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 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.