My 27 year journey so far…
I do not often talk about my illness to people or write it down, however I will for this Community. This is my story…
I first became sick 27 years ago as a teenager and I was finally diagnosed about 6 years after (at age 22) with Crohn’s Disease. Back then none of the Doctors said much about it other than it was a digestive disease with no cure, one that could be treated with medication or at worst surgery, but yeah, that I would most likely die from it at some point. Heck of a thing to tell someone, right? I am sharing my story not only to enlighten some to the fact of the invisible diseases like mine, but also to educate others on what I have learned the hard way over the last 20 years. These are just some of the things Doctors do not tell patients or you may not know about that person walking down the street you so harshly judge.
For instance, I have had people make nasty remarks while waiting in the bathroom line about the fact that I used the Handicapped bathroom. What they didn’t realize is that I have an ileostomy and it springs leaks left and right and many times I’ve had to change the entire appliance in some public bathroom. (Which as bad as that is, it is still an improvement from the days of dashing to a toilet only to not make it before what little control of my sphincter I had would give way.) Many look at me and decide because of my age or physical appearance that there can’t possibly be anything wrong with me. People judge me all the time because I am legally disabled and no longer work. Strangers, friends and even family members just never understand what it is like, why you just can’t simply do all the things they think you should or that come easily to them. You are often told very hurtful things like, “you don’t look sick” or “you’re too young to have any real health issues”, I have even had people say that I am just being lazy or not trying hard enough.
Other things those people do not know and what Doctors don’t tell you are things like, it is more than a little tummy trouble. It is an autoimmune disease that affects your entire body. I spent years having Doctors look at me like I was crazy or some kind of hypochondriac because I had numerous yet often seemingly unrelated or bizarre symptoms. But over the years and with my refusal to give up, my Doctors started to realize I wasn’t crazy, that my Crohn’s was out of control and attacking most of my body. (I learned you have to do the research, learn as much as you can about your body, diseases and symptoms and most importantly, you have to be your own tough as nails, determined, ADVOCATE!)
My Crohn’s has affected my vision, caused heart inflammation and liver damage, skin flares and rashes, weird allergies to tons of things (food, medication and environmental), severe malnutrition, eating issues, nausea, dehydration, diarrhea, anemia, migraines, heartburn, ulcers, fistulas, vitamin and mineral deficiencies, reproductive organ issues, unbelievable fatigue and chronic debilitating pain throughout my body. Because of my Crohn’s I have had more than 10 surgeries in 20 years and nearly died more than once. I have had many extended hospital stays, lost all of my large bowel and most of my small ending up with an ileostomy, developed Stage 3 Renal Failure and have an abdomen/ pelvis full of adhesions and scar tissue.
In 2013, I underwent surgery a 10th time to have my right broken ankle repaired and a pressure port implanted in my chest so I could be artificially fed with TPN feedings straight into my heart. However, as the case usually is for me, what can go wrong does. Two weeks after surgery I ended up with a serious MRSA infection in my foot. And then wound up with a condition called Red Mans Syndrome (basically an allergic reaction of red hives on every inch of your body) because of an allergy to the medicine for MRSA. Then a tech in the MRI dept literally exploded the port in my chest when she mistakenly used it for the contrast, which triggered another but different allergic reaction due to my allergy to IV Contrast. So, I went through surgery again to clean up all the messes with a month long stay in the hospital, then many months recovery at home.
I share this experience because, for me, most of my surgeries have ended up with complications and lengthy recoveries. Also the only time I have been in remission is for a year or two after surgery before the disease grabs back ahold. People never realize when you have an autoimmune disorder that nothing is simple or easy especially surgeries. Throughout the two plus decades of my illness, I have been on just about every medication they can think to give me with my daily regimen at times being over 30 medications a day. Another thing they do not tell you is the meds are just as bad as the disease and many come with a steep price of side effects and can even cause more damage as some of them are very nasty drugs. I now have something called Chemo Brain because of the severity of the medications I must be on. I am also a greater risk for developing other Diseases like TB, RA and Lupus so I must always be monitored. (Many people with Autoimmune Diseases end up with more than just one. I currently have three. Crohn’s Disease, Hashimoto’s Thyroiditis & Fibromyalgia) These meds trash what little is left of your immune system meaning even a common cold will knock you on your ass for weeks to months and recovery or healing time from surgeries, injuries or broken bones can take months to years with the added bonus of often having unforeseen complications. You are also much more susceptible to contracting common and serious infections like MRSA, especially from hospital visits.
That is just some of the body part of having this kind of disease. However there is another part just as serious and that is the emotional component. Things like anxiety, depression, stress, insomnia and self esteem issues. Many have a hard time going out or spending time with others. We love people but find it too hard to “pretend” we are fine for the benefit of others. We may not answer the phone for the same reasons. We may get lost in TV, games or books to get away from our reality for awhile as they are the only escape from a body and life you have no real control over. We may sleep during the day or for extended periods while we are often awake all night and sometimes do not sleep for days. Most of these are my normal. I suffer from severe anxiety and depression. Between the stress and chronic pain most times I am unable to tolerate even the slightest touch from a loved one. Which then leads to feelings of guilt and a lack of self worth. People with a chronic long term illness often feel like we are a burden or unlovable and not worth the trouble. We live a life full of Doctors, procedures, treatments and the knowledge of how painful our life and death will most likely be. I know all of these things because I have experienced each one of them personally. Granted my experience has been more severe than many with this disease. There is a small population of people with Crohn’s who do not respond to treatment of which I am one. I do not need sympathy or well wishes, nor do I want undo attention because of it. I have led an interesting life, known tremendous love and have a special kind of compassion due to all I have been through. Though much of my story sounds daunting I am extremely grateful, as I was told I would never live past 30 and this year I will be 42. Also when my illness is at it’s worst I just remember at least I am an adult who can try to understand what is happening and communicate my needs. I remember it because there are so many children with this disease or others that don’t understand and can’t articulate what they need or where it hurts. So please send them your thoughts and well wishes. All I ask of the world is a little understanding and compassion as you never know just who has a harder road to travel than you might. To remember what we were taught as children, to treat others as we would want to be treated. Many of my dearest friends and loved ones suffer from other invisible diseases, and I bet some of yours do too.
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