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.