Ups and Downs

That pretty much sums up the last month or so. I think overall I have recovered from my surgery pretty well, and much better and faster that I expected. But I have still had some things to conquer, and have had some ups and downs since then...

I think I mentioned in a previous post that the plan was to continue the TPN until the end of December. So we took all the supplies with us and did it while we were home, which was fine. The last few days that we were home I started to feel kind of crummy. I just felt like maybe I overdid it and needed to take it easy. I felt pretty tired on the Sunday and Monday after Christmas. Monday I also felt somewhat like I had a UTI. I've only ever had one other on in my life though, so I wasn't sure.

We drove home Tuesday. That was (supposed to be) my last night of TPN. The nurse came for a minute on Tuesday when we got home to bring us the tubing we needed for the last night, and she could tell I just didn't feel good. She asked me if I was ready to be off TPN, and suggested that maybe we wait to take out the PICC line until I talked to the doctor. The plan was to take it out on Wednesday (New Year's Day), but we decided to skip it. I went back to work on Thursday, and was glad it wasn't too busy because I was dragging all day. I called my surgeon that day and got an appointment for the next day, Friday the 3rd. The nurse came that afternoon to change the dressing on the PICC line, and I was sleeping when she came, and didn't even want to get up, so she did it with me lying in bed. I felt so sick. I found someone to work for me the next day. I felt terrible that I was already doing that, after one day back, but just didn't see how I could manage it. At my doctor's appointment I told my surgeon about everything that was going on. I felt like I had the flu, with upper respiratory stuff going on, and bad body aches. I hadn't been able to eat or drink much because I just felt so sick and exhausted. I was also having a lot of abdominal pain similar to what I having before my surgery. I was so scared that there was already more scar tissue. When we were home (in Idaho) I had noticed a couple things that made me wonder if I already had another fistula. A fistula is an abnormal connection between the bowel and something else-another organ, another part of bowel, the skin, etc. During my surgery they found the fistula was where my bladder was connected to my bowl, which caused some air to escape through the urethra. This was happening again. I remember when my bladder was scarred to my bowel in Twin almost 2 years ago, I had had surgery 3 weeks prior where there were no issues with the bladder, and it wasn't connected to anything. So in my mind, it could happen in 3 weeks. The surgeon thought it was pretty unlikely that that was the case, but it's still pretty strange to me, and makes me wonder why I am passing air again.

Anyway, she said I should go to the ER. We were kind of surprised and weren't sure that was necessary, but we went anyway. It was about 11 am when we got there. It was kind of nice sitting there waiting WITHOUT bawling my eyes out. I was uncomfortable, but I wasn't in unbearable pain. When we got triaged, the nurse seemed to think I was the most acute person waiting, and bumped me up so we got taken back pretty soon after that. She also game me some nausea medicine while were still waiting to be taken back. Don't know why that's never happened the other times we've visited the ER, but oh well. To make a long story short, we ended up being there till about 6 pm that night and then were sent home. They found that I did have a UTI. Probably from having the catheter in for 2 weeks. I was really dehydrated so I got a lot of fluids. They also did a CT scan, which took FOREVER, because the doctor ordered oral contrast (recommended by my surgeon) and was very clear to us that that was what he wanted. No one ever brought any and I finally got the nurse to come in so I could ask her about it, and she said the order didn't say oral contrast. So they took me to do the scan, but the people there decided to check with doctor, who said yes, I did need oral contrast, so I had to go back to my room and drink the stuff, which took an hour or so. And then we had to go through the whole process again, and then wait for the results. Basically, we did A LOT of waiting that day. They gave me phenergan for nausea, which just zones me out, so we both just slept while we were waiting.

Anyway, the scan said there was inflammation, indicating "active Crohn's disease." This really surprised me, because there hasn't been inflammation or active Crohn's found in like 3 years. On every scan, scope, and surgery, there hasn't been any. My problems have all been with scar tissue, fistulas, and things not being in the right place. So the doctor called my surgeon who looked and said the inflammation was right along the suture line from the surgery, which indicated "post surgical changes," not active Crohn's. She said it couldn't be Crohn's because there wasn't any during the surgery. Basically, she was saying that things were still healing inside and that that was where the pain was coming from. That was kind of a relief that they didn't think it was scar tissue. So I went home and rested the rest of the weekend, and was feeling better by the time I went back to work the next Tuesday. I got ahold of the doctor that day and she said lets start the TPN again. I had lost about 4 pounds so she said lets try 2 more weeks. I did better during that time. About when I finished the antibiotic for the UTI, the ER called me and said that they got the culture back and it grew out 2 different bacterias. The one I had been on only covered one bacteria, so I had to take another antibiotic after that. About when I finished that, I had to get another antibiotic for a sinus infection. I think my upper respiratory stuff from the week before didn't fully go away, and I woke up one day with a bad sinus headache. Sorry that still was kind of a long story!

But as far as my stomach was concerned, I was doing good during that time. I had an appointment with my GI on the 13th. He had wanted to see me about a month after my surgery, and was pleasantly surprised at how well I was doing. When I had seen my rheumatologist in December, she told me to ask him if we could switch to Cimzia instead of Humira. I didn't really need it anymore for the fistula, since the surgery "supposedly" took care of that. The RA doctor wanted to try it because I took it a couple of years ago before I ended up getting really sick, and noticed that it helped my joints. He was ok with that. He seemed to think it was possible that I DO have a fistula, but said Cimzia should probably help it. Since the main issue at the moment was my joints, he thought it would be fine to switch. I just hope it really does work.

One week later, the 20th, I had an appointment with my rheumatologist, who gave me a couple more steroid shots in the fingers that were bothering me the most. We also decided for sure to start the Cimzia. I also got a pneumonia vaccine since everyone has been telling me I should get it since I take immonosuppressants. She really recommended it, so they gave it to me in their office. She also talked to me about an anti-inflammatory diet. She said that most of her patients who avoid gluten and sugar see a difference in how they feel. Some will feel their hands swell up and get stiff as soon as they eat these things. I have thought about changing my diet before, but have never made the jump to do it. We are going to try it and see if it makes a difference. Could help my stomach too. That appointment was at 8:30 in the morning, and I went right home and went back to bed until my appointment with surgeon that afternoon. I felt really crummy. At the appointment she said pretty much that I needed to see my GI doctor for follow up for other things. As far as the surgery went, it was all healed and everything. She wanted me to come off the TPN because my liver labs were elevated and I was perfectly fine with that. Even though I felt pretty awful that day I saw her, I really wanted to be off of TPN. We decided to keep the PICC line in for a week or two, to make sure that I was doing ok.

That whole week I just didn't feel well again. I felt sick every time I ate. I had pain every night and every morning. The next Sunday I only went to the last hour of church, so I could play the piano for Relief Society. The next day I literally could barely get out of bed. I had also lost 5# in the last week. My GI doctor had made me promise to let him know if I was not doing good, so I called his nurse and told her what was going on. Dr. Goodell wanted me back on TPN (ugh!) and ordered some fluids, which the infusion company just came to my house and did that day.

That night (Tuesday, the 28th), poor Chris was so sick, and was throwing up all night and the next morning. I woke up feeling better, but still pretty worn out. I was scared of getting what Chris had, but felt so bad for him. I called in sick and luckily someone could work for me. (I know, I sound like the worst employee ever!) Chris was throwing up till about 11 that morning. We both slept on and off until then. I would get up when he would, but I felt pretty helpless. He kept saying that now he knew what I felt like all the time, and I told him now I knew what he felt like! He is always saying that he wishes there was more he could do for me. We both laid around all day and Chris slept a lot. I was able to go to work the rest of the week and Chris felt quite a bit better the next day, and was back to normal by Thursday.

I had an appointment with my GI again that Friday, (the 31st) since I hadn't been doing well. He said he really wanted to get me feeling better and gaining some weight again. He said we could try TPN again for 2-4 more weeks. He wants me to try the Cimzia and see if it helps me. He is afraid that I do have another fistula. He says I might have to see the urologist in the future to figure that out. Also wants me to do a small bowel follow through study to see how much small intestine I actually have left. I had 20 cm removed during the most recent surgery, which he wasn't very happy about. It would be interesting to know how much is really there. I have had a lot of problems with more liquid output since the surgery, I think things are just going through me really fast.

He also said he wanted to check my iron because my H&H has been low since my surgery and not getting any better, in fact getting a tiny bit worse. He said it would not improve if my iron levels were low. Turns out they were, so this week I have to get 5 iron infusions, and then they will check the levels again. They have to be given 5 days in a row I guess. The first one will be at the hospital because there is a high risk that you could have an allergic reaction, and the rest I can do at home with the infusion company, but a nurse will have to stay with me the whole time. I am hoping this gives me some more energy! I have enough TPN for a few days, but once I use it, I want to try going off of it again, or at least decreasing it. I have felt really good while on it, with only feeling bad a couple of times in the last week. I guess it's a good thing I still have this PICC line!

Whew! A lot has happened in the last month. That was really long but I am not really that good at condensing my posts. :)  Hopefully I continue to feel good!

Here are a few pics of us recently. The first one is at a WSU game we went to one night. The rest are of the trees here in Spokane when they get all frosted and white. So pretty. The pictures don't do it justice.