Concerns but hopeful for nothing

Megan, looks like our posts on the topic of being "hypersensitive" are crossing in more than one thread.  I had a small bowel resection in 2011 and starting about six months later, I started having what I describe as "abdominal episodes" at night, maybe every 3-4 weeks.  I could feel them coming on as very mild abdominal discomfort, always at night (between 11 p.m. and 5 a.m.), but once they started it was excruciating pain in my upper abdomen — I felt like if I could just vomit or go to the bathroom I'd feel better, but always ended up just dry-heaving (and looking like a boxer the day after a fight from all the bust capillaries in my face).  This went on for almost 18 months.  I had several PET scans where an area in the same general vicinity was lighting up on the scan.  I went through both an upper and lower double-balloon enteroscope (DBE) that wasn't able to fully visualize my small intestine end-to-end, but they believe they saw a large portion of it and it never found any abnormality.  It would light on one scan and three months later look fine.

In early 2013, I had a brain met, which required a craniotomy and a session of stereotactic radiosurgery.  During that brief time I was on steroids to treat the cerebral edema (swelling), I was also given Protonix (pantoprazole, a proton-pump inhibitor like Prilosec) to help with possible digestive side effects of the steroid.  I went a few months without any of these episodes, so when the time came to discontinue the Protonix, I asked if I could stay on it and see how it went.  I went a year without any episodes.  Absent any other evidence of a new metastases, we're not sure what exactly the cause of these episodes is — I'd never had an issue with heartburn of any kind, acid reflux,anything like that, before (this is what Protonix is usually prescribed for, and the pain tends to be in my upper abdomen).  So perhaps it's reflux that coincidentally started in the past few years.  The other explanation that my doctor leans towards is that it's transient, periodic inflammation at the site of the small bowel resection.  That would explain the lighting up on PET periodically, and the fact that it's not always in the exact same location is easily explained by the fact that the small bowel is always in motion.  Whether the pain and the PET-CT scan light-up are related isn't 100%.  This past April, it lit up again on PET.  I didn't have any episodes, but they decided to do another lower DBE, which found nothing.  In the 10 days or so after the scope, I had three episodes, but none since, so I think the scope just aggravated my small bowel for awhile.  It lit up again in July, but the CT portion still shows no associated mass (understanding that the CT done with a PET-CT isn't diagnostic), so for now, we're being vigilant from scan to scan.  

Definitely frustrating, though.  Keeping you and Kevin in my thoughts and prayers that you get not just answers, but good answers.

Best, Joe

Megan, looks like our posts on the topic of being "hypersensitive" are crossing in more than one thread.  I had a small bowel resection in 2011 and starting about six months later, I started having what I describe as "abdominal episodes" at night, maybe every 3-4 weeks.  I could feel them coming on as very mild abdominal discomfort, always at night (between 11 p.m. and 5 a.m.), but once they started it was excruciating pain in my upper abdomen — I felt like if I could just vomit or go to the bathroom I'd feel better, but always ended up just dry-heaving (and looking like a boxer the day after a fight from all the bust capillaries in my face).  This went on for almost 18 months.  I had several PET scans where an area in the same general vicinity was lighting up on the scan.  I went through both an upper and lower double-balloon enteroscope (DBE) that wasn't able to fully visualize my small intestine end-to-end, but they believe they saw a large portion of it and it never found any abnormality.  It would light on one scan and three months later look fine.

In early 2013, I had a brain met, which required a craniotomy and a session of stereotactic radiosurgery.  During that brief time I was on steroids to treat the cerebral edema (swelling), I was also given Protonix (pantoprazole, a proton-pump inhibitor like Prilosec) to help with possible digestive side effects of the steroid.  I went a few months without any of these episodes, so when the time came to discontinue the Protonix, I asked if I could stay on it and see how it went.  I went a year without any episodes.  Absent any other evidence of a new metastases, we're not sure what exactly the cause of these episodes is — I'd never had an issue with heartburn of any kind, acid reflux,anything like that, before (this is what Protonix is usually prescribed for, and the pain tends to be in my upper abdomen).  So perhaps it's reflux that coincidentally started in the past few years.  The other explanation that my doctor leans towards is that it's transient, periodic inflammation at the site of the small bowel resection.  That would explain the lighting up on PET periodically, and the fact that it's not always in the exact same location is easily explained by the fact that the small bowel is always in motion.  Whether the pain and the PET-CT scan light-up are related isn't 100%.  This past April, it lit up again on PET.  I didn't have any episodes, but they decided to do another lower DBE, which found nothing.  In the 10 days or so after the scope, I had three episodes, but none since, so I think the scope just aggravated my small bowel for awhile.  It lit up again in July, but the CT portion still shows no associated mass (understanding that the CT done with a PET-CT isn't diagnostic), so for now, we're being vigilant from scan to scan.  

Definitely frustrating, though.  Keeping you and Kevin in my thoughts and prayers that you get not just answers, but good answers.

Best, Joe

Megan, looks like our posts on the topic of being "hypersensitive" are crossing in more than one thread.  I had a small bowel resection in 2011 and starting about six months later, I started having what I describe as "abdominal episodes" at night, maybe every 3-4 weeks.  I could feel them coming on as very mild abdominal discomfort, always at night (between 11 p.m. and 5 a.m.), but once they started it was excruciating pain in my upper abdomen — I felt like if I could just vomit or go to the bathroom I'd feel better, but always ended up just dry-heaving (and looking like a boxer the day after a fight from all the bust capillaries in my face).  This went on for almost 18 months.  I had several PET scans where an area in the same general vicinity was lighting up on the scan.  I went through both an upper and lower double-balloon enteroscope (DBE) that wasn't able to fully visualize my small intestine end-to-end, but they believe they saw a large portion of it and it never found any abnormality.  It would light on one scan and three months later look fine.

In early 2013, I had a brain met, which required a craniotomy and a session of stereotactic radiosurgery.  During that brief time I was on steroids to treat the cerebral edema (swelling), I was also given Protonix (pantoprazole, a proton-pump inhibitor like Prilosec) to help with possible digestive side effects of the steroid.  I went a few months without any of these episodes, so when the time came to discontinue the Protonix, I asked if I could stay on it and see how it went.  I went a year without any episodes.  Absent any other evidence of a new metastases, we're not sure what exactly the cause of these episodes is — I'd never had an issue with heartburn of any kind, acid reflux,anything like that, before (this is what Protonix is usually prescribed for, and the pain tends to be in my upper abdomen).  So perhaps it's reflux that coincidentally started in the past few years.  The other explanation that my doctor leans towards is that it's transient, periodic inflammation at the site of the small bowel resection.  That would explain the lighting up on PET periodically, and the fact that it's not always in the exact same location is easily explained by the fact that the small bowel is always in motion.  Whether the pain and the PET-CT scan light-up are related isn't 100%.  This past April, it lit up again on PET.  I didn't have any episodes, but they decided to do another lower DBE, which found nothing.  In the 10 days or so after the scope, I had three episodes, but none since, so I think the scope just aggravated my small bowel for awhile.  It lit up again in July, but the CT portion still shows no associated mass (understanding that the CT done with a PET-CT isn't diagnostic), so for now, we're being vigilant from scan to scan.  

Definitely frustrating, though.  Keeping you and Kevin in my thoughts and prayers that you get not just answers, but good answers.

Best, Joe

Will certainly pray for Kevin today Megan.  I'm sure it's nothing but like you say it's best to err on the safe side.  I wonder in 10 years from now if I will still be as sensitive to every ache and pain (see how I'm using the power of positive thinking there 🙂

Brian

Will certainly pray for Kevin today Megan.  I'm sure it's nothing but like you say it's best to err on the safe side.  I wonder in 10 years from now if I will still be as sensitive to every ache and pain (see how I'm using the power of positive thinking there 🙂

Brian

Will certainly pray for Kevin today Megan.  I'm sure it's nothing but like you say it's best to err on the safe side.  I wonder in 10 years from now if I will still be as sensitive to every ache and pain (see how I'm using the power of positive thinking there 🙂

Brian