Friday, March 9, 2012

Post 29: 4 1/2 months past surgery - and my first complication. An abscess

What a roller coaster we have been on lately. I have been having quite a bit of pain in my surgery area the past several weeks where my internal JPouch was created and near my tail bone. It's been over 4 months since my surgery, so I thought I was in the clear of having any complications. Unfortunately, I didn't get out that easy. I've done a lot of research trying to figure out what has been causing my pain. It's not just an "ache, cramp, or discomfort" the doctors keep calling it. I asked them if I could possibly have an abscess in the surgery site since every symptom I described suggested that. Doctors kept telling me "you don't appear sick enough. You would look very sick and have a fever." I have heard all kinds of theories as to what my pain must be. I've been prescribed medicine for stomach cramps, I have been given narcotic pain killers. Nothing would help it. I went to the doctor 3 times complaining of this excruciating pain that comes and goes randomly. No one would take me seriously because I didn't "appear sick?!" 
I have been so upset because I felt like no one could help me figure out what was wrong with me. What am I supposed to do? Come into the doctor's office in my PJ's limping and crying with no makeup on for them to understand I am in pain? I do that privately in my home. Not in public. I started to get very angry because I felt like no one was listening to me. I know my body and I know something was wrong. It was also frustrating because I had a hard time describing this pain to my doctors. I think the only way to understand it is if you have experienced it yourself. As I researched on the internet, I found on a forum for people who have had JPouch surgery. One person described it as feeling like a stick was being shoved up her rear end into her stomach. Graphic, I know. But when I read that I thought, that's kind of a good way to describe it! Finally I found someone else who has felt this pain and understands! The pain comes and goes sometimes 5 minutes apart, sometimes several hours apart. It lasts for about 10 seconds then fades off.... It is INTENSE. It knocks the breath out of me, I can't speak or walk or sit during these 10 seconds. So, as you can imagine - it's a bit inconvenient and has been making it hard to function normally. This person ended up having an abscess, so I was convinced this must be what I had too.
Well, the pain just became so unbearable that I couldn't take it anymore. I demanded a CT scan of my pelvis and needed answers as to why I have been in so much pain. We waited at Shands all day so they could fit us in. I didn't want to leave until I had the scan done to give us an answer. Well, the CT scan showed that I DID in fact have an abscess!!! Finally I had an answer to why I have been in so much pain. The reason why I would get waves of pain is because the small intestine is VERY active. It had also ruptured and started to drain. It's good that it is draining on it's own because if it had not, I would have to go in for another surgery to put a drain in. The drain tube would come out of my hip and I would have to carry around a drain for a couple of weeks like I had after my first surgery. I DO NOT want that!!
My feet covered in painful blisters. Hand and Foot
syndrome at its worst from Chemotherapy (Xeloda)
I was then put on 2 antibiotics. Cipro and Flagyl. So I thought I was on my way to healing.

Nope! Not that easy. I tend to not do anything the easy way unfortunately.  I had a VERY BAD reaction from the chemo and antibiotics mixing. I became very sick, lethargic and could barely lift my head. I stayed home from work and just laid in bed all day. Phillip had to come home to help me eat and drink. The medicine combo caused my hand and foot syndrome to go CRAZY. The entire bottoms of my feet blistered up and I was in a lot of pain. This doesn't happen often, I guess my body and the medicine just didn't play nice together. My mom and sister came over to help us with Elise so Phillip could take care of me because I couldn't walk. Mom put lotion on my poor feet and I put bags of frozen peas on them to help with the burning and swelling from the blisters. I am so lucky to have such a wonderful family. I love them so much.
Phillip called the doctors and my oncologist told me to stop EVERYTHING. He said he wanted to give my body a chance to heal on it's own.  No antibiotics, no chemo. Just HEAL. So, I only made it to day 4 of my 4th round of chemo until my medicine was pulled. I am a little discouraged because I just want to get chemo over with. It's taking longer because of this complication. But my abscess will have to heal and my feet have to completely heal before I can start my chemo back. As of right now, I am trying to take it easy and focus on healing. I am starting to feel better and will update when I start my chemo back.

Oh! Forgot to write about another thing that happened during my CT scan.....We ended up having to put in a complaint about the technician who did my scan at Shands. I have never, ever had a bad experience at Shands until then.  While I was laying on the table for my scan, the technician felt the need to talk about someone she knew who had colon cancer and how that person died. She said "Oh, yeah I knew someone who was diagnosed with colon cancer. She just went in for vomiting and she died a year later!" She went on and on about this woman suffering and I ended up having a panic attack on the table during the scan.. There were also problems with getting the IV to go in. My veins kept being blown, and there was an issue with getting the contrast ink to go in my IV. The technician kept pulling and tugging at my IV to get the ink to go in. My arm muscles started spasming and I felt a burning sensation. She kept asking me "does it feel like it was in my veins or did it feel like it was leaking into my skin." WHAT? Um, you're supposed to know that! Not ME! Meanwhile, her assistant kept referring to my osotmy as a "tube coming out of my stomach."  By the time the scan was over  I was shaking so bad I had to take a Xanax when I got out of the room to calm down. It was awful. I hadn't had a panic attack like that in a while. We filed a complaint and they were extremely apologetic and will be handling it. Hopefully will hear something back about that soon. Other than that, I have had terrific care at Shands and I have had several CT scans in the past with no problems.

The lesson I learned from all of this is to be persistent with your doctors and do not give up until you get an answer! You know your body better than anyone else. If you feel like something is not right, get it checked out even if the doctors think you're just over reacting. In my situation, I knew something was wrong, and I was right! Now I am on my way to getting better. I also learned that I should never sit there and let a medical professional treat me poorly. If something like this ever happens again I will not sit there and take it. If a person can't show some compassion to their patent while doing their job, I will be better about telling them that it's not okay to treat me this way, walk out (if I am able!) and find someone who will.

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