Crohn’s disease sucks, to put it lightly; but it has also taught me more about life than I would have ever pursued or understood until much later in life. My journey through Crohn’s will never end in my life; only evolve, so there is no use trying to wish differently. I just have to roll with the punches and that’s ok because I never play video games on easy mode either, why should life be any different?
The problem I found with the amount I researched, read, and discussed about Crohn’s was what process to take to beat this disease myself. I read numerous stories about individuals that fought through this syndrome; they won competitions, travelled the world, or went to school and got their dream job. The stories were inspirational and motivating, but that is where it stopped. If you have an IBS problem, sooner or later you will come to realize that ignoring the problems of this disease and focusing on the positive parts of your life, may be the only option to help you fight through this diagnoses. Having one negative thought about your disease can turn into 50 negative thoughts instantly. There is no shortage of downsides to focus on, but those negative thoughts will destroy you like a cancer if you feed them. Sooner or later I think people mature and realize that positive thinking is going to help you, much more then feeling down on yourself and hurting the people around you. If you have a bowel problem you do not really need to look for motivation, you have it in you already; you just have to find it. No one wants to accept the limitations placed on you by the world with this diagnoses and you do not have to, EVER.
Although it is nice to read that Frank had Crohn’s, then won a marathon and was happy forever. The real information needed is; how did frank do it? Frank didn’t just wish he was well, tell himself he wasn’t sick, get up, and go for a light jog into the horizon. Crohn’s may be an “invisible” disease (as you cannot pick us out of a crowd, unless looking at the line for the washroom) but the symptoms are not in your head!No matter how much some naive people would like to think. Mentality is not going to heal you, only give you the tools and motivation to heal yourself and persevere through the cards you are dealt with.
I will try to give you my background, symptoms, a bit of story and the process I have taken, that has made an amazing change in my life. This process helped me get from bed ridden, obese and dying, to racing cars, riding bikes, and flying. I will not to go too deep into my own story (saving that for a later date) it helps keep this a little shorter, so you can read it while in the bathroom (well I guess I could still make it a novel then). I should try to keep the motivational speech to a minimum, because you are already a strong person. When I was feeling down, some author was not going to understand my struggles or give me any help by telling me to just be happy and joyful, it’s not that easy. Although some of my mentality will bleed into my words, try to tolerate it if you can.
For the people reading this that don’t have an IBS problem or do not know someone with it, give Crohn’s, Colitis, or IBS a Google/Wikipedia search and educate yourself about a very misunderstood disease. Who knows, maybe you can be the person who makes a breakthrough with this ailment. The auto immune disease in short; makes your intestinal track bleed, you have to use the washroom a lot, it destroys your body, and pain is more intense than what is explainable.
The disease has no cure, and isn’t well understood for treatment, leading to a lot of misinformation and “do-good” mentality homeopathic cures, that in my case are equivalent to pissing on a bonfire and calling it a miracle. So no, with me, eating four fish tails a day, while doing yoga, on a tree, at midnight will not help. I do however, appreciate that you care and want to help me, but informing yourself will help everyone much more. This article is mostly directed at people fighting the disease or close to someone who is. It should go without saying: I’m not a doctor and nothing I say should be taking as literal advice. I’m just sharing my story. Discuss any changes you would like to try with your doctor(s).
A summary of my history is; I was diagnosed with Colitis at age nine. It was a moderate case, and I went into remission around age thirteen. I received a brain injury from a BMX accident around age seventeen and as a result, forgot I had the disease due to memory loss. At nineteen I started getting symptoms of Crohn’s, although not knowing what it was. I felt comfortable with the early symptoms because subconsciously I had dealt with it before; I just didn’t remember. I didn’t take it as serious as I should of as a result. My Symptoms of Crohn’s slowly got worse and worse over the next while, making myself pull away from activities, friends, and influenced me in to staying home more and more, but still I didn’t see a doctor. At twenty I went from 160lbs to 110lbs, lost most of my blood, was in the most pain of my life, and starting falling into a coma, All while I was still trying to work! I thought I could pull though and was scared of what was happening. I tried to ignore the disease until it almost killed me. I ended up getting diagnosed with Crohn’s, and then a hybrid called Crohn’s Colitis, and now I’m at chronic Crohn’s Colitis meaning my flare up has lasted 4 years instead of a more common 1-2 weeks. I went from knowing nothing about IBS to getting informed about the disease, what is was, it’s diet, and getting used of lengthy hospital stays.
I’m currently on Predisone, Imuran, Mezvant, Remicade, Humaria, Zoloft, all on doses above recommended and even maxed out on others. I have been through every available approved medication and am a part of ongoing studies for yet to be approved medications. I have tried a huge amount of naturopathic treatments and take a regiment of vitamins and supplements. My symptoms at worse are; 40-50 bowel movements a day, while anemic with substantial blood loss, ulcers affect my entire G.I. tract, and often reach my esophagus, resulting in infection and I.V. feeding. My G.I. tract is too weak and the infection too lengthy for; reconstruction, J pouch, colostomy bag, or any operations, other than a temporary colostomy, to give my bowel a week long break. My case is not common for someone of my age (24) but not unheard of, and I have been told of people with it worse than I. Although I feel, with this disease, the mild, moderate, and sever cases all are challenging. If it is a mild case, you won’t take the health threating meds, if it is moderate you won’t get approved for the hard core biological drugs, and if it is severe, well its severe. I feel at any stage you may not get the help you may need to live unaffected. I have empathy for every stage of disease.
Another summary is my lifestyle. I love BMX biking, more than anything. Being active has always been a big part of my life from; running, working out, gymnastics, diving, swimming, snowboarding, road biking, climbing, hiking, horseback riding, camping, and travelling are all things I participate in often. I never drank, tried recreational drugs, or smoked. I love challenging myself, and things that seem like an escape or a break from life, do not interest me. I would much rather challenge myself and learn something new then to get high, feel funny, and accept myself for not pushing my limits, all the while creating chemical imbalances and over usages of my own biochemicals. I try to not judge people who do enjoy those vices, but moderation and responsibility transcend all aspects of life, so if those substances are abused I will not respect it, or dismiss it simply because of an altered state of mind. I think everyone needs a break from their lives, healthy or not, but for myself I would rather find my release through art or activity and knowledge, than through a change in mental state. I almost regret having such strong mental defense walls built up against marijuana; it seems to help a huge number of IBS sufferers. I have been offered THC legally through medical prescriptions; I just feel the side effects of that drug are not worth the positive effects, when I look at it from neutral point of view, just like any other medication I consider. Most activities I participate in stopped because of my health and situation for about 3 years, But I did take steps to get back to it every day and never gave up for more than one cry. Here is how I got my life back…
I will separate this into; Part 1: Diet, Part 2: Exercise, Part 3: Symptoms along with mentality.
Part 1: Diet.
Everyone’s diet is going to be different, just like your symptoms; you will have to find what is right for you. I started my diet from scratch, I would eat only white rice, soy, tofu, and would mix (with the rice) either a small amount of; sliced turkey breast, tuna, and ham, egg, and sometimes add unpasteurized honey for taste. I took supplements and had blood tests every week, to watch that I wasn’t going to get scurvy or some shit. I drank either sports drinks or water, also would have a banana as a snack. The theory was no spice, gluten, preservatives, or dairy and everything I was eating would digest easily and pass through my colon without tearing it apart. I would say first set up a base diet, so you can control all the factors of what you eat. Setup a diet of your choosing and eat only that for say 2-3 weeks ( I was so sick I went for 1, 1/2 years) and when you feel you are adventurous enough, or can take couple days of rest if you get sick, add one and only one thing to your diet that will benefit your body (don’t add Oreos because you miss them, try adding some better protein or some oats etc.) and watch that change for a week and see how it affects you. I kept a daily planner and wrote down every bowel movement, the time and described it (mostly Texas chainsaw massacre or saw IV as descriptions) also what I ate and at what time, any emotional changes or stress or activities were also logged. The point is to remove as many variables as possible, so you can learn your body and what affects you, the goal is to find a diet that works for you or makes you feel alright and not get sicker, that also provides you with the nutrients your body needs to repair and function, so you can focus on other things.
Food may no longer be a joy of life while sick or flaring up, but through self-control and experimentation you can find a diet that you tolerate and that keeps you healthy. We all slip on a diet, with myself sometimes, I would realize that I was going to be destroyed by a food I wanted to eat, but if it bugged me for more than a month and started to bum me out, I would eat it and accept the consequences of a bad week or two after. Self-control is key, if you trivialize cheating by eating something bad every month or week, you will ruin your progress and health. Mental health is just as important and if it is making you sad, depressed or angry, when you can’t have something, go out and have it, just accept the consequences that may include.
Part 2: Exercise
I’m 5’11’’ and normally 155 lbs, when no muscle is built. Prednisone can cause weight loss or gain (Among every other shitty side effect known to man) and got me to a point where I was 210lbs and hated myself. Even though my weight was mostly water retention and wasn’t my fault, I took responsibility for it and decided to say fuck what the doctors say, I’m working out and will find a way to BMX again.
There is no way, in my mind, that sitting in a bed and letting your body waste away for 3 years, is better for me than pushing my limits and trying to learn to work out within my limitations.
PREDNISONE again was the main culprit here; it drained my bone density, told my hormones to gain and keep weight, turned my emotions into a rollercoaster of highs and lows, disintegrated muscle and didn’t want to build muscle either. I focused most my attention of defeating Prednisone; I researched the drug, talked to doctors, personal trainers, got information and made some theories of my own.
When I was healthy I could push myself in a workout, past the burn and past my limits, it would be ok. On Prednisone I won’t repair as quickly, I will injure myself and take 5x as long as a normal body to heal just from pushing into muscle fatigue, so I work out to the point of burn, then slow or maintain that and play with the burn, but do not push into it or through it. I stay at a level of slight burn and exhausting myself. Light headedness will happen a lot with low blood levels, low iron and anemia, so I was always careful to have a place to rest and spotter, or work out partner, because I passed out quite a few times, even when I thought I would be alright and didn’t feel I was pushing myself.
I stayed away from weight training or anything even close to heavy and focused purely on cardio. Once your cardio is up, you can recover faster, move easier, and for longer periods. More muscle, takes more energy, where energy is the most important resource to me. Screw looking good, I want to preform good. I started with the elliptical machine, it was low impact. Running put me in pain and was too harsh on my body with weak joints, osteoporosis, and arthritis. Our bodies are fighting to heal themselves, but also not getting nutrients, it’s digesting blood and the medications are fighting us (Wow we have a lot to use as excuses to back down, but a true test of a person will be finding the answers to step up). Do not think to yourself you will perform or progress anywhere close to a healthy person. Do not set their goals as your own. I use an example quite frequently: If a normal person did pushup, as many as they could, 3 times a day, every day, they could most likely go from 1 completed push up to 20 pushups in a month…It took me 8 months to get from 1 push up (barley) and wanting to cry to 10 pushups (also if you can’t push up, try planking and lowering yourself down and in a month or so you should be able to start pushing back up) So yes progress will be slow, but only slow compared to someone else. You are you; this is your life, other people’s progress does not matter. I have seen the change activity made, it was beyond worth it. My g/f can go to gym 2 times a week and destroy every progress record set for myself over the year, within the first month. I see it as we are both healthy and that is beautiful. I started with elliptical, stretching and stationary bike, all low impact and cardio focused. I graduated to a road bike, running on sand/walking/jogging, yoga, and swimming. After a couple months of those activities, your inner muscles are much stronger and able to take impact while recovering quicker. I moved on to; weight lifting, BMX-ing, running on treadmill, and advance yoga. The process took about a two years and I never gave up, usually about 3-6 days a week 3 hour workouts.
Part 3: Symptoms and mentality
This is where I really need people to take my words with caution. Always put what you feel is right before anyone else’s advice. I don’t suggest this to anyone who hasn’t tried many other options, because it’s dangerous, but it worked for me. If you feel you absolutely have to try, start with much less extreme numbers.
I found that even though I was always extremely tired and could lie in bed and sleep for weeks upon weeks, I never felt rested. I also found if I went on the elliptical for 2 hours, I felt the same (I guess you can’t get more dead tired, than dead tired). I have found I can exert myself for as long as I want, as long as I don’t injure any muscles, push myself too hard and pass out, or things of that nature.
If I have a low impact, but cardio intensive workout, it does not change how I feel, I will still be weak the next morning. I could also not work out and sleep for the next decade, but if I stay in bed and rest I will still feel tired while wasting away. If I worked out, I lose nothing and gain a small improvement in cardio, in life.
Things change when you injure or rip muscle or try to build up too much at once. This process only works on activities you do often and are low impact. Your muscles are weak as fuck, so respect them. They will take 2 weeks to a month to heal, not just a 3 day turn around, like a personal trainer would suggest. An injury can be even worse, so be careful. Another thing I found was, if I ate food my symptoms would be bad and I wouldn’t be able to work out or be active. My diet daily is around 1500cal, which is very unhealthy, especially if doing 2500cal workouts, every couple days, but it is what I found worked. Underfeeding myself is not something I plan on doing forever, just until I can get healthy enough to eat again and handle it. With this technique I always have blood tests done, along with discussions with dietitians and doctors to watch I’m not lacking anything important in my body.
Another theory is, if Prednisone wants to make me fat it needs excess sugars and energy to turn into fat. Unhealthy as it may be I will undershoot myself with sugars and calories so that my hormones can’t grab onto anything to turn into fat, unhealthy yes, don’t do it. Losing weight helped me with my mentality and I saw it as progress, when I got back to my normal weight, vain as it might be. Now contradicting myself, the goal was, and always is health, not looks or weight. Low calorie intake was just how I got to the point that I could build off and could start from scratch yet again. Controlling the variables while I add one thing at a time, to get me back to healthy, while dealing with the restrictions I found along the way.
I’m not superman or invincible and no one is. The days I felt like sleeping, I did, or when I wanted some more food, I ate it. It is just as important to keep level headed and enjoy life. If you feel like you hate your life, you need to change something within the boundaries of what is possible to change. This process is, and was hard. I put myself first and my goals second. Instead of looking for a break and hoping things would change, I try to take steps to change my problem, but if the steps stress me out too much, I’m doing myself no favors. I do try to stay rational and still take at least one step towards my goal a day.
This is the basic outline of what I have done, It maybe be difficult process and never ending, but getting back on my BMX, running 10km, road biking 100km, or learning my first standing backflip made it 1000x worth it. Crohn’s and the process through it made me truly appreciate a lot of things in life and ignore, or not even recognize the small problems so many people tend to live their lives by. If your day is bad because someone cut you off on the way to work, guess your day was pretty amazing and you should be thankful. Literally no one important or worth your time and thought, cares if your car is scratched, or your phone is old. Live for you and live for your passions. Don’t worry about everyone else so much, they are not against you, they are just for themselves, and ya Crohn’s sucks, but a smooth sea, never made a skilled sailor! – Mitch Anderson (Rii)
P.S. This is my first writing piece on Crohn’s and second public writing. I would really appreciate feedback, so I can improve. Hearing your thoughts will be very helpful. I have writing a book on my bucket list, so this might be something I can expand upon much more, if it helps people out in anyway. Excited to see how this is accepted and if it helps anyone else, but let me know! Communication can really help.