Aborting a Medical Procedure
Two of my doctors have been advising me and even pressuring me to get a colonoscopy for quite some time. I attempted this a few years ago but, after discussing my health issues with the doctor who would be doing the procedure, we decided the risk was too high so we didn't even attempt it. Now, I have a new mast cell specialist and he had referred me to a doctor to give a colonoscopy another shot. I was scheduled for late this afternoon.
In the meantime while waiting for this appointment date to arrive, I had another visit with my mast cell specialist. We briefly discussed how to manage my medications in the week leading up to the colonoscopy and we had a tentative plan in place. To be honest, I wasn't too optimistic about my health holding up through this procedure but I agreed to give it a try. The last thing I want to do is come across as non-compliant because I do need continued treatment. That being said, I also emphatically told Sheila that if this procedure was a problem for my health, I'll never try it again.
There are two high risks here with this particular procedure with my specific illness. First, stopping my medications is an exceptionally high risk since my body will usually crash into anaphylaxis when I miss just one dose whenever I lose track of time. The second risk for me is anesthesia. Enough mast cell disease patients suffer with anaphylaxis during procedures requiring anesthesia that there are certain protocols that must be met in order to minimize the risks of a patient cascading into anaphylaxis. Both of these risks are what ended my first attempt at a colonoscopy a few years ago but I agreed to give it a shot this time because my new mast cell specialist seemed quite convinced that I would have no problems. And, as I mentioned earlier, I didn't want to be deemed a non-compliant patient with a new specialist.
So, a week ago, I stopped taking my anti-inflammatory medications and prostoglandin D2 blockers both of which are also blood thinners. Blood thinners with this procedure are a no-go so I had to stop them a week prior to the procedure. As today approached, my bone pain, spinal pain and flushing worsened but it was tolerable for the short term of only a week. It was a rather painful week but I managed. I've been through far worse as far as the pain goes.
Yesterday, I needed to stop all of my medications as I started on the laxative prep. I had no problems getting through drinking down the combinations of laxative and Gatorade. I finished off Day 1 of the prep within an hour. So far, everything seemed "normal".
I started this Day 1 of prep at 3pm... the expected diarrhea started shortly after I finished consuming the prep. I kept going back to the bathroom... over and over. Around 11pm (a full eight hours after I started the first half of the prep), the diarrhea had slowed down a bit so I attempted to go to bed. At this point I was exhausted and feeling drained but was still thinking that perhaps this is all normal for a colonoscopy. I should also point out that I hadn't had a meal since the previous night so that wasn't helping my overall health at all either. I was already feeling rather crappy.
I laid down briefly at 11pm... but the diarrhea continued... and continued... and continued. By 3am, I was feeling absolutely miserable and overwhelmingly exhausted. I was getting bouts of teeth-chattering chills and the weakness was definitely becoming more pronounced. The diarrhea continued so I continued my back and forth trek between the bed and the bathroom until 8am.
At 8am, I knew I needed to get out of bed so I could soon start Day 2 and the second half of the laxative prep, but... my body was about at its breaking point. I reluctantly got up and made my way to the bathroom, yet again, with more diarrhea (before starting on the prep).
On my way to the bathroom as I got out of bed this morning, the weakness was beyond what I would consider normal even for my bad days, I was a little lightheaded, my face and neck were flushed and I was having difficulty breathing. I knew these symptoms... these were some of my usual cascade of symptoms leading toward anaphylaxis. I decided to call the gastroenterologist to talk with a nurse since I knew they didn't want me taking any medications (they would go right through me anyway) and I needed to know if what I was experiencing was normal. I knew I needed medications but I also knew I wasn't supposed to be taking medications before my procedure.
Even though I was already feeling like I was headed toward anaphylaxis, I had to admit that I didn't know exactly what was considered "normal" for this procedure. I needed to talk with someone in the gastroenterologist's office to figure out where to go from here.
After explaining that I started Day 1 of the prep at 3pm... finished it as scheduled... then I was up all night with diarrhea and that I still had diarrhea, the nurse said, "Oh no... that is not normal!"
I then explained a little about my health problems and my current symptoms... she said that wasn't good and that I needed to get back on my medications immediately. She canceled my procedure and said she'd have the doctor contact me as soon as he was able.
I immediately started taking my usual dose of morning medications... my health was deteriorating quickly at this point and I threw in some epinephrine... then I added some additional medications an hour later... and then took some additional emergency medications an hour after that. About two hours after that I took a stronger dose of my lunchtime medications. I ate an english muffin. And, through all of this, I was still back and forth to the bathroom with diarrhea.
I hadn't even started on Day 2 of the laxative prep and there was no possible way I could have made it to the hospital for the procedure without ruining my pants and Sheila's nice new car due to nasty diarrhea. If I had done Day 2 of the prep, I'd probably have diarrhea for days! (Days later, I would learn that just half the prep did cause diarrhea for many days!)
It is now 8:30 at night and I am still hitting the bathroom every hour or so with diarrhea. My overall health is feeling a bit more stable than it was this morning though so that is good.
Around lunchtime, Sheila informed me that this morning I looked worse than she had ever seen me. She says I was pale with splotchy flushing, my eyes were bloodshot, and my lips were a bit swollen and splotchy. That was the point when I realized and definitely felt anaphylaxis was coming on so I wasn't entirely surprised to hear Sheila's description of me but it did confirm that I wasn't exaggerating about the problems I was having nor were these problems "just in my head" (as has been accused by some doctors before my official diagnosis and occasionally since that time).
Thinking about this prolonged period of diarrhea... now longer than 28 hours or so... after only consuming half of the prep... I am thinking that my mast cells became overactive again and degranulated sometime last night... as was seen in the resulting flushing and breathing difficulties as well as the lightheadedness and swollen lips that Sheila noticed... and my body was now pumping digestive acids into my gastrointestinal tract (also due to mast cell degranulation) and that the digestive acids is what I am constantly dumping out since late last night.
In hindsight, I was experiencing a couple of other symptoms that should have made me realize that I was bordering on and approaching anaphylaxis on that first night after starting the prep. One thing I always experience during these spiraling anaphylaxic episodes is teeth-chattering chills... another is horrendous bone and joint pain after my body starts recovering from a particular episode. I had both of these symptoms as well. And, when I say the bone pain is painful, I mean it is exceptionally painful. The teeth-chattering chills are almost violent. It is a brutal combination and it is a combination I experience far too often.
Needless to say, these two days have been absolutely miserable. The funny thing is... until the diarrhea continued beyond a couple of hours, I was thinking, "hey, this is a piece of cake..." Things deteriorated quickly after that point though.
At this point, I can firmly state... I won't ever attempt this procedure ever again.
POST EDIT: Sept 11, 2018 - Today we were at the hospital for more breast cancer stuff for Sheila. As a sidenote, everything went well with her appointments today so that is a bit of a relief.
As far as an update on me, I'm still not back to what is "normal" for me but I was feeling stable enough to accompany Sheila to the hospital this afternoon for her breast cancer appointments as long as I had access to bathrooms along the way.
At some point today, Sheila admitted that, yesterday morning as I was spiraling down into anaphylaxis, she was pretty sure that we would be heading toward the ER to get some medical attention for me as soon as possible. Fortunately, some epinephrine and a bunch of medications over the course of a few hours stabilized my health so Sheila didn't need to call for an ambulance.
I am, however, feeling exhausted today... the fatigue I am feeling is overwhelming... I just want to lie down wherever I can to sleep. My stomach is still gurgling a bit but I haven't really had any terrible diarrhea today (not as bad as it has been) so I think it is safe to assume the half dose of colonoscopy prep has run its long, long course... hopefully.
After Sheila's appointments today, we went out for a quick dinner. I certainly had no energy nor desire to cook. I ordered prime rib, broccoli and fries. I was only able to eat about half of it but it was nice to eat some real food again. I'm hoping some more decent meals including protein will provide me with some much needed energy.
Bouncing back after just one episode of anaphylaxis always takes some time... sometimes well over a week or two. Hopefully, this will pass relatively quickly.
POST EDIT: Sept 17, 2018 - I need to write a more cohesive blog entry about this procedure and all the problems it caused for my health but I'm still not thinking clearly enough to accomplish that even more than a week later. In the meantime, I wanted to add a little bit more info here before I forget about it.
My first normal bowel movement didn't occur until Friday... five full days after starting on the prep... actually, five full days after starting on half of the prep. I am still taking extra medications in an attempt to stabilize my body.
I'm still pumping extra medications everyday and night in an attempt to get back to what was "normal" for me before attempting this procedure.
I will never intentionally stop taking my medications ever again... not for any test, not for any procedure, not for anyone, not at any time. The longer my health issues linger after this incident, the more angry I get about the absolute stupidity of intentionally stopping my medications. Needless to say, I still feel quite lousy... and, I am quite angry.
POST EDIT: Sept 20, 2018 - My health is still recovering. My gastrointestinal issues have slowly come back to a "normal" level considering my overall health and my particular health issues. It is now 11 days after I started the prep and began the spiral downward into anaphylaxis... 11 days!
My biggest problem in recent days has been overwhelming fatigue which has been at a level comparable to a time when I received my Last Rites early in my Air Force career. You know that when a hospital thinks you should be administered your Last Rites, your condition is at its lowest yet that is how I have been feeling this week.
Saying my fatigue is overwhelming is a gross understatement. The fatigue as been absolutely brutal. My days are still filled mostly with sleep. I seem to move from the bed in the morning to the couch for the rest of the day and then back to the bed at night.
I am still quite angry at the sheer stupidity of intentionally coming off my medications.
POST EDIT: Sept 24, 2018 - At this point, two weeks has passed and these two weeks have not passed quickly for me. In fact, over the past two weeks, my health has consistently been the poorest it has been in many years... perhaps the poorest it has been in a decade.
If we look at this past weekend alone (two weeks into this unnecessary nonsense), I struggled with anaphylaxis on Friday... the same on Saturday... and the same on Sunday. On each of these days, my health quickly deteriorated with dizziness, weakness, lightheadedness, flushing, palpitations followed by tachycardia, narrowing of vision leading into sparkles in my vision, and cognitive impairment. I also struggled with some relatively minor breathing issues throughout the weekend, on and off.
I'm still taking extra medications and emergency medications daily in order to stabilize my health.
I'm sleeping approximately 10 to 13 hours each night and then two to four hours during the day, everyday over the past two weeks. Whenever I attempt to do any type of mild activity... for instance, straightening a room in the house or accompanying Sheila to the local grocery store for a quick errand or doing some laundry or even showering or sitting at the piano for a bit... my health begins to crash and I have to throw more emergency medications at the problem. Then, I feel as though I am back at square one where I was when my health first crashed while attempting this colonoscopy.
Every time my health begins to crash, I get more and more angry about being taken off my medications two weeks ago for this attempt at a colonoscopy. It was clearly wrong for me to stop my medications and the risks of this procedure have clearly far outweighed the dangers of skipping colonoscopies. Taking me off my medications has caused my health to become dangerously unstable for a solid two weeks at this point.
The gastroenterologist who was going to perform this colonoscopy was supposed to call me in the couple of days following my scheduled appointment for the procedure. (And, you would think that he would want to find out what was happening.) He never called.
Now, two weeks later, this doctor called and left a message while I was sleeping (most of my time over the past two weeks was spent either sleeping or in the bathroom so it is no surprise that I missed the call). He finally called two weeks later! I suppose crashing into anaphylaxis while attempting his colonoscopy prep didn't warrant a quicker response! (I'm getting more and more angry even as I type this! I really can't believe the casual, lackadaisical attitudes of some of the doctors involved in this!)
It was clear by his message (and Sheila listened to it too and agreed with me) that he is under the impression that I have an upcoming colonoscopy and not that we had already tried and his staff canceled the procedure because my health had crashed into anaphylaxis! He also pointed out that he never received any sort of protocol from my mast cell specialist. What I am getting at here is that communication in this gastroenterologist's office is poor... communication between my specialist and the gastroenterologist's office is and was poor... and, I am getting more and more angry at the lack of professionalism in my own medical treatment recently. At this point, because of the known dangers and risks caused by my illness, I feel this lack of professionalism is more like negligent ignorance, at best.
I am still quite angry.
And, I am still having great difficulty getting my health back to a "stable place".
POST EDIT: Sept 28, 2018 - After continuous extra medications over the past 18 days in addition to all my usual doses of medications, I am now feeling well enough to start back doing some light physical therapy for my spinal injuries. I'm also feeling well enough to accomplish one or two light chores around the house now. I have found, however, that I am still quite susceptible to over-doing it which causes my health to crash again. I still need to take it more slowly than usual. I am finally beginning to feel "okay" again... not my old normal... not even "decent"... but okay and fairly stable.
I'm still quite angry but I am beginning to think more clearly again and more rationally as well as logically. When my health fails as it did over these past 18 days, I also struggle with cognitive difficulties which can affect logic and thinking clearly so I try to avoid making any rash decisions during these periods. I am beyond that point now though.
That being said, I am still absolutely firm on never again even attempting a colonoscopy. I'll do non-invasive imaging that does not require me to stop my medications, as necessary, but I'll never again attempt a colonoscopy.
Additionally, I am so annoyed with the care I received from these two doctors involved in this lingering catastrophe that I will not ever see them again... I won't ever recommend them... I honestly have nothing good to say about either medical practice so I should stop ranting at this point before I really express my concise and very descriptive opinion.
My mast cell specialist never contacted the gastroenterologist about my particular risks... no recommendations about a pre-medication protocol... the gastroenterologist claims he never received anything from my mast cell specialist. This is unprofessional, lazy and dangerous.
The gastroenterologist's lack of concern and awareness of what has happened is a big concern also. He appears and he sounded (in the voice message he finally sent two weeks later) to be quite uncaring, unaware, ill-informed, lackadaisical, and unprofessional. I want nothing to do with his "care" as well.
On the other hand, I should point out that the nurse I spoke to at the gastroenterologist's office was indeed quite professional and concerned when she canceled my procedure and told me to immediately start back on my medications. I have absolutely no complaints about her. My complaints lie with the doctors involved in this catastrophe and absurd fiasco.
I'll never again see either of these doctors... the mast cell specialist and the gastroenterologist... never again. I value my life and I feel as though they do not.
POST EDIT: October 5, 2018 - I was hoping that at a month into this absolute nonsense , I would be reporting here in my blog that I am back to what was my "normal". No such luck. Sunday, two days from now, will be four weeks since this poor health all started and I am still struggling to accomplish anything but the smallest of tasks in the house.
I was feeling pretty good when I awoke this morning... it also was clear outside for a change... I was first hoping to get outside to repair the lawnmower (I need to swap out the blade and air filter) but I quickly decided that I should take advantage of the unusually clear skies so I decided that I would set up my telescope outside so I could do some solar astrophotography. I needed to do something fun... something for me... after almost a month of abysmal health.
I figured that some astronomy would be something that is fairly sedentary so it would be a good "activity" to accomplish without overdoing it. Overdoing it would set me back significantly and I didn't want that.
I didn't even get finished collecting astrophotography gear to use for this solar session this morning before I felt overwhelming fatigue and completely worn out like I had just spent two days awake doing physical labor. I hadn't even moved any telescope gear yet and I was completely spent!
As I type this, I'm having a little bit of difficulty breathing and the fatigue is overwhelming. I know that if I close my eyes as I'm typing, I will fall asleep. Perhaps that is an indication of my blood pressure dropping... I just tested closing my eyes and I am definitely dizzy... yet another early symptom of impending anaphylaxis...
These few symptoms prompted me to take some extra medications and grab my epi-pen but I am back to typing now...
So, I'm sitting here trying to put into words how I am feeling about my overall health over the past month... mostly, I am unbelievably angry.
Why am I angry more than anything else? I am so angry because this month of poor health was due to sheer ignorance and absolute stupidity. The ignorance falls squarely on my mast cell specialist. The stupidity falls on me.
I have told my doctors, over and over, that I cannot be taken off my medications without severe, life-threatening consequences but I gave a new mast cell specialist a chance and agreed to give this procedure a try. My thought was that if the specialist thinks this will be a piece of cake, then I should believe him. I am so incredibly angry at myself now. I have struggled with a month of poor health making at least part of every day a bit miserable. I should have known better and I should have insisted against this idea. I'm feeling as though my decision to allow someone else to make a serious decision about my well-being that I knew would be dangerous was incredibly stupid and even showed a flaw in myself... a weakness... and, with every day of poor health that passes, I am kicking myself more and more. I do not know why I gave in on this... and, for what? Just for a stupid colonoscopy? I am so angry... even seething... that if I were still a healthy person, I'd be incredibly dangerous right now. The truth is, even though I am seething and incredibly angry, I don't have the energy to harm a fly at the moment.
Compounding this anger is that this morning I was feeling "halfway decent" so decided to attempt to do something small that would be enjoyable... to do something that would provide me with a sense of accomplishment for a change... to make me feel just slightly productive... to do something satisfying and enjoyable for a change... yet, I didn't even get out the door! Saying I am "angry" is not nearly strong enough to describe how I am feeling.
I am tired... fatigued beyond belief... I am weak and shaking when I try to do anything... I am dizzy... I'm having some difficulty breathing... and the bone and joint pain is brutal too.
Clearly, I still have some fight in me... that is exhibited in how angry I am this morning. Unfortunately, I don't know where to justifiably direct this anger... which adds a bit more frustration to my anger.
POST EDIT: October 18, 2018 - We are now five and a half weeks beyond the start of this needless incident and my health is still quite miserable.
On the positive side, every few days, I seem to have a few tolerable hours. These short periods of tolerable health are rare and just these few short hours require days of recovery. My overall health is still headed in the correct direction little by little but, as expected, it is requiring many weeks, into months, to recover.
To say that I am okay with this would be a terrible lie. I'm not okay with it. Anyone who has a fairly decent grasp of my health would know that attempting this procedure would be insanely dangerous and would result in exactly what I have been dealing with for the past month and a half. I find it absolutely insane that anyone would intentionally put me, or anyone, through this. And NOBODY... absolutely NOBODY... will ever again convince me to come off my medications for even a few hours nevermind days. It is not happening ever again!
Whenever I think about how long I am struggling with pain and absolutely abysmal health, I get angry... very angry. I am so angry that I am still not anywhere near an emotionally stable place to rationally discuss this with any of my doctors. I know that the old drill sergeant in me would burst forth in a sudden burst of energy which would then knock my health back to square one again. This burst of 'old drill sergeant' demeanor would only hurt my healthcare because I would be snapping at people who don't deserve it. Now... if you send me to the doctor who said, "it's a piece of cake"... and when I asked him which doctor would be recommended considering my health and he said, "just open a phone book" as he shrugged his shoulders... and who ordered this test without sending any prep protocol or general protocol pertaining to my specific and rare health issues to the doctor performing the procedure... Oh, he definitely deserves to have my old drill sergeant demeanor unleashed on him. Maybe that would then prompt him to think twice about his negligent behavior before putting another patient through what I have been through over the past month and a half. Oh, he definitely deserves it. But, quite honestly, even that isn't worth the hit my health would take. I know from experience that a sudden burst of energy like that from me would cause significant problems with my health again. That doctor isn't worth it.
I am still struggling while getting close to anaphylaxis a few times each week... this involves difficulty breathing, dizziness, lightheadedness, weakness, narrowing vision to sparklies in my vision... I'm still pumping extra medications almost everyday. I'm constantly struggling with bone pain, crippling (literally) spinal inflammation, and some joint pain. I'm having cognitive problems... which comes as no surprise considering. And, needless to say, my temper has been short.
I am bored but, cognitively speaking, I am still not capable of focusing on anything for more than a few minutes at a time which compounds the boredom and severely limits what I can attempt to do. Even on my relatively "good days" I get bored because my life is so sedentary compared to my previous healthy life but this boredom over the past month and a half has been absolutely brutal. It is boredom beyond boredom. I can't read because my mind is bouncing all over the place and unable to focus for even a few short minutes... I can't sit at the piano for longer than a few musical phrases... I can't watch a movie without falling asleep... and the bone pain and spinal pain is brutal. Throw in a few anaphylaxic episodes each week... I am getting absolutely nothing accomplished and I'm struggling and suffering through almost every moment of every day.
And, this is all due to rather ignorant and negligent healthcare.
I can't begin to tell how much this pisses me off... but, what I wanted to document here was that it is now five and a half weeks into this "incident" and I am still struggling as I live a life of almost nothingness... no, it isn't "living"... it is simply surviving a life of almost nothingness.
We are supposed to meet some friends for dinner the day after tomorrow and I'm really looking forward to that. This will be the first time I've attempted to head out of the house to socialize in a couple of months. I'm hoping that my health can remain stable for a few hours to have an enjoyable afternoon and evening... maybe even a few laughs... for a pleasant change.
POST EDIT: October 24, 2018 - Well, I was hoping that this incident and the resulting poor health was behind me... We are now six and a half weeks beyond the start of this absolutely asinine and unnecessary incident and I am still trying to stabilize my health to reasonable levels.
We did meet some friends on Saturday but my health was rather lousy and only worsened while we are out. My health, clearly, was not ready to do any socializing out at a restaurant.
I am still needing to take extra medications... sometimes some emergency medications... and this is and has been an everyday thing. Until I can stabilize my health and beyond, this medication protocol must continue. And, unfortunately, I can report here that this continues even today six and a half weeks later.
When my health crashes, this sets me back to somewhere near square one again... which is unbelievably frustrating. Doing virtually nothing everyday is also incredibly frustrating. I can barely keep up with personal hygiene and little household chores. Beyond that, all I can manage is a little thing here and there during relatively fair times... which are quite rare.
I am still quite angry about this situation and how it came about and why... but, either I simply don't have the energy for anger anymore or the anger is slowly mellowing out over time. I can definitely say that my energy level is low... is poor... and that I need a lot of sleep.
Anyway... six and a half weeks later... my health is still struggling and poor.
POST EDIT: November 19, 2018 - It has now been 10 full weeks since attempting this procedure and I am finally feeling stable enough to say that I feel as though am back to where I was before attempting this procedure. It took me a solid two and a half months of miserable health to get back to where I was before this incident. That is a lot of wasted time.
During this period of recovery, I spent far too much time and far too often in the bathroom sick as a dog. I was completely wiped out and spent a lot of time sleeping too. I was experiencing anaphylaxis numerous times each week. My health was crashing multiple times a day and my medications didn't seem to be making a dent in stabilizing my health enough to be in a safe place.
I am just beginning to start accomplishing some small things around the house again. For now, it seems as though I am back to my 'new normal' that existed before attempting this procedure.
Two things are certain... one, I will never again attempt any procedure which takes me off my medications. Even missing one dose is exceptionally dangerous for me. And, the second certainty is that I will never again see the specialists who were supposed to be involved in this procedure yet completely bungled this and caused me such horrendous grief.... horrendous grief in severity as well as frequency and over such a long period of time. Never again. They are no longer worthy of being a part of my medical team.
In the meantime while waiting for this appointment date to arrive, I had another visit with my mast cell specialist. We briefly discussed how to manage my medications in the week leading up to the colonoscopy and we had a tentative plan in place. To be honest, I wasn't too optimistic about my health holding up through this procedure but I agreed to give it a try. The last thing I want to do is come across as non-compliant because I do need continued treatment. That being said, I also emphatically told Sheila that if this procedure was a problem for my health, I'll never try it again.
There are two high risks here with this particular procedure with my specific illness. First, stopping my medications is an exceptionally high risk since my body will usually crash into anaphylaxis when I miss just one dose whenever I lose track of time. The second risk for me is anesthesia. Enough mast cell disease patients suffer with anaphylaxis during procedures requiring anesthesia that there are certain protocols that must be met in order to minimize the risks of a patient cascading into anaphylaxis. Both of these risks are what ended my first attempt at a colonoscopy a few years ago but I agreed to give it a shot this time because my new mast cell specialist seemed quite convinced that I would have no problems. And, as I mentioned earlier, I didn't want to be deemed a non-compliant patient with a new specialist.
So, a week ago, I stopped taking my anti-inflammatory medications and prostoglandin D2 blockers both of which are also blood thinners. Blood thinners with this procedure are a no-go so I had to stop them a week prior to the procedure. As today approached, my bone pain, spinal pain and flushing worsened but it was tolerable for the short term of only a week. It was a rather painful week but I managed. I've been through far worse as far as the pain goes.
Yesterday, I needed to stop all of my medications as I started on the laxative prep. I had no problems getting through drinking down the combinations of laxative and Gatorade. I finished off Day 1 of the prep within an hour. So far, everything seemed "normal".
I started this Day 1 of prep at 3pm... the expected diarrhea started shortly after I finished consuming the prep. I kept going back to the bathroom... over and over. Around 11pm (a full eight hours after I started the first half of the prep), the diarrhea had slowed down a bit so I attempted to go to bed. At this point I was exhausted and feeling drained but was still thinking that perhaps this is all normal for a colonoscopy. I should also point out that I hadn't had a meal since the previous night so that wasn't helping my overall health at all either. I was already feeling rather crappy.
I laid down briefly at 11pm... but the diarrhea continued... and continued... and continued. By 3am, I was feeling absolutely miserable and overwhelmingly exhausted. I was getting bouts of teeth-chattering chills and the weakness was definitely becoming more pronounced. The diarrhea continued so I continued my back and forth trek between the bed and the bathroom until 8am.
At 8am, I knew I needed to get out of bed so I could soon start Day 2 and the second half of the laxative prep, but... my body was about at its breaking point. I reluctantly got up and made my way to the bathroom, yet again, with more diarrhea (before starting on the prep).
On my way to the bathroom as I got out of bed this morning, the weakness was beyond what I would consider normal even for my bad days, I was a little lightheaded, my face and neck were flushed and I was having difficulty breathing. I knew these symptoms... these were some of my usual cascade of symptoms leading toward anaphylaxis. I decided to call the gastroenterologist to talk with a nurse since I knew they didn't want me taking any medications (they would go right through me anyway) and I needed to know if what I was experiencing was normal. I knew I needed medications but I also knew I wasn't supposed to be taking medications before my procedure.
Even though I was already feeling like I was headed toward anaphylaxis, I had to admit that I didn't know exactly what was considered "normal" for this procedure. I needed to talk with someone in the gastroenterologist's office to figure out where to go from here.
After explaining that I started Day 1 of the prep at 3pm... finished it as scheduled... then I was up all night with diarrhea and that I still had diarrhea, the nurse said, "Oh no... that is not normal!"
I then explained a little about my health problems and my current symptoms... she said that wasn't good and that I needed to get back on my medications immediately. She canceled my procedure and said she'd have the doctor contact me as soon as he was able.
I immediately started taking my usual dose of morning medications... my health was deteriorating quickly at this point and I threw in some epinephrine... then I added some additional medications an hour later... and then took some additional emergency medications an hour after that. About two hours after that I took a stronger dose of my lunchtime medications. I ate an english muffin. And, through all of this, I was still back and forth to the bathroom with diarrhea.
I hadn't even started on Day 2 of the laxative prep and there was no possible way I could have made it to the hospital for the procedure without ruining my pants and Sheila's nice new car due to nasty diarrhea. If I had done Day 2 of the prep, I'd probably have diarrhea for days! (Days later, I would learn that just half the prep did cause diarrhea for many days!)
It is now 8:30 at night and I am still hitting the bathroom every hour or so with diarrhea. My overall health is feeling a bit more stable than it was this morning though so that is good.
Around lunchtime, Sheila informed me that this morning I looked worse than she had ever seen me. She says I was pale with splotchy flushing, my eyes were bloodshot, and my lips were a bit swollen and splotchy. That was the point when I realized and definitely felt anaphylaxis was coming on so I wasn't entirely surprised to hear Sheila's description of me but it did confirm that I wasn't exaggerating about the problems I was having nor were these problems "just in my head" (as has been accused by some doctors before my official diagnosis and occasionally since that time).
Thinking about this prolonged period of diarrhea... now longer than 28 hours or so... after only consuming half of the prep... I am thinking that my mast cells became overactive again and degranulated sometime last night... as was seen in the resulting flushing and breathing difficulties as well as the lightheadedness and swollen lips that Sheila noticed... and my body was now pumping digestive acids into my gastrointestinal tract (also due to mast cell degranulation) and that the digestive acids is what I am constantly dumping out since late last night.
In hindsight, I was experiencing a couple of other symptoms that should have made me realize that I was bordering on and approaching anaphylaxis on that first night after starting the prep. One thing I always experience during these spiraling anaphylaxic episodes is teeth-chattering chills... another is horrendous bone and joint pain after my body starts recovering from a particular episode. I had both of these symptoms as well. And, when I say the bone pain is painful, I mean it is exceptionally painful. The teeth-chattering chills are almost violent. It is a brutal combination and it is a combination I experience far too often.
Needless to say, these two days have been absolutely miserable. The funny thing is... until the diarrhea continued beyond a couple of hours, I was thinking, "hey, this is a piece of cake..." Things deteriorated quickly after that point though.
At this point, I can firmly state... I won't ever attempt this procedure ever again.
POST EDIT: Sept 11, 2018 - Today we were at the hospital for more breast cancer stuff for Sheila. As a sidenote, everything went well with her appointments today so that is a bit of a relief.
As far as an update on me, I'm still not back to what is "normal" for me but I was feeling stable enough to accompany Sheila to the hospital this afternoon for her breast cancer appointments as long as I had access to bathrooms along the way.
At some point today, Sheila admitted that, yesterday morning as I was spiraling down into anaphylaxis, she was pretty sure that we would be heading toward the ER to get some medical attention for me as soon as possible. Fortunately, some epinephrine and a bunch of medications over the course of a few hours stabilized my health so Sheila didn't need to call for an ambulance.
I am, however, feeling exhausted today... the fatigue I am feeling is overwhelming... I just want to lie down wherever I can to sleep. My stomach is still gurgling a bit but I haven't really had any terrible diarrhea today (not as bad as it has been) so I think it is safe to assume the half dose of colonoscopy prep has run its long, long course... hopefully.
After Sheila's appointments today, we went out for a quick dinner. I certainly had no energy nor desire to cook. I ordered prime rib, broccoli and fries. I was only able to eat about half of it but it was nice to eat some real food again. I'm hoping some more decent meals including protein will provide me with some much needed energy.
Bouncing back after just one episode of anaphylaxis always takes some time... sometimes well over a week or two. Hopefully, this will pass relatively quickly.
POST EDIT: Sept 17, 2018 - I need to write a more cohesive blog entry about this procedure and all the problems it caused for my health but I'm still not thinking clearly enough to accomplish that even more than a week later. In the meantime, I wanted to add a little bit more info here before I forget about it.
My first normal bowel movement didn't occur until Friday... five full days after starting on the prep... actually, five full days after starting on half of the prep. I am still taking extra medications in an attempt to stabilize my body.
I'm still pumping extra medications everyday and night in an attempt to get back to what was "normal" for me before attempting this procedure.
I will never intentionally stop taking my medications ever again... not for any test, not for any procedure, not for anyone, not at any time. The longer my health issues linger after this incident, the more angry I get about the absolute stupidity of intentionally stopping my medications. Needless to say, I still feel quite lousy... and, I am quite angry.
POST EDIT: Sept 20, 2018 - My health is still recovering. My gastrointestinal issues have slowly come back to a "normal" level considering my overall health and my particular health issues. It is now 11 days after I started the prep and began the spiral downward into anaphylaxis... 11 days!
My biggest problem in recent days has been overwhelming fatigue which has been at a level comparable to a time when I received my Last Rites early in my Air Force career. You know that when a hospital thinks you should be administered your Last Rites, your condition is at its lowest yet that is how I have been feeling this week.
Saying my fatigue is overwhelming is a gross understatement. The fatigue as been absolutely brutal. My days are still filled mostly with sleep. I seem to move from the bed in the morning to the couch for the rest of the day and then back to the bed at night.
I am still quite angry at the sheer stupidity of intentionally coming off my medications.
POST EDIT: Sept 24, 2018 - At this point, two weeks has passed and these two weeks have not passed quickly for me. In fact, over the past two weeks, my health has consistently been the poorest it has been in many years... perhaps the poorest it has been in a decade.
If we look at this past weekend alone (two weeks into this unnecessary nonsense), I struggled with anaphylaxis on Friday... the same on Saturday... and the same on Sunday. On each of these days, my health quickly deteriorated with dizziness, weakness, lightheadedness, flushing, palpitations followed by tachycardia, narrowing of vision leading into sparkles in my vision, and cognitive impairment. I also struggled with some relatively minor breathing issues throughout the weekend, on and off.
I'm still taking extra medications and emergency medications daily in order to stabilize my health.
I'm sleeping approximately 10 to 13 hours each night and then two to four hours during the day, everyday over the past two weeks. Whenever I attempt to do any type of mild activity... for instance, straightening a room in the house or accompanying Sheila to the local grocery store for a quick errand or doing some laundry or even showering or sitting at the piano for a bit... my health begins to crash and I have to throw more emergency medications at the problem. Then, I feel as though I am back at square one where I was when my health first crashed while attempting this colonoscopy.
Every time my health begins to crash, I get more and more angry about being taken off my medications two weeks ago for this attempt at a colonoscopy. It was clearly wrong for me to stop my medications and the risks of this procedure have clearly far outweighed the dangers of skipping colonoscopies. Taking me off my medications has caused my health to become dangerously unstable for a solid two weeks at this point.
The gastroenterologist who was going to perform this colonoscopy was supposed to call me in the couple of days following my scheduled appointment for the procedure. (And, you would think that he would want to find out what was happening.) He never called.
Now, two weeks later, this doctor called and left a message while I was sleeping (most of my time over the past two weeks was spent either sleeping or in the bathroom so it is no surprise that I missed the call). He finally called two weeks later! I suppose crashing into anaphylaxis while attempting his colonoscopy prep didn't warrant a quicker response! (I'm getting more and more angry even as I type this! I really can't believe the casual, lackadaisical attitudes of some of the doctors involved in this!)
It was clear by his message (and Sheila listened to it too and agreed with me) that he is under the impression that I have an upcoming colonoscopy and not that we had already tried and his staff canceled the procedure because my health had crashed into anaphylaxis! He also pointed out that he never received any sort of protocol from my mast cell specialist. What I am getting at here is that communication in this gastroenterologist's office is poor... communication between my specialist and the gastroenterologist's office is and was poor... and, I am getting more and more angry at the lack of professionalism in my own medical treatment recently. At this point, because of the known dangers and risks caused by my illness, I feel this lack of professionalism is more like negligent ignorance, at best.
I am still quite angry.
And, I am still having great difficulty getting my health back to a "stable place".
POST EDIT: Sept 28, 2018 - After continuous extra medications over the past 18 days in addition to all my usual doses of medications, I am now feeling well enough to start back doing some light physical therapy for my spinal injuries. I'm also feeling well enough to accomplish one or two light chores around the house now. I have found, however, that I am still quite susceptible to over-doing it which causes my health to crash again. I still need to take it more slowly than usual. I am finally beginning to feel "okay" again... not my old normal... not even "decent"... but okay and fairly stable.
I'm still quite angry but I am beginning to think more clearly again and more rationally as well as logically. When my health fails as it did over these past 18 days, I also struggle with cognitive difficulties which can affect logic and thinking clearly so I try to avoid making any rash decisions during these periods. I am beyond that point now though.
That being said, I am still absolutely firm on never again even attempting a colonoscopy. I'll do non-invasive imaging that does not require me to stop my medications, as necessary, but I'll never again attempt a colonoscopy.
Additionally, I am so annoyed with the care I received from these two doctors involved in this lingering catastrophe that I will not ever see them again... I won't ever recommend them... I honestly have nothing good to say about either medical practice so I should stop ranting at this point before I really express my concise and very descriptive opinion.
My mast cell specialist never contacted the gastroenterologist about my particular risks... no recommendations about a pre-medication protocol... the gastroenterologist claims he never received anything from my mast cell specialist. This is unprofessional, lazy and dangerous.
The gastroenterologist's lack of concern and awareness of what has happened is a big concern also. He appears and he sounded (in the voice message he finally sent two weeks later) to be quite uncaring, unaware, ill-informed, lackadaisical, and unprofessional. I want nothing to do with his "care" as well.
On the other hand, I should point out that the nurse I spoke to at the gastroenterologist's office was indeed quite professional and concerned when she canceled my procedure and told me to immediately start back on my medications. I have absolutely no complaints about her. My complaints lie with the doctors involved in this catastrophe and absurd fiasco.
I'll never again see either of these doctors... the mast cell specialist and the gastroenterologist... never again. I value my life and I feel as though they do not.
POST EDIT: October 5, 2018 - I was hoping that at a month into this absolute nonsense , I would be reporting here in my blog that I am back to what was my "normal". No such luck. Sunday, two days from now, will be four weeks since this poor health all started and I am still struggling to accomplish anything but the smallest of tasks in the house.
I was feeling pretty good when I awoke this morning... it also was clear outside for a change... I was first hoping to get outside to repair the lawnmower (I need to swap out the blade and air filter) but I quickly decided that I should take advantage of the unusually clear skies so I decided that I would set up my telescope outside so I could do some solar astrophotography. I needed to do something fun... something for me... after almost a month of abysmal health.
I figured that some astronomy would be something that is fairly sedentary so it would be a good "activity" to accomplish without overdoing it. Overdoing it would set me back significantly and I didn't want that.
I didn't even get finished collecting astrophotography gear to use for this solar session this morning before I felt overwhelming fatigue and completely worn out like I had just spent two days awake doing physical labor. I hadn't even moved any telescope gear yet and I was completely spent!
As I type this, I'm having a little bit of difficulty breathing and the fatigue is overwhelming. I know that if I close my eyes as I'm typing, I will fall asleep. Perhaps that is an indication of my blood pressure dropping... I just tested closing my eyes and I am definitely dizzy... yet another early symptom of impending anaphylaxis...
These few symptoms prompted me to take some extra medications and grab my epi-pen but I am back to typing now...
So, I'm sitting here trying to put into words how I am feeling about my overall health over the past month... mostly, I am unbelievably angry.
Why am I angry more than anything else? I am so angry because this month of poor health was due to sheer ignorance and absolute stupidity. The ignorance falls squarely on my mast cell specialist. The stupidity falls on me.
I have told my doctors, over and over, that I cannot be taken off my medications without severe, life-threatening consequences but I gave a new mast cell specialist a chance and agreed to give this procedure a try. My thought was that if the specialist thinks this will be a piece of cake, then I should believe him. I am so incredibly angry at myself now. I have struggled with a month of poor health making at least part of every day a bit miserable. I should have known better and I should have insisted against this idea. I'm feeling as though my decision to allow someone else to make a serious decision about my well-being that I knew would be dangerous was incredibly stupid and even showed a flaw in myself... a weakness... and, with every day of poor health that passes, I am kicking myself more and more. I do not know why I gave in on this... and, for what? Just for a stupid colonoscopy? I am so angry... even seething... that if I were still a healthy person, I'd be incredibly dangerous right now. The truth is, even though I am seething and incredibly angry, I don't have the energy to harm a fly at the moment.
Compounding this anger is that this morning I was feeling "halfway decent" so decided to attempt to do something small that would be enjoyable... to do something that would provide me with a sense of accomplishment for a change... to make me feel just slightly productive... to do something satisfying and enjoyable for a change... yet, I didn't even get out the door! Saying I am "angry" is not nearly strong enough to describe how I am feeling.
I am tired... fatigued beyond belief... I am weak and shaking when I try to do anything... I am dizzy... I'm having some difficulty breathing... and the bone and joint pain is brutal too.
Clearly, I still have some fight in me... that is exhibited in how angry I am this morning. Unfortunately, I don't know where to justifiably direct this anger... which adds a bit more frustration to my anger.
POST EDIT: October 18, 2018 - We are now five and a half weeks beyond the start of this needless incident and my health is still quite miserable.
On the positive side, every few days, I seem to have a few tolerable hours. These short periods of tolerable health are rare and just these few short hours require days of recovery. My overall health is still headed in the correct direction little by little but, as expected, it is requiring many weeks, into months, to recover.
To say that I am okay with this would be a terrible lie. I'm not okay with it. Anyone who has a fairly decent grasp of my health would know that attempting this procedure would be insanely dangerous and would result in exactly what I have been dealing with for the past month and a half. I find it absolutely insane that anyone would intentionally put me, or anyone, through this. And NOBODY... absolutely NOBODY... will ever again convince me to come off my medications for even a few hours nevermind days. It is not happening ever again!
Whenever I think about how long I am struggling with pain and absolutely abysmal health, I get angry... very angry. I am so angry that I am still not anywhere near an emotionally stable place to rationally discuss this with any of my doctors. I know that the old drill sergeant in me would burst forth in a sudden burst of energy which would then knock my health back to square one again. This burst of 'old drill sergeant' demeanor would only hurt my healthcare because I would be snapping at people who don't deserve it. Now... if you send me to the doctor who said, "it's a piece of cake"... and when I asked him which doctor would be recommended considering my health and he said, "just open a phone book" as he shrugged his shoulders... and who ordered this test without sending any prep protocol or general protocol pertaining to my specific and rare health issues to the doctor performing the procedure... Oh, he definitely deserves to have my old drill sergeant demeanor unleashed on him. Maybe that would then prompt him to think twice about his negligent behavior before putting another patient through what I have been through over the past month and a half. Oh, he definitely deserves it. But, quite honestly, even that isn't worth the hit my health would take. I know from experience that a sudden burst of energy like that from me would cause significant problems with my health again. That doctor isn't worth it.
I am still struggling while getting close to anaphylaxis a few times each week... this involves difficulty breathing, dizziness, lightheadedness, weakness, narrowing vision to sparklies in my vision... I'm still pumping extra medications almost everyday. I'm constantly struggling with bone pain, crippling (literally) spinal inflammation, and some joint pain. I'm having cognitive problems... which comes as no surprise considering. And, needless to say, my temper has been short.
I am bored but, cognitively speaking, I am still not capable of focusing on anything for more than a few minutes at a time which compounds the boredom and severely limits what I can attempt to do. Even on my relatively "good days" I get bored because my life is so sedentary compared to my previous healthy life but this boredom over the past month and a half has been absolutely brutal. It is boredom beyond boredom. I can't read because my mind is bouncing all over the place and unable to focus for even a few short minutes... I can't sit at the piano for longer than a few musical phrases... I can't watch a movie without falling asleep... and the bone pain and spinal pain is brutal. Throw in a few anaphylaxic episodes each week... I am getting absolutely nothing accomplished and I'm struggling and suffering through almost every moment of every day.
And, this is all due to rather ignorant and negligent healthcare.
I can't begin to tell how much this pisses me off... but, what I wanted to document here was that it is now five and a half weeks into this "incident" and I am still struggling as I live a life of almost nothingness... no, it isn't "living"... it is simply surviving a life of almost nothingness.
We are supposed to meet some friends for dinner the day after tomorrow and I'm really looking forward to that. This will be the first time I've attempted to head out of the house to socialize in a couple of months. I'm hoping that my health can remain stable for a few hours to have an enjoyable afternoon and evening... maybe even a few laughs... for a pleasant change.
POST EDIT: October 24, 2018 - Well, I was hoping that this incident and the resulting poor health was behind me... We are now six and a half weeks beyond the start of this absolutely asinine and unnecessary incident and I am still trying to stabilize my health to reasonable levels.
We did meet some friends on Saturday but my health was rather lousy and only worsened while we are out. My health, clearly, was not ready to do any socializing out at a restaurant.
I am still needing to take extra medications... sometimes some emergency medications... and this is and has been an everyday thing. Until I can stabilize my health and beyond, this medication protocol must continue. And, unfortunately, I can report here that this continues even today six and a half weeks later.
When my health crashes, this sets me back to somewhere near square one again... which is unbelievably frustrating. Doing virtually nothing everyday is also incredibly frustrating. I can barely keep up with personal hygiene and little household chores. Beyond that, all I can manage is a little thing here and there during relatively fair times... which are quite rare.
I am still quite angry about this situation and how it came about and why... but, either I simply don't have the energy for anger anymore or the anger is slowly mellowing out over time. I can definitely say that my energy level is low... is poor... and that I need a lot of sleep.
Anyway... six and a half weeks later... my health is still struggling and poor.
POST EDIT: November 19, 2018 - It has now been 10 full weeks since attempting this procedure and I am finally feeling stable enough to say that I feel as though am back to where I was before attempting this procedure. It took me a solid two and a half months of miserable health to get back to where I was before this incident. That is a lot of wasted time.
During this period of recovery, I spent far too much time and far too often in the bathroom sick as a dog. I was completely wiped out and spent a lot of time sleeping too. I was experiencing anaphylaxis numerous times each week. My health was crashing multiple times a day and my medications didn't seem to be making a dent in stabilizing my health enough to be in a safe place.
I am just beginning to start accomplishing some small things around the house again. For now, it seems as though I am back to my 'new normal' that existed before attempting this procedure.
Two things are certain... one, I will never again attempt any procedure which takes me off my medications. Even missing one dose is exceptionally dangerous for me. And, the second certainty is that I will never again see the specialists who were supposed to be involved in this procedure yet completely bungled this and caused me such horrendous grief.... horrendous grief in severity as well as frequency and over such a long period of time. Never again. They are no longer worthy of being a part of my medical team.
Comments
Post a Comment