Tag: Crohns

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.