One Year Post Surgery!

A year = 365 days = 8760 hours = enough time to reflect and appreciate how far you've come. Today marks one year since the surgery that saved my life. I have done a lot of reflecting over the past few days. Sometimes when I think about where I was a year ago, there is nothing else to do but cry...happy tears of course :) This time last year, there were a lot of could nots: could not eat, could not move around a lot, could not work full time, could not go out, etc. etc. all while being attached to tubes, drains, and ivs. As I am sitting here writing this today, I cannot help but be shocked at how drastically my health and quality of life have changed for the better. This year has been filled with so many great moments especially being able to travel again- Mexico, Tampa, Atlanta, and New Orleans were all checked off my travel bucket list this year!  I am dedicating this post to my reflection of this past year (good and bad) and the goals I have for the year to come. 

Over the course of the winter, I had a little scare. I was experiencing lots of pain after eating. I was terrified...after a colonoscopy, the doctors decided that I needed to have a procedure where a balloon would stretch the lining of my small intestine. GREAT....another procedure, just what I wanted. As terrified as I was, this procedure helped tremendously. My entyvio treatments were also increased to every 4 weeks instead of every 8. Since January I have been feeling really good (knock on wood). I am still struggling to figure out my diet(what I can and cannot eat) and balancing my weight. At my sickest last year I weighed 112 pounds. My normal healthy weight is around 135 and I am currently around 144. I have been working out a ton (shoutout to Fly Girl later in this post!) but eating foods that are not carb heavy has definitely been a struggle. One of my goals this year is to figure out a healthy balance of food that won't make me sick. To my Crohnies- what has worked for you? What dieting/food advice do you have? 

Trying not to freak out before the balloon procedure...

Another way my life has changed for the positive was starting at FLY GIRL!! A huge shout out to Kelly Russ for getting me to a buy a groupon for this amazing place. Over the course of this year, I have become a Turbo Kick junkie, thanks to Natalie, who is a kick ass motivating instructor! I have been lucky enough to get to know her as a friend, and she has played a huge role in my journey to better health and balance. I have met many amazing women at Fly Girl who have now become friends. Fly Girl has also given me opportunities to push myself out of my comfort zone and try new things...like instructing part of a class and being on stage at the Chicago fit expo. This is a one of a kind place, and I am sooo grateful to workout here!

This past year has been a whirlwind of EVERYTHING. Gains. Losses. Good. Bad. but I have learned so much about myself and how strong I am. Some days are great and some days I am a hot mess just trying to make it through. I always try to remind myself that nothing can be as bad as last year was. If I can get through that...I can get through anything. This year I have taken the time to spend time with my family and friends and I have tried to enjoy every single moment of every day. I have taken lots of time to strengthen my body and mind-physically and emotionally. I still am overwhelmed by all the people I have met through this blog who are or have gone through similar struggles. Finding people that understand Crohn's and feel what you feel is so important. It has helped me and I hope that anyone reading this can find some kind of comfort in that things DO get better. 

I am ending with a couple things. First of all....an after surgery picture and a current picture of my incisions. One year ago I was afraid that I would not have a belly button and scars all over my (ab-less) stomach haha. I still don't have abs but I do have a belly button!! Woohooo! **If you are able to have an  ileocolic resection done laparoscopically....do it!

I wanted to share a few of my favorite memories from this year. I had trouble picking all of my favorites! My family and friends have been nothing but amazing through all of this craziness and I am forever thankful for that.

 

My goals for this next year are to...

1. continue to improve my health and diet

2. have more time for fun and adventure (now that I finished my master's degree!!)

3. use my experiences to help others

Cheers to another great year ahead! 

xoxo

Gossip Girl

just kidding..

-Steph 

4 months post surgery and LIFE IS GOOD!

It's been a couple months since posting and honestly it's because I have been so busy living life! It is really amazing how your body can bounce back and life goes back to being completely normal. When I think about how sick I was and what I went through just a few months ago, it feels like a dream. I have been inspired to write again because a few followers have reached out to me and asked why I haven't posted all summer. Honestly, I didn't really think people went to my blog to look for answers, inspiration, advice, etc. but I guess there are people out there who do! The whole reason for this blog was to 1. let me vent about all the "shit" going on in my life and 2. to try to reach anyone who needed to hear my story to help them. It makes me sooo happy that my story is actually helping other people. I also love connecting with others who know what I am going through.


I got a message from someone who read my blog and her message is why I am continuing to post. "You are a fabulous blogger, I hope you start again. I really appreciate how honest you are about how Crohn's affects your life in more ways than one. You talked about having to miss out on events and feeling young, and that's exactly how I've been feeling. You also talked about people leaving and I can relate to that so much I want to sincerely thank you for writing so honestly about all of that, it really made me feel better. Us Crohn's girls need to be with people just as strong as us."

This message really pulled at my heartstrings and pushed me to get back on the blogging horse! She too is going through a very similar situation to mine- hasn't eaten for a long time and is looking into getting surgery. I know how awful it can be and I really hope all goes well for her and she has an outcome like mine! I am lucky to have a gained another Crohnie gal pal through this blog.

Latest Update:
For the most part, I am feeling great and eating pretty normally. I am working out 4-5 days a week and have way more energy than I've had in a long time. I am still figuring out what I can eat and what I can't, but I am able to eat salad every once and awhile and let me tell you....it tastes so good! Most importantly, beer and wine don't bother me..thank god! :)  I still have pain here and there and I don't think that will ever go away but any bad day now is a cake walk compared to what I went through. I still have my annoying Crohn's moments here and there, like when I am fishing on the boat with my dad in the middle of a lake and out of no where you really have to go... those moments still happen and I don't think any surgery can fix that. Laughing is the best way to deal with this disease, because at the end of the day, poop can be pretty funny.

 I still am staying away from high fiber foods, seeds, nuts, and a lot of raw veggies. It's hard to eat healthy when your options are limited but I am trying my best. I am finding that it helps to take the skin off of fruit like apples, peaches, nectarines, plums, etc. before eating them. I have cut out a lot of my dairy intake and only trying to eat a small amount. I switched to drinking almond milk and using coconut oil for most of my cooking. It seems like these little changes are helping reduce symptoms and helping me feel good. If anyone has any other dieting tips or helpful things they are doing please share!  I am having my 5th Entyvio infusion next week. This medicine has been working great so far and I don't really have any side effects that I can notice. I also am taking imuran, a probiotic, fish oil, b-12 shots once a month, and iron 3 times a day. I have also read about turmeric and its anti-inflammatory effects. Has anyone taken this and seen positive results?

Summer has sadly come to an end. This summer was really amazing and I had so much fun. I am so thankful that I was able to travel to Mexico with my girlfriends, go out with family and friends, and be able to enjoy a drink in my pool. The school year has begun...teaching, tutoring, and 2 grad classes are keeping me very busy. This year I am way more conscience of my stress levels and trying to do things to keep them down - working out, yoga, and different relaxation techniques are really helping me to do that. I am really looking forward to fall this year! Bring on the football, football party food, yoga pants, sweatshirts, and pumpkin spice everything! I'll keep trying to kick Crohn's in the ass, one day at a time.

Keep on keepin' on everyone.


-Steph

I didn't know life could feel like this

It's officially been a month since my surgery and I honestly could not feel more amazing. For the past 6 years, every time I ate anything or went to the bathroom my stomach hurt. I can proudly say I have not had one stomach ache in the past 4 days. I don't remember the last time I felt like this. If anyone reading this is considering having resection surgery or considering taking Entyvio, I would say do it. I have no idea how long feeling this good will last but I would pick 5 amazing days over 6 crappy years any day.

This was two weeks after surgery, my incisions don't look too bad right?!

Last week I had my third Entyvio infusion post surgery. No side effects or reactions. I noticed a positive change right away. Thank god! I know many have had successes on this treatment but I also know that many have failed on this medicine as well. Doesn't it suck that one medicine can't treat all? Not fair. I am just enjoying every good day I have, one day at a time.

These past months, I've also had to do a lot of soul searching. This disease is isolating. Whether we like it or not. It tests my patience and it also tests the patience of the people in your life. You feel lonely, a lot of the time. Sometimes you have to miss out on big events, fun times, and just everyday life. The worst feeling is when people you thought would be by your side through it all, just leave. Without a word or explanation. I can't help to sometimes think that it was my fault. Maybe everything that comes along with Crohn's was too much for them to handle? Maybe I was not trying hard enough? But then I remember that I was fighting for my life. I had a battle to win and goddammit I was going to be triumphant. For once in my life, I had to be selfish. I didn't have time to worry about what was going on in the outside world. I had no time to worry about if people weren't being truthful to me. All my energy for the past 5 months has been focused on myself...getting myself healthy again. It was painful and the hardest thing I've ever had to do. After this experience, I've realized that everyday is a precious gift. You have no idea what is going to happen tomorrow. With that being said, I have made a promise to myself that I will not waste any one of my good days being sad about things I can't control. This disease is literally the worst but it has shown me who "my people" are. It has given me a sense of confidence I didn't have before. If you are fighting this disease and have had experiences such as this, you are not alone and it's okay to be selfish. It's okay to listen to your body and do what you need to do to make yourself feel better. It's okay. 

               

The other night, my co-workers, actually my friends, okay actually my second family made a dinner to celebrate the little fact that I could eat again. It was the most thoughtful thing anyone has done for me in a long time. We got to celebrate life together, and that was amazing. 

Food and Fellowship, life's simplest pleasures 

I end this post with another quote. If you haven't noticed yet, I love my quotes. Not only does this blog help me vent and process my thoughts but I hope that is able to help someone else. Even it if helps just one person, that is worth it for me. 

Cheers to life! 

-Steph

                                         

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.