what i want you to know about my IBD

there are many things you may know after hearing many commercials about IBD. while some of these symptoms are very valid for many people with crohns or colitis, there are a few things you need to know that pharmaceutical companies are not telling you.

1) its NOT all about pooping. contrary to what most pharmaceutical companies show on TV, pooping isnt the only thing we have to worry about, unfortunately. to get a bit personal with you for a minute, 60% of the time, i dont deal with diarrhea, i deal with painful muscle spasms, cramping & constipation. i dont mean a tummy ache that with over the counter stool softener, it will go away. i mean pain so bad it wakes you up out of a dead sleep & makes you want to pull out all of your teeth, pain.

2) the ‘in’visible pain. this pain is so difficult to explain. from “simple” pain from eye inflammation & mouth ulcers that may be evident to you since youre able to see it, the stomach pain, nausea and joint pain you cannot see inside of me is indescribable. dont be impatient with me if you find me walking behind you several feet – im likely in the middle of a spasm and youd never know or just left the bathroom after puking my guts out. there are nights when the pain is so bad, i am literally not able to keep it inside, but to exhale and scream would literally push me over the edge and pass out. most flares, i wish i could pass out from the pain instead. living with an autoimmune disease usually involves several organs. for me, my eyes, mouth, stomach, skin, lungs, muscle & bone and nervous system is affected. just because youre not able to see the pain, please dont minimize it. and please dont compare it to the flu. unless youve had the flu for 365 days of the past year. then we can chat.

3) i dont like cancelling plans. so please dont hold it against me when i tell you that i wont be able to make it to a social event. there is nothing i would enjoy more than feeling like a normal human being rather than being a zombie. ive unfortunately lost friends to this , who just dont understand & i get that. im not sure that i would want to hang around someone that cancels plans on me all the time either, but i would hope i would try to understand. leading me to #4

4) because of my disease, i have [social anxiety]. sometimes, it can be about the smallest things, like dinner or a planned event with a friend. before my diagnosis, just before a stressful event, i would have the worst flares of what we thought was IBS at the time.  i missed graduations, family functions, friends parties. over the years, its hard not to get anxious about possibly missing an event due to crohns or colitis, due to stress. if its a real rager of a social function, like a family wedding, my flares are also as a result, going to be ragers. i dont mean the fun kind of rager, like we used to have in college. i mean stuck in the fetal position & hope you live to tell the tale-type of rager. i think youd have anxiety if you feared shitting your pants in public.

5) your comments do hurt. for a little while, if i let them. your weight comments? theyre funny to you. i may laugh, but its not funny. calling me fat? good for you. calling me skinny? whatever. make fun of my cheeks? hey, im living. i have crohns, not cooties. im not contagious. making a joke or light of a serious situation may be your way of showing me youre uncomfortable with a situation – i dont expect you to be sympathetic or understand 100% of my situations, but please be respectful.  underneath the layers of steroid use, pale skin and sore muscles is someone who has been through a hell of a lot more than youd think “for my age”. id love to say that we live in a society where no one cares about your appearance and only cares about how you serve others and whats on the inside. unfortunately, thats not the case & likely never will be. this disease has caused me to be super reflective in a way im not proud of. if the only way youre able to support me is through silence or absense, please do this for me.

6) im proud of who i am. im not sorry if you find my facebook, instagram or twitter posts annoying. not only are they my form of therapy to vent into cyberspace, it allows me to connect with others in the same situation as me. i used to struggle with getting out of bed in the morning. & that was when i was 20! ..at the prime age you should be enjoying college & forming life-long relationships. immature & inexperienced, i thought my life was over when id wake up & see prednisone cheeks – until i learned that waking up morning after morning was a blessing!! i embraced who i was, became comfortable with time in telling people about my IBD after becoming educated about it myself. i lived in denial the first few years post-diagnosis and thats no ones fault but my own. not saying you can learn to deal overnight, but living with disease is MUCH easier than living in denial with disease. im thankful for my fellow IBD blogger, Mel, who taught me the phrase “coming out of the bathroom”. its true.  i spent too many years living in denial that robbed me of a few good youthful years (sick or not). i felt bad for myself, became depressed and hid in my apartment in fear society would eat me alive. i settled for relationships that were emotionally & physically bad for me. im not sorry that i came around & finally found the positives and now embrace the person i am. im a person first, who has a condition. if you find my posts annoying, ill most likely find you unaware. it seems the people who most often roll their eyes are the ones who know the least. as a patient who will likely live with these diseases the rest of my life, its my responsibility to help educate our community to help accept us, so we learn to accept ourselves. i wont apologize for being comfortable in my own skin, using my backbone & advocating for a cause i truly believe in. it took me a long time to feel this way.

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all i want for christmas is a set of functioning bowels (IBD awareness week 2013)

not to much to ask, right?? i know.. i know i should be grateful for the bowels i still do have, but for how often they hardly work (or is it working too hard??) i would appreciate a fresh set of them.

today i was supposed to have my follow-up to see how my levels are doing since being off Humira. so far the only physical things ive noticed as far as withdrawal from the injection are muscle aches and very sore joints; i can unfortunately tell with how much pain i have been in lately (not localized to one area). its been a long week at work & stress is trying to sneak its way in to my body. i think ive done a pretty good job of finding ways to eliminate most of my stress in healthy ways. i think most of the biological withdrawal will be evident in the next few months to come as far as increased stomach pains & more frequent trips to the bathroom, but for now, i want need to remain off biologics & enjoy the time im able to have without them in my system. ive only been off of them for a little over a month. even in just this short period of time my immune system is better, the psoriasis caused by the injection is lessening (but still evident), i have had no flu-like symptoms and my overall spirit has been lifted since i dont feel weighed down by an injection every other week.

ive been researching the two types of chemotherapy my GI would like to try out.  6mp & Methotrexate – both very risky drugs. Humira turned out to be a scary drug for me, but did not know this when i first started. unknown risks of long-term side effects.. obviously, anytime you start a new medication, there are risks, but these arent your typical run-of-the-mill side effects. these medications used to treat IBD are scary. these 2 specific therapies are used to treat different types of cancer including leukemia – thus proving how potent they can be.  its first side effect listed is obviously well-known, vomiting. next comes nausea, hair loss, easy bruising/bleeding (which is a huge concern in IBD patients; which is why blood tests are so frequent from possible worsened anemia), dizziness/fainting & joint pain/swelling. long term side effects include liver & lung damage.  i even read that one of these drugs is/was used for abortions in the past (!). there are many things to consider when choosing these drugs and which will prove to have more of a positive effect on ones body than worsening one’s health. how will these drugs impact my life? as much as i dont feel well since my colonoscopy, at what length do we have to go to achieve maintenance for my symptoms?

so why chemotherapy? for many patients that need to remain on steroids in order to stay out of a terrible cyclic flare, or have a severe flare after stopping the use of steroids, Methotrexate & Mercaptopurine are a way to achieve the same results without chronic steroid use. since i fall into the category of chronic steroid use and my body has seen an extent of long-term damage from them, its time to try it. i guess ill have the next week to continue my research and try to remain neutral regarding what i find. most of the articles that pop up are so negative, so im thankful for some of the online communities im a part of to help find the positive & put it into perspective, how these meds have been successful for them. i dont know what my future has in store for me, but im determined that i will find something that will work for me. the unknown is a really scary thing to me; im not great with change. researching and finding only negative response and feedback sucks to be honest. having a disease with no cure sucks.

here is more information on why treating IBD with chemotherapy has been effective in many patients:

http://www.med.unc.edu/gi/specialties/ibd/images/treatment-of-crohns/Methotrexate.pdf (VERY helpful website)

http://www.healthline.com/health/crohns-disease/6-mp-remicade-methotrexate