Health Update 6: Test Results

Health Update 6: [warning this one is long and honest, maybe too honest so this is where you skip if you want to]

First I want to talk about why I am posting health updates, as a couple of folks have asked.  I have friends and family in many different locations who want to know and having multiple conversations about my daily medical indignities are too emotionally draining.  So I write about it here and post once – those who want to know can keep up and those who don’t can hide my feed and not read them. I would rather people know the reality and not assume so I try to be as honest as possible without being too gross or too angry or too whatever.  I write about my health updates here so in the little time I get to be social with people I can talk about other things.  I long for distraction away from the failings of my body, and to get lost in the triumphs of their lives. I really appreciate the supportive comments from friends; they bolster me on the difficult days.

I have had good news and bad news.  I saw the GI specialist yesterday.  We went over the test findings.  First, the good news – at this moment the blockage in my small bowel that I have been enduring for 10 weeks has cleared, meaning the flow through my GI tract is moving without a internal physical obstruction. However there are three points of narrowing along the small bowel, from scar tissue, which slow the process in my dysfunctional system and these narrow spots remain points of future obstruction.   The GI Specialist after reviewing previous surgical reports and medical history has determined I am not able to withstand any more surgery to try and correct these narrow places.  He agrees with my doctor that the risk of the surgery is worse than continuing to live with what we know about my system. This is not anything I did not know already.  Although, I have to admit to holding onto a glimmer of hope that there would be some solution, some fix, some magic new advancement that could potentially make things better; however naïve that sounds.  But there is not a magic solution and I am in the same place.

I have a surgically altered, damaged GI tract which is unable to digest vitamins and minerals, which compromises my immune system, which causes chronic unrelenting pain and is prone to dangerous, possibly life threatening obstructions. I will be forced to receive my vitamins and minerals from IV infusions for the rest of my life and the chronic low vitamin levels damaged my bone marrow. My damaged marrow unable to produce sufficient red blood cells and I will be forced to get blood transfusions for the rest of my life when my blood volume become too low.  This condition will continue to degenerate over time and eventually I will have to live with NG tubes for nutrition and colostomy bags.  The low vitamin levels cause metabolic bone disease, a condition where my body, low on calcium, draws it from my bones and my bones become weak, as the honeycomb structure inside grows wider and less stable in structure.  That striping of the structure inside my bones makes them maluable, and they bend with movement under gravity.  As one doctor put it, ‘it will be a long slow painful process leading to immobility and death’.

The low vitamin levels cause a myriad of horrors; I don’t want to get into all of them but I will say I am prone to the conditions only pirates used to get like scurvy, osteomalacia, beriberi, pellagra, hypocobalaminemia, paraesthesia, ariboflavinosis and more.  It is difficult to be treated for these conditions because modern America does not have many problems with vitamin deficiency so few doctors are versed in it and fewer able to understand what it is like when the text book solution does not work because my GI tract no longer absorbs the treatment.  So I live with pain and symptoms from these conditions as well.  For example, the pain from the osteomalacia is why I try to not take stairs, why I walk with a rolling red travel bag that, functions as a cane and hides that I depend it when I walk.  My bones flex with gravity so steps up and down, sitting too long, standing too long, going from sitting to standing, twisting, and most movements are hideously painful on good days.  If you are interested in what the other symptoms are of the condition caused by vitamin deficiency, look up the other conditions and see the list of what I deal with, needless to say they make normal life difficult. Over time I have gotten very good at masking the pain, and presenting as normal as possible, until my body fails and blows my cover.

The GI specialist did go out of his way to compliment me on my attitude and the amount of research I have done on my condition. Apparently I am remarkably positive and resilient after 10 years of living through this condition. He went on to state that the behaviors and actions I take daily are the right course of action and moving me towards the best possible outcomes.  

He was impressed with my dedication to a controlled and discipline approach to pain management.  Pain medication is a double-edged sword for GI tract conditions.  Most pain medication disrupts the ability for the GI tract to function properly, so taking pain meds for GI tract pain will actually make GI tract pain worse. The ultimate Catch 22.  I work very hard to keep my pain medication levels as low as possible, to avoid the pitfalls of developing higher tolerance to the medication. I voluntarily detoxify myself every 90 days; placing myself into withdrawal to reset my tolerance levels.  This is a remarkably unpleasant 5-7 days and a necessary evil and why I have stayed at the lower levels of my meds for over seven years.  Pain is a hell of a grindstone; it wears on you over time and changes you in ways that are difficult to describe.

The GI specialist suggested that I go back to into therapy to talk about what it is like to live with such a difficult chronic condition. I have been in and out of therapy and support groups over the years and I agree with him that speaking to some one again might be beneficial. The interaction with therapists and groups provide a much-needed place to talk about the fears and anger you can’t burden your family and friends with. They function as a safe place to vent the toxic ideas, which inevitably swirl in your mind around how much your existence is hurting your family.

My PICC line is removed and I am currently working on staying off the line.  The problem is the continual nausea.  If I cannot keep fluids down then I have to be on an IV. Currently, I take high dose of anti-nausea medication that dissolves under my tongue. They help me try and keep fluids and other foods down.  My system is still so inflamed from the obstruction and the healing is going slowly. But it is wonderful to not have a tube inside my artery and have to be connected to a pump all the time.  Now it is about the slow a steady road back to my new normal and discovering what that entails.   The support of friends and family has been wonderful. It is their support and kind words that make me want to keep fighting.  They have a habit of telling me to ‘not worry’ and to ‘try not to think about the things that will stress me out’.  This is a kind notion but an impossible one.  Medical bills stack up, and when you hit the ever-deepening understanding of how much of a fight the rest of your life will be stress comes with that.  Any thoughtful person can’t help but understand the level of burden your medical condition, the deterioration of your body and the growing cost of your treatment will place on your family.  I have never been afraid of dying. My fear is living in the pain and deterioration of my body and mind. Death is easy.  Living is hard.

So it was good and bad.  I am out of the immediate danger for this obstruction and now it is time to recover as much as possible before the next obstruction

I am reminded that I am supposed to add this link about the fund raising drive started to help us with medical bills: https://www.giveforward.com/fundraiser/h9l2/gwen-templeton-s-recovery-fund?utm_source=facebook&utm_medium=fb_share_stream.share&utm_campaign=vanity_page_P3P&og_action=hug&t=3&fb_ref=1114770

Health Update: The Big Test

Update after big test: The test went. I had all the expected fun and difficulties. One hour in and I could not keep the dye down, so we had to stop and re-up the anti-nausea medication. The test continued for five hours. I only have preliminary findings and will meet with the GI specialist on 22nd. So far we are worried that my motility is much slower, this could be nerve damage or scar tissue, after so many surgeries it is difficult to tell. There are three points of serious stricture, this is one more than Stanford Med found before my last surgery in the same test in 2010. So most likely more scar tissue has grown since that surgery. This is the main problem, every time I have surgery to remove or fix scar tissue more forms. My colon shows signs of inflammation, not out of the ordinary after dealing with a bowel obstruction. The surgeon will most likely want to do another surgery, but there are big concerns from me and my doctors that another surgery risks serious complications. The kind of complication which greatly change your standard of living and not for the better or end it all together. I trust my Yale educated doctor when she looks into my eyes and tells me she is worried I would not live through another surgery. That leaves me thinking the "devil I know, is better than the one that will grow". There were some other strange findings but I don't want to talk about those until I meet with my GI Specialist.

I got home from the test wiped out and in pain. I crawled into bed and fell asleep for hours. The next few days will be difficult. It takes a long time for my system to pass the barium dye and the process is very painful. All part of the process.