stuff coming back up my esophagus. That causes the feeling of drowning, and gross noise and clearing of my throat that I am constantly doing. This makes sense to me because lots of time when I swallow I have an acidic taste in my mouth. The last thing he said was he could tell from looking through  the camera, that I had something "reduced" during my surgery, that probably should have been removed all together. Without going into lots of gross detail, it causes me to cough up hard green remnants of drainage every now and then. It is very rare that this happens, but he says another surgery to fix that might also help me feel better (but this would be way in the future, if we did it at all, after we have worked on everything else).

So the plan is I am going to have a CT scan and allergy tests done in a couple weeks. They are going to test for everything, even food, which I didn't have done when I got tested in 6th grade. Then I am meeting with the doctor right after to talk about the results. I also started taking Prevacid for the reflux. this helps the symptoms, but not the cause-a sphincter is not working properly. There is surgery people get to stop reflux, because chronic reflux can lead to esophageal cancer. But I'm sticking with medication for now. I am to continue the nasal spray and humidifier, sudafed and claritan, and start using the sinus rinse twice a day. Previously I just did it when I had a bad cold, sinus infection, or was really stuffed up. So hopefully these things work and I can start to feel better. I guess I have gotten used to ALWAYS having a sinus headache, but it would be nice if I didn't always have to deal with that too.

Sorry for the long post...like I have said before, I write so much detail for myself, so that I can go back and read posts and remember everything that happens. I will keep updating on the progress with the Remicade. :)

Another Hospital Stay

Well I haven't felt well for the last couple weeks. I have been in this cycle where I will be ok for a few days, and fell crummy for a few days, or a week. I do my best to ignore it, and just go with the flow. I missed sacrament meeting one week, and then all of church the next week. The next week when we were camping I didn't feel great when we got there and and felt better the last couple of days. And then last Monday I felt great and I made homemade raspberry jam, fruit leather, and a raspberry cheesecake all in one day! I LOVE raspberries if you cant tell! It's amazing what you can do with a little energy.

The next few days were bad again. The last couple hours of work on Wednesday my stomach started to hurt more than normal. Luckily I didn't have cub scouts that night so I went home and went to bed. The next day I made it to work and just dealt with it all day but it just kept getting worse. I ate breakfast and didn't have any output from my ileostomy. My stomach felt hard and distended. This happens to me sometimes and then it will get better in a few hours. I laid in bed from about 4 to 8. Finally I was crying and we decided to go the ER. I hate going to the hospital and I knew that the wait would definitely be longer than it was in Twin. We waited for about an hour and a half, during which time I cried. I was nauseated and was dry heaving. Once I got triaged they said that I would be the next person taken back, ahead of everyone else. I cried until I got an IV started with pain and nausea meds that kicked in immediately, for which I was so grateful. We weren't in the ER for very long. They took x-rays and said it didn't really show anything, but I think it was pretty obvious I had some kind of obstruction. Blood work showed I was really dehydrated and my white blood cell count was a little high. They put in an NG tube to suction, and then they admitted me pretty quickly.

It was a rough first night. I had to share a room and I wasn't happy. The other lady had several people that kept coming in to see her (she was just being admitted too), and it was like one in the morning. I asked for a private room right away and the charge nurse said there weren't any available, but when people discharged in the morning, I should be able to get one. In the morning the other patient was taken to surgery snd didnt come back to my room. I wasn't a fan of the nurse that night either. She wouldn't listen to me or Chris and would walk away when I was in mid-sentance. I ended up throwing up (which is really unpleasant with an NG tube down your nose and throat, btw), and about 10 minutes later I asked her what time I could have more zofran (nausea med). She said, "well, are you nauseated?" Uh, hello! I just threw up! She said it would be awhile because I had had it in the ER, but she would check. I never heard from her. A couple hours later I asked the aid to ask her and she came back and said there wasn't an order from the doctor for it, and to get one they would have to call him. I said, "can we call him?!" She said, "well I can see if she will try." I said, "I can't go all night with no zofran!" So finally I was able to get more. The doctor I saw was a GI surgeon. He wasn't really sure what caused the obstruction but said something about scar tissue possibly being a reason. The obstruction started to resolve so he told me when I felt like I was tolerating food that I could go home.

Friday I kept asking about a private room and they kept telling me I would get one, and then finally the nurse said "The problem is everyone wants a private room." She was a really nice nurse, so I know she was doing what she could. But they did eventually block off the other bed in my room so that no one else could be admitted there, which was nice. Chris got a cot to sleep on, instead of the plastic recliner he had the first night. Friday evening they took out the NG tube and I got a full liquid diet. I was nauseated and dry heaved after dinner, and was only to eat a little pudding, and was nauseated after breakfast the next morning. I was also nauseated every time I got out of bed, it was awful. My pain was pretty well controlled, until the middle of the night Friday night (technically Sat morning). When it was time for my next zofran dose the nurse noted that my IV wasn't good anymore. She paged IV Therapy to come put in a new one and they took about half an hour to come. She also took out the old IV so I couldn't even get pain relief during this time. It was getting bad like when I was in the ER. I asked for a warm blanket to put on my tummy in the meantime, and it took forever and calling more than once to get one. I realize nurses are busy, but people kept walking into my room and asking what I needed, and never coming back. Finally when I got a new IV, someone I didn't know came in and said they were going to give me zofran, and then saw my nurse out in the hall so decided to let her do it, and it took even longer. I just wanted to say, "SOMEBODY give me some zofran." An hour after I was supposed to, I finally got the medicine I needed.

Anyway, Saturday night the doctor upgraded my diet to a post-surgical diet (basically kind of bland food), and when I ordered, the kitchen didn't send anything because they didn't know my diet was changed yet. When the nurse called again for me, they didn't have any food left except for the type of food I'd already been eating, like yogurt, juice, jello, ice cream, etc. The whole point of me staying Saturday night was to see if I could handle real food so Chris went to KFC and got me some mashed potatoes and macaroni, which I was able to handle better. That night I slept ALL night! I finally got my sleeping pill, (the dr forgot to order my home meds for me originally),

and didn't wake up one time during the night. The nurse told me when I went to bed that they wouldn't wake me up to take vitals or anything. It was great. I was finally starting to feel better so the doctor switched me to oral pain meds and the next morning came and said I could go home. I was definitely not how I wanted to spend my weekend and we were pretty darn bored, but we got through it, and Chris took good care of me. Today I got another Remicade infusion, and I'm hoping to feel even better. I actually asked if they could give it to me in the hospital, so I wouldn't have to get up early today to go, and get another IV, but the GI surgeon said that he asked the regular GI dr who said I would have to go the doctor's office like normal. Today when I went the nurse told my GI doctor, who said that they probably didn't even call the GI doctor on call, or else he would have come to see me and given me the remicade, which they do for pt's in the hospital all the time. Oh well. My doctor also said that this could take a few months to work for me, because I have a fistula. Something I knew, but hoped it work faster than that. We will just keep trying I guess. The infusion went well and I didn't get any red spots, because of the steroids they gave me beforehand. Chris made me promise that I would not do anything today- no cooking, no cleaning, or anything. So I am sitting here watching Gilmore Girls (which always cheers me up) like a good girl while I type. I plan to go to work tomorrow, so we will see how that goes. I plan on going to bed early tonight. :) I also finished these shoes today, another Pinterest find. They didn't turn out exactly the same size, but you can't really tell when they are on my feet. :)

On Saturday night our Home Teacher came and gave me a nice blessing. It was comforting and helped me feel better. I know when these things happen my Heavenly Father gives me these trials because He knows I can handle it. I really do think there will come a day where I will start to really feel better and won't have to deal with this as much. I know it is something that will always be there, but I also know that I will have periods where I can go on and have a normal life and have children, etc. My patriarchal blessing states that I will be able to bring spirits into this world, so for now I just continue to try to have faith and patience and wait for that time to come. I'm trying to take care of myself and drink fluids and eat. I am feeling ok today, mostly just tired, but it will pass. I am thankful this wasn't anything worse, and that I didn't require surgery or anything. I am thankful for all the wonderful love and prayers that were sent on my behalf, and especially grateful for that great husband of mine who was by my side almost every minute. Well that's all for now, hopefully the next post will be happier and healthier!

Here are some pics from the hospital stay:

 This was in the ER. Don't laugh because I brought my own blanket. I'm like a little kid!

 My room was really hot the whole time, even with the temperature turned down all the way, so I was trying to cool myself off with my water and ice next to my face.

The bruise the first IV made.

  

The second IV.