Saturday, May 26, 2018

False Hope



With the changes to my health over the last two years, I can't help but believe that this is the healthiest I will be. Actually, in truth, I believe my healthiest days are behind me and this is my new level of healthy - a step down from where I was and therefore everything else that is to follow will only be worse.

All in all to try to fix the problem of my declining health over the last two years, I've endured 3 upper scopes, 1 lower scope, CT scan, labs including stool specimen testing. And although things have been ruled out as culprits and some culprits have been found, the underlying issues remain - I have chronic nausea and pain. And perhaps this is all primarily from the adhesions as my doctor diagnosed last year. Even if this is the case, the fact then remains that it will worsen as the adhesions continue to worsen and surgery for adhesion removal is inevitable - and so are risks that come with such surgery.

I lived with an ileostomy for six years before I was finally able to have my ostomy reversed with a straight pull through. Reversal wasn't a guarantee for me and whenever there is a surgery involving my remaining intestine, there will be risk of another ileostomy - only truly permanent this time.

This is my fear for the future. Although better equipped to adjust and accept an ostomy now versus when I was a teenager, I still do not prefer an ostomy. With all the problems that my straight pull through has with the development of short bowel syndrome, I still do not regret my decision for reversal and I want to maintain my reversal.
And to further complicate my health, I was recently diagnosed with Acquired Polycystic Kidney Disease. I don't have a family history of Polycystic Kidney Disease and haven't undergone genetic testing for the gene so it is assumed that it is a sponatenous manifestation within me. My nephrologist advised I have an estimated 20 years before I start to experience kidney issues, which at that time it will be likely that my kidneys will start to fail from an abundance of renal cysts and will require kidney transplant or dialysis if I want to continue living. My nephrologist advised that due to my Familial Polyposis, I am greater risk of cysts and cancer occurring. And so I will be monitored once a year with a CT Scan to monitor for cysts and tumors on my kidneys. As long as I can stave off my GI issues from worsening, I have an estimated 20 years of health remaining before I will begin to experience another change in health.

I struggle with this reality and with the present. I'm told to not give up hope for improvement of my symptoms. But at some point, false hope can be dangerous. I want my health to improve and perhaps it will but the odds are, this is it for now. I'm remaining open to trying a few more things but I'm trying to balance myself between positive hope and false hope. I've learned that when we cling to false hope, we are hit hard with a different reality. A reality that we could have been better prepared for if we had accepted the chance that exists for what we fear.





4 comments:

  1. I'm so sorry you've had to go through so much, and I can appreciate the notion of false hope potentially being dangerous in the sense that you can put too much into wanting something better, some improvement, and then feel so let down and disappointed if it doesn't happen. I struggle with the notion of acceptance with my other health issues, and I think things "should" get better, than it can't simply stay this way, but with other things, such as with my own ileostomy, I'm coming to terms with thinking it may be for the long haul. It's a tricky one. You've written this so honestly and I think they're good points to keep in mind, because it's about balancing optimism with realism and going forward with positivity nonetheless. Sending love your way.
    Caz x

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    1. I totally agree. Finding balance is such as important coping tool for anything and it waivers so much, going up and down with what life throws at us. I find it a difficult tool to master. I wish you the best with yours!

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  2. Amazing post and so much to think about - I wonder if the concept of being open to possibilities would sit better? There's no investment in that but there's no feelings of giving up either? So much can happen in 20 years x Lowen @ livingpositivelywithdisability.com

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    1. True, There's a lot of possibilities with medical research within the next 20 years...fingers crossed it's even better than we can imagine

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