The Person Who Saved My Life

Dr. Maricek and I at my first after surgery check up 

Dr. Marecik...he is THE MAN. I can't explain how lucky I am that he was the one assigned to my case when I was first admitted to the hospital in February. At that point, surgery was not even being considered but he still came to my room every day and explained things in a way that my other doctors did not. He easily could have done surgery in March when it was originally scheduled but he said it was too risky. He wanted me to gain weight and get nutrition through an IV so that I could be strong for surgery...he loves to call it "Beefed up." There were numerous times I called him in the middle of the night and on the weekends and he called back right away. He dealt with my crying and fears and he always reassured me that I was strong and I could fight this and make it through. He waited until the perfect time for my surgery. I was pretty healthy and had put 10 of the 30 pounds I lost back on. Surgery took him 4 hours but he said it was the best work he's ever done.

I saw him this past Friday for my follow up appointment. When he walked in the door he yelled, "Here's Trouble!" He was very impressed with my recovery progress. He answered my long list of questions (I always ask him a million questions that make us both laugh). One of the most important questions was when could I have a drink? He replies, "Get drunk this weekend, I think you deserve it."  So like a good patient  I had to follow doctor's orders this weekend :)

Dr. Marecik has saved my life and my intestines and I will forever be grateful for that. He is not only an amazing surgeon but an amazing person. I recommend him to anyone who may need surgery in the future. He is one of a kind.

http://chicagocolorectal.com/about-us/slawomir-marecik-md.php

I didn't think surgery would be the easy part..

Last Wednesday morning, I was up bright and early and ready to get the devil aka Crohn's cut out of my intestines. The wait was finally over. Surprisingly, I wasn't really nervous, I think I was more excited. I mean could it get any worse? Probably not. When I saw my surgeon before the operation he was happy and peppy, all ready to go for his first surgery of the day. As he left he told my parents, "I'll see ya outside in a couple of hours." He then looked at me and said, "I'll see you inside." My response as I burst out into laughter, "literally." I thought it was a pretty funny joke...he just awkwardly laughed and walked away.

Looking damn fine before surgery

When he got out of surgery, my parents described him looking as if he had just fought in a war. When they got into my intestines, the docs realized my Crohn's was not just in my small intestine but it had spread through most of the right side of my colon, so they took that out too. The operation took a little over 4 hours and from what I hear was pretty difficult, but everything went great. I don't even really remember being in the operating room at all. I woke up and was a little out of it but not what I expected. The hospital did not have a room for me so I waited in post-op for almost 6 hours..so annoying. After I was put into a room, I was greeted by family and friends. The nurses did not wait any time to get me up and into a chair. The next day, I was eating a full liquid diet, walking around, and climbing stairs. I also FINALLY got to eat...MASHED POTATOES. They were the best damn thing I've ever tasted. I couldn't believe it!

Let's keep our fingers crossed that my belly button looks normal when it heals and that my hair stops falling out..or I may have a panic attack. 

By Friday afternoon, I was on my way home. WHAT?! I thought I would be in the hospital all weekend. This was awesome! Being at home has had its ups and downs..
Positives: Food, food, pain meds, food, sleep, relaxation, showers without wrapping tubes in garbage bags, not changing your iv every 12 hours, not cleaning your drain twice a day, netflix, Live with Kelly, and food.
Negatives: pain, being stuck in my bed and not being able to get out of it without help, pain, and yep thats about it.

It's crazy how taking a shower or walking up and down the stairs makes me so tired but I am embracing this recovery journey and taking life a day at a time. I don't know what I would do without my family and friends for their support and ability to make me laugh during such a "crappy" situation. I cannot wait to really celebrate with them!

I'm going to end this post with a quote that I read while in the hospital. It really resonated with me and my journey. Every day is a gift, whether it's a good day, bad day, hard day, or easy day, you just have to keep fighting. As days go by, my pain gets a little less and my mobility and energy gets a little more. Cheers to the days ahead!

4 Months, 5 hospital visits, 55 days without eating food

Waking up in extreme pain...something that sadly I am used to. On this morning in February, the pain I was experiencing was something I have never felt before. Long story short, I was in the hospital for about 5 days and they found an abscess in my small intestine. They put me on antibiotics and I went home to rest for about a week before going back to work. As I left, I was happy that the problem was solved and was confident that this was just a little hiccup and my life would go back to normal. Boy...was I wrong. 

Therapy dog that visited during this hospital visit. 

After about a week at home, I went back to work. I am a special education teacher at the best school with the best co-workers that I am lucky to call my friends. Thankfully, they are super understanding of my condition and I am forever grateful for that. I know many people with Crohn's do not get the support that they deserve at work and that is really not fair. I went back to work and tried to get my life back in order. The fatigue I felt was taking over my body. I could barely make it through the school day. That same week, I started to have trouble walking...I could not lift my right leg to get up the stairs or get into my car. After getting an MRI, another dumb abscess formed and it was on my small intestine but also hitting my right hip and causing all the pain walking. I was admitted back into the hospital to get a JP drain put in. This is where it all goes downhill fast...I get to the hospital and get prepped for the procedure with the interventional radiology nurses. Let me tell you, Lutheran General Hospital has the best IR team. Those nurses are the BEST nurses I have ever had in my life. I was lucky for that. The doctor performed a CT scan to find the abscess so he could put the drain in the correct place. He then explains he can't really see it so I have to drink contrast before the procedure. You know how you're not supposed to drink any liquids before a surgical procedure? Well since I had to drink the contrast, I had to be AWAKE while they stuck a long wire and tube into my abdomen. I have NEVER been in such pain in my life. I felt almost everything and I really thought I wasn't going to make it. The doctors took fluid from the abscess to get it tested and it turned out that there was a severe bacterial infection going on that was very dangerous. The GI team had to get the infectious disease doctors involved, those doctors did not know what the bacteria was so they had to send the sample to a special lab to get results. The results took 3-4 days so I was stuck in the hospital waiting...turned out to be some super bad bacteria and yeast infection floating around in my intestines that started leaking through an opening in my small intestine caused by the Crohn's. The doc also found that I built an immunity to my liquid gold...aka Remicade. It was a sad day. The infectious disease doctors were very worried about me getting sick so I was literally on house arrest for a month. The only thing I could think was "a month away from my work and students?! NOOOO."

The JP drain from hell..I named him Igor

After being home for 4-5 days, my drain was not draining anything. I thought this was a good sign! Then when I went to flush the dumb thing, it was not letting me flush it with saline. IT WAS CLOGGED. Noooo! I opened the bandage and let me just tell you, it was gross. Everything that was supposed to be draining into the drain was draining out of the incision they put the drain in. COOL, back to the hospital I go. The IR nurses laughed because I was back for a new drain. At this point, they all know me by name. I should be a regular at a bar, not at the IR wing of the hospital...but this is my life, so I just have to go with it. I got a new drain put it with a bigger tube. Thankfully, they sedated me this time. Three days later I go home. When I get home, the drain is not draining again, AGAIN! Seriously?! So back to the IR nurses I go. There was a wire inside the tube that needed to be trimmed. The nurses trimmed it and I went back home. Let me tell you how painful this drain was. I couldn't walk and worst of all, I couldn't sleep. I am a person who sleeps on my stomach and side. This drain prevented me from that and I could only lay on my back. IT WAS AWFUL. Everytime I tried to lay on my side, the pain was unbearable. While I was trying to fight this infection, I was also trying to gain strength to have surgery. Since my Crohn's has gotten worse and has spread, the surgeon decided I needed to have an ileocolostomy (basically cutting out a part of my small intestine and putting it back together). I needed to fight off this infection so while I was stuck in bed I was trying to eat, eat, and eat. I was drinking 2-3 boost shakes a day. You'd think I'd gain weight right? Nope. Over this period of time, I had lost almost 30 pounds in a span of a couple weeks. I looked like a skeleton. I went back to the surgeon for a follow up appointment, and he told me I was malnourished. Back to the hospital I go to get a PICC line put in. I cried. I cried a lot. How in the world am I back at the hospital again? I got the PICC line put in and was officially taken off food and now was getting nutrition through my PICC line. This was probably the lowest point of this whole ordeal. I felt tired, hungry, and alone. I wasn't alone at all. I am blessed with the best family and friends who have been AMAZING to me through this whole thing. When food is taken away from you, you lose a piece of your life. You don't realize how much of life is revolved around food. What do you when you go out with friends? Eat and drink. What do you do at family get togethers? Eat and drink. What do you do three times or more a day? You guessed it...eat and drink. Now I was on my way home on Easter Sunday. I also found out I would be having a nurse come to my house weekly to help me with the IV. In a couple days, I felt like I was a nurse. I gave myself all my meds through my iv line all by myself! Not going to lie...I love my PICC line. I don't have to get poked a million times before they find a vein...so much easier.

Let the countdown to surgery begin! Surgery got moved to May 18th.  

If anyone has a PICC line, buy this cover. It makes showering a million times easier.
https://limboproducts.com/
(I can't guarantee you will feel as sexy as the ladies do on their website haha) 

Alright, I'm not writing a novel let's get to the good stuff. Right now I have not eaten in 55 days and of course I miss food...how could I not? This past week, I was able to attend an after work happy hour. I was able to have fun with my friends without eating. I was able to have a glass of wine without eating. For the first time in a long time, I felt like a 25 year old again and I did not need food to help me. Before I was so angry that I could not eat. I would get mad if someone talked about food or ate infront of me. Those days are over. I am a fighter. I am strong. I also do not need food to make me happy...but I CANNOT WAIT to eat some McDonald's chicken nuggets. 

Tomorrow I am having surgery. I never thought I would be excited to have surgery but I hope and pray that this is the last step to get some relief from this stupid disease. I know recovery won't be easy but at this point, I feel like I can get through anything life throws at me. I recently started a new Crohn's medicine, Entyvio. I have had two infusions and feel great! I have gained ten pounds back from my synthetic nutrition.  I hope that once I start eating food, the Entyvio continues to help keep the Crohn's away. I can write about this all day, there are so many little stories I want to share from the past 4 months, but I am going to save those funny stories for another day. 

Today was my last day cleaning "Igor" the drain from hell. I am not going to miss doing this twice a day.