Just past midnight on Tuesday 11/8 my husband and I were trying to get to sleep for the night. I had continued to deteriorate and was at the point where I asked him to cover up the mirror in our bedroom because looking at my reflection scared the hell out of me. I had talked to my surgeon's nurse that evening and the plan was that I would return to the hospital Tuesday. She was supposed to call me in the morning to tell me if they had a bed for me, etc. As we were trying to go to bed, I was overwhelmed by my own weakness and the pain that had developed in my low right abdomen. Every instinct I had was telling I couldn't wait until morning, I needed to go now. I finally admitted to my husband that I was scared I wouldn't be ok at home overnight and we made the decision to load our sleeping kids into the car and drive up to the ER at the Cleveland Clinic.
I don't remember much of the drive. For me it was a combo of sleeping and staring out the window as the scenery went past. Both boys slept the entire way. We arrived right around 4:30 a.m. I was pretty relieved to see there weren't many people waiting in the lobby. I was even more relieved when my name was quickly being called. Little did I know that this was simply part one of this crazy multi-layer process. I was being triaged. They took vitals, I gave a urine sample that looked scarily like root beer. I caught another look at myself in that bathroom mirror and I looked like I had escaped from someone's Halloween display. And we waited. At some point my name got called again and I got registered. I was being wheeled around in a wheel chair because I was too weak to walk more than a couple of steps. They gave me some sheets and I squished myself onto a small bench and fitfully slept while my poor husband wrangled two boys who are definitely not used to being up at that time of day. About two hours passed and finally they were calling my name for real. On our way to the back, the nurse told me she needed to warn me about the room they were putting me in. "Does it have a bed?" I asked. She said it did and I told her that was all I cared about at the moment.
It turned out the room was their "security room" that they use for people who are mentally disturbed or otherwise violent. The walls are plain, there is no television. The door is heavy, bolts closed from the outside, and the tiny window in it is covered from the outside as well. It feels a little creepy, but there is indeed a place for me to lay down so I overlook all of this. By now, I needed to empty my ostomy, so we attempt to get a nurse. The young guy who comes in is very confused about this whole ostomy business and isn't sure what to do with me. I finally convince him that I just need a container, some paper towels, and something to clean my hands with when I'm done. He comes back with a bedside urinal, paper towels, and some disinfectant wipes. He put everything on the bedside table and vanished. Ummm, thanks for all of your help. Once again I have to say how grateful I am for my wonderful husband. He helped me to sit up on the side of the bed and then held the urinal for me while I emptied the pouch. That, my friends, is love. We didn't have anything to do with the container, so we decided to close the lid up and hang it on the side of the trash can.
The very next person who showed up was this muscle bound dude who looked like a bouncer or bodybuilder. He was huge! I couldn't help myself and made some crack about how he looked like he belonged with the room as the enforcer incase the crazy folk got out of line. He was very good natured about everything. Turns out his whole job was to get an IV line in me and draw some blood for labs. In my current state, this was no small task. All the good veins have been pretty thoroughly abused at this point and I'm severely dehydrated. Somehow this meathead looking guy was sweet as could be and did an amazing job of getting a line in with me barely feeling a thing. I was so grateful! He also was nice to the kids and brought some juice and stuff for them. From there on, my experience in the ER was less than awesome. My surgeon's nurse called me to tell me they wanted to admit me, so I had a bed up on the colorectal floor where I normally stayed. They wanted me to get a CT of my abdomen first though. By going in line as an emergency patient, I would get it a lot more quickly than as a regular patient from the main hospital. Once it was established that I was on fluids and would be getting a room, the decision was made to have my poor exhausted husband take the kids and go home so they all could sleep. Once they were gone, things got interesting in my "special" room.
A random nurse brought me a 900 ml container of oral contrast and a cup of ice and told me I had 20 minutes to drink the whole thing. I had two issues with this....first of all 900 ml of anything drank in 20 minutes wasn't going to do anything but flood my bag. Secondly, a big part of the reason I was in the ER was the inability to drink enough to keep myself hydrated. If I could possibly take in 900 ml of anything in 20 minutes, I probably wouldn't be there. So I rang my nurse while I started working on drinking the stuff. I asked him if he was sure I had to drink all of this stuff because I didn't have a colon. He looked at me like I must be from another planet, so I tried to explain that where normally someone would drink this and it would go into their stomach, then small intestine, then eventually large intestine....for me it was going to go into my stomach, small intestine, and then start dumping into the ostomy bag. There was no way I needed to drink that much and I wasn't sure I would physically be able to in the 20 minutes I was given. He left and I kept drinking as much as I could. He came back and told me I was supposed to drink all of it but that I had two hours to do it. Now I was even more confused. Anyone with an ostomy knows that if you drink something, in two hours it is going to be completely gone. I kept drinking because I knew I needed to get at least enough of this stuff in to get it coming out in the bag. Finally the unit doctor stopped by and I explained my predicament to him. He agreed with me that it made no sense to try to drink the whole thing. He encouraged me to drink as much as I could and when it started filling the bag to drink a little more then I could stop. This seemed reasonable to me. As it turned out, I drank about half of the contrast and my bag started filling pretty rapidly (had to empty it twice in a row). I did drink a little more after that and then the CT tech came. He was satisfied with the contrast going into the bag and agreed I never should have been given that much to drink in the first place. He was very nice and the CT process was quick and uneventful.
When he brought me back to my dungeon room, the tech told me he was going to tell my nurse I was back and they should be moving me pretty quickly since my test was done. It wasn't until he was gone and the big heavy door was closed that I realized the rails were up on both sides of the bed and my call light was nowhere to be found. I was stuck in the crazy room with no way to get help. For awhile I tried to just go to sleep, but the lights were really bright and I started to feel anxious about being stuck in there. I was also in a good amount of pain and wanted to find out if I could have something to help with that. I tried to just wait, but there is no sense of time passing in that room with the blank walls and no clock. I tried to call out a couple of times, but it became clear pretty quickly that nobody could hear me. The more that went on, the worse my anxiety got and the more pain I was feeling. I finally just got too upset and started screaming for help which made me cry at the same time. Finally, a random technician slowly opened the door to see what was going on. She must have decided pretty quickly that I wasn't in that room for the intended purpose because she saw I was sobbing and she came running in to calm me down. She got the call light for me and made sure the door was propped open when she went back out. My regular nurse eventually came and put some morphine in my IV and I was able to sleep for a little while. The door to the room stayed propped open with a chair until I was transferred out of there. I wouldn't let anyone close it after that!
I eventually got moved to my regular floor where they added IV antibiotics to my regimen. At this point I wasn't allowed to drink anything because they weren't sure if I would be going into the OR pending the results of the CT. My mouth was so dry that my lips were sticking to my teeth and I could barely speak. They finally agreed that I could have some sponge swabs dipped in water to wet my mouth. That helped quite a bit and at least let me answer questions when they came to talk to me. It turned out that I had a collection of fluid in my lower right abdomen, but they were initially unsure as to whether it was a leak from the j-pouch or an abscess. Eventually it was determined to be an abscess and they told me I would be having a drain placed using a CT scan guided needle. I was terrified to have this procedure done. I told the resident that I wanted to be asleep for it. He eventually sent my surgeon to see me and I cried while I begged him to make sure I didn't know what they were doing for this process. He told me I couldn't have general anesthesia for it, but he told me he would make sure I was taken care of. I was given 1 mg of Ativan prior to even leaving my hospital room. When I arrived in the room where they were going to do the procedure, there was an extra nurse there who's sole mission was to give me Versyd and give me more if I needed it. They gave me a shot of something in my stomach to numb me locally and got started. A few times throughout the procedure, I called out to that nurse to help me and she gave me more meds. I don't remember much about it except that they would work a bit, then push me back in the machine for pictures, then work some more. I remember seeing these large rods they were using at one point and feeling sick. I can also remember them drawing two large vials of yuck out of me and being able to smell the fluid in the room. I definitely had an infection in my body which is what I had been fighting so hard for almost a week. Finally, it was over and I was pretty groggy for awhile from the drugs.
I stayed in the hospital from Tuesday morning until Saturday. From the moment they drained the abscess, I never had another fever. It was amazing how much better I felt with that junk out of my body. At one point on Wednesday I attempted to go for a walk around the unit. It was all I could do to complete one lap. I wasn't dizzy, but my legs were so weak I felt like they were barely able to hold me up. My surgeon visited me at one point and told me I had depleted everything a body could deplete. My iron stores were gone, my muscles were withered away, and I was extremely dehydrated. I had no reserves. He tried to stress to me that my recovery was going to be slower going because of this set back. I am taking his advice to heart and really taking it easy now that I am home. I'm in no hurry. I can feel that this is going to take time.
I did come home with the drain still in place. That has been a bit of a nuisance, but nothing too horrible. Once a day I have to flush it with saline and empty the container that looks like a little hand grenade. It isn't collecting much now and I have an appointment for Monday to hopefully get it removed. The only issue I'm having is a lot of drainage around the insertion site, but that seems to be pretty common when I talk to other people who have had them. There is no increased pain, no redness, and no fever so I don't think it is getting infected or anything. I'm also on Flagyl and Cipro (antibiotics) for two weeks. My surgeon finally put me in Immodium to slow things down output wise since I was still struggling with that. I'm taking one before each meal and one at bedtime and it has things down around 900 ml/24 hours which is good.
So, it's been a rough couple of weeks but I finally feel like I'm going in the right direction again. I can't adequately explain how sick and run down I got....let's just say at the end it scared me and I don't scare too easily. Now I'm able to move about my house a bit and I can eat without feeling sick. It's just going to take more days of good eating and drinking and rest to get my strength built back up. Then we will go from there.