A pancreatitis history and the conversation that followed

Started 11 December 2024 · 24 replies · 274 hearts · read 4.8k times

BibiRabat, MA · 11 December 2024

1.6 years ago

A pancreatitis history and the conversation that followed Writing it down partly to work out what I actually think.

Before anyone says it: yes, I have an appointment booked. I would still like to hear from people who have had this.

I have avoided asking about this for six weeks out of pure embarrassment, which is ridiculous given that this circle exists precisely for it.

Squeamish subject, so I am going to be plain about it and get it over with. It has been going on for long enough now that I would like to know whether it is ordinary.

Sorry to be graphic. If anybody has had this, I would rather hear it plainly than politely.

AleksLjubljana, SI

I asked for a slower schedule specifically because of my history and it was granted without argument. I had expected to have to make a case.

ÖzlemIzmir, TR

Somebody here suggested writing a one-page summary of my history to hand over at appointments, and it has saved me an enormous amount of repeating myself.

11me too 2

TomásFacilitatorLisbon, Portugal

Thank you for writing something this unglamorous down. Half this circle has had it and almost nobody says so, and you have just made the next thread easier for somebody.

BryherIsles of Scilly, UK

Picking up Tomás’s point rather than starting a new one.

What I found was that my baseline was so unusual that comparisons to other people's experiences told me almost nothing. My own notes were the only useful data.

BramberSteyning, UK

What I did not expect was how much better I felt once somebody acknowledged that the combination was complicated. The acknowledgement itself helped.

EphraimBrooklyn, NY

Reading Bramber, I recognised more of that than I expected to.

I keep a note of what my normal actually is, written down when I am well, because from inside a bad fortnight I cannot remember.

BettinaGraz, AT

Ephraim — yes, and the bit that took me longest to accept was the next part.

The overlap in symptoms is the genuine difficulty. Two things producing similar sensations and no obvious way to tell them apart from inside.

NoraDublin, IE

My team's approach was to change one thing at a time and wait, which was frustrating and correct.

PosyChichester, UK

Mine required one pause and one restart in eighteen months and both were planned rather than emergencies. That is a good outcome for a complicated gut.

GethinMerthyr Tydfil, UK

#10

Grateful you posted rather than kept it to yourself.

NyalaAddis Ababa, ET

#11

Gently disagreeing with Gethin, or rather adding the other half of it.

My gut was already complicated before any of this and the general advice mostly did not apply to me. Bringing it to somebody who knew my history was the only thing that worked.

13me too 4

BibiRabat, MA

#12

Coming back to say we found a workable arrangement, slowly, with two teams and a lot of notes, and I have been stable for a year.

AleksLjubljana, SI

#13

I want to say clearly that nothing in this circle replaces the specialist who knows your history. We are company, not a second opinion.

ÖzlemIzmir, TR

#14

Gently disagreeing with Nyala, or rather adding the other half of it.

I had my existing condition reviewed before starting rather than after, and my gastro team were much more involved than I expected them to be.

BrackenHexham, UK

#15

My consultant was cautious rather than opposed, which turned out to be the right posture, and we went considerably slower than the standard schedule.

BryherIsles of Scilly, UK

#16

Bracken said something I want to sit with for a second.

What helped was keeping a log that recorded both, separately, so that my two teams were not each hearing a summary of everything.

BramberSteyning, UK

#17

The hardest part was working out which symptoms belonged to which thing. After twenty years I knew my usual pattern, and this was a new pattern layered on it.

EphraimBrooklyn, NY

#18

I would say get the two sets of clinicians talking to each other if you possibly can. Mine were not, for a year, and I was the messenger and I got it wrong twice.

BettinaGraz, AT

#19

A pharmacist spotted a timing interaction that two doctors had not, and it explained about six weeks of difficulty.

NoraDublin, IE

#20

The most useful question I asked was what would make them want to stop, so that I knew what I was watching for rather than watching for everything.

PosyChichester, UK

#21

Ephraim — yes, and the bit that took me longest to accept was the next part.

Something that surprised me: my long-standing symptoms improved rather than worsened. That is not everybody's experience and I did not expect it to be mine.

GethinMerthyr Tydfil, UK

#22

The bit in the middle is the bit I needed to read.

TomásFacilitatorLisbon, Portugal

#23

Adding this thread to the circle's standing resources, because it is the clearest account of this we have and the question comes back every few months.

BibiRabat, MA

#24

The flare I had at month three turned out to be my usual condition doing its usual thing at its usual time of year, and I had blamed the medication for a fortnight.