Just to recap a little, the last time we posted was day 5 and at that time Melissa was still experiencing some pain and discomfort. She was taking pain medicine at home to keep the pain under control. I should clarify, that the pain was bearable and she was still able to move around. She had a tough time sleeping for quite some time and was switching between our bed and the couch.
Melissa had her bag changed for the first time in the hospital, this is where she was taught the different methods and how the bags worked. When she was home and it came time to change it for the first time, it was quite the experience. We had all of her supplies jumbled together in one of the plastic containers that was sent home with us. When she took off the first bag, her stoma decided it was time to have output. We were rushing to make sure we didn't get it every where. When we finished we felt like we were successful or so we thought. It wasn't too much longer (maybe a day or two) when she felt like the bag was leaking. Melissa could always tell because it didn't take much time for the skin around the stoma to get irritated. She described it as a burning sensation that turned into a intense sting. We were changing her bag what seemed like twice a day and we started to feel frustrated and defeated. They made it seem like things were going to be so simple in the hospital and we couldn't understand why we were having such a rough time. I took some turns changing it, her sister that is a nurse tried, and we finally decided to have a home health nurse come and try. There are a lot of different tricks and tips that were given to us but it still wasn't working. This is a picture of how her irritated skin would become,
The redness on her skin around the stoma is what I was referring to. She said that this was by far the worst part of having the bag. It got to the point that we were still changing the bag much too often and between the leaking fluids and the adhesive pulling at her skin she was pretty miserable for a while. We decided it was time to go see a specialist. We scheduled an appointment and got in as soon as we could. I wasn't able to attend but Melissa said this lady knew her stuff. She said that it was a lot of good information but the lady could of been a little less detailed, for time purposes. The lady explained that the bags that we had been given from the hospital were actually dissolving. I personally, found this to be very idiotic and confusing. Why would they even create a bag out of materials dissolve? Anyways we got the new bags and we were excited to start giving them a try. I'll have to ask her which ones they were so we can include the information. Are experience was much better with these bags and they normally would stay on for a few days before needing to be changed. Every now and then we still had some times when the bag would randomly leak, and it would need to be changed. During this time Melissa started feeling a lot better and even though there were these little bumps in the road, she was still so much happier. Her sickness with UC was far worse than the bag. She had always had a fear that the bag would be so awful and not worth it. Good news, that wasn't the case. She could finally understand why all the responses she got when asking about the surgery were all positive. She even had people explaining that if she had to have the bag forever, it was still better. She felt that the bag was also an important stepping stone in controlling her emotions. With UC she was always fearful of having an accident and not being able to go places. The bag helped her to realized that she was going to have those accidents anymore and it eased her into those thoughts by teaching her body again. Melissa had started feeling a lot better over this time and by the 3 week mark, she had been up moving around and had even taken our son to his "little gym" where he goes to play and exercise. It was quite remarkable to see the change in Melissa. I had seen her sick for so long, that I honestly had forgotten what it was like having her healthy, and what she was capable of. She had the surgery on March 10th and by the first week of April she was so much better. Here is a picture of Melissa's stoma when it wasn't irritated and when she was feeling so good.
You can look at this picture compared to the other and notice the difference in skin color around the actual stoma. She had a really tough time at first with body image but as she got healthier she wasn't nearly as conscious about it. She was gaining weight and eating a normal diet pretty much this whole time and was feeling good enough that she wanted to start planning for the second surgery. The doctor scheduled it in the books for April 30th. Leading up to that date she only got better and better, she still had some issues with bags here and there but I think that is to be expected. With UC Melissa had certain things she wasn't able to eat or drink. She hadn't had soda or juice for about 4 or 5 years. This was one of the biggest perks was she was able to eat or drink whatever she wanted. She even had a salad at dinner one night for one of our dates. Salad was another food that just triggered her UC. It was interesting, anything she ate or drank would cause her stool to either be a different color or consistency, which is normal.
Melissa wanted me to post a picture of her and our daughter Hadley. Hadley had broken her arm while we were in the hospital and had a cast for a while. It's the two broken girls! As you can see Melissa looks very happy and healthy in these pictures. We also wanted to share a story about our son Kohen. When Melissa first got home and showed him her tummy for the first time he ask if she was ok. Melissa educated him on the "stoma" and showed him many times. He started asking randomly if he could see her stoma. There was even a time when she was taking a bath with him, and he wanted to clean the stoma. She had the bag on, but he liked to poor water over the bag and "clean" it. Also he has always loved farm animals and has plenty of horses, pigs, cows, etc. He was playing with a cow one day and looked the utters and said this baby calf has a stoma. We were dying of laughter! He is only 2 but has such an amazing imagination and he is brilliant!
Oh Melissa you are so brave! Thank you for showing us (me) these pictures! I LOVE following your journey.
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