Thoughts From Jill: 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. :)