in the midst of uncertainty

“as your faith is strengthened, you will find that there is no longer the need to have a sense of control, that things will flow as they will, and that you will flow with them, to your great delight and benefit” – emmanuel teney

one of the first things you have to learn about living with a disease is learning to accept that you have no control of what happens to us in some situations, but we have full control over our attitude and how we decide to react. though i may be in the middle of an unpredictable disease, by taking responsibility and doing all i can to control the rest of my body and what i do with it, i am taking control. running and training is my way of controlling what i can, even when im literally running from a treadmill to a bathroom..

i feel pretty in limbo this week. after having so much anxiety to see which direction my new treatment will take me, ive developed Google-itis & have done entirely too much research on the 2 drugs that will hopefully get me  where i need to be.  everything ive google so far has been negative & unfortunately, there are a lot of patients that put their horror stories online for the world to read.  even more unfortunate, there is a correlation when drugs start to work.. there is a tendency for patients to stop using online support groups once their drugs start working. most of the time, they dont go back to the online forums and tell them their success, since they no longer need the support or validation of others.

so i guess the theme of the week is going with the flow, something i really continue to learn with this disease. many years since living with this disease, my time of the day i seem to really struggle with is morning shortly after waking up. when you wake up, so does your immune system – much like my brain, my stomach does not like mornings either! lately though, ive been having increased pain & symptoms that have been extremely disruptive to my sleep. learning to go with the flow on little sleep has been difficult. i honestly cannot wait to see my gastro.. (who says that?!)

in the meantime, a lot of deep breaths will be taken and prayers will be said.

xox,

kelly

ears of your life are the ones in which you decide your problems are your own. You do not blame them on your mother, the ecology, or the president. You realize that you control your own destiny
Read more at http://www.brainyquote.com/quotes/quotes/a/albertelli122035.html#FdWcikLGlrjTFLaQ.99
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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