My experiences post total pancreatectomy.

Struggling with abdominal pain

on May 5, 2014

It’s been a tough weekend abdominal pain wise. My weekend started great with a great middle school musical production on Friday night. I was feeling pretty good and was very excited to see my friends. But I guess I should preface my remarks with a brief review of my recent activities…

I was hospitalized for a week with severe abdominal pain, nausea and vomiting (N/V) until this past Tuesday. I know!! I had this surgery to reduce or more importantly, eliminate my abdominal pain, specifically, and the incessant nausea and vomiting. Yet, somehow, I continue to have abdominal pain, but it’s completely different than my preoperative, chronic pancreatitis (CP) pain. Yes, the nausea and vomiting are exactly the same. Truth be told, I don’t know how it could be any different anyways, but I digress.

Immediately post op, I knew my CP pain was gone, despite the acute, post op surgical pain. I no longer had that gnawing, stabbing, I-can’t-take-it-anymore midback pain!!!! And, I can’t really put it into words, but my belly felt different. Yes, I know that they had just cut me open from my sternum to my southern region, but somehow my belly felt lighter. I’m sorry I can’t verbalize it any better than that. I just knew…or maybe it was wishful thinking??

Two months post op, the acute surgical pain was markedly decreased. I was still sore but moving around was much easier. My biggest complaint was fatigue. And, I could still say my pancreatitis pain was G-O-N-E!!! I had had 26 plus years of severe, unrelenting epigastric pain with radiating pain to my midback that NEVER went away & got worse if I tried to eat. But it was & still is G-O-N-E!!! I can say, without a doubt, that I am immensely happy that the back pain no longer exists.

In May 2013 , at 3 months post op, I started to experience epigastic pain unrelated to meals. It was and is different than the CP pain but was severe at this time. Unfortunately, it turned out to be a complete intestinal obstruction due to adhesion that I had to have surgically repaired. I did well with that surgery and thought this experience was behind me. Boy, was I wrong!!!! Just about a month later, I experienced the same pain and required hospitalization again. Luckily, this time it resolved on it’s own without surgery but since that time I continue to be plagued by this scenario every couple of weeks. I haven’t required surgery again, thankfully but this is getting annoying!!

My doctors are calling this abdominal pain, N/V pseudo obstructions. The theory is I’m partially obstructing but after I curtail any eating or drinking for a couple of days, the partial obstruction resolves as well as the pain and I can begin to advance my diet again as I tolerate it until the next occurrence. This most recent hospital stay was yet another visit from the pseudo obstruction fairy.


This visit to Massachusetts General Hospital (MGH) was a blessing in disguise though. I’ve been having some trouble regulating my basal insulin dose overnight & this hospital stay allowed my nurse practitioners(NP) and I to do some basal insulin testing with my insulin pump to fine tune my doses. We figured out that I need 2 different basal doses for daytime and over night. So, I wasn’t just laying around sleeping and watching TV during my hospital stay!! (Like I could with the pain, N/V I was enduring!). I was busy keeping detailed blood glucose(BG) logs so we could figure out my basal doses. But just to screw up our calculations while taking nothing by mouth (NPO), I was started back on my J Tube feedings. So, back to the basal testing and log keeping for me!! I’ve been home for almost a week and I’m still tweaking my insulin because the tube feeding rate keeps getting tweaked. I’m hoping to someday figure all this out, please, God!!Ha ha!!( Like the big D (diabetes) would let me have a moments peace. Anytime I think I’ve got things figured out and can coast on the diabetes front, then WHAM!!! Things change, just because the D fairy said so!!


Now, back to this past weekend…Friday night was a blast!!! I didn’t go crazy with the bit of eating I was able to do. I got home at a decent time, my BG had been behaving all night. But when I woke up Saturday morning, the pseudo obstruction monster had returned for another repeat performance!!! I tried to make plans to meet up with my sewing buddies for some quality time, but my belly had other plans!! I spent the day arguing with myself about whether this pain I was experiencing required a return to MGH. My stubborn Irish roots won out and I stayed home, but it wasn’t a pleasant day to say the least. Sunday was a better day but still not what I had anticipated when I signed up for my completion pancreatectomy and islet autologous transplant!!!! I go to see my PCP on Tuesday morning, so I’m going to lay low until I see her, hopefully preventing my return to MGH. I don’t see gastroenterology (GI) until next week, but I will call the NP if things don’t calm down.


Having said all this and complaining about my symptoms, I am grateful that I had the rest of my pancreas removed and attempted the islet transplant!!!! I HATE having the pain that I have now and YES!!! it does get to be excruciating but it still doesn’t compare to the CP pain!!!! Like I said, I don’t have that excruciating back pain anymore. That, in and of itself, is reason enough for me to have gone through the surgery. So, if you’re considering this surgery, don’t let me scare you away!!! Life is infinitely better post op!! Is it perfect?? By no means!! But, I didn’t expect to return to my pre-CP self. I knew with such extensive surgery that there would be some adjusting to a new, “normal” involved and I’m still adjusting. That being said, I don’t like the new “normal”!!! But I’ll take any improvement I can get.


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