The NeverEnding Story

I must once again apologize for my random absences, missed weakly features, and sporadic posts.  Since our main topic is chronic illness and pain, I am confident that our followers can relate to and sympathize with my recent occasional bouts of being bedridden, feeling incapacitated, sick, in pain, and unable to post as frequently as I would like or had planned.

My editorial calendar is filled with interesting, educational, and helpful topics which would better appeal to the masses but my rather unexpected and new health issues which have developed over the past few weeks have taken center stage and caused my blog to take on more of a diary format for the moment.  I am going with it for now, as I find it helpful and supportive to share our individual journey, as well as other topics along the way.  Some periods of time may lean in one direction more than the other but our goal remains the same.

During my last update about my current GI journey, I believe I shared and explained some complications or side effects that I experienced for several days following my recent ERCP and pancreatic bile duct stent placement.

My gastroenterologist, despite him being highly skilled and me being forever indebted to him for most likely saving my life, seemed to be lacking in the area of follow-up care after the ERCP procedure.  I was never given a follow-up appointment and did not know exactly what would be found or done during the procedure, which obviously will have an effect on a patient’s recovery.  The issue of follow-up care has since improved but at the point in my journey which I’m describing here, that is very much how I felt.

I believe I spoke with both my doctor and another GI specialist (the latter two, three, or more times) after I woke up but we all know how the side-effects of heavy sedation or anesthesia can affect eliminate your memory.  I have no recollection of speaking with my doctor and only remember two out of the three (or maybe four) times that I spoke with the GI doctor on-call at the hospital.

My doctor tends to minimalize things, or so it appears from my few brief encounters with him.  He has a very calming attitude, but almost to a fault, because to him NOTHING seems to be a big deal, a cause for concern, or even a valid reason implement reasonable restrictions during recovery from an invasive and rather high-risk procedure.

Despite his findings, that I did indeed have Sphincter of Oddi Dysfunction with a fully (100%) blocked pancreatic bile duct, requiring a sphincterotomy and a stent, and knowing that this diagnosis placed me in the highest risk category (20% or above) for post-procedure pancreatitis, he still expected me to recover instantly and pretty much immediately feel fine.

Well, call me weak or strange or whatever but it was immediately apparent to me that my body had just been violated, sliced, diced, invaded by a foreign object, and needed to time to heal.

The doctor on-call seemed to be a little more realistic and understanding of what my body had endured because he checked on me more often than I have ever experienced after a procedure or surgery and frequently questioned my pain, although never offered to treat it in any way (which is slightly irritating, now that I’m thinking back on it).  He actually offered to admit me, which I declined, partly because I must have assumed (even in my loopy mental state) that after hours of reporting pain with no offers for treatment or relief, that I could manage my pain better myself at home, once we made it to the pharmacy to fill my regularly prescribed pain management medications.

He did instruct me to return to return to sips of clear liquids only, after a full liquid lunch disaster (which I may have previously mentioned).

The clear liquids would become a main stay for the next five days and even the majority of a few more days.  The on-call doctor suspected that my crescendo like pain levels reported in the hospital were likely due to my body trying to pass the pancreatic bile duct stent.  He said that it is amazing how quickly they can be expelled from the body; often within a few hours.  That was the other reason that I agreed to go home.  His comforting words made me feel safe and as though what I felt was normal and NOT a symptom of the dreaded post-ERCP pancreatitis.

Well, I battled with and endured varying pain levels of increasing severity the entire first night but my concerns were put to rest when I called my doctor’s office the next day and was given a message from the nurse practitioner that a level of discomfort is normal for a few days, considering what all they did inside my abdomen.  I fully agreed with this logic but had to call just to be on the safe side (and partly because my doctor did not discuss a potentially difficult recovery period). I was told to call back if the pain increased significantly or if I experienced nausea, vomiting, or a temperature of over 102 degrees.  Luckily, none of those things ever happened.  However, I will never be fully convinced that the pain I experienced over the next week was not actually some mild form of pancreatitis.  I say this not because I distrust my doctor, but rather because I am very used to living in pain and the levels I experienced were unusually high, in my humble opinion, for someone on 25 mcg of Fentanyl per hour and 10 mg/325mg of Norco every four hours, like clock-work.

I often worry if my need to be constantly medicated will ever cause me to misjudge or under-report my pain levels, thus leaving me in some sort of danger with a condition or complication that could be overlooked or not taken seriously because I think I am in less pain than I truly am.  On the flip side, I worry about opioid induced hyperalgesia too and don’t want to over-report my pain because of that, which is a phenomena that I have no idea if I am affected by or have ever experienced.  These are some of the trials and challenges that come with pain management.  They are never discussed, not by our pain specialist anyway, but I feel like they should be so we have the knowledge to be educated patients and are aware of the many potential ways in which opioid pain medications (or other types for that matter) can affect you, your sensory perception, etc. which might help us more accurately assess and report pain levels while under medical care (or know when to seek emergency care).

Anyway, I did survive the days following the ERCP and associated procedures but it was rough and I ended up missing much more work than I anticipated or could afford.

My only “appointment” which could loosely be considered follow-up care was my doctor’s order for me to drop by his clinic for an x-ray on the Wednesday following the ERCP.  This was to ensure that the pancreatic bile duct stent had passed, as it was designed to, out of my bile duct, through my digestive system and eventually into the toilet with a bowel movement.  Initially I had very little confidence that it would pass normally, given my extremely slow digestive system and lack of food to perpetuate a BM, even if I did decide to take a laxative, as I usually do but hadn’t been for the past week.

However, the day before the x-rays and six days post procedure, my appetite finally seemed to return to a more normal level, as did my pain, so I ate (quite a bit for someone who had barely eaten all week).  This was much the result of our division’s recent Christmas party and all of the delicious left-over food which was simply too good to ignore for someone who had barely eaten anything but popsicles and lemon-lime soda for a week. At first it felt great to eat but overnight I learned that my choices had been a BIG mistake.

I will spare you the graphic and disgusting details but I spent almost all night in the bathroom, with horrendous pain and diarrhea beyond anything I had experienced in a while, which is probably even worse than you’re thinking because my digestive system is BROKEN in a big way and causes severe problems fairly often. I believe many of my commonly experienced issues are from Endometriosis, which is suspected to possibly be on my bowels (in addition to its many other chosen locations) with or without scar tissue and adhesions, but this has not yet been officially diagnosed.

At any rate, my weakness and fatigue the next day had returned to its previously severe level and I had to call-in sick to work (again).  On a more positive note, I was sure this misadventure would have facilitated the passing of my stent, which was a much needed silver lining.  Unfortunately I was far too sick during all of that to check the toilet for a stent.

Since my Mom happens to work at the same clinic as my gastroenterologist (and other doctors) and actually sits next to my GI doc’s nurse, my condition and progress were a topic of casual conversation.  For this reason, and this reason alone, my doctor and his nurse came to the conclusion that my body was not reacting to the procedure as it should, as my progress was unusually slow and my relief appeared to be minimal.  I don’t know how they could make this assessment without talking to or having a follow-up appointment with ME, the patient, because the pain that I was dealing with post-ERCP was SO different than before the procedure and so severe that my previously somewhat mild upper stomach pain and discomfort had been completely over-shadowed by the new post-procedure pain.  This is one of the many reasons that I believe I may have been dealing with a mild form of pancreatitis or simply even just a very pissed off pancreas, which is perhaps one in the same.

The day I’m referencing was exactly one week after the ERCP procedure.  This story is being told in hindsight at this point due to being sick and unable to update on my condition in real-time.  Unfortunately, the day after my yucky tummy issues was the day that my doctor had ordered my x-rays, which I finally managed to drag myself into the clinic to complete later that afternoon.

While I was there, I was informed that my doctor (GI specialist) still suspected that I had others problematic issues and had ordered a HIDA scan to see if my gallbladder was working.  That test was scheduled for Friday of the same week at Washington Regional Medical Center.  I was a little shocked by this and especially due to the need to return to the hospital AGAIN because we all know how expensive it can be to even set foot inside a hospital, let alone have multiple procedures there over the course of 1-2 weeks.

A little more time has passed now and I’ve actually had ANOTHER procedure yesterday, from which I’m still recovering, so I’m going to leave this post “to be continued” for now because I’m extremely tired and battling post-sedation fatigue.  For this reason, I will ask your forgiveness for any typos or scattered thoughts in this post.  😉

💖 Wishing you all a low pain level day 💖

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