Life takes Guts

Immunocompromised during a pandemic

When I first started hearing the news about COVID-19, I was in Indianapolis on a trip to cheer on our basketball team during the Big 10 tournament. While I was in that hotel room, I had the news on constantly, trying to get as much information as I could on it because I had no idea what it would mean for our trip, the country, me. As someone who is immunocompromised, I felt very anxious hearing that older people, and people with weakened immune systems or underlying health conditions were more susceptible to the disease.

Crohn’s disease is an autoimmune disease. An autoimmune disease is a chronic disease where the body is attacking itself because it thinks that the cells in it are foreign and pose a threat to the body. When my body starts attacking itself, it is called a flare up and I experience symptoms like fever, diarrhea, pain, gas, nausea, vomiting, loss of appetite, etc. To prevent these flare ups and the fighting of my cells, I have to take a medicine that stops my immune system from responding negatively to my healthy cells.

In your body, you have these things called alpha TNF receptors. These are often thought to be what causes inflammation because they trigger an immune response to fight unknown particles in the body (Remember that my autoimmune disease thinks that healthy cells are unknown particles). To combat the constant fighting and inflammation in my body, I have to get anti-TNF binders from a medicine called Remicade, injected through an IV every 8 weeks. Remicade is a type of chemotherapy that releases anti-TNF binders into my bloodstream so that they can attach to TNF-alpha receptors to block inflammation from happening in my body. This is a very brief synopsis of TNF receptors and for more information, a quick google search should do the trick! In short, my medication functions to shut down my immune system and inflammatory response to foreign cells that get into my body. This prevents my Crohn’s disease from flaring up due to inflammation responses caused by my alpha TNF receptors. But it also shuts down my immune system, making me more susceptible to getting infections and illnesses.

Any illness I get, no matter how minor it may be, like the common cold, really takes me out for a few days and I feel it more harshly than most people (for the reason specified above). So, needless to say, I found it very scary that this was a completely new disease that no one knew anything about and the only information I was getting was about how quickly it can spread. Shortly after hearing on the news about COVID, my teammates and I received an email saying that classes would be online for the rest of the semester. This gave me a glimpse at how seriously I needed to take this.

Over the past two months, I have been self isolating as much as possible to prevent my chances of getting exposed to this disease. I am fortunate enough to be living with my parents right now and they are able to go out and get the groceries and other necessary supplies that our house needs so that I don’t have to go out and risk getting exposed to the disease but I know that if I was back in my apartment in MN, I’d need to be the one going out in public more often to get things I need. Unlike me, other immunocompromised people may not have the means to live with someone who can provide for them at this time in the way my family provides for me. This is why social distancing is something that needs to be taken seriously.

Many people who have compromised immune systems look completely normal, like myself, and no one would be able to determine if the person who is in the same grocery aisle as you, for example, is immunocompromised or not. You never know who you will be in contact with so it is important to take the necessary precautions to keep others safe. In a time like this, I am doing my best to look for the helpers and for the people who continue to social distance for the good of immunocompromised and elderly populations. Myself and many others with chronic conditions depend on everyone else being able to pull their weight and do their part in social distancing, washing hands, and covering faces with masks so that everyone can stay healthy and safe. Please remember this as things are starting to open again.

We will get through this, but only if everyone does their part. Look for the helpers, and follow in their footsteps. Thank essential workers and healthcare workers for risking their own lives, because they might be immunocompromised as well. Thank the companies that have donated free supplies or at home activities, like workout plans, to keep people from going out more. Thank the support group you interact with on a daily basis because we are all in this together. Stay safe out there!

Recovery Part 2

While I was in the hospital, I had not been given food for 4 days and it was time to start moving towards getting me to eat again. Before eating, I had to have a bowel movement and on the 4th day of my hospital stay, I ended up passing gas and having a bowel movement! This was a huge step in my recovery and my nurses celebrated with me! I was super relieved to know that my stomach was able to function at least semi-normally.

Because this happened, I was allowed to try eating foods. I started off with clear liquids only. This is a common diet for people with my disease that we need to follow before certain tests or when your intestines are severely inflamed. Clear liquids include apple juice, jello, sports drinks, water, clear broth, popsicles, and sorbet. I decided to try jello and chicken broth. Food had never tasted so good! After eating my first meal, I felt fine for a bit but ended up eventually throwing it up so we had to try again. This time I ate sorbet and apple juice instead of the jello. I was able to keep this down which was a step in the right direction.

After 24 hours of the clear liquid diet, I got to move to the full liquid diet. This would include ice cream, cream soup, gelatin, fruit juices, pudding, and tea in addition to all of the clear liquid items. I decided to try some cream of chicken soup and ice cream. This stayed down just fine. Throughout this process of trying new foods, I had to constantly get my vitals checked and stomach pushed on to make sure there were no blockages in my intestines so that I could move towards getting out of the hospital. My nurses also made sure I was still having normal bowel movements and I was encouraged to walk around the hospital. Each day was getting a little easier to walk longer and I often went to the gift shop with my mom and then back up to my room. Although this seems like a minor feat, it felt huge and I was proud of myself.

One of the last things that I needed to get removed from me aside from my IV was the drain that I had right beneath my scar. This drain was super obnoxious when I tried walking around because I had to have it pinned to my hospital gown to prevent it from just dangling from my stomach. Even though the nurses had to empty the drain often, they decided to take it out and see how I did without it. It was really shocking when they just pulled the tube straight out of my stomach and left it. No stitches or anything to hold my stomach together there. It would eventually heal to look like a second belly button which is kind of cool! Once this drain was out, I felt so much more free.

The day before I left the hospital I got to go on a low fiber diet, meaning I could eat anything that would be easily digestible and wouldn’t disrupt the staples I had in my intestines. I started off with rice krispies cereal and then ate some applesauce, pasta, and yogurt. If I could hold down this food for a day, then I would be allowed to leave the hospital the next day. My vitals had been looking good and I no longer had morphine next to me to use if I needed it. My IV was only pumping maintenance fluids since I still didn’t have much of an appetite.

The 7th day rolls around and they are making sure my vitals are looking good. They determine that things are looking great and that I am able to go home once the doctor fills out the discharge sheets. While in the hospital that morning, I ate breakfast but threw it up. I thought that I would be required to stay in the hospital longer because of this but they said that this would be normal for the first couple of weeks since my stomach is trying to figure out how to operate again after losing some intestines and undergoing major surgery. After about 8 hours of waiting for the doctor to sign the discharge papers, I finally got the okay to go home. The nurse came to talk to me about what the rest of my recovery would look like and what to watch out for. I was instructed to continue a low fiber diet for 4 more weeks until things were completely healed. This meant no fresh fruit or veggies for a whole month which at first seemed odd because those are the most important food groups to be eating but after some thinking, I realized that I could really aggravate my stomach if I did eat them as is. Luckily, I could get some canned veggies and fruits in so that I could at least get the vitamins and minerals provied by these foods. Canned green beans became my comfort food and I still eat these whenever I feel terrible. I was also prescribed some calcium and vitamin D pills since my blood levels showed that I was deficient. The surgery had affected where these vitamins and minerals were absorbed so adding this supplement to my diet would help me get enough of them.

Upon leaving the hospital, I made a short trip back to my apartment to pack some clothes and prepared for the drive back to my hometown. Moving still was really difficult, as any jolt made my stomach feel like it wanted to rip open and any cough or sneeze or laugh that happened was very painful. Since this was the most moving I had done in many days, I felt weak and exhausted. Thankfully my parents were there the entire time to help me get to where I needed to go. Also at this time, I took a shower for the first time in a week. This proved to be difficult however, because I could not get my scar wet. I decided to wash my hair and then scrub my body in small sections so that I wouldn’t have to stand under the shower. It felt nice to be able to take a shower, no matter how difficult it was to do.

My parents and I then decided to leave and make the drive home. This was painful as any bump would hurt my stomach and I found myself holding a pillow next to my stomach so that it wouldn’t jolt as much. Once I got home, I stayed there for about a month. I mostly watched TV and sometimes took walks around the neighborhood. My family members came to see me and I followed up with my primary care doctor to take my stitches out.

A week after getting home, I went to get my staples taken out. The doctor that I saw just used a regular ‘ol staple remover to take them out. When she removed them, it felt like a small pinch which I was grateful for because I was expecting to feel much more. Once these staples were out, I could see my full scar and could watch the healing process happen over the next couple of months. I was amazed with what the human body could do and I will never fail to be impressed by how fast I healed from such a drastic surgery.

Throughout this hospital stay, I learned about how important it is to have a support group. Many of my friends came to visit me and it made such a dramatic impact on my mood. This lesson is something that I carry with me to this day. Showing people that you care about them is sometimes the exact thing that they need in order to make it through.

This story is the beginning of my journey with Crohn’s disease. So much growth has happened since my diagnosis and everyday is a new opportunity to learn about myself and this disease. I hope that sharing my story will help someone understand this complicated disease at least a little bit more.

Recovery; Part 1

My recovery time from my surgery took a week. Because of this, I will split my recovery story into 2 sections so that I can elaborate on the information from my experiences.

For a whole week, I was in the hospital trying to process what had happened. The first days were the hardest. When I was first told in the hospital that I had Crohn’s, I remember googling it because I didn’t know what it was. (Please see my home page to get more information about what Crohn’s is) I saw that it was labeled as RARE. I was so panicked thinking I would never be able to find someone else who had it and wouldn’t be able to find a support group or be able to find decent medical care. This terrifying episode of anxiety eventually subsided when I realized that the hospital I was at had plenty of doctors and resources for me and I had already been assigned a gastroenterologist. (Dr. Vaughn; I still go to him to this day!) After my first night and hearing about what this disease entailed and the recovery time, I decided to drop out of school for the semester so that I could get my life back on track and not have to worry about all the school work I would miss. This for me meant no cheering, and no working since my job was part of Student Union and Activities and I was required to be in classes in order to work. So I had my parents go into campus to drop me out of my classes and I texted my boss asking for a leave of absence. I had to text my coaches because I was intending to go home for about a month after I got out of the hospital so I wouldn’t be at any practices until November.

SO, after you get such a major surgery, the nurses are constantly checking on you every hour and you have so many tubes connected to all parts of your body. Upon first waking up I had a catheter in my bladder, 2 IV’s (one for the morphine, and one for the nutritional fluids since I wasn’t allowed to eat or drink), A naso-gastric tube (a plastic tube that was placed in my nose, past my throat and into my stomach so it could bring up the excess stomach acid into a nearby container to drain it), a closed suction drain beneath my surgery scar (which looked like a bulb and it needed to be emptied of the extra fluids from the surgery every couple of hours), a blood pressure cuff, and a pulse oximeter. It was suffocating.

The night of the surgery my parents were in the room along with my ex-boyfriend. They went out to dinner while I slept, still with a lot of anesthesia in me. I don’t remember much from that night other than nurses coming to check in on me every hour. I fell asleep with the TV on watching HGTV, as one does when they are staying overnight in a hospital. (Is that just me?) The next morning I was awoken at 6 am with the surgeon and their group of residents standing around my bed. They explained again what was going on and asked how I was feeling and how the wound was doing. I was so out of it and so tired it was hard to process what they were saying but they came and felt around my stomach and then told me they would be back every day to see how I was doing. They had also introduced a button that when I hit it, would dispense morphine so whenever I was in pain, I could get some relief.

Later that day, I got my catheter taken out because they wanted me to start walking. This process was really painful (even though most people say that they didn’t have a problem with it) and for the first few minutes, after it was taken out, it felt like stinging down there. Because they took the catheter out, I had to get out of bed to use the restroom when I needed to. I can say I have never been more frustrated by my inability to move than when I was laying there in my hospital needing to even shift in my bed to switch positions but couldn’t because my stomach muscles were essentially slashed in half. It took a lot of help from my parents to get me out of my bed to even use the restroom and I’m so grateful they were there all day every day even though I couldn’t imagine being them and seeing their daughter struggle so much to even roll over. The doctors had requested that I walk and move frequently so that I didn’t build up blood clots in my legs from not moving but getting up to use the restroom was a monumental task already so I took it pretty easy for the first day or two.

Tip! If you have a friend or family member in the hospital: Those cheesy balloons or flowers that you would get them saying to get well actually mean a lot more than what you’d think. The fact that I had so many flowers and little gifts like my elephant stuffed animal from my best friend from home meant so much to me and I felt incredibly blessed to have such a widespread support system. Also, visitors in my hospital room made me feel okay again because the time passed faster when I could talk to people about their things that they had going on. Just showing people that you care means more than words can describe and definitely played a big factor in coping with my situation.

The third day after surgery I saw my scar for the first time when the doctor made her daily rounds at 6 am and needed to change the dressing on my scar. My stomach was stapled together with real, bought from the store lookin’ staples! I had never known that this was something they could do to a stomach! While I was busy being simultaneously amazed and disgusted by this sight, the doctors were explaining that the ticket out of the hospital would be given to me when I could eat and keep food in my body. But, in order to eat food, I had to have a bowel movement to ensure that my stomach would be operating smoothly again. I hadn’t eaten in 4 days at this point and had lost 15 pounds to be only 94 pounds as a college sophomore and so the doctors determined it was time to start moving towards the route of eating.

To progress me towards a bowel movement, I got my naso-gastric tube pulled out so they could see how my stomach would tolerate its own acid and so that the acid could start breaking down the dead cells to flush out of my system and create a bowel movement. The way they did this was super uncomfortable. They literally pulled the tube out from my nose and I could feel the acid on the tube go up my throat and through my nose. It was a lot longer than I had expected and the nurse seemed to just keep pulling it out. Once it was out though, I felt more normal and could walk around the hospital more freely. I took frequent trips to the gift shop and walked around my floor to the “healing room” and sat in chairs in the hallway with views of the outdoors which kind of made me sad that I couldn’t be sitting outside instead.

My third day was also spent blowing into an incentive spirometer which helped prevent mucus buildup. This was only a little painful, as any movement including laughing, sneezing, coughing, and even breathing too hard hurt my stomach but it was kind of a nifty gadget that I knew would help prevent pneumonia. I was instructed to use this a few times an hour so that I could breathe normally. The rest of this day, I colored, watched TV, read a book, and played on my phone. Little did I know that the 4th day in the hospital would be a turning point towards my way out of the hospital…

The Day My Life Changed; My Diagnosis

To start off this blog, I’d like to talk about the day of my diagnosis. This is not where my journey started though because I was exhibiting symptoms before diagnosis. I realize now that these symptoms I had in high school became the norm for me. Therefore, I didn’t tell my doctor about any discomfort I was feeling after eating food (which is not normal) or any of the other unpleasant symptoms I had experienced. Word to the wise: Tell your doctor what you feel so you don’t end up in a similar situation like mine. Oof!

Okay, on September 12th 2017 I was rushed to the emergency room. I had been having some pain in the lower right side of my stomach for a few hours and it felt like an extremely tight knot but I didn’t think too much of it until the pain kept getting worse and spreading throughout my entire stomach. I sat on the toilet for about 3 hours once the pain got to a pretty high level, throwing up and having diarrhea. At the time I thought that I might have caught a very nasty version of the flu. After a very long time sitting on the toilet emptying my guts out, I finally felt decent enough to leave the bathroom because I was absolutely exhausted and I thought that I would be fine after some rest. I fell asleep fairly soon after leaving the bathroom but I was only able to sleep for an hour. I woke up at 5:30 am gripping the sheets in so much pain and when I tried to stand up, I could not even walk I was in such severe pain. To this day, this has been the worst pain I have ever felt in my life. You know when doctors ask you to rank your pain on a scale of 1 to 10 but you never really know what to say because you have nothing to compare it to? Well, this was a definite 10 and I don’t think anything has ever caused me as much pain as the pain I felt that night.

I woke up my ex-boyfriend who was luckily staying over that night and had been with me during that time. I told him to call the emergency room to let them know I was coming in. He took me to the emergency room on his moped and I was sitting on the back of it carrying a plastic Target bag in case I needed to throw up again. The bumps were unbearable. Thinking back on it, this was pretty comical in the fact that I took a moped to the ER. Makes for a good story I guess! Once I was there, I skipped the intake area because I could barely stand at this point. In my head, I still thought that this was just the flu and I remember texting my boss and saying that I was in the hospital but would come into work later depending on how long it took to discharge me. I also remember texting my coaches saying I would be at practice later even though I was at the emergency room letting all the contents of my guts out. I had insisted that my ex-boyfriend go home to get some sleep but he refused and stayed with me the whole time and then headed to class later that morning. This turned out to be a lifesaver as I really needed the support and help to get to the bathroom and to get the nurse’s when I needed them.

I sat in the emergency room room for 7 hours doing tests including Xray’s, MRI’s, blood and urine tests. Each test took about an hour to process which is why this took so long. My mind is pretty hazy about what exactly happened during this time as I was on multiple opioid strength painkillers like Vicodin and Morphine. I was on the maximum dose but still could feel the pain at all points in time, especially when I tried to move and go to the bathroom. The doctors finally ordered a CAT scan for me and when they got the results back, they calmly told me I was going to need surgery because I had a perforated bowel. I asked, “When?” and they said it was an emergency surgery and that I was next on the list for an exploratory laparotomy of my intestines. Essentially, this means they were going to open up my abdomen and look around for the diseased part of the intestine so they could take it out. At this point I was in such severe pain and on so many drugs I didn’t fully register that my entire abdomen would be opened up, I just wanted them to get it over with. About a half hour later, I was in the surgery room. The surgeon, Kaysie Banton (Thank God for her), told me to count down from ten and I went under only getting to 8.

The next thing I remember is waking up in the recovery room and the nurse sitting next to me exclaiming that I was awake! I checked the time and it was about 4:30pm. I had gone into surgery at 1pm! The nurse told me they had called my parents and that they were rushing up here. I was confused because I wasn’t sure what the big deal was. Anesthesia really puts you out of it for a while. I promptly fell back asleep and the next time I woke up, I was in the hospital room with my parents and my ex-boyfriend. The doctor came in and told me that they had removed 4 inches of my small intestine, meaning I had a small bowel resection. They took out the perforated section and stapled my intestines back together (I still have these staples in there to this day and I see them on the colonoscopy pictures! Kinda cool!)

While in the room the surgeon came in and started to explain what the procedure was like and then explained that I had been diagnosed with Crohn’s disease. The last thing I remember from this conversation was her drawing a picture of my intestines on the whiteboard in front of me. I was on a high amount of painkillers and was still groggy from the anesthesia and I fell right back asleep to the sound of her explaining this new disease to my parents.