Young, Sick and Invisible

My illness has shaped me,
But it does not define me.

Guest Post: 'Krista's Story.'


Ducks over water

Hello all, I am Krista Evans, creator of crohnsandcolitiscrusade.com, i am happily single with a furbaby! I have Crohn’s Disease, Ulcerative Colitis, Arthritis. Crohn’s Disease is chronic inflammation and scarring of the GI tract, Ulcerative Colitis is inflammation and ulcers in the colon, arthritis is inflammation of joints.

Before diagnosis, I enjoyed an active lifestyle - hiking, running, kayaking, baking, international travel; I lived and worked to travel. I’m unable to work full time, the fatigue, brain fog and active fistulae tend to overtake any semblance of attempting to work. Before illness, I had a range of positions, from licensed massage therapist/instructor to on air talent, videography, office manager and project coordinator for an international firm; for a time, I worked 12-hour night shifts as I put myself through college.

Krista

7 years ago I developed my Chronic Illness, it began overnight. Beginning signs were going from cast iron stomach to not being able to consume mayo, bread and most foods without immediate bathroom visits, plus intensifying, debilitating cramps.

The diagnosis was not easy; the first GI dismissed me as having a virus and told me to come back in a month (at this point weight was dropping rapidly as I could keep nothing in my system and I had a fissure). The following week I saw GI#2 who flatly refused to perform colonoscopy – he said I was “too young to have a colonoscopy” or GI issues in general, despite my family history of IBD. GI #3 was grand, I went into his office explaining how if he didn’t agree to perform a colonoscopy to let me know because I was not going to waste my time. He asked questions, examined me and was quite perplexed at why the first two GI’s were so dismissive. As he stated, I had “classic signs” of IBD, which needed immediate attention. The next week I was in his office for a colonoscopy, at which time he diagnosed Crohn’s and Ulcerative Colitis. My insurance didn’t cover GI#3 because he

was out of network, but hey, the first two idiots were in network and I would’ve perished had I stayed under their “care,” so I paid for the procedure myself. I am under the care of my seventh GI, who has been the most helpful and brilliant of them all. My GI tested, diagnosed and is successfully treating me for MAP (mycobacterium avium subsp. Paratuberculosis), a bacterial infection which causes Johne’s Disease in cattle; Johne’s is similar to Crohn’s Disease in humans and MAP has been scientifically proven to be one cause for Crohn’s and Colitis development. It is treatable and remission has been achieved in clinical trials.

Krista

I searched the internet immediately and I still do; technology and treatments are ever evolving and I want to know when something new, with the potential to be helpful is publicized. Flares are systemic: crippling abdominal cramping to where I only wear pants with elastic waist (can not tolerate abdominal pressure), minimum bathroom visits 25 during day, 10-15 at night. At times, I feel the immediate urge to go but have nothing in my system. Bathroom visits consist of wrenching cramps, cold sweats, nausea (the kind where my mouth waters and I have to constantly swallow to keep from getting sick), rectal bleeding, extreme weight loss, muscle mass loss, alopecia, bony bum plus 7 fistulae make it next to impossible to sit. I want to curl up in a ball because the pain is so severe, but that makes my stomach ache. Between bathroom visits and arthritis flares I sleep very little (can’t find comfy position); I suffer anxiety, depression, brain fog, cognitive impairments from lack of nourishment and mouth ulcers during flares.

The pain is like drinking battery acid and having multiple knives thrust into your abdomen and bum. It’s very crippling. A flare can last from a few weeks to months; I become housebound, sometimes using walkers and canes for assistance, my clothes become 2-4 sizes too large. I become depressed and I mourn because I can’t work or even enjoy simple pleasures in life. My debt increases and I qualify for zero assistance (not even food stamps) because I’m not pregnant nor have kids; being a natural born citizen doesn’t help me either. My only resorts are to sell my things and charge everything from prescriptions and doctors’ visits to a can of tuna. It’s very humiliating.

Krista

I manage my flares with lots of praying, eating a bit of bland foods (appetite fails), no oil, dairy, gluten, spices, lentils or red meat. I consume lactose free yogurt and HY26 – a supplement, which helps patch the holes of leaky gut, by increasing intestinal immunity. This lactose free, prebiotic has been revolutionary in my health and the way I feel as it tremendously reduces the arthritis pain and gives me better outcomes in the bathroom. My GI formulated this supplement and it is available here: https://www.facebook.com/shafrangastro/

My main triggers include stress, hidden gluten/lactose/preservatives in food, sometimes no triggers can be traced. I take Biaxin, (to treat the MAP referenced earlier), a biologic, Vit’s B6, B12, Biotin, D, Calcium, Magnesium, L-Lysine, VSL #3 (probiotic) and HY26. I’ve tried two biologics, which worked short term, on my third biologic now.

My biggest tip would be to research as much as you can – this is your life now and you must highly educate yourself on all the nuances it entails; don’t be afraid to ask questions to your healthcare team and specifically, don’t be afraid to say no if you disagree with them in any way. We as patients have a voice these days and we must use it. We must be our own advocates. Expect others to drop out of your lives because they cannot handle your diagnosis; expect new ones to come into your lives that can and will wholeheartedly champion alongside you.

The positive side of my illness would be that I’ve created a website/blog about my experiences; I can reach out to others and educate them about what I think is the cause of my UC/CD and my treatment. Another positive are the friends I have made during this journey – these are the stick to your ribs kind of friends who don’t easily scare. Negatively, my social and dating life is still recovering from a nose-dive as others just don’t understand the day to day struggles because I “look fine.” Huge financial toll, I lost my pre-existing health insurance when Obamacare took effect, yes you read that right. I pay my bills by charging and when I want a new blouse I head to the thrift store. I look for bogo sales for my specified diet, and I drive a borrowed car as I could no longer afford mine. I would be homeless if it were not for my family taking me in. As you can tell, this has been devastating to my emotional & psychological well being as up to my illness, I was overly independent, self-reliant and money was no object because I worked hard and saved. I’m exhausted much of the time, which makes working difficult. Because I have my college degree and since I’m “not sick enough” I’ve been denied disability 4x. Apparently those with higher education are immune to disability; wouldn’t that be novel? I used to be a world traveler as well.

Krista

16. Won the other hand it has stopped me from being completely independent, international travel, having an income, enjoying hobbies, going to family outings and birthday

parties, dating, and extreme physical exercise. I used to spend 2-3 hours, 3-4 days a week at the gym plus running.

I’m not dating anyone purposefully because unless someone has experienced chronic illness first hand, they usually do not understand daily life for me. It’s easier to be single because I don’t have to deal with someone’s unmet expectations if they cannot handle nor want to understand the intricacies of chronic illness. I tend to be judged by the chapter of my life someone walks into at any particular time.

I stay positive by surrounding myself with positive, uplifting people who only have my best interest at heart and with whom I can help lighten their burdens. My faith in Jesus keeps me going. This illness has allowed me to connect with amazing people who are on the cutting edge of treatments plus those fighting the good fight in raising awareness and challenging me to push past my limits. These are the new people who come into your live after others have excused themselves; these are the ones you want on your team and whom you can count on to always be there for you. Chronic illness does not daunt them. My parents and friends who have become family are a huge and positive influence on this path.

19. What is your hope for the future? My hope for the future is to raise awareness for these particular diseases by way of treatments, research and being a voice for those who cannot convey how lives changing these events are. I want others to read my story and decide for themselves whether to consider the same treatment options; most importantly, I want others to know they have options in their treatment. The standard curriculum for physicians is not necessarily the best treatment approach and a lot of physicians simply are not aware of non-mainstream treatments. This opens the door for you as a patient to educate your healthcare team. If they do not listen or dismiss you, find a provider who will. We have just one life and we must be our own advocates; add chronic illness to this mix and you may not have a lot of time to dilly-dally as others decide what’s “best” for you

- Medicines described in this blog are prescribed to this individual by their Doctor. Always consult your Doctor about what is best for your needs before taking any medication -

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