Tuesday, December 17, 2013

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. The surgeon thinks that this is where part of the fistula was coming from, which totally makes sense with the symptoms I was having. 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. My friend Garnet from work brought me some cute pajamas and fuzzy socks, and some monster cookies! 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. :)