Tuesday, December 20, 2011

Post 22: Chemotherapy: 8 weeks Post Surgery

It's been 8 weeks since my JPouch surgery and I'm happy to say I am feeling pretty good! I feel more like myself than I have in the past 2 months. My strength is coming back and I am becoming a lot more comfortable with having an ostomy. I am able to pick up Elise and go for walks with her. It's been wonderful being able to spend time with my family while I am feeling well. I had an appointment with my oncologist yesterday. Last week we got the results from my OncotypeDX test. He gave us a call and spoke with us both on speaker phone. He explained that the cancer cells were unfortunately a lot more aggressive than they hoped and the test revealed a slightly higher re-occurrance rate. Before we knew this, we decided to forego chemo hoping they got it all with surgery. But now hearing that the cancer was more aggressive, I don't want to mess around. We don't want to risk the chance that there may have been the possiblity that the cancer cells escaped the colon wall. Maybe it didn't, but it's not something we can see at this point. Cancer cells are tiny and don't show up until there are lots of them and it has grown significantly. This isn't a risk I want to take. We thought aobut it, listed all of the pros and cons. I came to the conclusion that if, God forbid the cancer DID come back, I want to know that I did everything I possibly could. If it did ever come back and I had not done chemo, I would forever blame myself. I want to do everything I can to live a long happy life with Phillip and Elise. I have a reason to be here. I am Elise's mommy and I want to grow old with Phillip and see my daughter grow up. So we made our decision, went and saw the oncologist yesterday and we are getting started soon. My doctor is amazing and he explained everything so thoroughly. I will have to start treatment this week and I will see the doctor every 3 weeks to get my blood drawn and to monitor my health during treatment. The side effects can vary from person to person. I know it it's going to be tough, but I am hoping and praying for the best. I know it is up to me to stay positive and know we will get through this. Treatment will last 6 months. I will be taking a chemotherapy drug called Xeloda in a pill form. The pills are taken in the morning and evening every day for 3 weeks, then have one off week. I will repeat this cycle 6 times. Unfortunately I'll have to wait 4-6 weeks after I complete chemo to have my second surgery, so I will have to hang out with this ostomy bag for a while longer. They said I need to have the drug completely out of my system before I have surgery because it can weaken my immune system and my ability to heal. Sure, I'm bummed about having my ostomy for another 7-8 months (that will put me at having one for almost a year) but I know it will be ok. Now that we figured out all of that, I am not in anymore pain and I feel like it will be fine. Treatments will start this week. Thanks for all of your thoughts and prayers. I will keep you all posted on how I am doing and how I am tolerating therapy. Love you all & Merry Christmas.

Wednesday, December 14, 2011

Post 21: Finally feeling like myself again! (minus an organ) 7 Weeks Post Op.


Diagram B is the current state I am in after my first surgery.
Total colectomy and JPouch procedure complete.
Now I am healing and waiting on my second surgery
(Diagram C)so I will no longer need an Ileostomy.
 Im so happy to say things are looking up this week. Last week I took a turn for the worse and was feeling faint and exhausted mainly due to dehydration. Since I don't have a colon anymore (and the colon's responsibility is to absorb water) I added 3 things to my diet that have helped me tremendously. I feel like a new person this week!
Along with drinking a gallon of water a day I have added:
  • 3 small cups of gatoraide throughout the day (to replenish electrolytes)
  • Salty snacks like pretzels (helps keep my salt levels up so I can retain water)
  • Immodium pills before breakfast, and before bedtime (slows things down so my small intestine can learn how to absorb water & nutrients better)
  • I also STAY AWAY from sugar, fatty foods or anything fried. This can and cause watery stools = dehydration. It's just not worth it. I look at a cookie or something fried, and sure it looks good. But the way I feel after I eat it makes it not worth it to me.It's not good for me anyways.  
Right now I am on a pretty restricted diet. I can't have any raw fruits or vegetables, anything with skin, no nuts or seeds, or whole grain. I pretty much stick with grilled chicken, rice, mashed potatoes, applesauce, banannas....things that are pretty bland. As things improve, I can slowly start to add more foods.
Here is a list of good and bad foods for people with an ostomy.

I have been well enough to go back to work and I've been able to stay the whole day! It's been great to get out of the house and see everyone. I missed my co-workers and students so much. I was also able to go to target with Phillip and Elise last night for a little while. I was pretty beat, but I am just so excited to be able to get back in the swing of things. Phillip grabbed my hand in the car and said he was so happy because he felt like he was finally getting his wife back. He said I had my spark back and this made me so happy. It's been a long road and I wondered when I would ever feel like myself again. So I have to say, 7 weeks out of surgery I am feeling pretty good!

Post 20: The stress of applying an ostomy pouch. (we finally got it right!!!)

This is a long post, but I really wanted to list some information about learning how to get my ostomy bag applied correctly. In some of my previous blog posts, this was one of my main complaints. It is really traumatic physically and emotionally when you come home & see yourself in the mirror with a bag attached to your stomach. And then you have to learn how to change it, clean it. And how to do it correctly. If you or a loved one is ever faced with this, I strongly encourage you see a certified ostomy nurse who will be patient and gentle with you, and who can explain it every step of the way. Everyone is different, everyone has a different size and shape to their stoma. What will work for one person will not work for another. There are so many products and types of bags out there. It's really overwhelming. I am listing below what works for ME. Hopefully it will help someone.

If you are reading this and are confused about what a Stoma is. Click on this link to see a picture. WARNING, it is graphic. This is NOT my stoma, but a link to a blog of a brave individual who blogs about his JPouch surgery experience as well. I am not brave enough to photograph mine yet and put it on here. Maybe some day I will. I have even thought about maybe doing an instructional video someday....we will see. I will have to get really brave! I am really proud to say I have come very far with this whole process. When I first got home I could not look at myself in the mirror. I would cry holding a pillow over my face, and my husband had to empty it and change it for me while I layed on the bed because I couldn't do it. My skin was also breaking down around the stoma. It was just completely raw because we couldn't get it to fit properly. I was in a tremendous amount of pain and it took us almost an hour to get it applied properly.  Now I am happy to say I can change it myself looking in the bathroom mirror in 5 minutes flat with little to no discomfort. I can look at it and it doesn't bother me anymore. It doesn't define who I am. I just realize that I am still ME, the only difference is how I go to the bathroom. Now that I am not in pain I am enjoying my life again with my family.
Bags, pouches, appliances....whatever you choose to call them, come in many shapes and sizes. The trick is to find the right one for you and your skin type. People with an ileostomy need to wear a bag on a full time basis. This is because you cannot control when the stoma (small part of the small intestine sticking outside of the body) is going to work - in fact it will probably work 95% of the time! It is therefore, essential that you find an appliance system which suits both your skin type and your lifestyle.
You will have the choice of either a one- or a two-piece system. There is no better system - it is simply a matter of what you prefer. Both types are drainable, meaning that you can undo the tie or clip at the bottom of the pouch and empty it as needed.

1 piece systems
A One-Piece System
A one-piece system is just that - one-piece. It means that the wafer (the part that attaches the bag to your skin) and the bag itself, are all in one and cannot be pulled apart. You just stick the opening over your stoma. You have to make sure you correctly measure your stoma and the bag opening so they match. You will change the whole appliance about once or twice a week.
 




2 piece systems
Two-piece Systems (What I use) means that the wafer and the bag are separate and are joined together by what is commonly referred to as a "tupperware-type ring" on the wafer. The wafer is designed to stay put for a while and the only thing that you will need to change on most occasions is the bag itself - just attach the new bag to the wafer. I like to be able to change the bag when I feel like it is getting gross without having to change the wafer/seal. Neither one is better, It's really just what you prefer. I also like to put my wafer on seperately so I can see that I have a good seal on my skin and see that it is fitting properly, then I like to snap the bag on. Seeing the wafer seal on my skin just makes me feel better knowing I applied it correctly.

After MANY trials and errors, below are the products that work great for me:
This is how I start. I lay out all of the materials I need on my bathroom counter. Yes the marshmallows are supposed to be there :) I will explain those in a minute.

  • convex moldable wafer
  • Eakin seal
  • scissors (to cut the eakin seal)
  • adhesive remover wipe
  • skin protectant barrier wipe
  • Rags-one dry, one wet 
  • Stomahesive protective powder
  • pouch with filter
  • gauze (to put over the stoma just in case it gets active!)
  • marshmallows

      Step 1: While I lay everything out, open packages etc.,  I eat 4-5 small handfulls of marshmallows. They work amazingly well at slowing down the stoma!!! The stoma is constantly active, so eating these slows everything down and gives me a good 5-10 minutes without anything coming out. I also have to find the right time of day to change my appliance. What works for me is about 5pm (after work & before dinner). This seems to be when my stoma is least active. For some people it may be in the morning when they wake up. You just have to find the best time for you. After I eat my marshmallows, I close them up and put them away and get ready to begin.
      Step 2: I place the dry rag in the waist band of my pants. It protects my pants from getting dirty, but also works as a handy "towel rack" so I can have it there when I need to wipe something away.
      Step 3: I use an adhesive remover wipe to remove the old wafer & bag. My skin is super sensitive, so I can't just pull the thing off. OUCH!!! The adhesive remover wipes work great to help lift the wafer off my skin without damaging it. You just have to make sure you wipe your skin well with a warm wet rag afterwards to remove any residue. If it is left on, it can prevent the new wafer from sticking.
      Step 4: After the bag/wafer is removed, I use the wet towel to wipe around my stoma. I clean off any adhesive remover and try to remove any old wafer residue. I inspect my skin around the stoma to make sure it is not raw or irritated. I make sure my stomach is clean and ready for the new wafer. Use water ONLY. Soaps can cause the new wafer to not stick. I throw the old bag/wafer in a plastic grocery bag, tie it up and throw it out. By now those marshmallows are working great! *My skin used to be AWFUL. It was raw and bleeding. This was because I did not have a good seal around my stoma. The stool that comes out of the stoma is very acidic and will burn your skin. That is why it is so important to get a good seal. If any stool leaks under the wafer, the skin will become severely irritated. If it is burning, the wafer needs to be changed. It means there is a leak.
      Step 5: Stomahesive powder. This stuff is a lifesaver. After my skin is cleaned with the rag. I pour this stuff all around my stoma. It will stick to any raw, weepy skin and create a healing "scab." The powder really heals and helps protect the irritated skin. I really pour this stuff on and then pat it into the skin. This is where that towel tucked in your pants waistband comes in handy. I use the towel to gently brush away any excess.
      Step 6: Pat the skin barrier wipe over the powder to "seal it in." Then wipe the protective wipe all over your stomach where the wafer will stick. This will help protect your skin from the adhesive. It is also sticky so it helps the appliance stick better without irritating your skin so much. 
      Step 7: Eakin Seal. I use an eakin seal to give my skin just a little more protection. This is a moldable ring like a puddy. You can make it fit snugly around the stoma. I actually use scissors and cut it in half, then press it together to make the hole in the middle smaller. I have a small stoma (about 7/8 of an inch) so I need to make the opening as small as I can. If the stoma were larger, I would just stretch the opening to fit. I then place this around my stoma. It will stick to your fingers, but if you use the wet rag to pat it down, it will stick to your stomach and not to the wet rag.
         
        Step 8: Applying the wafer. I now use a "convex" wafer meaning the opening curves in to help make my stoma stick out more. Since I have a temporary Ileostomy, my stoma does not stick out as far as a permanent one would. This sometimes causes a problem because the stool can leak under the wafer since it is relatively flat to the skin. But by getting a convex design, it pushes down on my skin and helps to push the stoma out a bit. Here is a picture of a regular flat wafer (top) and a convex wafer. (bottom) *On of the main problems is the flat wafer's opening was too large. I had the wrong size and it was causing stool to touch my skin! = Pain!! The bottom wafer has a small opening that I can mold to fit my stoma. The wafer is puddy-like and soft. With the warmth of your fingers, you can mold it to the exact size of the stoma. I stick the wafer right on top of the Eakin seal and use my fingers to press the opening around the stoma. The red stoma sticks out of that little hole. I then peel the paper backing off of the sides and stick that to my skin.
        Filter on bag
        Step 9: Snap on the bag.  Snap the bag on to the wafer like a tupper ware container. I use a bag that has a filter at the top. This lets out any trapped air/gas and helps keep the bag flat. It does not smell at all. I really like these bags too, because you can not see through them. When you are in the hospital you will have a clear bag so the doctors can see your output. But I was sick of looking at it, so I got the tan colored bags. When you shower or bathe, you have to put a little sticker (supplied by the company) over the filter so water will not ruin it. If the filter gets wet, it will not work anymore and the bag will fill up with air like a baloon. Not very attractive under clothes!
        *Right after surgery, you might want to snap the bag on before you apply the wafer. This is so you don't have to push on your abdomen. After a few weeks when you are not as sore, you can snap the bag on afterwards.  It helps to stand up and tighten your abdominal muscles so you can press it on. It also helps to put a little patroleum jelly on the ring to help it snap on easier.
        Finished! I then sit in a chair and put a little heating pad (like a rice pack) that is warmed just slightly over my appliance. Don't make it too hot. This isn't good for your stoma. The warm heating pad helps the wafer mold & adhere to my skin. Since I have been doing this whole process listed above, I haven't had any leaks and my skin has healed!!! This makes me one happy girl!!!
        Yes, it is a long process. It used to take us an hour, then it would leak. I would be in pain and crying from frustration. One night we had to change it twice and I was an enotional wreck. But it DOES get easier over time. Now I can do it easily all by myself. My skin around my stoma looks great and I can move on with my life pain free. This has brought me so much confidence. I have realized that if for some reason in the future, If I ever had problems with my JPouch and had to go back to this, it would be ok. It's not pleasant, but it does not define me. It's just part of life now. I have a great life and I am excited to live it. This will not get in my way!

      Thursday, December 8, 2011

      Post 19: Update 6 weeks after surgery:

      This week has been a tough week. I was just starting to feel a little better. Wanting to get out a little. Mostly Phillip will just drive us around a bit to get me out of the house. Sometimes I can walk around the store for a little while. My ostomy was feeling much better. I was optimistic that things were looking up. Unfortunately, I've had a very rough week. Over the weekend I had plans to go out to dinner with my best friends. This would be the first time out at a restaurant in a long time and I was excited to see my friends. Unfortunately I was extremely dizzy and blacking out and couldn't go. I also was planning on starting back to work this week, and I am extremely upset I haven't been able to do that either. All week, when I would stand up my heart would pound and I couln't see for a few seconds. I was having a hard time eating anything and I really had to force myself to eat or drink. I have been working hard following a special diet to get my output in my ostomy bag to thicken up. Since the primary source of your colon is to absorb water, and now that I no longer have a colon, I have to eat very carefully and choose foods that will not cause liquid or watery stools. No matter what I did, my food was going through me as fast as I ate it and it was turning into pure liquid. I went to the doctor and they did some bloodwork. It all came back within normal ranges, so we think the reason I was blacking out was due to low blood volume. Meaning my body has not been absorbing the water I've been taking in, causing me to get really dehydrated. I was given IV fluids. I still don't know what caused the watery output. I thought I was doing everything right. I guess my body is still adjusting and my small intestine is still learning how to take on it's new role. It is having to learn how to absorb liquid like my colon once did. I went to the doctor Monday and I still don't feel great today, 3 days later.
      I am still extremely fatigued and I still feel my heart working really hard to pump the blood through my body. I guess it will just take time. If It does not improve over the weekend I will make an appointment with my surgeon to discuss taking a medication such as Lomotil or Immodium to try and slow things down to give my body the chance it needs to absorb the water I am drinking. It's been a long road. I am finally getting my pain under control, but now this dehydration and fatigue has snuck up on me. To make things even more stressful, I found out my grandfather passed away and I was too sick to travel to his funeral. I was devistated. I have experienced some depression this week because I am too tired to do ANYTHING. I want so badly to play with my daughter and go shopping with Phillip for Christmas presents. I want to enjoy my life again and see my friends. Feeling like this has kept me in bed for most of the week. It has been really tough and I have had a lot of "how did I get here & what has happened to me?" moments. Lots of feeling sorry for myself. I am trying hard to change my state of mind and keep positive. But it is hard when you want so badly to get back out there and be normal again, but my body has other plans. I keep telling myself It could be worse and I am so lucky to be doing as well as I am. I am trying very hard to stay positive and see the good days ahead.

      I also had a visit with my oncologist last week. They had good news and bad news. The good news is they are 80% sure I am cured and think they got it all with surgery. The bad news is the tumor was gigger than they thought. It was staged at T2, but after biopsiies it is actually categorized as a T3 tumor. There was nothing found in my lymph nodes thank God. But the oncologist explained it like this: The tumor is like a well established plant in a pot. It has started putting out strong roots, but hasn't broken through the pot yet. Good to hear it did not break through the colon wall yet. However, when you have a T3 tumor and you have stage two cancer, they like to suggest the option of chemotherapy. This is totally up to us. It may only increase my cure rate to 83-85% so we are not sure if it is beneficial enough to go through with 6 months of chemo. We are doing some Genomic testing on the tumor cells to learn more about the specific makeup of my cancer cells to see if it has a high or low chance of re-occurance. If it has a high re-occurance rate this will give us a decision about the chemo. We are still waiting for the test result and should be hearing back in a few days. I am really scared and have not been sleeping well. We just pray that the test will bring us good news and I can skip the chemo and keep healing. If I don't have to do chemo, I will have my second reconstruction surgery in about 2-3 months. If I do have to do chemo, I will have to wait until the middle of next year for my next surgery. We will keep you updated on what we hear and if my health improves within the next few days. Thank you all for your thoughts and prayers.

      Monday, December 5, 2011

      Post 19: Things I didn't know

      Before my surgery I tried to research and educate myself as much as possible so I wouldn't have any horrible surprises. I wanted to read the good and the ugly so if anything weird happened I could rest assured that it had happened before and I will be ok. Nothing can really prepare you for a surgery though, because everyone is so different. I wanted to list a few things...some good and some bad...that came as a surprise to me.
      1. I didn't know how emotionally draining this would be. Yes, physically it has been rough, but the emotional healing has been very difficult - if not harder than the physical pain. Not being able to do the things I love, feeling like I am being a bad mom and bad wife. It really takes a toll on you. Seeing myself in the mirror with my scars and ostomy bag is still taking some getting used to. Somedays I couldn't look at myself. But It DOES get better. It just takes time.
      2. I didn't know how TIRED I would feel. My doctor said I needed 6-8 weeks. Sure, I thought. That won't be so bad...I thought I would feel better way before that. I thought it would be like after you have a baby. Sure you hurt, but you can still move around and you get your energy back fairly quickly. Not this time. I was unaware of just how exhausted I would be. Somedays I could barely get out of bed. I need to nap quite a bit as well. I am looking forward to getting my energy back someday!
      3. I wasn't aware of how nauseaus I would be. I thought once I was given the OK to eat, I would want to. This hasn't been the case. Food has been my enemy and I have had to force it down. I'm not sure why I am so nauseous all the time, but it's no fun.
      4. I didn't know I would lose so much weight. I think the whole nausea thing is the blame for this one. Since I have to force myself to eat anything my weight has dropped pretty fast. In 6 weeks I have lost 20 pounds. I can't say I am totally disapointed in this, as I have lost the baby weight and that makes me happy. But feeling sick and that being the cause of it is no fun.
      5. My colorectal surgeon should add "plastic surgeon" to her title. I have a really great surgeon. She is very much a perfectionist - which is what you should be when you are a surgeon! My incisions look pretty awesome. They are healing well, they are clean straight perfect lines. She really did a great job putting me back together. :) Luckily I was able to have the surgery lapriscopically. Now with the internal stitches and the skin glue they use, all the marks on my stomach are healing so well. Years from now I don't think they will even show much. I have one large incision at my bikini line (kind of like a c-section) One line on each of my sides, an incision in my belly button, and the hole from my drain, and of course the hole from my ostomy. My stoma/ostomy site is pretty small which is good, so that should not be a large scar after they close it up during my second surgery.
      6. I didn't know how painful this would be. I would love to be super positive for anyone who might be about to go through a j pouch surgery and say it wasn't that bad. But sorry, this has been rough. It has been the hardest 6 weeks of my life. I has been very painful. However, it has been getting MUCH better. You just have to be patient with your body. It needs time. And it does get better with time.
      7. I didn't know how lonely I would feel. I have wonderful friends, family and co-workers. They have been there for me and have been absolutely amazing. Especially my husband, Phillip. He has taken on the role of not only being my main care-taker. But he works full time, does all the housework and takes care of all of the stuff I can't do for Elise. He lets me sleep in and wakes up with her in the middle of the night. He has been truly amazing and I am so grateful to have such an amazing husband. Even though I know I have people there for me, I still can't express how lonely this process has been. I don't know any new mothers in their early 30's who have had colon cancer and who have gone throught this procedure. Every new pain or strange feeling is scary, I don't know if I'm normal or if something is wrong. I don't know what to wear to cover up the ostomy bag, I don't know what to eat, I don't know if the physical and emontional feelings I am having are normal. I wish sometimes I had someone to talk to who has been through this same situation. Just to have someone to ask questions and to tell me, it's normal and that I am going to be ok.
      There are a few more things I am sure I will think of that I can add to this later.

      Monday, November 28, 2011

      Post 18: Five weeks post surgery #1

      Sorry I haven't written in a while. A lot has been going on, and I've had lots of ups and downs. My spirits have been so much higher after our Thanksgiving weekend and I am feeling the best I have yet today. I thought today would be a good day to write and try to update everyone a little bit. Spending the last 4 days with Phillip, Elise and our family for Thanksgiving helped me so much. I want to share a few good things that have made me happy along with some news from doctors appointments we've had during the past couple of weeks.
      First off, I just want to say thank you again to everybody for all of the prayers, sweet messages, meals, flowers, phone calls....it has meant the world to me. Last night Phillip, Elise and I took a stroll around our little cul-de-sac. I am able to walk short distances now that some of my pain issues have been helped. (I'll tell you more about that in a bit)
      Phillip spent all day Saturday putting Christmas lights on the house. He worked so hard making it look pretty for us! As we were walking down the street, I looked up at the house glowing with lights decorated for Christmas, and I just burst into tears. It was just so beautiful and I felt so grateful. How did I get so lucky? I have this amazing husband who loves me unconditionally, and thinks I am beautiful even when I feel disgusting. We have a beautiful, healthy baby girl who is smiling and giggling at me when I look at her. And we have a beautiful safe, warm place to call our home. Something inside of me changed and I knew everything was going to be ok. We have this little bump in the road to get over, but I still feel like the luckiest girl in the world.

      In my last blog post I talked about a few challenges I was having. I'm happy to say a lot of those issues have become so much better! For several weeks I felt like I was doing nothing but measuring body fluids. It was becoming too much. I originally agreed to take part in a study to show how fluid intake effects the health of new ostomy patients. I had to record every ML. I drank, and record my output too. I emptied my ostomy bag, measured that, measured urine, and had to measure what came out of my drains. It was just gross and it really took a toll on me. I felt disgusting. I think it was important at first to show me how much water I needed to drink. They said over half of us who have this surgery would end up back in the hospital. I was determined to not let that happen to me. So seeing how much liquid I was losing did help me see how important it was to drink up! However, after recording this info for a few weeks, I asked if I could kindly be released from the study. I needed to not have this on my mind all the time. It would take so long measuring and cleaning up. I just couldn't do it anymore. The doctors were great and said I had been doing a good job and let me out of the study. Since I've stopped recording it, it has helped my spirits tremendously!! I don't have to think about it so much. Just as long as I make sure to drink at least 2500ML a day. I fill up my big Nalgene bottle throughout the day, and don't go to bed until I drink over 2 bottles full. Problem solved! :)
      Another good thing is I visited a certified ostomy nurse at Shands, in Gainesville. Unfortunatey there are no certified ostomy nurses anywhere in this area. I have had 3 home nurses come out, and I know they were doing the best they could in trying to help me. But with something like this, you really need to see someone who specializes in ostomy care. The ostomy nurse helped teach us some tricks and it has helped my skin heal. With this pain gone I am able to be much more active. She really was a lifesaver. While we were at the doctor's office I alos had my drain removed! I was so HAPPY to get that thing out of me. I felt like I was always having to be so careful so it would not get pulled. It was bulky under my clothes and I was so happy to see that go!
      Since some of my pain issues are gone I've been able to hold Elise more. I still place some pillows over my belly so she won't accidentally kick me where my inscisions are. This has made me so much happier. It has been so emotionally painful not to be able to hold my baby girl. I still can't be the active mom I was before the surgery quite yet. But it's a start!
      Soon I really want to post about how I learned to get my ostomy appliance to properly fit. This issue was so diffucult emotionally and physically. There are a lot of details to cover, so I wil write about this more later.



      Friday, November 11, 2011

      Post 17: Update post surgery

      Meredith here! Just wanted to let you all know I am alive and kicking. It's been 18 days post surgery. What a journey this has been for us so far. Mom and Phillip have been amazing and have been taking great care of me for the past two weeks at home. I've been wanting to write sooner, but haven't felt quite well enough yet. I can't say I am having good whole days yet, but I am having more and more good moments each day. I am healing a little bit more - emotionally and physically - each day. Some days are the lowest of lows, and I feel like I will never be better again and I don't know how much more I can take. But then I have to try and remember how far I've come, and how much I have improved since those first couple of weeks. I am a different person than I was 18 days ago for sure. I have to remember there is a light at the end of the tunnel. Elise helps me see it. I can have the worst day ever and her smile will completely transform my mood and spirit within minutes. We've been taking her to daycare while my mom takes care of me during the day. When Phillip gets off of work they pick her up and I get to see her for a little while each evening.

      Most days have been tough, but when I do have a good moment, I use that time to try and eat something, make sure I am drinking enough fluids, brush my teeth or wash my face, or get up and try to walk a bit. I find that after I do anything small I am so exhausted that writing just hasn't fit into my day quite yet. I have so much to say, but I am still a bit overwhelmed and emotionally and physically drained.

      Right now I am having 3 major challenges. I actually have MANY more....but I am trying to tackle just a couple at a time. Thinking past these right now will send me over the edge. I am just trying to focus on things I can control right now.

      My first challenge, and biggest of all, is I am having a very difficult time not being able to hold or play with Elise and be the mommy that I want to be. It physically hurts my heart not to be able to pick her up when she needs me. I cry about it a lot. I try to be positive and tell myself that this will pass soon! But it is hard because I miss her so much. Just feeling her in my arms is all I want sometimes. I haven't held her in so long. I desperately needed to just hold my baby last night, so we figured out a way for it to work so I wouldn't be in pain. Last night was the first time I was able to really hold Elise. We put some pillows around my stomach and while she was sleeping we gently put her on the pillows so I could just wrap my arms around her. I still can't have her touching my stomach, but at least I could have her near enough so I could keep my face close to her head. I just kissed her hair and smelled her. She smelled so good and she was just so sweet as I sat there and watched her sleep in my arms. Thankfully I was able to stay in this position to hold her for almost an hour. My pain was getting too intense to hold her anymore but I did not want to let her go. I was very thankful for this time with her last night. It was so good for my heart and made me so happy. At that moment I was TRULY, purely happy again. I am getting kind of choked up writing this. I hope I will be able to do this every night now and eventually get rid of the pillows! :) I love that little girl so much.

      My second challenge is trying to get my ostomy bag to fit. I will explain this more later, but this has been the source of most of my pain and stress. Once we get this figured out, I am going to write a detailed entry on this issue! I never knew how frustrating this part could be and no matter how much research I have done or how many different nurses who have tried different things, we are now just starting to get it to fit....we think. No two stomas are the same on anyone, and trying to get the ostomy bag to fit properly is basically trial and error. It is so important to get the right fit around your stoma or the stomach acid will leak out and eat your skin away. I have had nurses come out to my home for the past two weeks to help with this issue and we still have not been able to get the right fit yet. Once you do, you have to order all of your supplies and correct size....it's very complicated to explain and I will get into the details later. Let's just say, my bag has not been fitting, it has been leaking onto my skin all around my stoma and my skin has been burned away by the stomach acid. Keep in mind that I still have to continue to adhere a bag on top of this skin that is already raw while we try to heal it. I have been in excruciating amounts of pain and pray that we will get this figured out soon. I just got my new sample products in the mail a few minutes ago that will hopefully fit better, so as soon as Phillip gets home we are going to try the new products. Please pray for us that this works. I want my life back and I won't be able to do anything or be in less pain until I get this thing to fit.

      My 3rd big issue is all of this liquid input/ output, measuring......it's hard. Anything I drink I have to measure and write on a chart. I have to empty my ostomy bag and measure and record that, measure my urine output, and I have a drain still attached to my stomach. I have to empty the drain, measure that liquid and record it as well. All I do is measure liquid all day. It is exhausting, nauseating, and makes it impossible to get all of this out of my mind for even a few minutes. I have to do this for a while because over 50% of new ostomy patients end up right back in the hospital due to dehydration. I have to make sure my input is equal to or greater than what comes out of me. Fun huh??? That takes up most of my day along with the timers that go off that tell me when my next medicine is due. Makes for some long days.

      I have a lot more to say, but I am getting really tired and need a nap before Phillip and Elise get home. Hopefully we can have some more family time tonight! I will try to write more again soon. Love you all and thank you for your thoughts and prayers. You all have been an amazing support system to me. I am so grateful for you all. Thank you for also taking such good care of my mom and Phillip. Thank you for bringing them meals and helping them out so much so they can give me the best care they can. It means the world to us.

      Saturday, October 29, 2011

      Post 16: Day Four After Surgery


      Today was a tough day. Meredith's IV pump has been slowed down and has as a result the pumping sound has become much more annoying. During the day it is easy to ignore it but during the quiet night it is about enough to drive you crazy because it is a very inconsistent sound that varies in volume and tempo. A nurse finally ended up getting Meredith a pair of earplugs that helped her sleep much better.

      This morning we had to see a lot of people and it got to be a little too much. The tech usually comes by at around 5am to take blood, they are followed by the first round of doctors that come through at around 6:30am, then comes the nurse shift change at 7am, then at about 7:30 the second round of doctors including the surgeon stops by to update us, then finally breakfast arrives, and a grad student stopped by and wanted to do a survey. The good news is the doctors said that she is doing great and that we will most likely get to go home tomorrow (Saturday). In addition to the usual morning visits we had our most comprehensive session with the stoma nurse so far and that took about an hour. We learned how to completely change and clean everything and talked about managing everything at home. After that another nurse stopped by and talked to us briefly about home care and finally they took Meredith completely off her IV's and we started to manage her pain by oral medication.

      In addition to our busy morning we got to see our little girl again but in combination with our busy morning is was just a little too much for Meredith who was exhausted by this time. Meredith finally got to take a nap at about 3pm and once she was out and she was pretty much done for the day. I went to the main hospital food court across the street and got her a grilled chicken sandwich for dinner and we just relaxed for the rest of the evening.

      For me the past several days has been very challenging. I want to be here and help Meredith through her recovery but it is no walk in the park. The couch/bed that they have in the room really isn't too bad to sleep on but as anyone who has stayed a night in a hospital knows, it is tough to get rest regardless of how comfortable you are. I have really learned a lot and think that it will really put me in a good position to continue help Meredith when we get home. The hardest part has definitely been being away from our little girl. It may sound weird but I cannot wait to be woken up by her cry at 3am! I really miss her and getting to see her these past 2 days has helped a lot but I am really ready to be at home with my family. I would say this to anyone that has a spouse that is going through a similar situation, it is not easy but it is worth it. I feel that constantly being by Meredith's side has helped her more than I can know and will only strengthen our relationship. Boy am I ready to be home!

      Friday, October 28, 2011

      Post 15: Third Day After Surgery



      Doctors have said that Meredith is looking good! She was moved to a regular diet and can eat solid food again, but getting back in the swing of eating solids takes a little bit of time. Usually after a meal Meredith experiences some pain that seems to be caused by digestion and any gas causes quite a bit of discomfort. I also tried helping her empty her bag for the first time and I ended up making a mess! Fortunately the stoma nurse stopped by a little later in the day and educated us some more on the bag and we are starting to feel a little more confident about using it now.

      Meredith also was able to have her catheter removed today. Each one of these small steps is really a blessing because between the oxygen, catheter, IV, pressure socks, painkiller PC, drain and ostomy bag all on top of a serious surgery you can get tangled up / claustrophobic and getting up to move around can really become a production. Today while trying to get Meredith up for a bit her drain got caught in the covers and I accidentally gave it a tug... I felt absolutely terrible and it really hurt Meredith. On top of that Meredith has also still been experiencing some of that diaphragm and shoulder pain that we think was caused by her surgery CO2. Despite the setbacks we still managed to get up and walk the "block" tonight.


      Meredith's mom and sister brought Elise so we got to see our little girl Elise today and it really brightened my day, she really helped me recharge. Meredith really enjoyed getting to see her too, she really got us to refocus and we are excited as ever about getting home. They said that if everything keeps going well that we can expect to go home Sunday.






      Thursday, October 27, 2011

      Post 14: Second Day After Surgery




      Today started off pretty good. Meredith got to take her first sip of water in two days over the night and her ileostomy started producing so they put her on a clear liquid diet. First thing this morning I helped her up and went to the bathroom so she could brush her teeth, she was excited about that! After that she sat in her chair for a bit, we thought the day was off to a pretty good start. That unfortunately was the high point of the day. During laparoscopic surgery they pump you full of carbon dioxide so they can see what they are doing. This gas can irritate your phrenic nerve and cause some serious pain in her chest and shoulders. This pain has ended up being the primary source of Meredith's discomfort. Even with her morphine drip the pain caused by the gas has been difficult for her to manage. The pain is usually compounded when Meredith has a panic attack that causes labored breathing, it turns into a pretty rough cycle. The doctors have administered adavan in her iv to help calm her and it usually knocks her out.
      The pain today has probably been the worst since the surgery and it along with the panic attacks has kept Meredith in the bed for most of the day. Though out the day Meredith has several "accessories" that have to be emptied. She currently still has a catheter, she has an ostomy bag that has to be emptied and she has a drain from the procedure still attached that moves fluid away from the areas effected by the procedure. In addition to having to be emptied they have been administering lovonox directly into her abdomen She was allowed to start her clear liquid diet so it was good for her to "eat" and her ostomy continued to produce. We talked to the stoma nurse today and she educated us on living with the ileostomy and gave us some tips. Tomorrow Meredith's mom is bringing Elise to visit and I cannot wait. She has really been a ray of sunshine through all of this.



      Post 13: First Day After Surgery



      Today was Meredith's first full day after surgery. Thankfully the morning started out on a high note, they removed her NG tube. It is a tube that goes through her nose and into her stomach and caused her quite a bit of discomfort. At this point she has not had any thing to drink since Sunday, her mouth is really dry and we have a little sponge on a stick to wet her mouth. Even with the tube removed they said she should not drink anything until her stomach "wakes up". To help with that process a physical therapist stopped by and encouraged us to get moving. Meredith was able to get up and sit in her chair for a little while and later in the day we walked her down the hall. It worked like a charm! Over the night she started "producing" so tomorrow she should be able to drink and start a clear liquid diet.

      Monday, October 24, 2011

      Post 12: Surgery Went Well!



      Hello everyone, Phillip here, Meredith is resting so I am taking a shot at blogging. Today started early for us. We were up at 3am so we could make it to Shands by 6am. The hardest part of this morning was definitely leaving our little girl behind. Elise woke up just in time for us to feed her before we left. Meredith said that she flashed her little grin at her as she dozed back asleep, a perfect goodbye she said. The drive was pretty uneventful and the hour and a half flew by.We got to the hospital right on time and they took her back pretty quickly. They really had things moving along for it being so early in the morning. They let me back as everyone was coming by to make sure everything was in order. My dad was in town so he stopped by and said a prayer for us and let us know he loved us. We briefly met with the stoma nurse and she marked Meredith for her stoma X marks the spot! After that we met with the surgeon and the anesthesiologist, they gave her a little something to start calming her down and within seconds she just started chatting, I kissed her and they took her back...


      Meredith's mom and sister joined me in the wait after they dropped Elise off at daycare and made the drive. The surgery lasted six hours and they kept her in recovery for another 3 hours before they let us see her. After the surgery the doctor came out and told us the operation went better than expected and we are now waiting for pathology results. The wait was really hard but it was good to finally see her. Unfortunately Meredith was having a pretty serious panic attack and it took a bit before they could give her something to calm her. She is resting now and doing much better.

      I have really got to thank the staff at Shands. To this point they have exceeded my expectations and have really gone the extra step in helping feel that we are in good hands. Thank all of you for your thoughts and prayers, we will be home soon.

      Sunday, October 23, 2011

      Post 11: Night before surgery

      4 liters of pure refreshment.
      It's about 5:30 Sunday night. Elise is down for a nap and Phillip and I are about to pack for a week in the hospital. I don't even know where to start. I go in at 6am tomorrow morning. It's crazy to think this day has come. I have been dreading it for months now. In about 12 hours I will be checked in at the hospital and my surgery will start a few hours after that. I finished my prep. It was a tasty 4 liters that took 4 hours to get down. The instructions said to drink 8 oz. every 10 minutes. I would set my timer, and just about the time I made it out of the bathroom, it was time to drink again. Fun day! I have had so many colonoscopies in the past (and had to do this prep 5 times just in the past few months) so you would think it would get easier. It doesn't unfortunately! Drinking a gallon of salt water isn't very refreshing.

      Two things I  have learned:
      1) Chug it with a straw. Just put that straw to the back of your cheek and just get it down.
      2) Drink more water. Lots more. Even though you feel like you can't possibly drink another ounce, you need to so you will not get dehydrated.  It makes the IV go in easier if your veins are healthy and hydrated. I learned that the hard way.

      Since prep is done, now I can just enjoy the rest of the evening with Phillip and my baby girl. I may just have her sleep in the bed with us tonight. I just want to hold her. I can't get enough of her today. I will miss her more than I can even express. My heart hurts right now even typing this. I know she will have a wonderful time with "Grammy" and aunt Amanda. But it's going to be hard leaving her in the morning. We will head out about 4am to head to Gainesville. I have so many thoughts going through my head right now. I won't lie, I am absolutely terrified. But mostly I am just ready to get this next week behind us. I may not be able to write for a few days, so Phillip will keep everyone posted on here. I love you all and thank you for your continued prayers. Wish me luck! I will talk with you all soon. For now I am going to get in some precious family time and can't wait until I get to get home!
      Love to you all.

      Friday, October 21, 2011

      Post 10: Family Pictures

      Since my first surgery is scheduled for Monday (10/24), Phillip and I wanted to make sure we had lots of family pictures to take with us to the hospital since we will be there for a week. My sister-in-law, Anna came out with us to take a few of the family! We had so much fun! It really helped me put things back into perspective and it made my heart so happy. Here are a few we took last night. Thank you everyone for your continued thoughts and prayers. We have definitely felt them. My mom and sister will be taking care of Elise next week. Mom will be staying at our house while we are in Gainesville. Plesase keep them in your prayers as well. I am so lucky to have such a wonderful family! Thank you everybody. Your kindness, prayers, and thoughful messages have meant the world to us.  We will continue to keep you updated here on the blog over the next several weeks.

      

      Thursday, October 20, 2011

      Post 9: Stress is an ugly monster.


      So, this week I had all kinds of fun plans. My plan was to "be normal." Everyday was going to be great! I was going to eat whatever I wanted, go for bike rides, play with my family. Have loads & loads of fun and just enjoy myself before the surgery. Good idea, right? I wasn't aware of this ugly monster called stress that took over my mind and body and made me feel beside myself.

      Phillip, my mom, sister, and I planned to take Elise to a pumpkin patch and have lunch this past weekend. I was super excited the day before and ready for my fun weekend ahead. Well, Friday night I couldn't breathe. I felt like I just couldn't get enough air no matter how deeply I took a breath. My heart was pounding, my body hurt. Head was spinning, my face and hands went numb. What in the world was going on? I had no appetite. This can't be happening! I had plans to eat a giant steak and brownies and ice cream this week! I have to because I won't get to eat for a while!! Of course the thought of my "plans" being ruined made me panic more. This continued on and off throughout the weekend between little trips to the pumpkin patch and throughout the day. Yes, we went. I refused to ruin our weekend! I slapped on a smile and tried to enjoy myself between the "crazy moments." The fun must carry on!!

      Here are a couple of pictures of Elise we took at the pumpkin patch! This little girl cracks me up and makes me so happy!

















      Even though we had some fun at the pumpkin patch, I was still worrying too much. Since I had so much trouble breathing, I convinced myself I was getting sick. Oh no! I must have bronchitis, or what if I'm getting pneumonia!! Oh NO!! The doctor told me that if I was sick they would have to reschedule the surgery. NO! I can't be sick!!! My mind kept spinning. Well, with all of this worrying, I eventually made myself sick and couldn't keep any food down. I ended up going into a full blown panic attack and crying like a baby. I felt like a crazy person. I have never had a "real" painic attack. Lots of anxiety? Yes. But a full blown attack?... This was new and scary. For those of you who deal with panic attacks on a regular basis. BLESS YOU. I don't know how you fight this everyday. This is a whole other ball game. My mom kept telling me. You're ok, you're having a panic attack. I google everything. I know, I know. You should never use google to diagnose yourself. All of the symptom charts lead you to make you think you're dying. So I disciplined myself and limited my google search to "symptoms of stress." Aaahhh. I see now. This is why I feel like I am going nuts. Stress is just horrible. It will literally destroy you and make you sick. The mind is a POWERFUL thing. I keep reading the syptoms daily and remind myself, nothing is wrong with my lungs. I CAN breathe. My worrying is making me not able to breathe. Easier said than done! Yes, I still have been having panic attacks this week. No, I have not brilliantly cured myself of my crazy thoughts. I'm only human, right? But I have given myself permission to lose it every now and then. Sure, it is ok to lay on the floor and cry like a blubbering baby. But then I get up, brush myself off and try to push forward.....Or my husband makes me :) I love him! Bless him, he has seen a whole other side of his wife this week! Knowing the physical symptoms of stress and behavioral symptoms helped me realize I'm not getting sick or going crazy. (Maybe just a little crazy :) I am going to get through this and be ok!

      Everyday I am reminded of how lucky I am. Aside from having the most wonderful family and friends I could ever imagine, I have the best principal and co-workers ever (who are also wonderful friends). They treated me to a massage yesterday since I've been wigging out. I have tried to keep it together, but they could probably see the twinkle of crazy in my eyes :) It was the best massage EVER!!!!! I tell you, afterwards I felt like a new woman. My spirits were lifted. My body felt better. I felt like me again. Now the massage therapist warned me that I would be all knotted up again in a day or so. Darn. I know the stress may not subside until all of this is over. But hey, a night of good sleep and relaxation did me some good! It's amazing what a little treat like that can do for you. So thank you to my sweet family at Dewar Elementary! It truly did work wonders. A little name dropping here.... Natalie Miller (massage therapist) at Anthony & Company is a miracle worker. Maybe I shouldn't have said that, because I don't want her to be booked up al the time :)

      So, my lesson I learned this week. Stress will turn me into a blubbering, crying, pile of mess. Thank you to all of my family and friends who have helped me keep it together and have picked me up when I lose my mind. Three days till surgery. Thank you for reminding me....this too, will pass.

      Thursday, October 13, 2011

      Post 8: Pre-Op visit

      Elise and Mommy right before going
      to daycare. She is my ray of sunshine
      through all of this! (5 1/2 months old)
      Yesterday was our Pre-Op visit. Phillip and I dropped Elise off at daycare and headed to Gainesville. (I am lucky to have my mom to pick her up if we can't get back early enough.) We first met with the surgeon. We were able to ask lots of questions and address any concerns. We were gone most of the day for our Pre-Op appointments. After talking to the surgeon I had to get an EKG to make sure my heart is in good condition, bloodwork drawn, and a chest X-Ray to confirm that I do not have any cardiac or pulmonary issues prior to anesthesia. I also had to see an anesthesia team. I will be asleep for a while for this surgery. It takes a few hours, so they wanted to check my airways, etc. to make sure I was good and healthy. They said my surgeon was a good one, and I would do great. Always a good thing to hear!
      Everyone kept reminding me that we are a team and they will be working with our family and helping us along the way. There will be a lot I will have to learn when I wake up from surgery. I will have a colostomy bag (hopefully temporary) and that will take some getting used to. Also they will be getting me up out of the bed and get me walking within 24 hours. Even if it's just around my room at first. They also said I will  be without food for a few days. I'll start with liquids and slowly work back to solid foods. It will be a physical and emotional roller coaster, but I am so lucky to have Phillip by my side. The toughest part is not  being able to see Elise right after the surgery. Elise has been what has kept me happy and going strong. I can have the most rotten day, but as soon as she is in my arms I am happy. My mom will bring her up to see us after a few days when I am feeling a little better.  Phillip will be able to stay with me and help take care of me while I am in the hospital. He will be learning a lot from the nurses on how to help me when we go home as well. Luckily I have my mom and sister who will be taking care of Elise the week we are in the hospital.

      I can't tell you enough how lucky I am. I really have the most amazing family, and my husband...I think he is an angel. He is my best friend and has held my hand through every single appointment. I know this is all just as tough for him, if not harder. I know I would rather go through with this than have to watch him, or Elise go through any type of surgery. I know he feels helpless. But the truth is, he has done more for me than he realizes. Just being there to tell me everything will be ok is all that I need.

      After 5 hours of being at the hospital, and a two hour drive there and back, we were finally home just in time to give Elise a bath and get her to bed. We missed her so much! We get so excited when we pull in our driveway because we know we are minutes away from hugging and kissing our little girl!

      My spirits are still high. During the days I feel pretty good. However, I am finding I don't want to be alone lately. That's kind of unusual for me. I have never been the type that had to always be around someone. I love a quiet afternoon by myself at the house. But lately, I can't handle being alone with my thoughts. The evenings are the most difficult for me right now. After Elise goes to bed I tend to have some anxiety attacks. I guess when it's quiet I have time to think. I end up worry myself sick. Sometimes I am scared to go to bed because I know I will lay there and think about everything....I think, will I make it through the surgery? Will Phillip & Elise be left alone? Has the cancer spread? Will I wake up from surgery with more bad news? Can we handle the medical bills? Then I start to feel guilty about having to be taken care of. I don't want to be a burden.....the thoughts just go on and on. My doctor prescribed some medication that will help me fall asleep and calm my anxiety a little bit. It has helped me a lot in the evenings. When we met with the psychologist at our last visit, she said I might be experiencing some night time depression. I feel like I am just a big mess in the evenings! But writing about it and talking it through has helped a lot. I am definitely ready to have this behind us.

      I just want to thank you all again for your continued prayers. All of your sweet comments and emails have really helped me stay strong. My 1st surgery is on the 24th of October - a little over a week away. For now, I just want to get the house together and spend as much time with my family as possible. I might still be in the hospital during halloween, so this weekend we may try to find a pumpkin patch for Elise to see! I want to take lots of family pictures too. I'll be cuddling and snuggling that little girl as much as I can this week!

      Saturday, October 1, 2011

      Post 7: Oncologist Consultation

      We received some good news from the oncologists Thursday. I will not be needing any chemo or radiation at this time! So relieved!! At Shands they have pow-wow sessions where all of the doctors meet and discuss patient cases. (3 Oncologists, 3 GI specialists, and 2 surgeons that I know of) This is amazing to me. I love how everyone knew everything about me before I even met them. I really can't say enough about how amazing Shands has been.
      It was a long day and we met with a lot of people. Phillip and I met with 3 oncologists, a social worker, and a psychologist at the cancer center. Everyone was phenomenal and made me feel like I was in such good hands. They said during my endoscopic ultrasound the GI specialist got really great pictures of the tumor and they said it appears to be completely contained in my colon. It has moved to the muscular wall, however so we need to get this thing out soon. Luckily they did not see anything in my lymph nodes or in any other surrounding organs! They think surgery as soon as possible will do the trick and that radiation may be over doing it at the moment. However if any more cancer is found in surrounding areas during the first surgery, my procedures will go from 2 surgeries broken into 3 so I can have radiation if I need it.

      This is my schedule at the moment:
      October 12th - My Pre-Op appointment with my surgeon. Everything will be explained on how I have to prep for my 1st surgery.

      October 24th - Surgery # 1: This will be a tough one. I will be in the hospital for 7-10 days depending on how I heal. I will have a total colectomy because of the tumor and because of my colitis. If I do not get my entire colon removed it's not a question of IF cancer will pop up somewhere else in my colon, but WHEN. Better to get it all taken out now so I never have to go through this again. During this surgery they will create the JPouch.

      If they do see cancer elsewhere: they will wait to make the Jpouch, just do a colectomy and I will have to go through chemo and radiation then. (it would be split it in to 3 surgeries then)

      If no additional cancer is found:  If all looks good my surgeon can make the pouch and I will be on my way to healing. While I heal I will have to wear a colostomy bag until my last surgery unfortunately.

      I will have to be out of work for 6-8 weeks to heal from this first surgery. Hopefully I will heal faster and can be fairly normal before then. I will still be wearing the colostomy bag at this time.

      After 3 months: (If all goes well)  Takedown surgery #2 . In the hospital for 3-5 days. I will have the colostomy bag removed (finally!) and then my small intestine can be hooked back up to the Jpouch that was made. It will be healed and ready to start functioning by then.  Hopefully this will be done sometime in February (if I do not have to have chemo)

      6-8 weeks of healing time again for this surgery. Even though the surgery will be easier, this will be a tough time because I will have to learn how to eat foods again _get my plumbing moving so to speak. I will start with a liquid diet, move to soft foods, then eventually normal foods. It will be a lot of trial and error and I will be sick for quite a while until I can figure what foods will and will not work for me. The good thing is after the takedown surgery I will no longer have to wear a bag because of the pouch that was created using my small intestine. It is amazing how they can do this!

      Over the next year my JPouch will continue to improve. Bowel movements may start out around 20 per day immediately after the surgery. (No fun at all) However, over the course of the year it will go down to 4-5 (I hear that is as good as it gets)

      Meanwhile I am feeling great and doing well. Phillip, Elise and I are enjoying this gorgeous fall weather we are having right now. I am eating everything I want right now because I know in a couple of weeks I won't be able to! (We made chocolate cake the other day) I'm also doing a lot of things like riding my bike (my mom got Elise a little trailer to hook to the back of my bike) and enjoying working in the yard. I know I won't be able to do some of those things I love for a little while and I am just trying to enjoy myself  before I go in for surgery.

      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".
      Beth

      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.

      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.

      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.