Sunday, September 20, 2009
Keeping my fingers crossed.
I ended up back in the hospital again, but I think there's a solution this time. The doctor here seems to think I am having adrenal suppression. This is the first diagnosis that has really made sense since I started feeling sick in July. He thinks it's because I've been on prednisone so long that my adrenal glands aren't functioning properly. So, the good news is that it seems to be a relatively easy fix. The other good part is that all of my symptoms fit this diagnosis and my doctor told me that he's pretty confident this is what's wrong. I haven't had a doctor be so sure about what's wrong with me since this all started. I'm feeling much more optimistic that we've got it figured out this time. THAT and isn't not really related to my surgery or ileostomy output. It's all related to the prednisone. My diet is fine, I'm taking in enough fluids, and everything else has been successful. They are going to MRI my liver again and try to get a little more information about the mass on my liver, but that's all unrelated to my UC also.
Wednesday, September 16, 2009
OKAY, sooo here's what happened... and what's currently happening.
I had my takedown surgery early because of my ileostomy output, but they were also supposed to try to take a took at my liver while they were performing the laproscopic surgery. So, while I was in the hospital the GI doctor who was taking care of me contacted my surgeon. They called and told me if I could get on a flight to Phoenix that day then they would operate on me the following day. Well, needless to say I was on a flight that afternoon PICC line still in my arm and all. I flew Reno to Las Vegas and Las Vegas into Phoenix.
When I got to Phoenix I was allowed to eat and drink up until midnight and they wanted me to check in to the hospital through the emergency room when I arrived. I waited until midnight so I could still eat and drink and I wanted to shower that night too. Travelling wore me out and by the time I got to my room at the Mayo Clinic I was just ready for bed. They told me that my surgery would be the following day at 2 PM. So, the thing that sucked was I wasn't allowed to eat or drink anything at all. I was just allowed to use these spongey swabs to moisten my mouth.
The day of the surgery they did a test to see if there is any leaking coming from the J-pouch. That part sucked really bad. They pretty much stick this tube in your bottom and fluid goes inside and they ask you to like roll on to your side while you have this thing coming out your butt. It was REALLY uncomfortable for me. It only lasted a few minutes, but it hurt and was really awkward. I hung out a couple more hours and my surgery was a little bit delayed because my scheduled operating room ended up being used by someone who had an emergency transplant. They prepped me as usual... big Bair Hugger blanket, totally awesome socks that help circulation, medications, pregnancy test (even though they were operating regardless since it was an emergency situation), heparin shot. I don't remember going into the operating room this time. I was out before we got there which actually kind of weirds me out because I don't remember them giving me that medication, but oh well.
I vaguely remember waking up.. I know I was NOT happy and in a lot of pain. I think I woke up before I made it to the recover room. They were giving me lots of pain medicine in recovery. I hung out there for a while then they eventually took me back to my room. This time I was in a lot more pain than after my first surgery. I think that's because I was feeling pretty good when I went in for my first surgery and this time I was pretty weak and sick. I definitely used the pain button. They still gave me a lot of dilaudid after they took the pain button away. They tried to just give me the vicodin tabs by mouth and torodol, but they did nothing for me. I even ended up leaving the hospital with oral tabs of dilaudid instead. I have used them all to date. I got up and walked around the day after my surgery. My tummy was so bubbly and still is. I was having a lot of gas pain in the hospital. Like I just wanted to pass gas and I couldn't. It was really uncomfortable too and pain killers didn't really help.
I passed stool I think the 2nd day after surgery. It wasn't so bad. It kind of felt like some of the leakage that occured while I had the ileo bag. I just felt like I had to pass gas and couldn't. Passing stool really wasn't so awful, just very liquidy. I didn't have any butt burn or anything up until I got home to Las Vegas. I would say about 3-4 days after I got home the butt burn took over. More about that in a second. I left the hospital on the 4th day after surgery and stayed in Phoenix one extra day. The night in the hotel was nice because I finally got some sleep. Then the next day we took an early flight back to Las Vegas. I was expecting to go into complete panic mode not having access to a bathroom again, but it's surprisingly different. If I have to go to the bathroom, the sense is present, but I don't have to go right away. I know I need to go, but I can wait a little while. I don't panic anymore. It's incredible.
So, I get home and the butt burn begins. It usually only happens when I am sleeping and have to get up in the middle of the night to go. I feel like my ass in on fire. I've used a barrier cream they gave me at the hospital, A&D ointment, and Desitin cream so far. Desitin works the best so far. I'm still experimenting. I've found that watching TV or something when it's happening is a good distraction from it. It's just frustrating for me because it's happening at like 3-4 in the morning and my sleeping pattern is all messed up. I'm not going to the bathroom all that frequently. I would say less than 10 times per day. There's some leakage sometimes so I've been wearing maxipads for the time being just so I'm not having to constantly change clothes.
Other than the butt burn, I'm a little sore still. I accidentally opened my incision a little bit in my sleep, so that sucked. The worst thing for me is that I am freaking exhausted ALL THE TIME. My appetite has decreased and I have been a little nauseous just the in the last few days. I'm right in middle of moving and can't do much of anything. I miss my boyfriend like crazy so I'm an emotional wreck on top of recovering from surgery and drowning in medical bill stress. Still, the surgery has been 100% worth it. Life just sucks right now, but it will get better.
When I got to Phoenix I was allowed to eat and drink up until midnight and they wanted me to check in to the hospital through the emergency room when I arrived. I waited until midnight so I could still eat and drink and I wanted to shower that night too. Travelling wore me out and by the time I got to my room at the Mayo Clinic I was just ready for bed. They told me that my surgery would be the following day at 2 PM. So, the thing that sucked was I wasn't allowed to eat or drink anything at all. I was just allowed to use these spongey swabs to moisten my mouth.
The day of the surgery they did a test to see if there is any leaking coming from the J-pouch. That part sucked really bad. They pretty much stick this tube in your bottom and fluid goes inside and they ask you to like roll on to your side while you have this thing coming out your butt. It was REALLY uncomfortable for me. It only lasted a few minutes, but it hurt and was really awkward. I hung out a couple more hours and my surgery was a little bit delayed because my scheduled operating room ended up being used by someone who had an emergency transplant. They prepped me as usual... big Bair Hugger blanket, totally awesome socks that help circulation, medications, pregnancy test (even though they were operating regardless since it was an emergency situation), heparin shot. I don't remember going into the operating room this time. I was out before we got there which actually kind of weirds me out because I don't remember them giving me that medication, but oh well.
I vaguely remember waking up.. I know I was NOT happy and in a lot of pain. I think I woke up before I made it to the recover room. They were giving me lots of pain medicine in recovery. I hung out there for a while then they eventually took me back to my room. This time I was in a lot more pain than after my first surgery. I think that's because I was feeling pretty good when I went in for my first surgery and this time I was pretty weak and sick. I definitely used the pain button. They still gave me a lot of dilaudid after they took the pain button away. They tried to just give me the vicodin tabs by mouth and torodol, but they did nothing for me. I even ended up leaving the hospital with oral tabs of dilaudid instead. I have used them all to date. I got up and walked around the day after my surgery. My tummy was so bubbly and still is. I was having a lot of gas pain in the hospital. Like I just wanted to pass gas and I couldn't. It was really uncomfortable too and pain killers didn't really help.
I passed stool I think the 2nd day after surgery. It wasn't so bad. It kind of felt like some of the leakage that occured while I had the ileo bag. I just felt like I had to pass gas and couldn't. Passing stool really wasn't so awful, just very liquidy. I didn't have any butt burn or anything up until I got home to Las Vegas. I would say about 3-4 days after I got home the butt burn took over. More about that in a second. I left the hospital on the 4th day after surgery and stayed in Phoenix one extra day. The night in the hotel was nice because I finally got some sleep. Then the next day we took an early flight back to Las Vegas. I was expecting to go into complete panic mode not having access to a bathroom again, but it's surprisingly different. If I have to go to the bathroom, the sense is present, but I don't have to go right away. I know I need to go, but I can wait a little while. I don't panic anymore. It's incredible.
So, I get home and the butt burn begins. It usually only happens when I am sleeping and have to get up in the middle of the night to go. I feel like my ass in on fire. I've used a barrier cream they gave me at the hospital, A&D ointment, and Desitin cream so far. Desitin works the best so far. I'm still experimenting. I've found that watching TV or something when it's happening is a good distraction from it. It's just frustrating for me because it's happening at like 3-4 in the morning and my sleeping pattern is all messed up. I'm not going to the bathroom all that frequently. I would say less than 10 times per day. There's some leakage sometimes so I've been wearing maxipads for the time being just so I'm not having to constantly change clothes.
Other than the butt burn, I'm a little sore still. I accidentally opened my incision a little bit in my sleep, so that sucked. The worst thing for me is that I am freaking exhausted ALL THE TIME. My appetite has decreased and I have been a little nauseous just the in the last few days. I'm right in middle of moving and can't do much of anything. I miss my boyfriend like crazy so I'm an emotional wreck on top of recovering from surgery and drowning in medical bill stress. Still, the surgery has been 100% worth it. Life just sucks right now, but it will get better.
Saturday, September 5, 2009
Takedown.. Earlier than Anticipated...
So, I had my takedown on Thursday. It was kind of a last minute emergency situation because I had such high ileostomy output. They may discharge me out of the Mayo Clinic tomorrow, but I don't know that I'm ready to leave yet. I'm still pretty sore. The pouch is working and everything. I'm not having too much discomfort when using the restroom, just sore from where they closed off the ileostomy. It's nice not having the ileostomy bag anymore, but to be honest it's kind of like trading some crappy things for other crappy things. It will get better, I just don't feel too well and the pain killers aren't helping too much at all. I'm give more details later.
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