I am going to back up a little to after I was released from the hospital in October, after I had my port removed and stopped TPN. I began trying to think about my options with my medications and nutrition support, and discussing this with my doctor. We decided we should not stop Remicade, because it helps me so much, and to try tube feeding again. I got in touch with my dietitian and had a long phone conversation with her. The reason why I had been doing TPN is because I could never tolerate Tube Feeding very well. When I tried it about 2 1/2 years ago, I actually LOST 7 pounds in that two weeks. BUT every time I have tried, the feeding tube has gone down into my small intestine. Well I don't know about you, but I'd rather have "food" going into my stomach-it is much more comfortable. The reason they do the small intestine is so your stomach still feels hungry and you can still eat real food. But it just made me too sick. So we decided to try an NG tube, ending in my stomach, for 3-4 weeks. We found a formula that already has the proteins and fats and everything broken down, so it is essentially already "digested." The plan was to get this all going right after Thanksgiving, and go until right before Christmas. Because of problems with getting all the right orders and everything, and a huge mix up with being told that they don't place NG tubes in Roosevelt, it took a longer to get things going than we had planned. I ended up having to drive to SL just to get the tube placed.
Right away I tolerated it pretty well. I got up to the goal rate, pretty quickly. I was supposed to do it for 16 hours a day, but I hated being hooked to it that long, so sometimes I would even do a higher rate so that I could do less hours in the day. The goal was to see if I tolerated it, and I did, so we pulled the tube right before Christmas. I had wanted to have a permanent one placed before the end of the year because I had met my out of pocket for my insurance, but things just couldn't be planned that quickly. My doctor wasn't comfortable placing the tube because she hasn't done many of them, so she had me see a surgeon, but the surgeon was fairly new and after meeting with her, I didn't really feel comfortable with that option either.
As a lot of you know, my sweet mother passed away the day after Christmas. A couple days later, the 28th of December, I went to SL and had a liver biopsy. My doctor was concerned that my liver labs were still elevated even though I had been off of TPN for a couple months. It wasn't too fun, but wasn't super horrible either. They sedated me enough that I don't remember a lot of it. It was sore for a couple days. The results came back showing that my liver was just still inflamed from the infections I had had, and not from TPN or Remicade. That was good news.
I really did not want to pay any medical bills this year, and since I was at a good weight, tube feeding wasn't super urgent. So we waited until I had met my out of pocket for the year. Because the Remicade infusions are so expensive, most people qualify for a co-pay card that pays what the insurance does not. It leaves us with very little to pay, even though we meet the out of pocket. Which is a huge blessing for us.
So once the out of pocket had been met, I had a CT scan and my GI doctor's partner (who has placed lots of feeding tubes) looked it over and said he would be able to place it. I met with him and he said my liver was pretty enlarged and in front of a large part of my stomach, and there literally was a space about the size of a quarter that he could place the tube, but he felt confident he could do it. He told me he would us General Anesthesia which made me very happy. I don't even know why they only use conscious sedation for things like this. Why would you want your patient waking up in the middle of cutting a hole in them? I remember observing a PEG being placed once during my internship. It was an older lady and she was awake through a lot of that. They are sticking tubes down your throat and cutting a hole in your stomach, and your awake???? She looked miserable and I just didn't understand why they don't sedate you more. So I was super happy when he said he has started using General Anesthesia.....Anyway, he also said he would admit me overnight, since the procedure was scheduled for late in the day, I live 3 hours away, and I always have trouble with nausea after
anesthesia. The downside was that he would have to originally place a PEG tube, which is an actual long tube that comes out of you, and a big pain. Similar to what I had once in the past and I absolutely hated it. But that would just have to be in place for 6 weeks, and then it could be traded for a button, called a Mic-Key. It literally is just a little button, pretty flush with the skin, and much easier to deal with. He did tell me that about 50% of feeding tubes get pulled in the first year because they are just a pain, but he also agreed it was worth a try. I felt pretty confident that this was what I needed to do. I was excited to be able to have some nutrition for maintenance. Something I could run if I lost a couple pounds, and then take a break from, etc. I was excited to avoid all those low points, where I'd get down to 80 pounds and feel miserable. I knew the first 6 weeks would be rough, but boy was I in for a surprise!
Here you can see the difference between the PEG tube I will have for 6 weeks, and then the button I will be able to get later.
A week before the surgery, I got super sick and after a few days gave in and went to the ER. I have a part of my bowel just a couple inches inside my stoma, that gets narrow and blocked every now and then. My GI doctor dilated it with a scope about a year ago, and I was feeling that was happening again, and that it needed to be dilated again. After going in to the ER, I went into the outpatient IV clinic two more times and got IV fluids. That helped a lot but it was a rough week. I emailed the doctor doing the surgery and asked if he could dilate that part of my bowel at the same time he placed the tube, and he said that shouldn't be a problem.
ER Visit (pain meds decrease your oxygen levels, hence why I am wearing oxygen)
Hospital stay #23
The surgery was scheduled for Tuesday, March 20th in SLC at LDS Hospital. I woke up pretty nauseated, which was expected, and in tons of pain, which was not so expected. The doctor had told me that he sends most people home with numbing cream and that that is sufficient for the pain. It made sense, so I expected just to be a bit sore. That was definitely not the case. I was able to tolerate a little dinner, but after that things got even worse. Throughout the night they had to give me IV Tylenol, Toradol, and Dilaudid for pain (though it was a super low dose of Dilaudid). Drives me nuts that doctors just won't give me a dose that actually does something for the pain. But anyway, I was having shooting pains all around the tube. I felt like I could barely move, or breathe. In the morning I tried to eat breakfast and got down 2 bites and I was done. It was like I could feel the food going into my stomach and irritating the tube inside. Shooting pains again, throbbing, etc.
Also when I woke up, the doctor told me that he decided not to dilate that part of my bowel. He said he didn't feel comfortable doing two things at once. If there were complications, he wouldn't know which procedure caused it. Which made sense. He said he would do it in the morning. I assumed he was going to take me and put me to sleep again-since the last time I had it done, it was painful and I had to be admitted, but I really didn't know what his plan was.
He came the next morning and was surprised at the pain I was having. He got some lidocaine cream and pretty much stuck his finger down in the incision and rubbed it all around, which put me in tears. I told him it wasn't helping at all. He said maybe my stomach was just sensitive to the tube. Your stomach is a muscle, so whenever it contracts, it could have been squeezing the tube in a way that was causing pain. He also wanted to stick his finger down my stoma and see if he could dilate my bowel that way. I told him not right now because I was still bawling from him sticking his finger in the incision. He said he'd come back later and do it.
I was still having quite a bit of pain, but feeling better and ready to go home that evening. He came back and I asked him about dilating the bowel now and he said he didn't think he should mess with it since I was still having pain. We were released. We went to Springville to pick up Luci from my niece, but my pain had gotten a lot worse by then so I told Chris I couldn't handle the drive home. We stayed the night at my Aunt and Uncle's house in Orem, and went home in the morning.
Luci loves staying with my nieces. This is my niece Kelsi, and her husband PJ. Jenna and her husband Chandler also helped and Luci loves them all.
Hospital stay #24
By the day we went home (Thursday), the pain was much better and I was feeling like I was going to live. We went home but Friday night and especially Saturday, I was having a lot of pain again. Though this time it was different. My stomach was feeling very bloated, I couldn't eat, I hadn't had any output in my bag all day, etc. Around 6 pm I called the On-Call number for my GI doctor and was told I should go to the ER. We took Luci to my amazing Visiting Teacher with the plan for her to spend the night there. In the ER they put contrast down my tube (which was nice because I didn't have to drink it), but it just made me feel worse. I had a CT scan and it showed an obvious obstruction, right in the place that I had wanted the doctor to dilate it. The surgeon on call came in and stuck his finger down there. He felt like it got stuck, so then he stuck a small red tube down it and left it there until the next day. (FYI-a stoma does not have any feeling. It's a tiny bit uncomfortable, but for the most part you don't feel much). I was admitted about 11 pm.
Not long after I got to my room, I started throwing up. I think I ended up throwing up about 4 different times, each time was a lot. In the past when I have had obstruction, they always place an NG tube and put it on suction (to get everything out of your stomach to hopefully clear the obstruction). Since I had the feeding tube, they just hooked the suction up to that, which was really nice. No tube down my nose! It usually helps the nausea a lot so I was surprised I was still throwing up so much. I have only thrown up one time with an NG tube in place. They had also given me Phenergen and Zofran-two different nausea meds. I have also never thrown up after getting Phenergan before. I was so sick. However, I don't think they were getting very good suction. By morning they had figured out how to get it better and I stopped throwing up.
That morning, Sunday, the doctor came and said that my CT scan also showed that I had a lot fluid in my abdomen. He held up his hands to show the size, and it looked to be about as big as two baseballs. The plan was to go to the OR and drain in, and place a drain for a few days. At this point I had started getting fevers as well. My temp was about 102. Around lunch time they took me back, put me to sleep, and drained it. I woke up back in my room, very slowly and could already tell that I was feeling some relief. They had said the fluid was taking up a lot of space in my abdomen and probably making the obstruction worse, and causing pain and pressure. I was so happy that it immediately helped me. So now I had the feeding tube, the drain tube, and my ostomy. My stomach looked like a war zone, ha!
They started IV antibiotics and gave them to me the whole time I was there. I'm thankful I don't react to them, since I have had them a lot. My potassium, magnesium and sodium were low and they had to keep giving them to me the whole stay.
I was only allowed ice chips, and they were pretty stingy with them. I wanted more than anything to be able to drink some juice or water. Monday morning the doctor said we could stop the suction, and if that went well then we could probably start the tube feeding at a very slow rate and see how I tolerated it. But I asked him if I could just try eating instead. They sent me some clear liquids. I was SO excited, but got pretty sick afterwards. We hooked the tube back up to suction and I was back to no eating or drinking.
Tuesday morning they did start the tube feeding, at 10 ml/hr. That seemed to go ok so the next day they bumped it up to 20 ml/hr. (FYI-the goal is 75 ml/hr). That made me somewhat sick but I was ok and we kept doing it. I was a little frustrated with the surgeon who was following me. He just kept saying that I should be fine now and whenever I felt "normal" I could go home. I certainly didn't feel anywhere close to normal and was still in a lot of pain. My stomach felt like it had a basketball in it and there was so much pressure and no space to even breathe. But Thursday I ended up telling him I was ready to go. I kind of wanted to wait one more day, but thought I would be ok to go. I was eating somewhat at this point and was happy with my progress.
Wednesday Chris had driven Luci to Orem and met his step-mom who was driving through back to Idaho. She took Luci with her. So when we came home, Luci wasn't there and it was so helpful that I could rest as much as I needed. I was taking my pain pills as much and as often as I could, and pretty much laying in bed and sleeping all day.There is no way I could have taken care of Luci with Chris working. She had lots of fun with all her cousins.
Hospital stay #25
By Saturday morning I decided I could travel and we went home to Idaho so we could spend Easter with Luci. We had a nice weekend. I still was taking a lot of medicine, and Sunday started having more pain that was getting worse again. We got home Monday afternoon with Luci.
But my pain continued. Tuesday morning I called and got an appointment with my primary care doctor. I didn't really know what he could do, but I was hurting. Chris took me to the appointment and I was almost in tears by the time we got to see him. He called the surgeon who had followed me in the hospital, who suggested an x-ray to see if there was another obstruction. We went and had the x-ray and they said it looked like there may be one, but wanted to know for sure. So they sent us to the ER to get a CT scan. When we were told that, I started crying to Chris that I did not want another CT scan. I knew I wouldn't be able to handle the oral contrast. They didn't even mention me taking any contrast so I was happy about that. They came back and said it showed an ileus, and more fluid in my abdomen. And ileus is a little different from a blockage. Instead of a place in the intestine actually being kinked or having something stuck, the intestines have basically just stopped moving and working. When I was in the hospital with the blockage and fluid, no one really said where the fluid was coming from. They weren't sure now either. The doctor who had drained the fluid, was now out of town for the week so they decided to send me to SL. I waited for I think a couple hours for an ambulance to come. Chris was with Luci getting her ready to go, and packing for all of us. I was in quite a bit of pain, but luckily they gave me lots of drugs which knocked me out.
Before Chris got on the road, he brought Luci by to say goodbye. As you can see, she has been picking out her own outfits these days. LOL. :)
The ambulance ride was not as bad as the one in October. They gave me meds right before we left. I was able to sleep for quite a bit of it. But for probably the last 45 minutes, I was awake and having lots of pain again. We got to the hospital around 11 pm I think. Chris had dropped Luci off with my niece again (thank you so much Kelsi, PJ, Jenna, and Chandler!) and then got to the hospital about 20 or 30 minutes after me. What was interesting, was by the time we got there, my ostomy bag was full. Nothing had come out all day, which was causing all the pain. It filled up a couple more times during the night. In the morning my pain was significantly better. I felt like the ileus had gotten a lot better at this point.
The GI doctor who had placed my PEG tube came and saw me in the morning (Wednesday). I told him everything that had been going on. He decided to take me to endoscopy and do a scope and dilate that part of my bowel if it needed it. He mentioned he was still glad he hadn't done it when he placed the PEG, because now he would be worried about a bowel perforation. That made sense too.
A hospitalist also came that morning and told me that we needed to stop all pain meds because they can slow down your bowel and could be causing the ileus. If I had still been in excruciating pain I would have argued with him, but since things had already improved a lot, I agreed. He did say I could have some if pain got super bad, but to try to go without it if I could. I had last had some about 5 am. I waited till about 3 pm to ask for some, by then it was getting pretty bad again. The nurse came and said she still couldn't give me any. I kind of told her that the doctor had said I could have some if it was bad, but she didn't listen and wouldn't give me anything. She told me to wait for my procedure and maybe they could give me some then. I was also on IV antibiotics the whole time here. They felt by the time I went home that I didn't need any oral ones.
I had the procedure that afternoon around 4 pm, which meant I hadn't been allowed food or water the whole day. I was getting pretty annoyed at not being able to even drink. Your mouth gets so dry and it is really hard to go without anything. They would not even let me have ice. The procedure went well. I woke up fine. I was in some pain and having some nausea, so they did give me some medicine. The GI doctor said everything actually looked good. He said the bowel was only a tiny bit narrow so he didn't have to do much. They looked at the rest of my bowel and there was no inflammation (thank you Remicade). There were some ulcers at one point where there is an anastomosis (a point where my bowel has been sewn back together in the past) but he said that was likely more a result of the anastomosis, and not Crohn's. He removed a lingering staple and took some biopsies and that was pretty much it. I talked to him about the pain medicine, and asked him if I could at least have some when it got bad and he said he didn't have a problem with that.
That evening when the nurses did shift change, I told both the old nurse and new nurse what he had said about pain medicine. I made it pretty clear that I wasn't happy that I had been denied anything earlier when it had been 10 hrs since I had had anything. I understood why they didn't want me to have a ton, but by now the ileus was pretty much resolved and I didn't feel it was fair to not let me have anything. Like every 10 hours I should be able to get some relief, lol. The new nurse was nicer and let me have some medicine a couple times during the night, and the nurse the next day was nice too. Another thing was, there is apparently a shortage of IV nausea meds in the country. So if I could take a pill, I was always offered that first. It just didn't provide the instant relief that IV meds did, but I survived. Sometimes I did get the IV meds if it was worse. I was also able to eat clear liquids that night. The GI doctor had told me I could eat what I felt like, but the hospitalist seemed to be in charge and had other ideas (the clear liquids). The nurse did let me have some crackers though.
However the pain medicine was making my blood pressure go super low. I kept getting woken up a million times in the night to recheck my blood pressure. They kept asking if I was dizzy or lightheaded, and I kept saying I wasn't. I was a little bit but I really wasn't super symptomatic. They said it was from the pain medicine. I should have just asked for the doctor to order a pain pill instead, because that wouldn't affect it and it probably would have controlled my pain better. The IV dose they were giving me was minimal and not giving me tons of relief even when I did receive it. (Again with the ordering of tiny doses of Dilaudid. I'm really not a druggy, but I know what doses help and what ones don't).
Thursday the goal was to have a CT scan, and compare it to the one I had had in the ER on Tuesday in Roosevelt. The CT wasn't until after lunch time so again I couldn't eat or drink all morning. I did have to drink a bunch of contrast, but after that I was told I could eat a regular diet. I ate grilled cheese and some cheesecake, and a few bites of a few other things. Probably overdid it a little because I was pretty nauseated afterwards. The CT came back fine, and showed very little fluid in my abdomen, if any. They said the one in Roosevelt didn't even show tons. So maybe the doctors in Roosevelt overreacted a little, but I feel better that it was all able to be checked out and that we knew it wasn't a problem anymore.
The next day, Friday, I had a test called a Small Bowel Follow Through. It couldn't be done on the same day as the CT because they use different types of contrast. Again I couldn't eat or drink anything after midnight. I was sad I never got to have breakfast in the hospital. That is always the best meal in hospitals. The others are usually nothing to brag about.
It was a little frustrating that everything seemed to be taking so long-like we could only do one thing a day. This test is one of my least favorite tests. The contrast if the worst tasting of all contrasts, and I almost lost it a couple of times. If I could insert emojis in a blog post, I would do the one with the little sick green face, because that is how I felt. They could move the table that you lay down on, completely vertical, so I had to stand on a little ledge against it, while trying not to fall, and while drinking the contrast and keeping myself from throwing up. They kept tilting the table back and forth, having me turn different directions, all while taking x-ray after x-ray and drinking more and more contrast. They were watching the contrast go through my system, and making sure it wasn't leaking out of my stomach or intestines anywhere. They were wanting to rule out any reason for the fluid to accumulate. If they had seen something, we would have been talking about surgery. I was done by about 10:30, and I really didn't expect to hear results until afternoon, and really didn't expect to be able to go home till the next day.
The doctor came though right before lunch and told me that it all looked good, and that if I felt well enough I could go home. She also said I could stay one more night if I felt like I needed to. Chris and I had already somewhat talked about it and concluded that really I just needed pain and nausea control, and we could do that at home. We thought even though we'd be getting home later in the evening, it would be nice to wake up in our own beds the next day. So I told her I was ready to go. She also changed my diet so I got some lunch, and then I took a quick shower and put on clean clothes before we left. The nurse I had that day was my favorite. She was surprised that I was going home, and asked me about a million times if I really felt ready to go. She was worried about my blood pressure. Truthfully it probably would have helped a little to stay and get more fluids in to help the blood pressure a little more, switch over the pain pills rather than IV meds, eat a little more before leaving, etc. But I just wanted to go home so bad. And I wouldn't have gone if I really didn't feel ok.
We went to Springville and picked up Luci. I had actually seen her that morning because my niece had an appointment in SL, so she had dropped Luci off at the hospital so Chris could watch her for awhile. He took her to McDonald's to play, and then brought her to the hospital right as I was finished with my test. I was able to go down to the lobby and see her for a few minutes. Then my niece came and got her again. But my niece and her husband kept saying when we were on our way to pick her up, that she kept looking out the window saying, "Mommy, daddy, mommy, daddy home!" I think she missed us and was tired of being away from us, just like we were tired of being away from her. It had been a long 2 1/2 weeks.
One kind of funny thing that also happened was I almost lost my phone in the laundry. Some of you will remember from my stay in SL at the U of U, my phone and iPod were stolen out of my room when I went for a procedure. Ever since then we have been very careful about what we leave out and what we take with us when we leave. If we were just going for a walk, both our phones went with us, etc. Well since they came and kind of took me for the Small Bowel Follow Through pretty suddenly, we didn't have time to talk about a plan. Kelsi was supposed to drop Luci off really soon and I would need a way for Chris to tell me when they were back so I could have someone take me down to the lobby (she couldn't come up to my room because they don't want to spread germs to/from little kids). But I left and didn't take my phone with me. When I got back to the room, I couldn't find my phone anywhere. I knew they changed my bedding while I was gone, so I wondered if they set it somewhere but I couldn't see it. I couldn't really get up and look around the room but I could glance around and I didn't see it anywhere. I wanted to be able to tell Chris that I was back so he could come back from McDonald's. I got the computer and tried texting him from that but it didn't work. I had a hard time with the WiFi but when I finally got it to work, I sent hime a FB message and told hime I was. I then said, "I assume you took my phone with you so it wouldn't get stolen." He responded that he did not take my phone and thought that I took it with me. I was like, "Hmm...Oh we'll probably find it later." Before I could go down to the lobby they had to take some blood, take some vitals, etc so I had to sit and wait for a few minutes. I got a little nervous that my phone was nowhere to be seen. I decided to get on the computer and go to the iCloud website and use "Find My iPhone" to make the phone ring. I started to hear the beeping and it sounded like it was coming from across the room. There was a closet right by the door so I thought maybe the aid who changed to sheets set it in there. Against my nurse's orders, I got up by myself and went and looked in the closet, but it wasn't there. Then I could tell the sound was coming from the hall. That made me a little nervous that someone had stolen it again. I walked out and there was a laundry basket right across the hall. It was definitely coming from the laundry basket. Another aid came out of another room and I told him it was my phone that was beeping from the laundry basket. I told him my sheets had been changed while I was gone and it must have gotten mixed up in the sheets. He said he would look for it for me. I went back to my room and sure enough, a couple minutes later he came back with my phone, and after wiping it off with a Clorox wipe, he handed it to me. He said it was rolled up in my bedding so probably hadn't touched anything else. He told me to give my aid a hard time for not checking the sheets very closely before stripping the bed. When my aid came back later I mentioned it to him, but I was laughing at this point. He felt so bad, but I told him not to worry about it. I was thankful though, that I had decided to look for it instead of waiting for Chris to get back. It would have been taken away. They hospital does not do their own laundry, they send it out to another facility so it would have been toast. Phew!
So we came home Friday, and now it is Sunday. Since being home I have not had very much pain. In fact I have just been taking Tylenol for some discomfort. The hardest thing has been the nausea. I don't feel like eating anything, nothing sounds good, and when I do eat I feel worse. It feels similar to other times when I have come home from surgeries or hospitalizations. I think my tummy just needs to get used to eating again. I am going to start the tube feeding again tonight (at a low rate) and see how that goes. Hopefully I'll be able to increase it every day. I do need some nutrition. I could probably name everything that I have eaten over the last two weeks on my two hands, and it hasn't been anything super significant. Chris is a little worried that I'm not doing better, but I feel that I just need to give it time and ease into it. I am crossing my fingers that that is all it is, anyway. I see my primary care doctor tomorrow, and my GI doctor a week from tomorrow.
Hopefully in one month-ish I can go back and have the big long tube replaced for the button. I'm hoping that these complications and set backs won't make the doctor want to wait longer. I will be so much more comfortable when I have the button. Summer is coming, and I want to be able to go enjoy being with my baby girl outside. We have some reunions, camping, swimming, etc planned and I want to be able to enjoy it all. I really feel that once this is all healed and I'm feeling better, the tube feeding will help me maintain my weight and stay healthy and feeling good. :) Chris and I would love to start trying to adopt another baby soon as well, but I need to be healthy enough to take care of two kids first.
This week I plan to still take it pretty easy. I am having some symptoms of the low blood pressure. I need to take it slow when getting up and walking. I'm trying to drink lots of water to help that. I hope to go back and listen to Conference talks since we were traveling and I was sick and we missed a lot of it. I plan to cherish my time with Luci and hug her as often as I can. I really miss my mama and wish so bad I could call and talk to her, or that she could come here and stay with me and take care of me. Chris does a great job but he has to go back to work now. And there is nothing like your mom to take care of you when you are sick. It is still sort of unreal to me that she is not here anymore. But I know she is not in pain anymore, and she is still there for me when I need her. I'm grateful for my mothers-in-law. I love them like I love my mom, and so thankful for their love and relationships we have.
Luci has been so sweet. She sees my feeding tube, my bruises from IVs, and will say, "Mommy tummy hurt? Mommy owie?" And then she will give me a kiss and say, "All Better!" (She watches way too much Doc McStuffins).
I'm so thankful for all the help we have received. We are so blessed with wonderful family and friends who have helped with Luci, with meals, with coming over and washing my dishes, with friends who rushed to the ER to see me before I left for SL, only to get there just as the ambulance was leaving, with phone calls, texts, love, concern, and prayers. Thank you all so much.
