Surgery # 2

Here we are in the hospital once again! This is a very exciting and eventful time for us. It is now May 1st and Melissa has had the second surgery to reattach the stoma to her J-pouch.

Melissa's surgery was actually on April 30th at 6 AM. Quite early if you ask me, but we liked being the first surgery of the day. We got to the hospital, got registered and checked in and she got ready for the surgery. A nurse came and took samples of her blood just in case there were any issues. Once again she saw her friend Pat who is a nurse at the hospital where we were getting the procedure done. If you didn't read any of the previous posts, Melissa had this friend as her registration nurse for the first surgery. She actual met her doing the remicaid infusions and they had become really good friends. Melissa was very nervous for the first surgery and seeing her friend Pat helped calm her quite a bit. Things were different this time, Melissa wasn't nervous at all, just excited! We went down to the pre-surgery room and met with the doctor and anesthesiologist. They talked a little about the surgery and we said our goodbyes. The doctor explained to me that the surgery would take about 2 hours, this was much shorter compared to the first 6 hour surgery. She went in at about 7:20  and I got a call that she was done at about 9. I was nervous that something had gone wrong because it was so swift. I met with the doctor while she was in the recovery room and he explained that it went very well. I was anxious to be with her and see how she was doing. They explained that the recovery for the second surgery should be a bit smoother. She was in the recovery room for about 45 minutes and then was given a room. She was still a little dazed and confused but she was doing really well. She was telling me how she would fall asleep in recovery and then wake up and say something to the nurse about what she was dreaming about. She was saying the nurse probably thought she was crazy. Then when I was sitting in the room with her, she starting doing it with me as well. I had a good chuckle over some of the things she said.

The doctor said she would just be a little sore but needed to be up moving around and using the restroom. She now has been up walking quite a bit and using the restroom. She is yet to have a bowel movement but they said this is to be expected. They explained that the stay would be about 3-5 days depending on certain criteria. What they need to happen before she is discharged is a steady normal diet, bowel movement or gas, and she needs to be able to control the bowel movements. Depending on the patient, some will have more bowel movements than others. They just have to make sure she has it under control and isn't losing to many fluids. Melissa is doing awesome and is feeling happy. She will randomly just tell say to me "Kell, I'm so happy". I feel so excited for her, so I can only imagine how she is feeling. I don't want to be too graphic but she has had her first bowel movement now and she felt like she was able to control holding it in. This seems like a very good sign! She has been up walking around quite a bit today and has been wishing she could eat some actual foods.

Here is a picture with the stoma gone and NO BAG!!! She wanted me to post it and let everyone know how excited and happy she is.

She also asked me to post a picture of me passed out in the chair, but I'm not doing it and there's nothing she can do about it!

Life with the bag

We apologize that we haven't had any new posts or updates in quite some time. We have been busy and adjusting to the new lifestyle. (If you ask Melissa, it's because I was too lazy to update the blog.)

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!

Day 5

We are now on day 5, and Melissa is recovering nicely but still experiencing quite a bit of pain. She is on pain medication, but she often feels that 6 hours is too long. We wanted to share a few more pictures in this post so that you can see how well she is doing. Just a heads up, we are also going to show the pictures of her colon after it was removed. Just in case you have a weak stomach, it might not be for you. The day Melissa was released from the hospital she graduated to a normal diet. There are some things that they suggest avoiding for 4-6 weeks. This is fiberous foods, nuts, seeds, things of that nature. She has been a little nervous about eating and constantly is checking her bag. She has a huge fear of having a blockage which can cause quite a few problems. The doctor told her that she could possibly have the second surgery within 4 weeks to get rid of the bag. This is a huge relief for Melissa.

Melissa wanted me to share a picture of this. This is a drainage they put in for the excess fluids that were in her body. I wasn't around when it was removed but Melissa wasn't happy about it. She had a student nurse remove it and she was pulling it out very slow. I guess the actual nurse was yelling to "pull it faster", and Melissa was saying she was screaming. She still feels sore from it which explains the frustration. Melissa is the most friendly, patient hospital patient, until you do something that hurts her and it's a complete change. It was very exciting to be able to get sent home so early, the nurse said it was the fastest she had seen someone released with the same surgery. We drove home and I had to make sure to avoid any bumps. Melissa was very fragile and sensitive on the ride home. She already criticizes the way I drive but add the pain and irritation and I think she would of picked anyone but me. 

We had the chance to meet with the stoma nurse together before we left and she gave us a ton of supplies and information. Also, she taught us both how to remove the bag and replace it. It's quite a long process. Luckily, they say you can change it as much as you want but you it's best for 1-2 times a week. Melissa cleans it out constantly, and is constantly looking at it. We both agree that it's really cool. It's so different, especially when you think that Melissa never has to go to the restroom other than to pee. I think the most interesting thing is that it moves. Where the small intestine connects to the abdomen, it wiggles like a worm. 

Melissa is still in quite a bit of pain and she is still not very mobile. She hasn't been able to sleep in our bed since we got home because it was too flat. She's been sleeping on the couch in the recliner. Last night she was able to actually lay on the couch and we propped some blankets and pillows under her legs to make it more comfortable. It was quite a blessing because a couple nights before the kids woke up quite a bit and we didn't get much sleep. Last night, they slept through the night! Melissa has a home health nurse coming to help her change the bag. This is going to be her first time since being out of the hospital. She has had a little bit more energy and has had a couple people come to visit. Also a member of the ward brought us dinner the other night so we wanted to make sure we gave a big THANK YOU for that. Melissa is a little hesitant about actually showing a picture of her with the bag, at least for now. It's a huge change in body image so I can't really blame her. I'm sure she will come around. As promised here are the pictures of the colon. One is before he cut it open and the other shows the actual inflammation of the colon. It's quite amazing looking it, literally her whole entire colon was inflamed. It's astounding that something like this could make someone so sick. Now that it's removed, she's cured! 

 
This is the colon cut open. If you look at the bottom right corner. It's a little lighter pink, this is what color your colon is supposed to look like. The dark red/black parts are the inflamed/ulcers. I look at this and wonder how her colon even worked at all.

Day 4

              The doctor and the nurse explained that the first and second day would be the worst. Surprisingly enough, Melissa was fine these days. It could be her toughness or the pain medicine. She had been up walking around and making jokes just like she used to. It wasn't until day 3 when the pain started. Melissa was dreading getting her catheter, it was probably the worst part of her pregnancies. She has never had any luck with these, and this time was no different. For whatever reason her catheter stopped working. Luckily by this time she was able to start walking more often. This allowed her to have it taken out. She spent a lot of time sleeping in between some visitors here and there. They switched her pain meds and the pain was a little more bearable. She really wanted to make sure that I explained the pain. For the first couple of days she was saying that pregnancy was harder. After the 3rd and 4th day she quickly changed that. It's crazy how much you use your abdomen muscles.

           They told us that she would be expected to go home either Friday or Saturday, depending on how she was doing. She had been taking frequent walks and her diet was moved up to actual food. Melissa has had a fear of getting a blockage so the thought of eating food terrified her. She ate a few things and I think realized that it wasn't going to be as bad as she thought. The doctor came in and talked with us today and let us know that she would be going home! Yay! She is home now! She was nervous but very excited to be able to see the kids. I think the best news that we received today was the lab results came back from Melissa's colon. They were testing for cancer and for krohns disease. They both were negative! Melissa was really nervous to know the results and so we were very comforted to hear those results. She is now home and resting. She is still in quite a bit of pain which is to be expected. All is well at this point and we just look forward to the second part of the surgery to connect it back down to her j-pouch.

day 3

Day 3: 

Melissa's surgery lasted about 4 hours long. She had decided she wasn't going to look at the bag until I was with her. She was in the recovery room for what seemed like forever. I was anxiously waiting for her to be given a room so I could be with her again. She was getting pretty emotional and upset so the nurse came out and got me. They don't let people go in the recovery room for the privacy of other patients but they made an exception because she needed to see me. I went back with her and she was very nervous that she was going to hate the way she looked. We finally got a room (the nurse had to sneak me out of the recovery room) and we finally got some time with just the 2 of us. Melissa was doing a lot better at this point and she wanted to look at it together. We were both really anxious and nervous, not knowing what to expect. We took a look at it and it was nowhere near as bad as we thought it would be. I'm very impressed on how well Melissa handled herself. 

We spent the rest of the day talking about how she felt and all of the things she looked forward to (like not taking medicines). 

Surgery Day and Recovery

            Here are a couple of pictures getting ready for Surgery. It is now March of 2015 and we are going through with the very tough decision of surgery. Melissa had to get prepped the day before. She wasn’t able to eat after 12 PM and was only able to drink clear liquids after that. She still has been on the steroids and they make her very hungry so not being able to eat was not ideal for her. We get a good laugh when she is on steroids and how much she eats because she normally doesn’t eat very much!

            We had to be up and at the hospital by 6 AM, we don’t do early mornings. Needless to say we slept through the alarm and were lucky enough to have Melissa’s mom call us just in time for us to get up and make it to the hospital. We took a couple of pictures while waiting to be taken down to the surgery. As you can see in the picture on the right she was marked by the stoma nurse and that black little dot is where one of the incisions will be made and the small intestine will be connected to her abdomen. This is also where the bag will be connected while she heals, and until it is then reconnected back down to the j-pouch. As you can see she is trying to be as brave as possible. She is very nervous about waking up to the bag and how she is going to feel about it.  We find comfort in being able to tell her that it is not a permanent situation. As they got ready to take her down to surgery, Melissa was telling me about this older women who had been doing her remicade infusions at the hospital. When Melissa was getting the infusions it would take a few hours and she became very good friends with this hilarious, sweet older lady. She was talking with me telling me how she was supposed to tell Pat that she was getting surgery, but she forgot. Sure enough a couple minutes later, Pat walked in. She said "I had to come in when I saw that my friend was here". She was working early in the morning and was able to be Melissa’s nurse. We laughed thinking about how we were just talking about her, but also found comfort knowing that the lord must have been sending her as support for Melissa, because it made her feel a little more comfortable.

           We were talking to the doctor and anesthesiologist and Melissa started to get a little bit more nervous and emotional. I was able to talk with her, and ensure her that she was going to do great. Also remind her that she was going to be so much happier after this was over with and she had recovered. The anesthesiologist gave her a little bit of the medicine and she started getting a little loopy and giggly, it was nice to see her smile right before I had to leave.  Melissa made sure that I asked the doctor that she could see her colon after it was removed. He said they normally don’t do that but he would be sure to take a picture when it was out. I have been sitting in the waiting room writing this blog and this is where we are at. She has been in surgery for about 2-3 hours now and I just received an update that the colon was removed and that she is doing awesome. I will be sure to update this after she is done and a little bit of her recovery. We are excited to have our sweet, energetic Melissa back. Thank you for all of your support and prayers. We wouldn’t be able to do it without the support and love from family and friends. 

**Update**
She just finished with surgery and will be in recovery for the next hour. The doctor said that everything went awesome. He explained that they make about 3 small incisions. 1 to connect the intestine to and the other couple for drainage. In some situations they have to make a bigger incision (about the size of a hand) but he said that wasn't necessary. Melissa was very concerned about scars and her stomach. She had me take this picture this morning to make sure she had a picture of her stomach before it was scarred. 

Melissa had the chance to call and talk with a lady who had the same surgery done by the same doctor. Melissa brought up the fear of having scars on her stomach. The lady told Melissa that before he did these types of surgery he did plastic surgery reversals so he was very good at keeping scars to a minimum. She was pretty happy about that. He showed me the pictures of the colon and said it was very inflamed so it's a good thing we had it removed. If we get the pictures we will have to post them. He said she will be sore but should try to get up and walk today to help the process. 

The Big Decision

The BIG Decision

            It is now March of 2015 and I felt it was a good idea to recap a couple things in case I missed any important information. Since 2012, Melissa has been taking Azacol, Mercaptopurine, and occasionally Steroids.  From 2012-2015 she has had multiple flare ups and quite a few hospital visits. She had a situation where she was experiencing excruciating migraines. She was admitted to the hospital to figure things out and they weren’t giving her, her medicine on time. This caused her to have an even worse flare up and they suggested another colonoscopy thinking she might have CMV which is a bacterial infection in the colon. This was scary because for a time in the hospital she had short term memory loss and couldn’t even remember the name of her kids. We were blessed that everything returned and she was able to go back to being the sweet Melissa we know.

            

           She continued to struggle being out of remission and fighting so hard to get back to being healthy. She started on an infusion medicine called remicade. This is something that her GI doctor said was the last hope. She started receiving the infusions and actually showed signs of improvement for about a week. I had switched to part time for a while at this point and now that she had started feeling better I switched back to full time. This had happened once in the past and the curse continued. As soon as I switched to full time she started having blood in her stool again and started feeling very sick. She tried another infusion and it didn’t have the same affect. She had another colonoscopy done and her GI doctor said her colon was the worst he had ever seen with UC. As you could imagine, not exactly the news we were looking for. At this point he was pretty adamant that surgery was the only option left and suggested a couple of surgeons to go see. We met with a woman and went over the information and Melissa left feeling very nervous and scared. She wasn’t thinking surgery was going to be the option for her. We decided to meet with another surgeon and we had a much better experience. At this point surgery became a serious consideration.

            

              Melissa was putting a lot of thought into this and decided to reach out for some advice. She joined a Ulcerative Colitis Facebook group and found a lot of comfort in it. She asked a lot of questions about the surgery and advice. She received an overwhelming amount of comments and support. It actually gives me chills thinking about but she received probably 20 to 30 remarks from people who had done the surgery and not a single one advised against it. They were all so happy that they were able to be healthy and happy again. They didn’t have any more fear of the pain and the urgency to run to the restroom. Melissa always hated the fact that if we were going out somewhere she had to make sure she knew where the restroom was at all times. These are some of the little things that a lot of people probably don’t know goes on with someone with UC. Melissa is terrified that she might end up in a situation where she is out with the kids and has to run to the bathroom taking both with her. She doesn’t have the pleasure of eating the things that she enjoys because it makes her feel so much worse. She looks forward to the day she can eat a steak and a salad again. She loses sleep over the thought that she can’t be a good mother because she doesn’t always have the energy to play with the kids. These are some things that often bring her to tears but she always does so well not to show it. She fights through those thoughts and amazes us that she is still able to be the best mother.  Thinking that she would never have to worry about having an accident, or running to the bathroom 20 times a day, is just another check on the list which was making her consider surgery. She would be able to eat what she wanted and not have to take the 9-12 pills every day that are probably harming her body. 

 

 

(Here is a picture of the medicine she had to take every day and the exact alarms she had set for them. She is looking forward to when she doesn't have to do this anymore. )

These were some of the things that other people were pointing out to her and she started tosee the positive. Her biggest fear was that she was going to be stuck with a bag. If you aren’t familiar with how the surgery works, they remove the entire colon. They then make a stoma in the abdomen and attach the small intestine to it. They also create what is called a j-pouch. This is all done with the first surgery. The j-pouch is basically where they create a new rectum since the other was removed. After healed from the first surgery they then go back in and connect the small intestine to the j-pouch so it was working almost the same as before with a few differences of course. The small intestine connected to the abdomen was the part Melissa was terrified of. I’m sure that no person plans on having a bad attached to their stomach where their bowel movements move out of. The reason she was so concerned is there is a small chance that something goes wrong and you would have to have the bag for the remainder of your life. This is something that a lot of the supporters mentioned. They stated that even if they had to keep a bag for the rest of their life it still was worth it because they had their life back.

            

             February of 2015 Melissa made the decision that she was going to have the surgery. She wasn’t getting into remission, the remicade was not working, and this was her last resort to finally feel better. We prayed a ton to make sure this was the right step for our family and we gave Melissa blessings to help her better her decision. She scheduled the appointment with the doctor and we sorted out the plans for her recovery.