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.

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.


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.
 

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!

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.

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.