TPN (Again)!

I just wanted to write and talk about what's been going on the last couple of weeks. I have posted on Facebook and Instagram but I want to write it in more detail for my records. 

So I got my PICC line out on December 31, 2015. I did ok for about a month. Then I started to see my weight steadily drop. I wasn't really sure what to do. I was eating well (even though I didn't feel the greatest) but I just could not maintain my weight. Probably because every time I eat my bag is full 10 minutes later-sometimes before I've even finished my meal. I can't absorb anything. I also started to feel the classic signs of a flare up. The crampy abdominal pain, nausea, etc. I finally called my GI doctor a couple weeks ago when the scale said 84 pounds. In September when I went on Tube Feeding for a couple weeks, that is what I weighed. But it didn't work and I got down to 79 by the time we started the TPN. I didn't want it to get that low again. I explained to the nurse how I was feeling and what my weight was at. I wanted to see the doctor but she only sees patients on Mondays and Friday and those days aren't good for Chris, and I really wanted him to go. One of the main things I wanted to ask her is if she would do a scope (ileoscopy or flexible sigmoidoscopy), so I just asked the nurse to ask her if she would consider that. She has had me get 2 MRI's recently that showed the same thing (fluid which they didn't know where it was coming from) and I didn't want her to just tell me to do that again. I wanted her to actually go in and see if there was inflammation or anything else. She said yes so we scheduled it for Thursday March 17th. 

She also said that Dr. Gorman wanted me to start TPN again. I was kind of surprised and honestly that's why I put off calling. She didn't like me being on it the first time and wanted it out as soon as I got to my weight goal (which in my opinion was too soon since I always lose weight after going off of it). And I just didn't think she would do anything if I called and said I lost 6 pounds. I asked about the possibility of a port this time instead of a PICC line, for several reasons. We are going on a cruise this summer and you can't get wet at all with a PICC line, but with a port, you can de-access it and go swimming, etc. It is easier to maintain, less risk of infection, and it can stay in for years. So the next time I need TPN (and I'm kind of starting to see that there will probably always be a next time) we can start it right away and don't have to wait to get something put in, especially in this small town where it's kind of hard. I also was thinking of our adoption. We just submitted adoption papers and I don't want to to meet potential birth parents with a PICC line in my arm. They will think I'm dying or something and won't choose us. With a port, we can de-access it and they can see that I am healthy enough to raise a child. I really wanted to schedule the port at the same time as the scope. I didn't see why they couldn't coordinate-have the GI doctor do her thing, and then have the surgeon come in and do their thing. But they said they were different departments and just couldn't do that. So I scheduled the port to be done on Monday the 21st. Which meant we would have to go back to SL again. (They don't do them in Roosevelt). 

The day of the scope I felt pretty crummy. Probably partly because it wasn't till 3:30 in the afternoon and I had to go all day without eating or drinking. And partly because some days I just don't feel good. We went to SLC early that morning because Chris had an Audiology appointment at 8:40 am. Then we ran some other errands. We went and got our passports, went to Costco, Michaels, etc. The day dragged on forever and I thought 3:30 was never going to come. 

Here we are in Costco. My mom texted me and told me a Rue 21 is coming to Burley (my favorite store). So I texted her this pic since I was wearing a new shirt I had recently got from there. Then Chris was jealous and wanted to send her a pic of him too, haha!

Finally made it to hospital and changed into the lovely gown.

Chris was acting silly as we were waiting.

Since I felt so bad and was so nauseated, the doctor let me have some pain and nausea meds while we waited.

It took 3 or 4 tries to get the IV started-I can't remember for sure.

I went to sleep and woke up to the doctor saying, "You awake Jill?" I groggily said yes and she told me pretty bluntly that she found a fistula and that she was admitting me. My first thought was, "Great." Then I just thought, "Whatever." Ha! The funny thing is that Chris packed an overnight bag just in case I got admitted for some reason. I had a huge fear that she wouldn't find anything on the scope and tell me that my problems were because of that fluid and leave me to just live in pain some more. In fact I had convinced myself that that is what was going to happen and we wouldn't get any answers. I don't know why because she is really nice and really does care. So I told Chris he was crazy for packing extra clothes. But he was right. Apparently when she was only about 4 or 5 inches in, she saw what looked like a hole in my intestine. She didn't want to keep going because she was afraid there was an infection or abscess that needed immediate attention. I think she also didn't want to make things worse. They took me to recovery for like 2 minutes. Chris came back and he had already been told what was going on. I told him, "They said I have to stay." He told me it would all be ok. 

So without really having time to fully wake up, they took me to get a CT scan. This was not a pleasant experience. First of all, I had to go to the bathroom when we got to the room with the CT scan. But it wasn't bad and I figured I would be fine. Second of all, it was FREEZING in the room. I told the lady doing the scan that I was so cold. My teeth were even chattering. She got me 2 warm blankets, which turned out to not be that warm. I told her I was still freezing. She had unfolded the blankets all the way so they were really thin too, and I felt like I didn't have any blankets on me. I kept saying I was cold and she just kept saying, "We'll hurry and get this scan done." I was so irritated that she couldn't just go and get me more blankets. Then she tells me that she needs to inject contrast into my stoma. I thought, "Well that's probably better than having to drink it and wait for it to go through." My bag I wear is a two piece, which means you can just snap the bag off, and keep the wafer on without having to change the whole thing. That is what the doctor did for the scope, so I explained that to her. She then took a tube with a huge syringe connected to it and tried to thread it into my stoma. Luckily a stoma has no feeling so it didn't really bother me. But she couldn't get it in so she had to call the radiologist to come do it. Which meant I had to lay there with my bag off, in the freezing cold, while having to use the bathroom really bad. It was miserable and I was almost in tears I was SO cold. My body was so tense I could not relax it. The radiologist finally showed up and injected the contrast. He said we needed to do the scan right away, before it all just came back out my stoma. So the tech was trying to put towels everywhere to keep it from coming out. Well it was coming out. I could feel it dripping down my side. I told her we could just snap the bag back on real quick so it didn't make a mess and again she said, "We are just going to hurry and do the scan." I was so irritated AGAIN. If I could have reached the bag I would have put it back on but I couldn't reach it. So I laid there without my bag while contrast kept coming out and getting all over me, my wafer, etc. Sorry if this is TMI but it was an experience I need to write about. Somehow writing it all out also somehow makes me feel better. Anyway, they also needed to give IV contrast. If you have ever had a CT scan with IV contrast, you know that it makes you feel all warm like you need to go to the bathroom-and even makes you feel like you peed your pants. Well try having that feeling when you already feel like that. It was so miserable. Luckily the scan itself was pretty quick though-once they finally did it.After it was done, the tech said, "OK we need to get this bag back on." But then she proceeded to rush around the room cleaning up and putting things away, putting things in the garbage, etc. She kept disappearing into another room where I couldn't see her-and still left me lying on that cold hard table without my bag on! I tried to get her attention to no avail. Finally I sat myself up, and reached for my bag. She came back in the room and I told her that I had to use the restroom really bad, that I needed my bag, and that I couldn't wait any longer. So she finally helped me up and I used the restroom and got taken back to recovery where Chris was waiting. And where they happily got me more warm blankets. 

This picture is after I got up my room and was a little more awake. Luckily I grabbed my glasses too!

The hospitalist came in and talked to us. He was actually the same one that saw me when I was there in September, and he remembered me.  He said he couldn't read the CT since my anatomy is so different than most peoples. #nocolon So we would just have to wait. He ordered my medications. I can't remember for sure but I think the surgeon came in. He said the Radiologist who read the scan called Dr. Gorman, who called him. He said the hole in my intestine was a fistula-didn't seem like it was that big. He said it looked like it had been there for awhile (though I'm not really sure how they tell). There was a pocket of fluid behind the fistula but it wasn't infected or anything. Usually fistulas lead somewhere-eaither out into the abdominal cavity or to another part of bowel or to another organ. But it sounded like this really didn't lead anywhere else. He said he didn't think it was anything surgical, and that Dr. Gorman would be talking to me about medication to help it heal. They let me eat dinner, but said they would make me NPO (nothing by mouth) after midnight in case they could get me in to do the port the next day. I was glad so we wound't have to come back on Monday. I shouldn't have bothered eating though because I just felt worse afterwards. The nurse gave me pain pills but I started crying because my stomach hurt so bad, so then she game me IV meds. I was finally able to relax and sleep. See picture below, haha.

I hardly slept at all that night. Don't know why. It's just hard to sleep in the hospital, and every time you do fall asleep, someone comes in and wakes you up. One person came and drew my blood at like 3 in the morning, and an hour later someone else came to draw my blood. After they had already drawn it like 3 times after I was admitted. What the heck?? I also was having MAJOR sinus and allergy issues. I asked the nurse to ask the doctor to order some claritan, sudafed, and mucinex. But I didn't get it till late the next morning. I literally couldn't breathe out of one side of my nose the whole night and most of the next day. The next morning I also asked for a nasal spray and that helped and by the next evening it was much better. I used so many tissues though. Chris actually had to go buy me some nice ones because the ones at the hospital are like sandpaper. Note to self-bring my own tissues next time. You would think I would know that after 21 times in the hospital. Oh wait-I didn't know I was going to be admitted. 

The next morning the surgeon and hospitalist came again. Same story. They told me my potassium was low and they were going to give me a bag of it. I've had IV potassium so many times and it stings so bad going in the IV. For the whole infusion. But I endured it and luckily it didn't take more than like 3 or 4 hours I think. I was super dehydrated so they were pumping in the fluids too. They told me Dr. Gorman would come that evening after she was done with Clinic. The hospitalist didn't come until about 10:30 or 11. He said he had told the department putting in the port to call him if they couldn't fit me in, but I spoke up and told him I would like to know if they were doing it or not, because I didn't want to go all day without eating, just to find out that they couldn't do it. So he called them again and came back and said they would come get me at noon. It actually turned out to be like 1:30. I was pretty nervous, not sure why. I don't get nervous for scopes because I've done them so many times I know exactly what to expect. I know that the sedation makes me nauseated and I know to tell them that beforehand so they know. But with this, I didn't know exactly how it would go. It turned out to not be a fun experience at all. I expected to go to sleep, wake up in recovery with a port in, get some pain medicine, and be fine. That is not what happened.

First of all, let me just preface this by saying that this might make me sound like a brat or like a wimp, but when you are in the hospital, little things that wouldn't bother a normal person, bother you. You are already scared and frustrated and not feeling well and hopped up on drugs. Then when things don't go as planned, as you were told, or as you expected, it's hard to keep calm. I've been know to burst into tears when I was told I could have real food and was brought a clear liquid tray instead. Your emotions are high and the drugs just escalate that. It just happens. Tears in the hospital are inevitable. So anyway, they took me down and I had to wait in the hall for about 10 minutes. The guy who was going to give me the sedation told me about it. He told me how the procedure would go, starting with them numbing my skin. He kept saying I might feel this, or that, and I was confused because I thought I would be sedated. I said, "Won't I be asleep?" and he said yes, but just in case you are aware of anything, then you will know what to expect. "We will make you comfortable though."  Back in September when I had the fluid they were worried about drained from my abdomen, I remember waking up and vaguely being aware of what they were doing. I actually watched them stick a huge needle in me and pull back tons of fluid. But I was so groggy that it didn't matter. Then I went back to sleep. So that's what I thought he meant. So these guys finally took me in and put me on this really skinny table. I laid down and they started getting me ready. They propped my knees up so I'd be more comfortable. Gave me a couple blankets. I don't even know what my head was on but it was very uncomfortable. It felt like a really thin, lopsided piece of hard memory foam or something. They used an ultrasound on my neck to find the correct vein they would insert the tube in. Then they used chloraprep or whatever to sterilize my whole chest and put drapes around the area so only the area they would be working with was showing. This also meant that the drapes were covering my face. I'm not usually claustrophobic but after laying there like that for a long time I started to feel it. I tried to turn my head to the side so it wasn't right in my face but that hurt my neck and I was already expecting to wake up with a stiff neck. (I had read a lot about ports and how people felt afterwards and was prepared to be really stiff and sore and in pain for a few days). They put oxygen on me but kind of yanked it on and pulled my hair at the same time so it all felt tangled with the oxygen tubing and was really uncomfortable. Because of the drapes, I couldn't really reach up and fix it. Time kept ticking by and the PA doing the port was taking SO LONG to come. I just had to lay there, and not to mention that I had to use the bathroom again (those dang IV fluids)! I just kept getting more and more anxious. Usually they wait till AFTER you are asleep to prep and drape you! 

So the PA finally came and peeked her head under the drape and introduced herself. She said that afterwards she would show me a port like the one she was going to put in. She also told me that if I needed anything during the procedure to let her know. I took that as-if I wake up-tell them so they can put me back to sleep. I went to sleep, but then sometime later I woke up. At first I was confused and didn't realize where I was since my face was covered in drapes. Once I figured that out, I couldn't figure out why I was awake. I started to move my arms and legs around, and moan and try to move the drapes off my face. I felt so claustrophobic. And then I felt REALLY awake. They tried to hold me down and kept saying, "What do you need Jill?" Well hello, I think it's obvious that I need something to calm me down. I said, "I need to go back to sleep!" They told me no, which I didn't understand. I thought, well maybe they are almost done, but then they kept going. It didn't hurt since they had numbed everything, but I could feel lots of pulling and tugging, which I didn't like. I think I dozed off again and woke up again and the same thing happened over again. I think that happened about 3 times. Each time I was told I couldn't have anything else. They just tried to hold me down. Since I wasn't fully in my right mind, I couldn't talk myself into calming down and just holding still. The anxiety kept rising and I just wanted out of there. Finally it was over and they took the drapes off. They put me back on my bed and then I was SO COLD. Everyone was walking around cleaning up and I felt ignored. I asked for a blanket and no one answered. I asked again and no one answered. I finally started to cry. I was saying, "PLEASE can someone get me a blanket" over and over again while I was crying. Eventually (after maybe a minute or two, but it seemed much longer) someone came with 2 blankets and asked (not very nicely) where I wanted them. They said "Around your neck?" Uh-what? I wanted them on my front but couldn't really get the words out so they kind of sat me up and put one around my back and then one in front around my upper arms/neck/head. That did help. But I remember just glaring at everyone. I was SO mad that they didn't sedate me more. Looking back now it sounds stupid, but at the time I was just mad. I wasn't in the right state to talk to myself and calm myself down. I was just bawling at this point. The PA finally came over and asked me very sternly if I was ok. I just kept crying. I thought it was pretty obvious that I was NOT ok. She asked again, and I felt like she was almost yelling at me, so I yelled back, "YES!" When what I really meant to say was "No!" At that point, she literally threw her arms in the air, rolled her eyes, and walked away and I never saw her again. I could hear them all talking and saying things like, "What should we do with her?" "She's been awake for a half an hour so she only needs to go to recovery for a half hour." What? Awake for half an hour? The whole thing was only supposed to last 45 minutes. Why did they even bother sedating me at all? Anyway-they wheeled me into recovery and the people there starting saying things like, "What is this? We weren't expecting this one. We don't have room for it. Where can we put it? I guess it can go here." HELLO people-I am a person. Not an IT. And I was fully awake and could hear every word. In fact I was still sobbing. Loudly. The guy who was in charge of sedating me was in the room and he wouldn't even look at me. You could just tell he just thought I was being so ridiculous. And I was. But it was literally out of my control. I was so upset. All they would have had to do was talk to me. Tell me they were sorry. Ask me what they could do  to make me more comfortable. But no, everyone was acting like I was the biggest inconvenience. I think sometimes people just forget that they are caring for patients. Who are people. Who are scared. Who are in pain. They let their own irritations get in the way of caring for the patient. So what if I was crying. I was in the hospital. I just had surgery. That I was awake for. Anyway, the nurse who was in charge of me asked me what was wrong and I loudly told her that I was mad they didn't sedate me more. She tried to calm me down-and frankly she was the only nice one. She tried taking my mind off of it, asking me about any vacations we had planned for this summer, etc. I asked for my husband and of course was told I could see him after I left recovery. I asked for pain medicine and was told that my nurse would have to give it me when I got back to my room. The nurse there put ice on my incisions and the pressure and weight really hurt so I told them to take it off. It wasn't extremely painful since they had numbed it, but I thought it was odd they didn't want to give me anything.  I cried and cried and cried. I told the nurse that I had never woken up before during a procedure and I didn't like it. She asked me what procedures I had had. I told her I had had a scope just the day before and I didn't wake up at all. She said, "Yeah they use a lot more sedation for those than we do. We don't need you to be that asleep, and we don't want to give you too much." Well why the heck didn't someone tell me that before? She told me several times that she was sorry it didn't go as I expected, but assured me it was over and I was fine. Finally I stopped crying. I think I was only in recovery for about 10 or 15 minutes. I think they wanted to get me out of there fast and just get me to my nurse and husband. 

When I got back to my room where the nurse and Chris were waiting, I cried some more telling them about it. I just felt totally cheated. If I had been told beforehand, that I would just getting meds to make me relax, that I would be awake for a lot of it, etc, than I think it would have been way different. I expected to go to sleep and wake up in recovery an hour later. Not wake up with drapes over my face, being held down, feeling tugging and pulling, and being told that NO, they couldn't sedate me more. I don't really get it, but I'm trying to just forget about it. I realize how ridiculous I was acting, but like I said, I could not control it. The meds can make your emotions much higher too. The procedure is actually really simple and not a big deal, so it sounds crazy when I think about how I acted. I just didn't want to be awake when I thought I would be asleep. It's kind of like when you have a dream about something that happened during your day-but the dream is totally twisted and exaggerated. You think-I must have dreamed that since this and this was on my mind, or because this and this happened. So I had all these expectations-about what I had read, what I had been told-and when it didn't happen that way it was like a bad dream where everything went wrong. You wake up and can't make sense of any of that and don't understand why any of that happened in your dream, because in real life that wouldn't happen. I 

don't know if that makes sense, but that's the best way I can explain it.

My nurse on the floor was very sweet and told Chris that they actually had a lot of complaints about that department. She said that she wanted to put in a complaint to them because it happens too often. That made me feel a little better, like my feelings were validated and I had at least somewhat of a right to be upset. But I also felt really silly. I'm still upset at the PA though. She should have totally stayed to talk to me until I felt better. She should have made sure I was ok. She should not have thrown her hands in the air and stormed off-from a patient who was obviously very traumatized. Good news is I had wonderful nurses this time!

The picture above was taken later that night. Just 2 little incisions.  The picture below shows what the port looks like. They put the port below the bottom incision-just under the skin, and then used a metal rod like thing to thread the tubing up through the top incision. I watched videos. They just force the rod from the bottom incision to the top until it poked out of the top incision. They have to separate the skin and muscle and everything so the tube can go there. They remove the rod but leave the tube there. You can feel it under my skin. Then they stick the end of the tube back in the top incision and thread it into the vein. When the port is accessed, they stick the needle right in the middle of the port-where the rubbery type middle section is. It can be poked like 2000 times. Then the meds go into the tube and then on into the vein. 

That evening they stopped the IV fluids so I just had the IV in my arm and didn't need to drag the pole around. Which meant I could put on my own clothes. Luckily I did bring a comfortable t-shirt and sweats to wear on the way home from the scope. We went on a little walk around the floor. After the numbing started to wear off, I decided I did like the ice to help numb it back up again, haha!I also had a little fever that night. They gave me a bag of antibiotics right before I went to get the port to prevent infection-so they didn't really think it was from that. But Dr. Gorman asked me if I had been sick with a cough or something and I said I felt like I had a sinus infection. I have been known to have fevers with my sinus infections so that makes sense.

Friday evening Dr. Gorman came and talked to us. She said the the CT scan also showed inflammation. Which hasn't actually been shown on any scans or surgeries I have had in quite awhile (like years). My problems have always been other things (fistulas, scar tissue, bowel obstructions, etc.).  But that explained why everything goes right through me, the crampy pain, and the weight loss. When there is inflammation, the intestine just can't absorb like it should. Anyway, so obviously the Cimzia I have been taking for 2 years is not working. We loved it because the co-pay card for it helped us meet our out of pocket at the beginning of the year-without us having to pay it, haha! But it's better to have something that works. Dr. Gorman said she actually talked to the doctors at the U of U who I used to see when we lived in Twin and they recommended Remicade (since that is known to heal fistulas), but since I had had an allergic reaction, they recommended trying Entyvio. Well I don't know how many of you remember the whole Remicade fiasco. The nurse saying I had an allergic reaction when I didn't really think I did and the doctor making me stop it. You can read about that here and here. I explained to Dr. Gorman what happened when they made me stop and she agreed that it didn't sound like an allergic reaction and that it might be worth trying Remicade again (hallelujah)! But I think she wants to try Entyvio first. She is having her nurse see if the insurance approves it, and if they do, then that is what we will try. It is an infusion like Remicade. If for some reason the insurance doesn't approve it, or we try it and it doesn't work, then we can check my blood to see if I have developed antibodies to Remicade. Because of the type of medication that Remicade is, if you start it and then stop it, you could either have an allergic reaction or it might not work the second time. But they can check your blood to see if you have the antibodies that would prevent it from working. Dr. Gorman also said since I had the port put in that day, and it was getting late, I could stay another night and go home the next day if everything was ok.

Also later that evening my brother Chad who doesn't live too far from Salt Lake came and visited. He brought his wife and 3 boys and some really pretty flowers. It was nice to talk to Chad and Fran. And those boys can always cheer me up. They are so adorable. They gave me a Superman card. :) And some really pretty flowers. 

 The flowers on the left came from some of the girls on my Usborne team. I had let them know I was in the hospital and wouldn't be able to help them for a few days and they were so sweet and sent flowers. The flowers on the right are the ones that Chad and Fran brought. 

That night I slept so good. I only woke up when the nurse would come in and then go right back to sleep. It helped that I could actually breathe, too. I wasn't in too much pain, but in the early morning my stomach did start to hurt more again. The ice helped my port site a lot though. Saturday morning the hospitalist came and said I could go home if I felt like it, and I felt like it! So we left the hospital around 11:30 and got home about 2. I slept most of the way home. Then took a long hot shower when we got home. It felt so good-since I didn't ever shower while I was there. Then I just relaxed. Chris has been taking great care of me. 

Sunday and Monday were ok. Sunday we didn't have regular church because it was the Provo City Temple Dedication. We had a choice to go at 9, noon, or 3 pm. We were going to try for 9 but I woke up and told Chris he was going to have to go without me. I went back to sleep at like 8:30 and slept clear till 11:30. I was surprised when I woke up though and Chris was still home. He said he didn't want to go without me and leave me home. Monday night I started to not feel good. I think I was just exhausted, and until I can get that medicine, I am still going to have bad days where my stomach and joints really hurt. I was in so much pain that Chris literally had to get me dressed for bed. I took some medicine and started to feel better but could not really sleep. Tuesday was so bad. I felt the worst that I had felt in a long time. I had an appointment with my primary care doctor Tuesday afternoon (just for follow up since I had been in the hospital). He is so nice. He actually saw that I had been admitted in SL and called Chris on Saturday wanting to know if I was ok. Chris missed the call, but emailed him on Sunday and he emailed back. So I was almost in tears when I saw him Tuesday-I had just felt sick all day. I told him all I had had to eat was a small bowl of cheerios at like 2:00 pm, and not much to drink because even that made me feel sick. He wrote an order for me to get IV fluids. So I called right when I left and scheduled it for the next morning. I went to the hospital IV clinic to get them. My port hadn't been accessed yet. The nurse was all ready to give me an IV but I asked her if she could use my port because IV's are so hard to start on me. She had never done it but went and got someone who had. So they accessed my port and I got the fluids in about an hour. I told her that Home Health was coming later to start TPN (it had taken a few days to get lab work done, TPN mixed, and sent-but we were finally able to start it Wednesday (yesterday)). But even though I told her that, she still took the needle out when I was done and told me to keep the gauze taped on the there the whole day. So later when the nurse came, she had to access it again. The needle the pharmacy sent was too long and hit the back of the port, so the nurse had to run back to Home Health and get a different one and poke me again. But we finally got it and now it can stay in for a week at a time. I am doing the TPN for 24/7 right now and started at just getting half of my needs. They checked my blood again today and everything looks good so starting tomorrow night I will get 75% of my needs and do that over the weekend. If everything is fine, Monday we will go up to 100%, and after we do that for awhile we can start decreasing the hours so it's not 24/7. Eventually want to get to where it's only 10 hours/day. 

This picture was Tuesday night I think. You can see all the yellowing is the bruising. The 2 tiny bumps sticking out below the bottom incision are the port.

Here is what the port looks like accessed. 

This has been quite the week-emotionally and physically. Of course things never go as planned. But I am really glad I asked my doctor to do a scope, and really glad it showed something that we can treat, and most likely will improve. And of course, Chris is amazing and always takes such good care of me. I haven't had the energy to do much more than sit on the couch, so he has had to cook and do the dishes, but he is a rock star. I really couldn't imagine anyone else taking better care of me, being more caring, or loving me more than he does.  Sorry this was so long-but there ya go!

Health and Baby Update

I just wanted to write an update so I can remember everything later. I ended up being on TPN from the middle of September to the end of December (like the very end. Dec 31st to be exact). I slowly gained weight and when I gained back the 15 pounds that I had lost, we weened off of it over a couple weeks, then stopped it altogether. I got the PICC line out the last day of the year, so that we wouldn't be billed anything in the new year. Literally in the nick of time. We met our out of pocket at the beginning of the year and didn't really want to pay for anything TPN related. Been there, done that (and still doing that from the last time)...

I also slowly started to feel better during this time. I was able to start eating pretty normally, which I was thankful for. Since I have gotten the PICC removed, I have lost about 6-7 pounds, even though I am eating well. It is a never ending battle and I don't know what we will do if/when I lose another 7 pounds. We need to think of a better solution. We never really figured out what the problem was, except that maybe it was cysts on my ovaries that was causing pain, and then causing me to not eat well. And I just can't afford to not eat well. But as you can see, even when I eat well, I can still lose weight. I am just missing so much of my intestine, I would not be surprised if I am bordering on Short Bowel Syndrome. Super fun. 

My joints have been hurting too. Not a huge deal, but it is one more thing. My fingers are what bother me the most, and sometimes my toes and knees. Last week I got steroid shots in some of my fingers and those fingers already feel a lot better. 

The day before I got my PICC line out I also went and saw the Hematologist in SL. I had seen him previously to try to figure out a way to get my iron up. My GI doctor didn't want to mess with it, since last time I had had iron infusions I had severe allergic reactions that took me to the emergency room. The Hematologist said there was an iron infusion that was given over like 6 hours, that could work, and less than 1% of patients reacted to it. This was great news. I had thought my options were pretty slim to none, so I was super happy to hear this. So I went and had it done and didn't have any problems. Last week I went back to check my iron levels and see if they had improved. I could already tell that all my weird cravings were gone, but I was still feeling tired (which could be attributed to lots of things). On the day I saw him, I was feeling pretty crummy. My blood pressure was really low, which he was concerned about. He asked me if I would like some IV Fluids and some Zofran and I said yes! But I had a training for Usborne in an hour and a half so they pushed it really fast and got it done in about an hour. That was last Friday. On Monday I called and found out that my Ferritin levels went from 15 to 575! I couldn't believe it! The doctor said that it would probably start to decrease again in a few months and I might just need to get the infusion every few months, or every year, depending on how long it took for it to go down.  I'm going to ask my GI doctor to check my Vitamin B12 levels again next time I see her. It has been over a year and that could also be contributing to my never ending fatigue.

Here is the iron going in. Chris was a trooper and came and sat with me all day.

Why hello arm, it's nice to see you! 

In November Chris and I also met with the Fertility Doctor, who we had seen a couple times previously to do some tests. He told us that based on our test results, the only way we would ever get pregnant was with IVF. Other fertility treatments wouldn't even work, and of course, IVF is not a guarantee either. He felt like we had a good chance with IVF though. So we spent about a month and a half really trying to decide what to do. We looked at all the different plans. We prayed-a lot. We went to the temple several times. We couldn't decide if we wanted to actually try to get pregnant right now, or if we wanted to try to adopt. When we really started trying to have a baby a year and a half ago, my health was good and we felt like I could handle being pregnant. Now we weren't so sure, especially now that we live far away from any family, my mom is not in a position to help me or come stay with me, and I could end up in the hospital or on tube feeding, etc. After a LOT of thinking and praying, we decided to try adoption. We have not ruled out IVF forever, but just for right now. In the future, when my health is better again and when we live closer to family, we want to try to get pregnant. We are in the process of researching adoption agencies in Utah and deciding who to contact and everything. (If you have any tips, let us know). We have given ourselves a deadline of when we want this decision to be made. I feel good about this and am really excited!

Also, since we made this decision, I decided to start another medication for my Rheumatoid Arthritis. We have been avoiding it because you can't take it if you get pregnant. I'm excited to start taking this medicine and for my joints to start feeling better. 

On a side note, we have had so. much. snow. I'm so tired of it! It is pretty, but I hate wearing snow boots every day, and driving it, and walking in it. And it is so. cold. Which is hard on my joints. But I guess it is pretty. :) I just can't wait for Spring though!

Hospital Stay #19

Sometime in July or August I started to not feel very well. Still ok for the most part, but just not as good as normal. I didn't really even realize it but I stated to not eat as well and started to lose weight. Like I said, I still felt ok compared to how I've been in the past, so it was subtle enough that I didn't think it was anything too bad. Once I noticed I had lost a few pounds I tried to eat better, but I was nauseated a lot and just couldn't. I also had been getting tons of UTI's so I saw the urologist who had me get a CT scan to make sure there wasn't anything wrong with my kidneys. 

I had an appointment with my GI doctor in SL on August 31. It was just a checkup because I hadn't seen her in 6 months. She had me go get blood drawn while she requested a copy of the CT scan. I was so dehydrated they could not get any blood. She was able to look at the CT scan, and when I went back up to her office, her nurse told me I needed to go get an MRI right away because it looked like there was a collection of fluid that could be an abscess. Since I've had them before she was really concerned. I went and got the MRI and after a few pokes they were able to get an IV started. Then the nurse called me and said that since they weren't able to get blood drawn, she wanted me to go and get some IV fluids to get hydrated so they could draw it. When I got to her office to get the fluids, the nurse told me that the MRI definitely showed what looked like an abscess, so the doctor wanted to admit me to LDS Hospital and give me fluids overnight, and drain the abscess in the morning. 

I was kind of surprised, but at this point, I was like, "whatever." This was my 19th stay in the hospital, and broke my year and half hospital free streak. Luckily it was just overnight. It was nice to get some pain and nausea medicine and feel a little better. The next morning they sedated me a little while the put in a needle and drew out several syringes of fluid. Luckily the fluid was clear and did not looked infected at all. But, they still decided to leave a drain it for a couple days. 

The hospitalist who was seeing me was also concerned about my nutrition. I had briefly talked about it with the GI too. Everyone was concerned with how much weight I had lost. (At this point I was 83 pounds, and had weighed between 90-92 at the beginning of August). From past experience, I know that once I lose weight, it is IMPOSSIBLE to gain it back on my own. In the past I would drink 3 Boost or Ensures/day, plus eat meals and snacks, eating enough calories well above what I needed to gain weight, and after doing this for weeks and months, did not gain a pound. When I feel good and eat normally, I can maintain my weight, but once I lose it, it does not come back, even after I start to feel good and eat better again. When I eat, my ostomy bag is full within 10 minutes. I'm missing so much intestine, that I just don't absorb what I eat very well. The dietitian came and we discussed all this and she thought TPN would be a good option and recommended in her note that I start it. The hospitalist came and said he talked to my GI doctor and they were hesitant to do TPN because of the risk of infection with a PICC line, and my suppressed immune system. He really wanted me to try tube feeding first. I explained that I've tried it in the past, and it makes me sick, even elemental formulas (which are easily digested). But I agreed to try it. I agreed so that they would see it didn't really work and I could get TPN. 

In the meantime, we found out that the fluid they drained was just fluid. Nothing grew out of it and no one could really say where it came from. The best anyone could come up with was that it was a cyst on an ovary or fluid in an fallopian tube. It was kind of strange because I had recently had a pelvic ultrasound and an HSG test (where they inject dye into the fallopian tubes to make sure they are clear) and neither of those tests showed a cyst or extra fluid. So I need to follow up with the fertility doctor and OBGYN about this. The drain was removed by my primary care doctor a couple days later.

When the tube feeding was started we increased the rate it went in very slowly, but whenever it got above 15 or 20 ml/hr, my stomach hurt too bad, so we either had to stop it or bring it back down. This went on for over a week and I had a heck of a time convincing someone to help me and get TPN instead. I actually lost more weight during this time, and weighed as low as 79 pounds. If we lived in a bigger town, it wouldn't have been an issue, but there are no doctors or dietitians here in Roosevelt that manage TPN, and my GI doctor said she didn't do it either so I should find someone else. She actually called me right about when I had tried calling the last person who I thought might be able to do it, and asked if I had found someone. When I said no, she said she would do it. She forgot to send an order to have the feeding tube pulled out, and she was going to be out of the office the next day, so Chris just pulled it out for me. :) He was pretty proud of himself.

That night I was up all night with bad abdominal pain. I felt like I had a bowel obstruction. I've had them so many times I really felt like that was what it was. We went to the ER about 6 am. It took the nurse FIVE times to get an IV started. He even had a cool thing that he shined on my arm and it showed him where all the veins were. My veins have just had it over the years I think. The doctor was not convinced that that was the problem and it was hard to convince him to even do an x ray. Finally he did, and then we did a CT scan and it turned out that there were more cysts on my ovary. I had my PICC scheduled that afternoon, so we went and did that not long after we left the ER. Just a nurse did it, so I was glad I was so drugged up so I pretty much slept through the whole thing. It took a couple hours and involved a lot of blood, but he did a good job. 

So we did get the TPN started and have been doing it ever since. I have had to do it 24 hours/day, but we are working towards only doing it at night. My weight is back up to 82 pounds, so I am getting some weight back, slowly. :) I am feeling better. Still not able to eat a ton, but I am eating. The GI doctor does not really think this has any to do with my Crohn's, and I'm beginning to think so. Lately I randomly keep getting sharp pain on my left side. Sometimes it is only there for a few minutes, sometimes it is there all day. I think it has to do with cysts on my ovary. So more doctors are in my future, but hopefully we can figure it out.

I have appreciated all the prayers and love. I always feel very loved whenever I go through something like this, and I definitely feel the love of my Savior and all he does for me. Chris is also a huge plus! Don't know what I would do without him, really. :)

Waking up after the fluid was drained.

 Bruise from one of many IV's I had

The wonderful feeding tube

FINALLY a PICC line. :)

Baby Update

Just wanted to let everyone know that we are still trying to have a baby. I know that we have only been trying for 9 months, but we wanted a baby for 2 years before that, and couldn't even try because of my health. So this seems like it is taking so long! 

My OBGYN here said that if I was younger he would tell us to wait a little longer, but because I am 28 (I know!) we could go ahead and start trying some other things. It has been kind of hard lately with both of us being gone so much and being apart, but we have now talked with a fertility doctor and had a couple tests done. So far everything looks good. We are going to do a couple more this month and go from there. 

We read this article last week for Family Home Evening and it helped us to have a renewed hope and to think of some more actions we want to start taking to help us have a baby. 

https://www.lds.org/ensign/2015/08/young-adults/patience-more-than-waiting?lang=eng

I love the gospel and the help it gives us through our trials!

If we don't get very far with this, then we may start thinking of Foster Care, because it is so much cheaper to adopt that way. I'm not ready for that yet though. I want a baby so bad, I just don't know if I could handle that right now. Maybe if I already had my own child. We are not actively looking to adopt yet, but if anyone knows of a baby that needs some awesome parents, let us know!

I have still be feeling pretty good. My joints have decided to act up again. I had an appointment with the Rheumatologist who wants me to start taking a medication that I stopped taking because we are trying to have a baby. She seems to think it would be fine to take while pregnant, but others doctors have told it's not. She did say that the better your arthritis is controlled, the better the baby will do, but I think I'm going to see if she will give me some steroid shots in my fingers instead. She only does them on Fridays, so I might have to make another trip to SL, but that would be worth it. My stomach has bothered me a little the last month or so, but not bad. I have an appointment in a couple weeks with the GI doctor. I wouldn't be surprised if she says it's time for another scope. I just keep praying that I will keep feeling good so we can get pregnant. :)

Praying for a baby

So most of you know that Chris and I have been wanting a baby for a long time. After the whole surgery last December and TPN for 4 months, my doctors in Spokane did not recommend having a baby. So we haven't even been trying. We decided to try to adopt as soon as Chris finished school. But then LDS Social Services announced that they weren't going to to do adoptions anymore. Literally 2 days before we going to submit the papers. I checked into a bunch of adoption agencies in Utah but they all just cost way more than we can afford. So we decided to fast and pray about it again. This time, we felt much better about having our own. I have been feeling really well since we moved. I think it is because I haven't had to work. I can sleep in if I need to, rest if I don't feel good, focus on eating better, etc. 

Right after we moved, I got an appointment with a primary care doctor here. He wanted me to see some other doctors before we go ahead and start trying. I saw an OB in Roosevelt, and we talked about medications that I would need to stop taking. And I was perfectly ok with that, because they were mostly meds that don't help me anymore. Then I had an appointment with a GI doctor in Salt Lake on Friday. I was really looking forward to this appointment and felt like it took forever, but it finally came. I really liked the doctor. I was hoping that she would just say "Yeah, have a baby, I'll help you if you get sick." But she wanted me to see a Urologist and a Maternal Fetal Medicine doctor (High Risk Pregnancy doctor) before hand. She also had me get blood drawn and it showed that I'm anemic and low in Vitamin D. I have slacked off on taking my vitamins lately, so I will do better. I have an appointment on the 15th with the Urologist, to have a scope of my bladder and make sure they still can't find a fistula. We wouldn't want to figure that out while I was pregnant, and need surgery. My doctor's in Spokane talked about the possibility of doing TPN while I am pregnant, so we talked about crossing that bridge when we get there. Hopefully I won't be that sick, and we won't have to go there. The MFM doctor will be able to tell us if there is a weight goal, and the risks of pregnancy and everything. I did lose 10 pounds when we moved, and I don't know why, probably from the stress of packing and everything. I wish that wouldn't have happened so the chances of us getting pregnant fast would be better. The appointment with the MFM doctor is not he 27th, so I guess I can wait 20 more days, right? 

We haven't ruled out adoption. If we heard of a baby someone was giving up, and could adopt them without going through an agency, then we would totally do that. I do have a name of a lady to call who has adopted a lot of children, and knows how to do it without paying an arm and a leg, so I am going to call and pick her brain. 

Sometimes I get really emotional when we are around kids. I just started crying spontaneously a couple times, when we were on Temple Square, just seeing cute kids and babies everywhere. I have also been known to cry at church, or walking through the baby section at the store. We want a baby so bad, so please pray for us that we will be able to start our family soon. And if you hear of any babies needing a mommy and daddy, let us know! 

No more PICC line!

And drumroll......I got my PICC line out!! No more TPN! Woo hoo! This time we tapered off of it slowly and I think my body handled that better than just stopping it cold turkey. We stopped it completely 3 weeks ago. It was supposed to be taken out after 2 weeks, but I lost 4 pounds in one week, and my GI doctor was out of town, so no one wanted to pull it till he got back. I maintained my weight after that, so it was pulled on Wednesday. It feels really good to not have to shower with a plastic glove on, and flush it with saline and heparin every night.

I also saw my GI doctor on Wednesday and we had a good visit. He was happy with my weight. He thinks it would be good if I got a bone density scan, since it has been a couple years. We want to make sure that I am absorbing the calcium I take. He does want me to get a Small Bowel Follow Thru done to check for a fistula and see how much intestine I have left. I am also going to see the urologist to check for the fistula. I'm hoping there really isn't anything there. He also says he doesn't think we should try to have a baby yet. He is afraid I would be sick, lose weight, and end up on TPN again. :( We are going to start the adoption process. I want a baby so bad!

Since we are talking about my 

health, I will also say that the Cimzia is helping my joints. When I saw the rheumatologist a couple weeks ago, only one of my fingers was swollen, and I was finally able to get my wedding ring off!

One dose too many....

Well last week was quite the week, with not one, but TWO ER visits. That's right, I am just that cool. I've been anemic since my surgery. They gave me a blood transfusion in the hospital, but it has not been improving since, and in fact has been decreasing a tiny bit every week. So my GI doctor checked my actual iron labs, and they were low. He ordered 5 iron infusions.

I received the first one at the hospital because iron can cause allergic reactions, which are more likely to happen during the first and last infusions. It went fine, so we did the 2nd one the next day at my house with a nurse from the infusion company I get my TPN through. We got through the whole infusion, which took about an hour, and then she was running some fluids when I scratched my arm and it felt like it was on fire. Immediately both my arms were tingling and burning. Then I took a deep breath and there was a severe pang in my lower back. My hands started to swell up and I then I suddenly felt extremely nauseous. The nurse gave me some IV benedryl and we waited a couple minutes but everything was getting worse. She called the pharmacist, who told her to give me more benedryl, and said we should call 911. It became really hard to swallow and I was really afraid my throat was going to actually close up. We live about 4 minutes from the hospital so the ambulance was there really quick. Actually some firemen showed up first. They were checking my vitals and my oxygen stats were fine, it was just very painful to breath and so my breathing was very shallow. Well, just my luck, when we got to the hospital they said every ER bed was full. I told the paramedics that I was now having chest pain that was getting worse. They told the nurses who still said they didn't have anywhere for me to go so they put me in a wheelchair and made me sit in the waiting room! I was crying by this point, which wasn't helping any. My hands were now so swollen I couldn't straighten my fingers and you couldn't see my knuckles. My feet were swelling up too. I was so upset. Couldn't they have put me in the hall and given me something? The whole way there I just kept thinking that I at least this time I wouldn't have to wait in the waiting room for forever. We only ended up waiting for about 15 or 20 minutes when they took me back. The doctor basically said he didn't know much about iron reactions so he was going to call my GI doctor. We didn't see him again for 3 more hours. Eventually I was able to get something for pain and nausea. I finally used the call light and asked the nurse what the deal was, and she got the doctor to come in who said he hadn't forgotten about me (um not so sure about that). He said my symptoms were pretty common and that if I was feeling better I could go home. Well I was so tired of being there and them not doing anything I wanted to leave more than anything. I literally crawled into bed and we didn't do TPN that night. I made it to work the next day, but my legs felt like jello and I couldn't wear my contacts because my eyes were itchy and watery and felt swollen. It was a long day and I had to work almost 12 hours. I was so exhausted.

It's hard to tell from the pic how swollen my hands were, but they both were, especially the right hand. 

We didn't do an infusion the next day, Wednesday, but we did one on Thursday. On Wednesday they had me take some prednisone, claritan, and zantac (which apparently has some antihistamine in it). I went to the infusion company's office to have it so that other nurses and pharmacists would be present. They gave me IV steroids and benedryl 30 minutes before the infusion and ran fluids at the same time. Well we made it through the whole infusion once again. I was feeling fine when the nurse noticed that my chest was all red. Within literally the next minute my arms started turning red and burning/itching again. Little tiny bumps started to form on my arms, and as more time went by, they turned into huge half-dollar sized welts. My hand and feet were swelling again, and I started to get the pangs of pain in my back and chest when I breathed. They gave me another dose of benedryl but I wasn't improving so they told us we needed to go the ER again. I was so disappointed. I didn't feel as bad as I had the first time (probably because of the premeds) so I was just really hoping it would start to get better. Their office is in Spokane Valley, so we went to the Valley hospital.  We were only 5 minutes away, and 25 minutes away from Sacred Heart, the one we usually go to. By the time we got there, my right arm was one huge welt, all red and swollen, and I was limping when we walked in because my feet were so swollen it felt like I was walking on balls. I sat down in a chair for about 30 seconds while Chris was filling a form about what was wrong. The nurse had called and told them we were coming too. They brought me right up and took my vitals. Then took me right into a room with a PA and a nurse who looked me over and got me right back to a room. They didn't even care about what meds I was taking, they told Chris to give the list to them later. When we got into the room one nurse told another nurse to hurry and get the doctor. He came in and acted like he knew way more than the doctor at Sacred Heart. They immediately gave me more benedryl, steroids, and pepcid, which has antihistamine in it. The doctor said my airways were open so my oxygen stats were good and I didn't need an epi pen. But he said that didn't mean I wasn't having difficulty breathing. We noticed  a short time later that my right arm looked almost back to normal and my left arm was much better too! The breathing pain was the last thing to get better but it improved pretty quickly. They also gave me stuff for the pain and nausea. They had us stick around for awhile just to make sure I was still improving and doing ok. When we left we had only been there about 3 or 31/2 hours and I was feeling much better. The next day was much better too, I wasn't feeling the effects of it anymore. They ER doctor had me take some prednisone for 3 days afterwards though, because he said that sometimes it can relapse and come back randomly in the next day or two.

This pic was taken once things had gotten a lot better. You can see the side of my hand that is all swollen, and the red patches on my left arm-what was left of the welts. My right pinky was huge!

Moral of the story: no more iron for me! I was able to still get 3 full doses, and I have felt like I've had more energy this week, so that's a plus. :) Other than that, I have actually felt really good the last 2-3 weeks since I started TPN again. I just got 7 more bags of TPN, and they decreased the calories and volume by 20%. We are going to try tapering off of it this time, instead of cutting it cold turkey, to see if my body handles it better and hopefully I can stay off of it. I have officially gained 20 POUNDS! The last few days I have had such a good appetite and feel like I'm eating constantly. I can no longer fit into some of my pants. :) But Chris so no new pants until I'm off TPN and maintain my weight. Which is probably a good idea, haha.

I also think the Cimzia is actually helping my hands..lets hope it keeps getting better! I hate doing the shots. Its harder because there's a huge long needle instead of a pen like the Humira was, but it's worth it.

All for now...hopefully the next post is not about the hospital!