Friday, March 23, 2012

Post 30: I get knocked down...but I get up again!

Waiting in the ER waiting room.
Unfortunately, this ER trip gave us no answers and we ended
up having to drive to Shands in Gainesville shortly after this so
I could be admitted into the hospital.  
Last week was just plain horrible. There's no other way to describe it. There is a happy ending to my story though! I missed the entire week of work because I had to be admitted into Shands Hospital for complications. Phillip and I left Elise with my mom while I was hospitalized. It was so difficult leaving her again, and I found myself crying so much in the hospital because I missed her terribly.

Just to give you a quick run down...... Last week (March 11-16th) I was in and out of two hospitals, had a CT scan, blood cultures, stool samples taken, abdomen X-Rays, more blood tests, a MRI of my abdomen & pelvis, Potassium infusions, countless bags of IV fluids, IV antibiotics, vital signs taken a billion times, met with surgeons, lots of doctors and medical students crowded around me observing the doctors.....let's just say I felt like I was on an episode of "House" with a giant team of doctors, oncologists and surgeons trying to figure out what was wrong with me. Even though the abscess showed up on my CT scan, I still never ran a fever, my blood work never showed an infection either. But I was extremely sick and in a lot of pain. The doctors were baffled and this time they weren't going to let me leave the hospital until we had this problem solved.

To make a long story short, my abscess made me sick. VERY sick. I started feeling ill on March the 10th. Just really under the weather and nauseous......Then the next morning (March 11th) the diarrhea (profuse - like a full ostomy bag every 30-min to an hour) started. I started blacking out and when I would stand up my heart rate would shoot up to 117 bpm. This lasted all day and then the vomiting began. I became severely dehydrated and no medications would even begin to stop it. I was taken to the ER in Valdosta (We were there for 12 hours!!! With no answers!! It was not a good experience, but that is a whole other story) I was given fluids, had a CT scan, and once the doctor saw my completely re-arranged insides on the pictures - I think they were confused and said "I should go see my surgeon". Great.

So I was admitted into Shands in Gainesville until they could figure out why I was so sick and why I was still in excruciating amounts of pain from this abscess.The doctors said they would not discharge me until the diarrhea stopped. After a LOT of IV fluids and IV antibiotics, I am happy to say I began to feel somewhat like a human being again by Friday the16th. I was hooked up to an IV to get continuous fluids for a few days. After the antibiotics kicked in the diarrhea suddenly stopped and my pain went away. This is the first time in almost a year I have not been in some kind of pain. (First time in almost 3 months I have had relief from this abscess.) I am still on oral antibiotics this week, but I was feeling so much better that I was able to go to work all week! I can not start my chemo back until my antibiotics are done. Don't want a reaction like I had the last time. (Described in my last post)

We were happy to finally have some answers as to why I was in so much pain. My oncologist explained to me that my digestive tract was in so much distress from everything (abscess, surgery, antibiotics, chemo, not having a colon doesn't help either!) it was causing severe spasms in my stomach and intestines. When I would have these spasms it would squeeze the abscess causing insane amounts of pain. The vomiting and constant diarrhea was evidently caused by the infection. Chemo can sometimes mask the signs of an infection. I am so happy to be feeling better!!! The antibiotics still make me feel yucky and upset my stomach a bit, but I will take that any day over what I was feeling before. I should be finished with my antibiotics in about a week and then I can start my 4th round of chemo over. I am happy to be home and back together as a family & feeling pretty decent! We missed our baby girl! Elise is doing great. She's trying to learn how to walk and will be 11 months old next week! I'm excited to have a good, pain free weekend with my family!

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.

Friday, March 2, 2012

Post 28: March is Colon Cancer Awareness Month

Dress in Blue Day For a Future Free of Colon Cancer! Friday, March 2, 2012

Getting a colonoscopy is something a lot of people put off due to being embarrassed & uncomfortable with the idea, or because they are scared of the procedure or preparation. Some even avoid colonoscopies because they are afraid of what might be found. But colon cancer is one cancer that is preventable with early and regular screening. Screening can catch polyps before they become cancerous, and when caught early, colon cancer can be cured.
It is recommended that everyone over 50 begin their screenings regularly. The procedure is quick, not painful and most insurance covers it. However, if colon cancer runs in your family OR you have any of the following symptoms it is important to get screened no matter what your age. My screenings began when I was 19 years old because I developed ulcerative colitis which increased my risk of developing colon cancer.

The most common symptom of colon cancer is having no symptom at all, which is why regular screening is critical. If you experience any of the following symptoms, speak to your doctor about scheduling a screening, especially if you have a personal or family history of cancer or colon polyps:
  • A change in bowel habits such as diarrhea, constipation, or narrowing of the stool that lasts for more than a few days
  • Rectal bleeding or blood in the stool
  • Cramping or stomach pain
  • Feeling bloated or full in the stomach
  • Gas pains
  • Weakness and fatigue
  • Decreased appetite
  • Vomiting
  • Losing weight when you are not trying to
The symptoms of colon cancer may resemble other conditions like infections, hemorrhoids and inflammatory bowel disease, so talk to your doctor if you are experiencing any of these symptoms.

People who are at risk are stereotypically obese and sedentary individuals, or people who smoke & eat a diet high in fat. However, this is NOT always the case!!! I eat healthy and have always maintained a healthy weight. Before my surgery, I was very active. I ran and worked out regularly. I have never smoked a cigarette in my life. I don't know anyone in my family who had ulcerative colitis, I think a distant relative might have had colon cancer. Other than my UC which was well controlled by medication I was very healthy.  So as you can see, colon cancer does not discriminate. That is why it is so important to listen to your body and get checked out if something is not right.
Since I had ulcerative colitis, my screenings were performed every couple of years. None of my screenings showed any signs of colon cancer until I was 32. During my pregnancy, the estrogen caused my tumor to show up. Regular screenings and being pregnant actually SAVED MY LIFE. If I had not been screened when I noticed unusual symptoms, and waited even for another 6, months my cancer would have spread. (To read about how I knew something wasn't right, read HERE about how we found my tumor.)

Don't ever ignore any symptoms that don't seem normal for you. Just go and get checked. If everything comes out fine, that is great!! If not, be grateful the problem was found and you can get on a treatment plan that will help you get well or possibly save your life. Don't put it off anymore!!!

For more information on Colon Cancer, and to find out if you are at risk and what to do to get screened:  Click HERE.

If you ever have any questions about getting a colonoscopy and are embarrassed to ask, please don't ever hesitate to send me an email at: I would be more than happy to talk with you about any questions you might have.