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. 

First Major Flare

First Major Flare

            We now jump forward to 2012. As stated in the previous post, Melissa had been in remission for 2 straight years after being diagnosed. Unfortunately things changed and she became very sick very quickly. After she had her flare, she did move up her dosage of the Azacol in hopes of getting back in remission. This didn’t seem to do the trick, so she started taking Mercaptopurine. We were a little hesitant just because of the daunting side effects (such as cancer). We decided it was needed so she started on that as well. She still was not feeling well and losing a lot of fluids and having a lot of blood in her stool. She was losing a lot of weight and didn’t have a lot of energy for anything. We specifically remember a day where she was awake for about 2 hours. We also think back to the numerous ER visits to get fluids. The doctor then decided to start her on the dreaded steroids. Don’t get me wrong these drugs do the trick and they help out a ton, but along with getting Melissa better her face started puffing up. This of course is one of the side effects of the medicine and the main one that Melissa was concerned about. I tried to put the picture of her on here but she refused. It honestly looked like she was wearing a fat suit. She had this little tiny body and then bam she had big cheeks and a double chin.

            

            All of this was going on and lasted for about a year.  She was able to get everything under control. At this point we moved into the year of 2013 and she was doing pretty good and steady. In May of this year we received some pretty exciting news. Melissa was PREGNANT! We had been trying basically since she had started feeling better and we weren’t having much luck. It took us quite a while to get pregnant but that’s a different story. We had done it and we were expecting to have our little boy. Like I mentioned in the previous post Melissa is unlucky so while pregnant she had a couple of complications including a rare disorder called cholestasis. This is where her gull bladder doesn’t get rid of the bile’s fast enough so she gets very itchy. Yes it was quite strange. We then had our son early, at about 29 weeks and he was born at only 2 pounds 4 ounces. This also is another story, but it was the scariest most challenging experience to date. This blew the UC out of the water. Just as a side note we almost lost him the day he was born but now he is a healthy (wild) 2 year old and luckily he has no health issues!

While being pregnant we were terrified that Melissa was going to get out of remission, but we were lucky enough that she stayed healthy! The doctor said that he had seen where pregnancy could sometimes help the condition and avoid flare ups. Lucky us, we found out we were expecting again the following May. We now have learned to have extreme caution in this month. I forgot to mention that we had visited a infertility specialist while trying to get pregnant and we were told we had a 4% chance each month to conceive. When you consider that number we thought we would be fine after we had our first. We thought this little guy was a miracle all around and 4% chance, c’mon there is no way. Well it happened. Melissa was basically pregnant for 2 straight years, obviously a little shorter given the early birth of our son. Following in the footsteps of her first pregnancy, she remained healthy. We have always felt so blessed that we didn’t have to worry about this while our children were growing and developing our 2 little angels. Melissa jokes that I have a ticket into heaven because I have dealt with her sickness and all of this over the last couple years. I constantly remind her that we are in this journey together and it’s just a part of the plan for us. What she doesn’t know is that I know that she has a ticket into heaven because of all the trials she has had to deal with. She has had so many unfortunate, unlucky things happen to her over her lifetime. I have never met anyone so resilient, so courageous, and so caring. The majority of people would find themselves in doubt and in a dark place dealing with what she has. She stays so strong and relies on her faith and her children to keep her positive and loving. It’s quite amazing and reminds me why I decided to marry this person. 

The Diagnosis

The Diagnosis

Melissa was diagnosed with Ulcerative colitis in 2009. As you can see she was very young,

Oh and gorgeous. Melissa had some family members with IBS and figured that maybe she was experiencing some of the same symptoms. The first time she had blood in her stool was a shock and we immediately went to the hospital to make sure she was doing ok. 

Just like any hospital visit they asked millions of questions. They settled on Melissa meeting with a Gastroenterologist and having a colonoscopy. She met with her GI doctor (who she absolutely loved) and we had the procedure done. The results came back and in fact she had Ulcerative Colitis. Obviously we were oblivious to what this was or meant. The GI doctor suggested going to a conference on Ulcerative colitis so we did. When I say we I'm meaning Melissa, her mother, and myself. For information purposes I am Melissa's husband. At the time we were just dating and getting to know each other. I had the opportunity to go along and see what this was all about. Melissa has never been the lucky one when it came to health. If there is some weird, rare condition out there, chances are Melissa has experienced it. This was not something that Melissa was excited about dealing with but it was there. 

She was obviously showing symptoms for us to even be in this situation so this was her first experience with a "flare up" or being "out of remission". When you are brand new to this experience it can be very overwhelming and scary, and to not forget, exhausting! Her GI doctor started her on Azacol and luckily she had great luck with it. She has never been someone that takes a lot of medicine so she was actually taking half of the dosage that the doctor suggested. He was quite amazed that even on a lesser dosage she was able to get into remission so quickly and stay that way. She was taking this and remained in remission for 2 straight years. We were thinking that this wasn’t going to be so bad.

Melissa was able to finish up her hair school and receive her license. We were able to get married in August of 2010 and we started looking toward the future.