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.

1997-2011

• 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.

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

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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.

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.