Adjusting to college life can be stressful and challenging for anyone but when you have IBD, those hurdles can seem even higher. Normal everyday things become harder and depending on the severity of your disease, you will often have to consider things other students wouldn’t even think of. Below is a little about my incredibly painful but surprisingly healing undergraduate experience.
When I started college, I was already a decade into the struggle to get my health under control. I had been diagnosed with severe Crohn’s disease at eight years old and was given Prednisone for ten years straight. They coupled that with other medications like Asacol and Remicade but I was still bleeding every day and continuing to waste away. I had argued for years that the constant high doses of steroids and other drugs were not improving anything and were causing horrible side effects but I was scoffed at and told to take my medicine. When I was eighteen, my GI told me that the medications were not working (duh!) and that my only other option was to have surgery … and to continue to have surgeries for the rest of my life. I not so politely declined and left that office forever.
My first year of undergrad was spent at home while I attended a local community college getting some basics out of the way. I had already taken myself off of all my medications which was an awful ordeal in itself. I was so frustrated and angry. For several months I took nothing. I just wanted all the chemical garbage to leave my body. After all those years of doctors and medical “treatments” I was in worse condition than when I initially started bleeding at seven years old. Slowly the side effects faded away, although I feel the prednisone has had lingering long-term effects. Eventually I started trying herbal supplements (I tried all kinds of things for a few years but nothing really helped and some things made me feel terrible). I was twig thin but still looked like a chipmunk from the Prednisone induced moon-face. I was so anemic but was also just so done with dismissive asshole doctors that I wouldn’t see anyone even when I really should have had another blood transfusion.
By the time I was moving away, I was in horrible condition, mentally and physically. I was so scared to be moving away from everyone I knew and many people in my life tried to discourage me. They told me I was too sick to live on my own and it was only a matter of time before I would be forced to drop out and come home. Several people told me I was being selfish since my grandma was paying my tuition. They felt I was wasting her money because they believed I wouldn’t finish school (which was really stupid because I had graduated high school with honors despite constantly missing school due to my Crohn’s). I also didn’t know what do to about my disease. I felt like I was back at start in a game I never agreed to play.
I lived in the dorm for the first semester after I moved away from home. It was a nightmare. I was fortunate to have a great roommate but many of the other residents in our all female dorm were absolutely disgusting. I would wake up and find vomit in the water fountains, used tampons in the showers, toilets that were obviously clogged on purpose. I had struggled with OCD and germophobic tendencies my whole life but living through that really escalated things. I was already having difficulties eating and keeping food down but I would go to the dining halls and have panic attacks from having to touch things that other people had touched. I often tried to force myself to touch something and then eat with my hands as I berated myself about how insane it is to not be able to use the ketchup dispenser and then eat fries with my hands. Many times I ran out of the dining hall to throw up in disgust and brush my teeth and wash my hands and face with scalding hot water over and over. This was also an issue since I never felt our communal bathroom was clean. Many times I would get sick and then would clean everything so I could take a shower or wash my hands and face. I never felt clean the entire time I lived there. When I would drive the four hours home to do laundry (cause I certainly wasn’t going to use the dorm washers after seeing how these girls lived), I would take a long hot shower and sleep so hard.
School itself was a blur. I can’t even remember the classes I took now. I was having such a hard time. All of my anxieties and self-destructive tendencies were in overdrive. I was washing my hands to the point they were bloody and raw, which would freak me out even more. I was having constant bloody and mucousy diarrhea and had zero privacy which further fueled the anxiety. The school I was attending was fairly large and I often had to run into random buildings looking for the bathroom as I walked across campus from class to class. When I was in class I was mostly thinking about where the closest bathroom was and if enough I could hold it until the end of class. Fortunately I only lived in the dorm for a semester before I transferred schools, moved even farther away from home and lived in my own apartment.
I LOVED living alone! Everything was always clean, to the point that it became a big problem but after the living conditions I had just come from, an obsessively cleaned space, to the point of compulsion, was very welcomed. I didn’t know anyone in my new town or school but I made some friends quickly and discovered how much I hated having them over. I’m sure they also hated coming over. It was stressful for us all. Dirty dishes, unused coasters, messed up vacuum lines and anything even remotely messy drove me insane and I didn’t hide it well. I had fun hanging out with them at their apartments or out somewhere but not in my own apartment. I felt my space was being violated every time someone came through the door. That apartment became my sanctuary. It was often my deserted island where I would isolate myself away from the world.
I really struggled in school. Just getting myself to class after a morning (and night) of running back and forth to the bathroom and trying to get dressed was exhausting. This wasn’t any different than before but now I was all alone and had to do everything for myself. For example, I rarely went grocery shopping or cooked when I lived back home and in the dorm I had meal tickets to the dining halls. I never really had to meal plan, shop or cook and now I had to do all of that and all of those things cause major anxiety for me. There were so many times I would just sleep (or pass out) on the floor in the bathroom because I couldn’t keep going back and forth. During the especially hard times, I would put blankets and pillows in my large garden tub and sleep in there so the trek to the toilet was as short as possible.
I missed so much of my classes running back and forth to the bathroom at school. When I was in class, it would be so hard to focus on the lecture because I could barely sit still and all my attention was on the pain I was in, the loud disgusting sounds my stomach would make and the constant feeling that I was about to shit myself in front of a room full of people. By the time I got home at the end of the day, I often had nothing left. Sometimes I would have to drag myself up the three flights of stairs to my apartment and then would have to crawl across the floor because I didn’t have the energy to stand anymore. I often felt dizzy and clumsy and I couldn’t sleep. Insomnia was something I had struggled with for years already. I often felt confused, like I was trapped in some hazy dreamlike state.
I usually didn’t interact much with people in my classes. Between having to run out of a 50 min class multiple times and my stomach having constant screaming arguments with itself, I felt embarrassed, exhausted and anti-social. At most I would ask someone if I could make copies of their notes since I often missed the lecture due to being in the bathroom so much. Despite being standoffish, so many perfect strangers were sweet to me. Many times random girls would bring my purse and books to the bathroom if I didn’t make it back before class ended. Some people wouldn’t even wait for me to ask and would copy their notes and have them for me the next time I saw them. I should have made more of an effort to get to know these kindhearted people but I just didn’t have it in me at that time. I would always thank them profusely but I felt so guilty not being able to give back to them in some way and also ashamed that I was even in this situation.
I eventually isolated myself from pretty much everyone. I couldn’t keep pretending I wasn’t dying when I went out with my friends who were just trying to have a good time. I couldn’t deal with other people’s drama, most of which seemed completely unnecessary to me. I just didn’t have the energy or patience to be around other people anymore. I had years of resentment built up from watching everyone around me live their lives while I was trapped in the bathroom so I started to focus solely on me. I didn’t just stop accepting invitations, I totally cut people out of my life for what probably seemed like no reason to them. My best friend was living in the building next to mine and it killed me to see her coming and going but I just couldn’t give any of myself to anyone else anymore. It was an incredibly lonely time in a life full of loneliness but it’s also when things really started to turn around for me.
Out of desperation, I started keeping a food journal. I was so tired of not being able to eat and everything making me sick. After eating, if I could get down more than a few bites, I would always have to run to the bathroom to have bloody diarrhea and often vomit. I would often go days on end without eating anything because I was in so much pain and so scared of the fallout. The stress of knowing I had to eat because my body was wasting away but also knowing that everything I ate sent me running in agony was a horrible catch-22 that has caused me to have life long food issues and even be suicidal at times in the past. Knowing you have to eat to live but also knowing that eating feels like death is a special kind of misery.
My food journal wasn’t much help at first because I made the mistake many people make, I only made a list of what I was eating. That’s not a food journal. That’s a menu. That’s a meal plan at best. That list didn’t tell me anything beyond confirming that I’m addicted to cheese. Gradually I started to figure out the things I needed to track. This lead to a kind of elimination diet. For a long time I pretty much only ate white rice, plain mashed potatoes, saltine crackers and white bread. These were my “safe” foods. They still didn’t feel good when I ate them but they didn’t feel as bad as everything else. Over time, and after many setbacks, I started to learn which foods really hurt me and I stopped eating them for long periods of time. This was really difficult for me. Food has always been a big part of my life despite my issues with it. Being so restricted was incredibly stressful and depressing but slowly I started to feel better. Eventually (over the course of about three years) I healed my gut and was able to add back in most of the foods that had been eliminated. Learning to listen to my body has opened up the culinary world to me! My biggest asset is my sense of smell. If it smells too spicy, too sweet or just not appetizing, I don’t eat it. When I don’t listen to my nose, I regret it! I have very few foods I avoid and none are “triggers” anymore. (You can find my blog about food journaling HERE)
I also started to keep a regular journal. I had tried to journal in the past and never really stuck with it but journaling became very cathartic for me. I now go through periods of intense journaling and times when I don’t pick it up for weeks or even months. If I’m going through something or trying to decide how I really feel about something, I open my journal and let myself figure it out. Journaling has been such a great way to organize my thoughts and also release a lot of trapped anger and frustration. Journaling started me down a path of examining my mental health which was something I hadn’t really done before. In high school I was prescribed Xanax and Lexapro (I had horrible experiences on both) but was never referred to a psychologist. Looking back now, I think finding a therapist or even just someone I felt safe talking to about all of my trauma, medical and otherwise, would have drastically changed my life. I would have started healing my mind and body so much sooner had I not kept all that pain to myself. But I never had anyone so I turned to myself through journaling and it has helped me tremendously.
During most of this time I was also working as a vet assistant at an animal hospital. It was a very challenging endeavor but it was so rewarding and I LOVED when people would bring their puppies in! I had to leave my dog at home when I moved away and working there gave me the opportunity to get my doggie fix without having to have a dog of my own. Many times I thought of getting my own dog and would even foster stray dogs that came in but between school, work and feeling like death, I just didn’t have the energy to properly care for a dog.
While I loved getting to play with dogs, working there was so stressful and draining. It also put a lot of things into perspective for me. I was studying animal biology in school and planned to work in wildlife rehabilitation when I graduated. Around graduation time I interviewed over the phone with a few places but ultimately decided that I didn’t want to work at an animal rehabilitation center anymore. I saw so much abuse of “pets” working at the animal hospital that I didn’t feel like I could deal with injured or abused wildlife too. Many days I would finish a shift at the animal hospital, cry on the drive home, have to strip my filthy scrubs off at the door and put them straight into the washer so I could go sit in the shower and cry some more. I would cry for myself because I was depressed and physically and mentally exhausted but also for the poor animals that get mistreated and abused by the very people who claim to love them. There was also so much unnecessary drama with the vet staff. I would arrive after a long day at school to find everyone mad at each other and trying to drag me into the bullshit. I loved being around all the animals but I dreaded dealing with many of the people that worked there.
Another thing I discovered during this time was the importance of a schedule. Being in school and working meant I already had a schedule largely in place but I began to schedule all aspects of my life and that was a game changer! I started going to bed and waking up at the same times. Even if it was a sleepless night, I stayed still with my eyes closed until my alarm went off. I didn’t allow myself to snooze. It didn’t matter how tired I was or how many times I had run to the bathroom during the night, I got up. Even if that meant crawling on the floor because I couldn’t stand. I also started eating (or trying to eat) at the same times each day. The hardest part was scheduling my bathroom trips. I was already in there all the time so when it was my scheduled time and I had just walked out, it was hard to force myself to go back and sit down but that is exactly what I did. I also stopped getting up so quickly. When we have frequent emergency trips to the bathroom, we want to get out of there as quickly as possible and try to have some sort of life but that was often causing me to immediately run right back. So I started sitting for longer periods of time, even when I felt I was done. During my scheduled times, I would sit for at least 30 mins. Eventually my body got into a rhythm. I started having less emergencies and it started being less painful. Having a schedule also helped reduce my stress and anxiety. My body knew what to expect so it wasn’t in constant panic mode. Gradually I even started being able to sit through entire classes and pay some attention.
After some time, I felt I had improved enough to go to a GI without the fear that they would try to force medications on me. I really just wanted to make sure I didn’t have colon cancer and didn’t have much interest in what they had to say about my Crohn’s. I had found a way of living that was working for me so this was more of a check up. I only saw this GI for one colonoscopy but he was great! I actually felt like he cared about my wellbeing and wanted me to get healthy even if it wasn’t by the standard medical means. I explained what I had been doing with my food journal, schedule and mental health practices and the changes I had experienced. I also told him that I smoked weed every day. He compared my colonoscopy results with my medical history and said that he couldn’t believe the improvements I had made and that he wished he could write me a prescription for marijuana so I wouldn’t have to deal with the stress of doing something illegal. He told me to keep doing what I was doing and he didn’t try to prescribe me anything even though I wasn’t fully in remission yet. He was everything that I wished my childhood GIs could have been but weren’t.
I didn’t drink much during college because I had gotten much of that out of my system in high school and drinking didn’t feel good for my body anyway. I still partied way more than I should have but it wasn’t a regular thing in my life. What I did start doing regularly was smoking lots of weed. Many people try to demonize marijuana but it seriously saved my life. It didn’t cure or numb anything but it did make things more manageable. It eased the pain, nausea and feelings of urgency. It stimulated my appetite and allowed me to eat, even if just a little. And it helped me process my feelings without being overwhelmed by them. I know my remission (11 years med-free remission at the time of writing this) isn’t dependent on it but I don’t think I would have ever gotten to this point had it not been for weed.
Eventually I felt I could start being social again. I missed hanging out with my friends and it was so nice to finally be able to go to a restaurant and not be terrified or in the bathroom the entire time. After living through a nightmare, I felt like I could finally start to live my life. I wish I would have confided in my friends and trusted them to be there for me but I didn’t know how to talk to them or even deal with myself. They knew I was sick but I spent so much energy trying to pretend like I was ok that I didn’t really give them the opportunity to be there for me.
Around the time that I was getting ready to graduate and move away, some friends and I had a big bonfire on the beach. I didn’t really like my college town much but I loved having bonfires at the beach. Prior to this gathering I had decided that I wanted to rid myself of past me. I didn’t feel like that scared sickly little girl anymore and thought burning my journals (food and mental health) would help me feel free of the pain from the past. At the time it did help but now I regret doing that. I never thought I would end up using my difficult experiences to help others but that is the life I have created for myself. Having those journals today would be so helpful. While I will never forget how much pain and suffering I’ve endured, it also feels like a lifetime ago. Almost like it happened to someone else. If I had it to do all over again, I wouldn’t have set fire to the years of healing in those pages.
During that hellish ordeal I managed to get a Bachelor of Science degree in animal biology and then went on to get a Master of Science degree in environmental policy and management. I don’t know if I would have made it through this whole experience had it not been for the support of my grandma. Not only did she pay for my undergraduate education so I wouldn’t have to take out student loans but she also constantly checked in on me. She showed interest in the classes I was taking even though she didn’t understand what I was talking about most of the time. When I was overwhelmed and afraid I was going to fail a class she would say, “So what. If you fail you just take it again.” She gave me what I couldn’t give myself for so long. Compassion and unconditional love and for that I’ll be eternally grateful.
I basically got my bachelors degree from the toilet with my notes, textbooks and computer on my lap. College was an incredibly difficult time in my life but it was also where I found myself. It was where I realized how strong I really was (and still am). In isolation and through the seemingly insurmountable odds, I did it. I accomplished the goals I set for myself and some I didn’t even think were possible. Learn, make mistakes, face your fears but most importantly, find yourself. You may be chronically ill but you’re still in there!
If you’re getting ready to head off to college or think you can’t go because of your IBD, never give up on yourself or your body! Experiment and find the things that improve the quality of your life. Start talking to people you love and trust about how you feel and what you’re going through. Talk to the professors and explain your situation. Some won’t care, just be ready for that. But from my experience, most are very understanding and even though I never asked for any special treatment, many offered to make arrangements if I needed something.
Good luck to any students reading this! I hope you find the things that work for you and always remember to prioritize yourself and your health. Having IBD doesn’t have to mean you life is over. “We can do hard things,” as Glennon Doyle says.
If you need support and a safe space to talk, contact me! I would love to be there for you on your healing journey. You can schedule your complimentary consultation with me HERE.