Part 1of 2
Trigger warning! Graphic photos in this post.
4-6-17 In the very first photo, I have a horrible tooth ache and had no idea the pain and agony it was going to bring. It ultimately changed my life and for a very long time it was changed for the worse. In the photos following, you’ll see me change and look like death and then recover. You’ll see me living life to the fullest but behind closed doors or under my shirt rather, you’ll see how much I’ve had to overcome. This is my story.
On October 30th 2013, I had a colonoscopy and was diagnosed with Ulcerative Colitis(UC) which is a chronic inflammatory bowel disease(IBD) and an autoimmune disease. I was prescribed Canasa suppositories and my symptoms when away for about a year or so and then came back. I had to get a new Gastroenterologist doctor because my previous one had retired. He wasn’t much help anyway. My new GI doctor was amazing and caring and she saved my life. She prescribed me Lialda(NSAID) and Uceris(steroid).
At the end of March 2017, I had horrible tooth pain and called my dentist and they prescribed me Tramadol and Augmentin. The Tramadol made me sick so I called and had them switch the med and they gave me Clindamycin and that made me sick too. They gave me Hydrocodone and that also made me sick so they just had me taking Ibuprofen and Augmentin. I started to have a bad reaction to the Augmentin and got sores all in my throat and mouth and was throwing up and had severe diarrhea. I finished the antibiotic but went to the er because of the pain in my mouth and the vomiting. Mary’s magic mouthwash was prescribed to me to help with the sores and also nausea meds. The only time I was able to get any sleep was when this mouthwash numbed my mouth and throat. For weeks, I was unable to eat or drink anything nor was I able to take my UC meds and my heart rate was high. I went to the er multiple times during this whole ordeal because I couldn’t stop throwing up and all they would do is give me fluids and nausea meds then send me home. I went to an er and waited for 3 hours all the while throwing up with no end in sight and ended up leaving to go to a different hospital. On April 15th, I was pacing the house back and forth because I was miserable and didn’t know what to do. I didn’t want to go to the er yet again for them to just send me right back home. I remember I was pacing by the front door and my husband Issaac went to check the mail. I watched him and then started to say his name over and over because I felt like something was really wrong. Next thing I remember is Issaac kneeling over me and having shoes stabbing me in the back. I had passed out and my eyes were open the whole time but I was unresponsive. Issaac had ran in and thought I was dead. He called 911 and they wouldn’t answer. He used my finger to unlock my phone and dialed 911 and had both phones ringing and finally got an answer. (Fun fact for iPhones: if you press the big button on the side it will call 911 and they can track your location. Dialing 911 will not allow them to track your location.) The ambulance took me to the er and they did 2 EKG’s, CT scan(only after Issaac asked them to because I hit my head when I fell.), chest X-ray, and blood work. I was also tested for CDiff many times but it was always negative. Again, I was given fluids and sent home. They said it was normal for a lot of people to live with an elevated heart rate so they weren’t concerned. A couple days later I went to my primary care doctors office. My doctor was on maternity leave so I saw a different doctor. He did blood work and then wanted me to take depression meds. That was a hard NO! He said I wasn’t getting better because I was depressed about being sick. Yes, I was absolutely miserable and sad about it. BUT, there was something more going on. I wasn’t getting better and I knew it wasn’t my fault. I had to keep advocating for myself because I wasn’t getting help from any of these doctors I’ve seen. I think I went to the er again at some point and was sent home. Then they called me and said my potassium levels were too low and they didn’t think I’d be able to get down the prescribed potassium drink. So we went back to the er. Again. The er wouldn’t take the word of the doctor from another hospital so they did blood work again. We went to a different hospital because the wait at the previous one was way too long. So I received potassium through an iv and that is not comfortable. It burned as it went through my arm. I was also given Magnesium. I was sent home the next day.
Even though the sores were finally gone from my mouth, I was still struggling to swallow. I had my GI doctor schedule an upper Endoscopy which I had done on April 20th. My esophagus had no damage and there wasn’t anything stuck in there. While I was under anesthesia, my GI doctor did a Flexible Sigmoidoscopy. This a colonoscopy but only through a small portion of the colon. It was then that I finally, FINALLY after a month of being so sick that I was admitted to the hospital. My doctor said I looked like I was going to die. She said my colon was so severely inflamed that she couldn’t let me go home even though a patient being admitted after a procedure being done by her makes her look bad. She saved my life and I’m eternally grateful. I had 10 er visits and a scheduled dr visit and none of these doctors thought to have my colon checked knowing that I had UC and continued to show anemia in the blood tests they all ran. It all finally made sense. I wasn’t able to take my UC meds and I was taking 800mg of Ibuprofen for the tooth ache I had. This is what caused my UC to flare up. Why couldn’t 11 doctors put that together?
While I was in the hospital, I received 3 Iron infusions to raise my hemoglobin. I also had a speech therapist come in and she helped me with my throat issue. I was still struggling to swallow and she said that I was protecting my self subconsciously. She worked with me and I was finally able to swallow normally. I was so happy to finally eat a meal without a struggle. I was released 5 days later on April 25th even though I felt I should have stayed. The very next day I woke Issaac up because I was shivering and my teeth were rattling like crazy. My heart rate was 145. Issaac called 911 and we went to the er for the 11th time within a months time. I was put in the observation unit at Methodist which was in the basement because they didn’t have any rooms in the er available. I remember telling a nurse that I needed to go to the bathroom and I wasn’t allowed to get up on my own. She said ok and that she’d be back but when she got back, it was too late...She was gone for a long time. I at least was wearing a hospital gown. I was later put into constant care in the er. My heart rate had gone up to 180 and I was shivering and rattling teeth again. It was uncontrollable and the nurses looked at me like I was faking it. They hooked a heart monitor onto me and suddenly changed their tune because my heart rate was at 200. I believe they gave me aspirin and eventually I was transferred to another room where I waited for a permanent room because I was being admitted again. On April 28, I was admitted and I had another night of the shivering episode with my heart rate at 190. I’m trying to remember what this felt like but I can’t. I was so out of it and not even aware of my surroundings. It was on this day that our grass had been cut and it turned out to be our next door neighbor. We were very thankful for that.
A few days later, my heart rate was around 100 and my hemoglobin was much better. The diarrhea had slowed down so I wasn’t losing as much blood(because of UC) but I wasn’t eating either. I had iv fluids and they wanted me to drink Gatorade but my body was retaining fluids and I was swollen. That was a very weird experience. They did an Echo Cardiogram which turned out to be normal. My ejection fraction was 65% and 55% or above is considered normal. I know this is what they said but I don’t really know what that means. On April 30th, I received a blood transfusion because the retest of my hemoglobin showed 6.6 grams per deciliter and it should be for women between 12-15.5. A blood transfusion is scary. For the first 15 minutes, the nurse has to stay and watch me as I receive the blood to make sure I don’t have any adverse reactions and reject the blood. It turned out to be fine and I received at least a pint of blood. I feel I received another pint but I can’t remember. So I’ve been in the hospital for 10 days so far and I’ve been taking a steroid called Prednisone this whole time to treat my UC. I was also on morphine for the pain. I received physical therapy to help me walk but they were 3 days late. It turned out that there wasn’t an order for pt even though the doctors mentioned it every time they visited. On May 2nd, I was in severe pain and I went about 4 hours or longer without pain meds. The doctor was supposed to call them in and ended up leaving for the day without doing it. The next day, my bloodwork still showed inflammation so my colon wasn’t responding to the Prednisone. All the Prednisone did was make my head hurt sooo bad. I was taking Tylenol for it and it did nothing. My head hurt non stop for many days. I had warned them that Prednisone wouldn’t treat me right. I had taken it before and it made me so dizzy I had to have Issaac drive me home from work. This time it was just the severe head pain.
On May 5th 2017, I’m still in the hospital but I’m about to be released. For some reason my doctor was switched to a different doctor. This doctor decided to schedule for a colonoscopy. They gave me the bowel prep to drink with some clear Gatorade. This stuff was horrible. I’m supposed to drink it all within an hour and every minute of it sucked. I somehow managed to get it all down at the end of the hour. But then...I adjusted my body very slightly, and I threw it all up! I didn’t know it was coming and I had zero time to prepare for it. I just threw it all up all over my gown and in my gown and all over the blankets. I said to them, “I don’t understand why I have to do this. I have had severe diarrhea and I can’t even eat. There’s nothing in my stomach.” But they made me do the prep again... This time I drank it over the course of like 4 hours and managed to get it down without throwing up. I had the colonoscopy which they said went fine...I was still severely inflamed and they wanted to start me on a biological medicine called Humira and continue the steroids. During a colonoscopy, they insert a colonoscope into your bottom that transmits an image of the lining of the colon. The scope blows air to expand the colon so the doctor can see better. Well, after the procedure I was actually feeling alright but I had so much pressure in my belly and I felt like I needed to poop. I tried over and over to go on the toilet and it just wasn’t happening. But finally, it happened. And I was in bed...The nurses hadn’t been in for a long time and didn’t plan to be in for awhile. I was so embarrassed that I had Issaac clean me before they came in. Imagine a father changing a dirty diaper and gagging the whole time. This was Issaac and he kept running to the toilet afraid he was going to puke. To this day, we still laugh about it. It doesn’t matter how horrible the whole experience was, I can still laugh about it. Later that day, I was feeling a lot of pain and they had moved me to a different room with closer care. I remember this floor had some of the best nurses I’d ever had. Hospital policy was that a patient was to be bathed when changing floors. Issaac stood out in the hall as they transferred me from one bed to the other. This was an out of body experience and I can remember it so vividly. As they raised me off the bed, I started screaming in pain and continued to moan in pain after they transferred me to the new bed. I didn’t have any pain meds but I shouldn’t have been in pain. They were ordered not to give me pain meds because the doctor wanted me to be clear headed when they talked to me. I could tell the nurses felt so badly for me because of how much pain I was in. Issaac could hear me screaming down the hall. i was finally given multiple doses of morphine but it didn’t really touch the pain. I then had a CT scan done to see why I was in so much pain. The CT showed air outside of my colon which meant that the doctor had perforated my bowel during the colonoscopy. They started me on antibiotics and said a surgeon would be in to speak with me about possibly removing my entire colon. The surgeon came in and discussed my options. I either stuck with the antibiotics and steroids to see if I heal or I have the surgery. They said it was very unlikely that my colon would recover because there wasn’t any good colon left. I would have had to take a biological medicine for my UC which meant that my immune system would be even weaker and I wouldn’t be able to work in the Microbiology lab where I was currently employed. Even then, there was a slim chance of recovery. She said that even if I didn’t have a perforation, that this surgery was inevitable in my case. I cried and cried and cried. I asked her if I would still be able to have children and she said yes and that she would put extra tissue around my ovaries to protect them. A lot of people said I should get a second opinion but I wasn’t in that state of mind. All I could think about was being able to have children. I also did not want to be on medicine for the rest of my life.
On May 6th 2017, I decided to have the surgery. I had a total abdominal colectomy and an ileostomy surgery. My entire larger intestines was removed and they pulled my small intestines outside my stomach wall and created what’s called a stoma. The stoma is covered with a bag that has adhesive on it to stick to my skin. I essentially poop in a bag. I wish I remember more from this time. I can’t remember what it was like waking up to this. I do remember emptying my bag into the toilet though when I was finally able to walk. I couldn’t go alone though. I had to call the nurse every time I wanted to use the bathroom and there was an alarm on the bed if I tried to get up. One time I let it go off and went anyway because I had called them saying I need to go to the bathroom and they took too long. I don’t blame them. Each nurse had way too many patients to care for. At this point, my arms were completely black from all of the blood draws and IVs I received. Each nurse that came to draw my blood was so confident that they could get it even though I told them they wouldn’t be able to without the ultra sound machine. I had a nurse poke me 3 times and one of those times was in my thumb. Every time, they always had to call the team with the ultra sound to draw my blood. I had a Russian nurse for a few days and she was really hard to understand as her accent was strong. My issue with her was that she wouldn’t listen to me and would disagree with everything I said. I had been in the hospital for a few weeks so I knew what to do and I knew what my body could handle. I also had a male nurse who led me to ask my case manager if I could only have female nurses. I didn’t have a problem with the fact that he was a man. My problem was that he was too rough and he probably didn’t know it. I didn’t blame him for that but it was hurting me unnecessarily. He also forced me to walk to the bathroom on my own without help when I wasn’t supposed to be alone. I started taking walks with a walker through the halls after getting pt. Everyone who passed me cheered me on. It was extremely hard. They say every day you spend in bed is 3 days off of your life expectancy. I had been in bed for basically a month or so. After this surgery, I was on a morphine pump which I controlled and Oxycodone. The oxy kept me loopy. I was on 15 mg every dose. I hated taking it. I didn’t worry as much with the morphine as it didn’t really work for me. It helped give me relief for a few minutes but then faded. I pushed that pump button every time I was able to though. It was every 15 minutes. On May 12th, I finally went home.
Through the next couple of weeks, I had follow up appointments with my GI doctor and my surgeon. When I went to see my GI doctor, I told her about some pain I was having on my bottom. The pain from it made it very hard to walk or move or even sleep. She said it looked like an abscess but to confirm with my surgeon. So I went to see my surgeon and for some reason on that day I was pain free and happy so she didn’t think it was concerning. On May 26th I went to the er for the 12th time. I had a fever and was in so much pain. The er took me back immediately since I had just had surgery and they feared I was septic. It turned out to be an abscess and they took me into surgery to drain it. I was given anesthesia because of how much pain I was in. Thankfully I wasn’t septic and this turned out better than they originally thought. I guess since I was on steroids for so long, my body wasn’t able to fight off an infection so the abscess was very large and inflamed. I received another unit of blood and I still had a fever for a few days. The antibiotics were making me sick and I was really struggling to eat. Between the beginning of April and it now being the end of May, I had lost 30 pounds unintentionally. May 31 2017, I was released from the hospital for the third and final time.
Over the next few weeks, I was walking around the neighborhood and family and friends were coming to help care for me so Issaac could go back to work. I started to taper off the Oxy and that was not fun. I was taking such a high dose that I would nod off mid conversation. When I would wake, I would feel like I slept for hours when it was really only minutes and I would get upset because I was so tired and never really got rest. Even though I was high, I remember how I felt and the things I did. I remember trying to dance with Issaac in the kitchen when he was walking me through the house. I remember contacting people on fb that I hadn’t talked to in a long time. All I wanted to do was talk. I was oddly cheerful and accepted my situation. Anyone who really knows me knows that I am a half glass empty kind of person so this was unusual for me. I didn’t realize all of this until after I tapered off the oxy. My Dad was the only person who told me he was worried that when I came down, I would not feel the same. He knew that it wasn’t really me. I remember going to the ball park to watch a softball game with family and I ended up having to leave because I was in pain and I didn’t bring the Oxy with me. I started to cry because I was so embarrassed and sad that I wasn’t strong enough yet to be at one of my favorite places in the world. On June 18th, I was tapering and I had to have Issaac come home because I was feeling horrible and I couldn’t stop crying about it. I called him because I was home alone at this point because I could finally walk to the bathroom alone and make my own food. So I had to call in another order of Oxy to taper down slower because I was trying to go too fast and I was having withdrawal symptoms. I really don’t know why anyone would want to go through that. Eventually, I was completely off the Oxy and I was so happy to not have any withdrawal symptoms.
So Issaac went back to work after spending every single day with me in the hospital. I didn’t have short term disability because there was some confusion when we signed up for insurance together. I tried to appeal and it was denied Mid June, people from work hosted a bake sale at work to raise money for me. Just thinking about it brings tears to my eyes. I never felt that I had people in my life who cared enough to do something like this. Someone also created a go fund me page as well. I was overcome with shame, shock, and most importantly gratitude for such amazing acts of kindness. Issaac handed me the money that was raised and I just lost it. I was so emotional and just couldn’t believe that this was real life. I feel like this whole ordeal is something you hear about happening but never think that it’ll happen to you. Thank you thank you thank you to everyone who contributed to raising money and helping me get better and for all of the continuous prayers during this time.
July 4th 2017, I finally returned to work. You can see through all of the photos around this time and the rest of the year that I was enjoying life the best I could. In October 2017, I started to have issues with my skin under my bag. This became an issue off and on for over a year. I had been using the same brand of products since surgery for a year and then all of a sudden I couldn’t use it anymore without having an allergic reaction. My skin would start weeping and oozing and was extremely itchy. It also burned badly which over powered the itchiness. Throughout the year of 2018 I struggled with this a lot but I still went on living. The photos I provided are to show how one day I’m very low spirited and the next day I’m blissful. And I was. I was very blessed to enjoy time with family and to go on vacation with Issaac to the Niagara Falls and to go Gen Con. Gen Con was really hard. There was so much walking and I was so weak and still hadn’t built muscles back up. If I stood on my tippy toes, I would fall over from the pain in my calves. Standing outside in the food truck lines was the worst. The heat was making me sweat and interfering with the adhesive of my ostomy bag. Little did I know that this incident would make my skin worse than it ever was before. The photos are a reminder to me of what I’ve overcome. I wanted to create a timeline and show myself how strong our bodies really are. If you’ve read this far, thank you. Part 2 will be posted soon.