One Year Later - Here's My Story

It's been one year since I had the surgery that changed my life and saved me at the same time. I haven't had the courage to go deep into what has happened until now so here I go... 

People assume that since the thing that was causing me so much antagonizing pain was removed from my body, everything should be fine. I should be happy, I’m "healed". Unfortunately that isn’t exactly the case... Trust me there is nothing more I want than to feel 100% and to be happy that the nasty part of me that was slowly killing me is gone... but if I’m being open and honest with you, my heart mourns that part of me. I know that sounds ridiculous. My colon was awful, it did anything but help my health but you have to understand... I spent 5 years filling myself up with medication after medication, getting infusions, injections, scopes, transfusions, shot after shot... appointment after appointment, test after test... to save something that ultimately ruined a huge part of my physical, emotional and mental health. I did everything. After five years of constantly fighting my own body, after being promised remission and after begging God for a medication that would last... the only thing they could do was to remove it completely. Now please don’t get me wrong... I’m glad it’s gone, but believe me when I say I wish one of those medications would of worked. The side effects alone caused more harm than good but I’ll get into that another time. 

Five and a half years ago, I was told that "medicine is evolving everyday", "there are people working to find a cure, and it could very well pop up tomorrow". I was young, I know they were saying what they did because I could only imagine how terrified I looked but there comes a point in time when you believe too much into what they say and count on a cure when in reality who knows how close they are to getting one. I downed all the pills I was supposed to. I went to my iron infusions. I read the possible outcomes to medications. I cried. I prayed. I cried some more. Then I agreed. I went on remicade. I sat in a cold room, in a big chair and I had medication slowly drip into my body for multiple hours every 6-8 weeks. Some weeks the treatment lasted 4 hours. Some lasted 9. Days dragged on. I did it for a year. I went to those appointments for a year and then my body built up antibodies against the medication. I did more tests. I had more scopes. I sat in more appointments. I read more possible side effects of another possible medication. I prayed. I cried. I agreed. My now husband did Humira shots in my thighs every other week. 2-4 shots. Pain. Crying. Done. Did this for about a year until my ability to get the medication free instead of spending thousands of dollars a month came to a close. I was off the medication for a while because honestly things weren’t great. Remission wasn’t as promised. Pain continued. Blood loss increased. So did anemia. 

February - July of 2017 was the healthiest I had been physically. I worked out daily, ate healthy and lost 20 pounds. August of 2017 things took a turn for the worst. I began Humira again, this time getting on a scholarship where it would only cost me $5, praise the Lord but unfortunately my body was way past the ability to be saved. I was taking care of my body. I was only putting good healthy foods in my stomach and I was incredibly active. I thought life was looking up. Instead my immune system had another idea. 

My body started to shut down and destroy itself at the same time. Humira was a big fat no. Did absolutely nothing, just like I had thought. I prayed for a miracle. Nothing. I was in the hospital for a week where they did another scope and found (SHOCKER!) my colon/intestines were incredibly inflamed. No duh, I could’ve told you that! I was put on a large number of medications for the pain and steroids for the inflammation. Yippee. Not. The steroids I was put on were my absolute nightmare. Again, I’ll get into that later. They sent me home and about a week and a half of bed rest, pain and not eating later, I was headed to the ER. This time, a different ER. Ended up being the biggest mistake ever. I was seen after what felt like seven hours and then the nurse shot in both arms with medication and told me to drink something that would numb my insides and subside the pain. I tried getting the drink down but after the shots something did not feel right. They tried shoving the drink in my face when I started to black out then BAM, I did. Let me tell you though, this wasn’t a oh she fainted get her some water type of deal... this was a call all nurses/doctors on the floor she stopped breathing type of thing. I vaguely remember waking up to James rubbing my chest hardcore and to a mask on my face. I then proceeded to black out again and stop breathing... woke up again, tons of people standing over me as I lay helpless with a man pumping air into my lungs to get me to breath on my own... blacked out. I’m not sure how many times that happened but I don’t like thinking about it much. Not my shining moment. Once I was back to breathing on my own, they gave me the drink and 20 minutes later, sent me walking out the doors to go home. Can you believe that? I mean if not breathing wasn’t enough, no pain was gone. In fact everything felt worse. I don’t remember much more of that night because everything was so horrible but I do recall my family saying I couldn’t even get up the stairs so where I ended up that night, I can't say. 

Fast forward to two days later, we finally got a hold of my doctor who by the way I hated with a passion during all of this because he was impossible to get a hold of and I felt like I was withering away to nothing. My dad talked to him and I mentioned while they were talking that my stomach felt really big. I hadn’t eaten, I wasn’t bloated... something was off. My dad told my doctor and he told my dad that I needed to go to any hospital as soon as possible because it could be toxic mega colon. Don’t ask me what that is because I don’t know. I was just like "oh now it’s something worth figuring out... got it." Bitter much? Yup. 

My parents planned to take me to a hospital in SF but I couldn’t last in the car that long. I cried and screamed the entire way and was taken to emergency at Santa Clara Valley Medical Center. I would usually be like "no way, let’s go somewhere else" but I was in too much pain to care at this point. This had gone on long enough. I needed help. I needed relief. They took me back and started to get me ready to run tests. Tests that I already knew the outcome from. I could tell everything had only gotten worse. I could tell that no medication could possibly do any good at this point. I went into this hospital visit knowing that surgery could be the only thing that could solve this issue and relieve me of any pain. I had no idea what the surgery was, I just knew I needed relief and I needed it now. 

They ran their tests, they poked me with needles, they put me on a strict nothing diet and as I laid waiting for CT scan, X-ray and blood results, I cried. I continued to experience the worse pain I had ever felt. I screamed. I begged for a wet rag to suck on because I was that thirsty and I prayed to the Lord to let me have just a moment of relief. Pain meds were garbage to me because they did nothing to help, nothing. After what felt like hours of back and forth pain med after pain med that just seemed to make things worse, my doctor stopped by. Shocker, he actually showed up. Didn't hear from this guy for days while I was withering away but sure, he shows up and delivers some pretty crappy news. Although I am obviously still bitter over the thought of the doctor that very well could have prevented things from getting this bad, once he saw me crying and screaming in that closet of a room, he finally understood. It took him seeing me at my worst and reading my results for him to get just how bad things truly were. 

I don't quite remember everything he said, and to be honest a whole lot of the next week or so is a blurr but what I do remember is him talking to my parents and them starting to cry. Scared more than ever I think I calmed down a bit in hopes to hear what they were talking about. Like I had suspected, my inflammation levels had skyrocketed. My doctor said that my colon was one of the worse colons he had seen. They moved me up to an actual room and I spent the night in an area of the hospital that to this day I don't know where or why. I don't care to know honestly. I know I am not a child but I felt like one. I needed people to fight for me because I was too busy fighting my body for my life. They put me on pain meds and I remember not reacting well to one of them, again my mind is full of all the aching memories, I can't bring myself to remember which medications I didn't react well too... oh well, not important to the story. The next morning I watched the news, hospital televisions need to come with Netflix or something because I was constantly watching the most boring things but this particular morning I was watching The Today Show which I actually enjoy. Selena Gomez's picture popped up on the screen and if you know me, you know she is one of the only celebrities I care about enough to pay to meet and I've met her twice. Anyway, they were talking about her recent Instagram post and of course I hadn't seen it but it was of her and Francia Raisa in hospital beds, holding hands. Selena had opened up about her recent surgery where Francia saved her life and gave her a kidney, talk about an amazing sisterhood! With the talk of me having to have a major surgery this couldn't have come at a more perfect time. Selena to me is someone who carries herself with such a beautiful grace and shares her stories in her time. She is a role model of mine. I don't care what anyone's opinion of that is, but I simply admire her. The timing of Selena's post and of the news sharing about her post was something that I found to be God's way of telling me that everything is going to be okay. No matter what, God's got me and Selena's story just amplified and reassured me of that. When I met Selena she told me that God was watching over both of us, boy was she right.

That same day they switched me into a different room on the surgery floor which not going to lie, caused a bit of anxiety but hey I think that's a fair feeling. The doctors had me on the same steroids as before in hopes of still bringing down the inflammation and kept me on a strict ice chips only diet. So if you're keeping count, it's been weeks since I actually ate anything. For a few days they monitored me and ran more tests, all the while I was still in complete agonizing pain. This may be TMI but let's be honest, this whole post is one big TMI... the only position I was even the slightest bit comfortable was on the toilet leaning over all the way. It wasn't great but it gave me relief in the midst of the worst of it. I had roomates, which was anything but fun for me. The first woman had a large supportive family that was there from the beginning to the end of visiting hours and I loved that she had people there with her but man were they loud. Not to mention she snored way loud and even with headphones on I couldn't get any sleep! Who am I kidding though, it's not like I really got sleep anyway. At one point I did have the room to myself though and that helped my anxiety tremendously. 

A surgeon came and spoke with me and again, I don't remember much. His name was Dr. Adams and he was there to explain the options I had. Now I know I said I wanted surgery before but once I started to learn what the surgery actually was, I was terrified. He explained the 2-3 step surgery that would lead to me not having an ostomy bag forever but instead having a J-Pouch where they make your intestines into it's own little J to allow you to store your stool as close to "normal" as possible and then he explained the surgery option where I would have the ostomy bag forever... He gave me the odds having to return to a life where I again had an ostomy and I quickly decided to myself that having a forever ostomy bag wasn't what I wanted. He told myself and my parents the information and they asked their questions. To me I knew I had to do this. They made it very clear that this was the only way to receive relief and some sort of normalcy. The only question I had was if I could one day have children. He said more often than not women with a J-Pouch can get pregnant. It's actually more common for men with a J-Pouch to have problems with infertility. That was my only concern at the moment. I was still in so much pain, I didn't care much about what they did as long as they just did it. 

My surgery was going to be scheduled for the end of the week to give the meds a little more time to try and fight off the inflammation. On Wednesday morning my surgeon came into my room and said "How do you feel about having surgery today?" (Enter tears from my parents faces, and James too.) I wish I could tell you what my reaction was but honestly I can't remember. I do however remember bits and pieces of the hours leading up to the surgery. They immediately started getting me prepped by cleaning me and putting my hair into the most stylish hat you ever did see. I listened to a song on the way to the operating room and ever since, it's been my anthem. Sound of Surviving by Nichole Nordeman. If you haven't heard it, listen to it. You won't be sorry. Everything from there seemed to happen so fast. My family plus James (who lets be real, has been family for a loooong time now) walked alongside my bed as they rolled me down the halls. Once we got right in front of the operating room they all hugged me and I 'm sure prayed over me and watched the nurse give me what she called a "champagne shot" or something along those lines, basically it was going to make me feel real good. Not that I remember but I'm sure it did just that. My expressions leading up to going into surgery were apparently hard to read. My mom said she couldn't tell if I was scared or at ease or if I could tell much of what was going on. To be honest I don't know much of what was going through my head, but what I do remember was thinking that I had to be okay with this emergency surgery because there was literally nothing else that could be done. It was this surgery and that's it. I needed healing. This was my only hope. So I guess it makes sense why you can't read my expressions because I didn't really know what I should feel. Now much of this next part is again a blurr but I heard stories about what had been said so I'm going to do my best to piece everything together. The nurses had me sit up on the table and bend over to get the heavenly epidural, it didn't take long before the pain I had been experiencing for far too long had finally left my body, or at least that's what it felt like. I got what I begged for for so long, relief. I guess I told Dr. Adams that this was the best I had felt in years and boy do I believe it. After that, I don't remember a thing but in the next few hours, most of that diseased and disgusting colon was gone and they made me a nice (lies) little stoma that for the next several months would be sticking out of my stomach and be the source of how I used the restroom (number two, this was a common mistake. I was still able to pee normally okay...) cute huh? 

I semi remember waking up and my collar bone being in excruciating pain, like what in the world happened in there? We were in a room that I don't exactly remember what it was like but I do however remember that curtains were all that separated me from other patients. I heard coughing coming from a patient nearby and apparently kept checking on her to make sure she was okay. I also heard a nurse asking a patient if their ride home was at the hospital and assumed everyone in the room had the same surgery as me and we were all going home that day. Wrong. I was going to be there a while. Another week actually. Once I got back to my room there wasn't much I remembered other than pain and pushing the epidural button (praise the Lord). I saw my family and was so relieved to be around familiar faces in the midst of strangers in sterile gowns and face masks. 

From there on out recovery began. Now I won't go into that now because that is a whole other story and I'll save that for another blog post but man oh man. Recovery kicked my butt more than I could have every imagined. Again, that's a topic for another day but believe me when I say it was HARD. Surgery wasn't something I ever thought I would have to have. It's not what I had pictured for my life and certainly not an easy path but honestly as much as this time in my life destroyed me, God had a reason. Some days His reason isn't easy to and some days I wish things had panned out differently but in the end, God had a plan much bigger than me and much bigger than all of this. It doesn't mean that things aren't sometimes incredibly hard and painful but it does mean that no matter how hard and painful things get, God is with me through it all. 

September 20th 2017 is a day that brings up a lot of emotions for me because it's hard to relive the pain that led up to it and to admit how broken my body truly was but God is so good. He carried me through and I wish more than anything that I would've trusted Him more from the beginning. So many times I had begged the Lord to take me from the pain I was experiencing. Not because I wanted to die but because I thought maybe that was the only way to get the Lord to hear me and to heal my pain. His plan was much brighter than that. He just wasn't quite finished with me yet and I firmly believe that what is to come is so bright.

A year later here I am. Life still isn't easy and it's been a hard year of recovery and getting used to my "new normal" but a lot of good has come out of this. I want to say thank you to everyone who has prayed for and guided me through a time I thought I would never recover from. Each person who sent up a prayer for me has had an impact in this journey. If it wasn't for the support my family and I received I don't know where I would be. Thank you for thinking of me. I am forever thankful for the love and care I never thought I could deserve. God is so good. 

Forever a Warrior,

Taylor Collins 

PS. I will go in detail later my hatred with the side effects of my medications. It will be in the recovery update post coming soon.