Thursday, September 29, 2011

Post 6: Surgeon Consultation

Yesterday (September 28th) Phillip and I met with my surgeon in Gainesville, Florida to discuss the procedure. At first we were told I might need 6 weeks of chemotherapy and radiation. The radiation would need to be done before my first surgery because it can ruin the JPouch that my surgeon will create for me. (The JPouch is created so I do not have to have a permanent colostomy bag). We were devistated because radiation to the pelvis meant we would more than likely never be able to have another child. Wednesday night I just held Elise forever and thanked God for her over and over. I was heartbroken that we may not be able to have another child, and I just wanted to soak it all in. Holding her, rocking her, the feeling of having my baby in my arms. I was an emotional wreck. It really hit us that we wanted another baby. But we are just so grateful for Elise and came to terms that if Elise was our only child, then we would be just fine. It was a miracle that we had her before all of this was discovered! She is the light of our life. We will be meeting with the oncologists tomorrow to discuss treatment.

Wednesday, September 21, 2011

Post 5: Telling co-workers and friends

Telling people has been really difficult for me. I let my principal and school nurse at school know. My family and two of my best friends. Phillip had to call and tell my family. I just couldn't bear to do it. I don't want to upset anybody. Seeing people upset tears me up. I know it's because they love me, and I am so grateful to have such strong support from my family and friends. But I just don't like seeing the saddness in their eyes. It makes my heart hurt. The only other person I told was my student teacher. I let her know what was going on too, since I would have to miss some days for doctor appointments. She has been wonderful and is doing a great job with my classes. I am so grateful to have her here because it really helps ease my mind to know my classes will be in good hands when I am out of school for surgery. Other than these people, I didn't want to tell anyone. Not yet....I guess I just wanted to go to work and have a normal day. I didn't want to constantly think about all of this. Sometimes I have a hard time wrapping my head around all of this. Sometimes it doesn't feel real. I am a private person and even this blog is kind of hard for me to write. It really does help me collect my thoughts though. My doctors and principal suggested I do it. And it has helped me sleep better when I can just get it all out. I haven't posted this blog yet or made it public. (It's mid September now) It's just for my eyes at the moment. When I go into surgery and I won't be at work for a little while, I will post it so if anyone has questions they can read if they want. That way I don't have to keep saying everything over again. My principal has been so supportive and basically helped me tell my co-workers. I just couldn't do it. I don't have the energy or the emotional strength to tell it over and over. I knew I had to let the cat out of the bag eventually. She sent out a wonderful & positive email to let the faculty know.......

"Please keep Meredith Klapp in your thoughts and prayers. 
Some of you might remember that last week of Meredith's pregnancy in May when she got so sick before baby Elise was born.  Thanks to her doctor, some tests were run that week that revealed a mass in her colon.  Further tests were ordered -- including a referral to Shands.  Meredith just recently found out that she has colon cancer.  Yesterday's appointment revealed that it is a Stage 2 cancer that is fully contained in the colon.  Meredith will be meeting with her surgeon at Shands next week to determine what her treatment options will be.  All we know right now is that she will have to have surgery to remove that area.
As you can well imagine, this has been a shock to Meredith and her family.  Meredith is not experiencing any symptoms and speaks with relief that because she had Elise, the doctors were able to find the mass.  Colon cancer is rare in someone so young -- but we feel very optimistic with her prognosis. 
Meredith, I know I speak for everyone at DES - You are loved and we will be there for you every single step of the way.  You have a HUGE family behind you and we will get through this together.
I often tell others about the amazing acts of kindness that I see day in and day out in the land of Dewar.  I have no doubt that Meredith will feel strengthened by our love and care for her during this difficult time".

This took a big weight off my shoulders. It was a bit overwhelming to have people coming up to me and saying they were sorry and that they were praying for me. I have never felt so much love. I am really feeling the prayers & I am so thankful for being surrounded by such wonderful people.

Tuesday, September 20, 2011

Post 4: Official diagnosis

Yesterday I had yet another procedure. I welcomed it though because the more opinions I get, the better. I went to Shands again to have and Endoscopic ultrasound and more in depth biopsies done. This procedure is done by using a scope with an ultrasound device on the end so they can see within the intestinal wall. The doctor and nurse were absolutely amazing. I really feel like I am in good hands at Shands. The nurse held my hand the whole time and the doctor explained everything as he was doing the procedure. I chose to do this procedure without sedation so I could look at what was going on, and the doctor could communicate with me what we saw. I won't lie and tell you it wasn't uncomfortable. But you don't feel the biopsies. The main discomfort comes when they puff air inside you to open the intestinal walls. This causes some cramping, but it was not unbearable. Ulcerative colitis symptoms I've had in the past hurt much worse. I kind of wondered how I was not an emotional wreck during the procedure, but bear in mind, I have had almost 5 months to process that I "might have colon cancer." No, it does not make it any easier. But a lot of my crying and the stages of grief you go through, like denial have already passed somewhat. Now I just want to hear it and move forward. It never really gets easier though. Especially when you hear the "C" word. The ultrasound showed it is stage T2 colon cancer. The GOOD news is there are no nodes. (T2-NO) which basically means it has not moved outside of the wall of the colon. This is REALLY good. (Here is a chart that explains stages. It really helped me understand the course of colon cancer a little better) This means as of right now it is contained and has not traveled to my lymph nodes or other organs. I am so grateful. I will meet with my surgeon September 28th to discuss my best treatment options. Surgery is inevitable, but they will decide if I need a full colectomy with a second J-pouch surgery, a partial resection, and they will discuss if chemotherapy is something I need to do.
Yesterday was a lot to take in. I was really overwhelmed and became pretty quiet after the procedure. I think I needed time to let it sink in. I think when it really hit me was when I was sitting in the recovery area. There was an older man sitting in a wheel chair. I guess he just had a routine colonoscopy done and he was still a little groggy from the anesthesia. He was waiting on the nurse to wheel him out to see his family. We joked a bit about how he was about to push the red "exit" button so he could wheel himself out of there and get some lunch. We were both starving since we hadn't eaten for a couple of days. He was a sweet man. He asked me if I was ok and I guess my eyes watered up a bit while I said "yeah, I'm alright." He asked me if I had cancer. I was kind of shocked at how straight forward he was, but I guess he was still a little drunk from his anesthesia wearing off. When I had to tell him yes, It really hit me. I told him to make sure he keeps up those routine colonoscopies. I think his wife made him. I told him how lucky I am to have found it early.
After that I was a bit down in the dumps. It was good to see Phillip again after the procedure. He hugged me in the hallway on our way out and I tried to muster up a happy face so I could walk through the hospital to the car. He gave me a little gift he found in the hospital giftshop while he waited for my procedure to be finished. They were these beautiful owl earrings. I love owls, so he knew it would cheer me up. We made it out to the parking lot ok, but I lost it for a few minutes when we sat in the car. It all just seemed so surreal, like I was making it all up. After a good cry, I was ok and we got some lunch. We were so ready to get home and see our little girl. She was at daycare all day, but we had my mom pick her up.
I really feel like our little girl saved my life. My Ulcerative colitis was doing so well. I really had no symptoms and thought I was in remission. However, the week before she was born I was so sick wich led them to do some tests. Everything worked out it a way for us to discover the cancer early. I was placed as "high risk" because I had a previous miscarriage and because of having UC. If I hadn't been sick right before Elise was born & my doctors didn't take extra precautions because I had a high risk pregnancy, we might not have found this in time. It could have sat there for another year or so and might have spread. Our little girl is a miracle and my angel. Having her saved my life. Even the nurse and doctors during the procedure said "yay for having the baby!" Elise, in combination of having these wonderful doctors, saved my life and I am eternally grateful.

Friday, September 16, 2011

Post 3: Doctor appointments & plan of action

A little overview of when my ulcerative colitis started, and what tests and procedures I've had this year so far that led to the reason why I need to have surgery.

  • Diagnosed with ulcerative colitis in 1997 at age 19 (although I know I had it when I was younger). Several colonoscopies over the past 14 years.(I will be 33 this year) Relatively symptom free while using the drug Asacol with a few controlable flare ups over the years.
  • 1997-2011 colonoscopy screenings every couple of years. Remained on Asacol.
April 2011 - Present
  • August - April: Pregnant with Elise (in remission with no colitis symptoms)
  • April 17th- 22nd: Suddenly sick and hospitalized for dehydration & vomiting. Since I was considered a "high risk pregnancy" I was seen regularly by a GI specialist during my pregnancy. Tests were scheduled to rule out a possible blockage or issue with my colitis.
  • April 21st : First Sigmoidoscopy while pregnant (discovered mysterious "lump")
  • April 23rd & 24th Vomiting suddenly stopped and I was eating again. Felt much better. 
  • April 26th : Elise is born! (water broke 2 weeks early)
  • May (6 weeks post partum) Second Sigmoidoscopy -lump is larger and bleeding. Low grade displasia is diagnosed after biopsies come back from pathology.
  • June - First CT scan in Valdosta. Nothing was found. My local GI doctor was not comfortable with the findings here, and wanted to send me to another specialist at Shands Hospital in Florida.
  • Put on steroid enemas and upped my dose of mesalamine for one month to get rid of as much inflammation as possible. This will allow better vision of the lump during the next colonoscopy.
  • July: Consultation with new specialist at Shands. Upped my dose of Mesalamine to 12 pills a day to get inflammation down even more.
  • August 15th: Colonoscopy and biopsies done at Shands Hospital. During colonoscopy the lump looks worse. Biopsies are done every few cm.
  • August 15th: Second CT Scan done immediately after colonoscopy at Shands.
  • CT scan comes back showing the growth is coming from the intestinal wall. They wanted to check all of the surrounding organs as well.
  • September 1st : Pathology results come back as showing High Grade Displasia and and a high probablility of colon cancer starting to form. Told I will need to meet with surgeon to discuss treatment options.
  • Lots of depression and crying this next week. Accepting it, reasearching it, trying to let it sink it. Realizing I am very lucky we found this early.
  • September 19th: Back to Shands Hospital for an Ensocsopic Ultrasound and more biopsies to look at the colon again before my surgeon consultation. This will check the growth of the lump and determine what stage of cancer I have. This will also tell us if anything has spread beyond the colon.
  • Diagnosed with T2 NO staged cancer based on ultrasound report. Still waiting for biopsy reports.
  • September 28th: Surgeon consultation at Shands to discuss my treatment/surgery options.
  • September 29th: Meet with oncologist at Shands.

Thursday, September 15, 2011

Post 2: My Pregnancy with UC and how we discovered a problem.


Elise, Happy and healthy!
I was always a bit worried about how being pregnant with UC would be. Research has shown that women who are in the middle of a flare up have a higher risk of complications and miscarriage. I wondered if I would be able to have a child. It did take us a little while to conceive, and we did have a miscarriage in April of 2010. It was devistating and one of the hardest things we went through. However, I can't imagine things not working out the way they did. We became pregnant again in August, 4 months later. I was so nervous and waited to tell everyone at work. I had to tell when I started to look like I was gaining weight. I guess I was afraid of it happening again. But now that we have Elise, I can't imagine having a different baby. We could not be more in love with this little girl. Of course we are heartbroken over our loss of our first baby. But if it had not happened, we would not have this little angel that is now part of our family. She is our whole world. It's like it was meant to be. I was very lucky that my colitis was under control and Elise was growing perfectly. My colitis during my pregnancy got even better. It practically went away when I was pregnant. I saw my gastro specialist regularly during my pregnancy. I was considered "high risk" since I had this condition.

While Elise was healthy, (we had a roller coaster of things showing up in ultrasounds that scared us to death, but that is another story & she turned out perfect) and that was all that mattered to me, I became very sick in other ways. I didn't have any UC problems that were obvious....BUT I did have vitamin absorption issues (that might have been caused by colitis) When you are pregnant, the baby will take what she needs from you. But sometimes if you're body is not able to replace it properly, you will definitely begin to feel the effects. Unfortunately my colon was not absorbing B12 or iron well. She was doing great, but I wasn't feeling so well. I was extremely tired. Like abnormally exhausted. I know you are going to be tired when you're pregnant, but I kept waiting for that 6/7 month mark where you "feel great and get your energy back." I could barely make it through the work day. I was still teaching art to PK-5th graders and at the end of the day I would just practically pass out. After blood tests I continued my regular prenatal vitamins, added iron supplements. I also went in for weekly B12 injections. Even though I was getting injections, I still never felt better because I guess it got used up as quickly as it went in.

My colitis symptoms were not really there. I was GREAT in that department.......Until one week before Elise was born. One morning about 3 weeks before my due date I could not keep anything down. I thought maybe I had a stomach bug. I couldn't eat or even drink water. It would come right back up. The next day, the same thing happened. Phillip called my nurse midwife and she said I needed to go to the emergency room. I was admitted for dehydration and they gave me something to make me stop vomiting. I was sent home after a few bags of IV fluid. The next morning it started again. I had to go back into the hospital for two nights. They tested me for viruses...nothing. No one could figure out why I couldn't keep ANYTHING down. We got my gastro specialist involved and he was worried I could possibly have a blockage. He didn't think I had a UC flare up because when you are pregnant, your immune system is supressed a bit and keeps colitis from flaring up. I lost 5 pounds that week and was so dehydrated despite all of my IV fluids.

My GI doctor admitted me for a sigmoidoscopy so he could take a look and see what was going on. This procedure is not really that horrible. I mean, yes, it really is very unpleasant and a bit uncomfortable (especially when you're pregnant!) but it's not the worst thing ever. You are not sedated for this like a colonoscopy because it's not as invasive. I will admit it is kind of weird laying there and being able to see your insides on a TV screen. The doctor talks to you the whole time while you lay there on your side. It's one of those awkward moments in life. We're chatting about the inside of my intestines while a tube is shoved up my rear end.....did I say awkward!? But my doctor here is AWESOME. He makes this strage situation as comfortable as possible. He really is patient with you and explains everything. I appreciate Dr. Fricker here in Valdosta and could not say enough great things about him. I really feel that his intuition and demand for further testing has saved my life.
During the sigmoidoscopy, we came across a large lump. We were all puzzled by what it was. Was it the baby resting on my intestines? Was it her elbow or foot causing a lump? What was this thing? The doctor took LOTS of biopsies. He had never seen anything quite like this.We couldn't do too much more because I was pregnant, so the doctor wanted to see me 6 weeks after Elise was born so we could perform another scope and take more biopsies to see if anything has changed.

So this is what caused my sickness.....Basically that week my intestines shut down and that is why I started vomiting. They were closed for business and they weren't letting any food in. It was a scary week. I missed a whole week of school and Doctor F. advised me to start my maternity leave early. I was just too sick to leave the house after I got home from the hospital. But then amazingly over the weekend, I was starving. I got up and cooked a huge breakfast, ate it all with no problems, then ate lunch, dinner....the next day the same. I was starving and able to eat! Monday labor started. Contractions all day, I felt better though and wanted to clean the house and go for a walk. It's like my body knew Elise was coming and it was preparing itself for the work I had ahead. My water broke Tuesday morning at 8:45 while I was in bed. We went to the hospital, and I had an amazingly perfect delivery. She was born at 5:15pm with no complications despite that she was 2 weeks early. I was back to normal and felt good. No more sickness. I thought for sure my next sigmoidoscopy would be great and I would be back to my normal self. However, unfortunately things went in a very different direction.

Thursday, September 8, 2011

Post 1: Living with Ulcerative Colitis

With my husband, Phillip at one of our favorite places -Jekyll Island
I was diagnosed with ulcerative colitis when I was 19 years old. I was sick as a child, but as my teenage years came to a close, my sickness became unbearable. If you are unfamiliar with what ulcerative colitis or chrohns disease is, here is a LINK that explains what happens when you have UC. I was pretty good at hiding it somehow. Any slumber parties or overnight trips, somehow I was "going out of town" or already "busy." Dinner and a movie? Forget that....It was movie first (and I missed a lot of it because of bathroom trips) then it was dinner with a speedy trip home before I got sick. I was always embarrassed and never told friends. Ulcerative colitis makes it quite difficult to function and do your day to day activities. It can at times cause depression because you miss out on things you wish you could do. I missed out on a lot of things as a child and teenager because I had to plan my day around where the bathroom was. If I there wasn't one near by (and I mean close enough to run to) I just couldn't participate. It's a very lonely disease and it's easy to feel sorry for yourself. I know I did sometimes, but you just kind of learn how to cope with it. I became a bit of a loner my first couple of years in college, and my parents and my best friends were basically the only ones who knew I had this disease. Trying for several years to figure out what was wrong with me as a child, my parents and I went from doctor to doctor being told I must have food allergies, irritable bowel, or that I was a nervous child that had stomach ulcers. None of this was the case. I finally was referred to a Gastrointestinal specialist when I was 19 after my hemoglobin was at a level 6. I wasn't just sick to my stomach anymore. I began losing significant amounts of blood. I was too exhausted to walk to class, by lips and nails were purple (which I covered up with lipstick and nail polish). I ended up in the hospital having an emergency colonoscopy and endoscopy to see why I was losing so much blood. I was diagnosed with UC and was immediately put on Asacol (mesalimine) and an iron supplement.  This medicine changed my whole life. I was so very happy to have finally figured out why I was so sick. I thought, GREAT! I can pop a few pills and all my problems would go away! For the most part, my medicine has worked great for me. I have been on it for almost 14 years with very few flare-ups. I have been very grateful that I have been able to live a normal and healthy life for many years now. I had routine colonoscopies every couple of years to check everything. All was well, just a little "mild colitis." I finished college, traveled over seas countless times, became a runner, art teacher, photographer.....all of the things I wanted to do I could do now!! I ended up meeting the love of my life, getting married to my wonderful husband, Phillip. We even decided to start a family. Phillip has never really seen me get sick and when we were dating he never even knew I had UC. (Except when I tried a new medicine - it did not work for me and went back to my old ways. I was terribly ill. He understood the extremes of the condition then. But once I went back to my old meds I got better.) I had a healthy pregnancy (I was sick, but nothing out of the normal "pregnancy stuff"). We had a beautiful healthy baby girl. Life was amazing! Life is still great, but now we have this bump in the road that we weren't expecting.....Fighting colon cancer.