Lessons We Learn Along the Way

In this guest post, Aaron discusses going to college with IBD, and the little tips he learned along the way to help him cope. He also finds the benefits in talking about your disease and joining IBD communities. Follow Aaron’s journey through life on his blog, Shoebox Memoirs.

After high school, life changes a lot. For most people, these changes are great and exciting, but for me, I got a change that was painful and debilitating. I was diagnosed with ulcerative colitis at the end of my senior year of high school. No one expects to just randomly develop something such as inflammatory bowel disease, but, sometimes, it happens and you just have to roll with it.

Near the beginning of my diagnosis, I did not feel the need to tell anyone because it wasn’t so serious then. As time went on, I went from a mild case to a very severe case. Still, I felt like I could handle it and I did not want to take a risk of getting behind in school, but I was suffering so much that I ended up getting my colon removed after the second semester of college. I did not think it was okay to take a break from school at the time, but now that I look back on it, I know I should have. When you are dealing with a disease like this, it is not okay to put your body under that much stress. You risk seriously damaging your body.

I told all of my teachers what was happening when I was at my worst. They all understood and wanted to help me in whatever way I could. Unfortunately, my finals were the week of my surgery. All of my teachers let me take my finals early and gave me as much time as I needed to finish them. I haven’t had a teacher tell me that my disease did not matter.

My college has a program called DSPS, which stands for Disabled Students Programs & Services. It is a very useful thing that helps everyone dealing with any kind of disability. It coordinates with your teachers so that they can give you extra time on your tests or even to just give you a private room to yourself. You will get first priority when you choose your classes, so that you will not have to pick classes at hours you cannot handle, and many other perks. I did not discover this until recently, and I wish I would have known about this from the beginning. If you are not going to school right now because you are afraid, I would suggest that you ask whatever school you plan to go to if they have a service like the one mine has. It is really helpful.

During the time that I was at my worst, I dealt with so many things that I was not able to take control of. I had severe abdominal pain at almost every moment, at times, I would become incontinent and I would just flat out go in my pants without warning, I was very weak because anything I ate came straight out the other end, and I was continuously passing blood. It is important that you tell anyone who is taking care of you what you are dealing with no matter how gross or embarrassing it might sound, because this is a very serious disease that can affect a lot of factors of your life. I never told my parents the whole story. I am pretty sure that I should have been hospitalized at least twice, but I never was until I had surgery. Everything that you do leads to a different outcome, and I spent my efforts censoring my symptoms from those around me.

Listen to your body, you know it better than anyone else. If you do not think something is right and your doctor tells you otherwise, it does not mean that they are right. Doctors can be wrong. Keep fighting until you get answers. Before I was diagnosed, when my parents and I were looking for answers of why I was passing blood with my bowel movements, my pediatric doctor passed my symptoms off as a hemorrhoid. I ate fiber and did everything I could to treat a hemorrhoid, but nothing helped. We went back to my doctor and she scheduled me a colonoscopy, where I was diagnosed.

Being diagnosed with this disease, you really find out what people in your life actually matter. When you tell someone what disease that you have and they are disgusted or even offended by it, I would not give them the time of day because if they cannot accept you saying a word such as “poop” or “butt”, then they are not the kind of people you should be hanging around with. This is not something that you can just shrug off. Your body is hurting itself and this affects you in serious ways. This disease is not very well known and it can seem like an embarrassing thing, but I do not see it like that. I see myself as a strong person for getting through what I have. So what if you have more bowel movements than the average person or if the only thing on your mind is what your poop looks like? These are the kinds of things that should be on your mind because it is important that you know that. You are going to have to go through very painful periods of time, but you are still going to be alive.

Embrace your disease because you will look back on all of the hard times and you will be proud for getting through them.

There are certain things that people are not going to understand unless they have what you have. I find it helpful to talk to people that are going through the same thing. Know that in about every 200 people in America, there is one person that has IBD. You are not alone. Do not think that you cannot make a difference in the world because there are millions of us who are going through this. If we all come together, we can make something big out of this. If you start the first support group in your area, I am sure there will be people who would be very thankful for it because they thought they were alone.

It does not have to be the typical “sit in a circle” support group. Make events out of it. Have monthly dinners or go bowling. Make it fun! It is the greatest feeling to be able to talk to someone who understands. If it turns out that you are the only person in your area with IBD, there is a huge IBD community online! A lot of people blog about their experiences on blogs, social media, and Instagram. You just have to do a little searching and you will find someone.

It is true that you are not alone, but also know that every single person is different from each other. There is no such thing as normal. Just because you are sick and the person next to you is perfectly healthy does not mean that you are living your life wrong. You have a different perspective on life and that is okay.

people with ulcerative colitisAaron Michael Damigos actively talks about Ulcerative Colitis on his blog, Shoebox Memoirs, and is well known in IBD social circles.  He’s always happy to meet new people and talk to other patients about IBD, and believes in the power of patients coming together.