So. The picoprep from last colonoscopy (march 21st) put me into a horrendous flare ive yet to get out of (long term, anyhow).
The story so far
1st admission to hospital: April 1st : 3 days.
Admitted with symptoms of partial/full obstruction plus epigastric pain (very sharp), vomiting.
Tox/Bac screen normal.
Had CT scan. 30 cm of TI, fatty tissue but no definitive scar tissue. Clear/Free fluids, methylprednisone 80 mg one day, said no to surgery at that time since no obstruction. Increased humira to weekly. Added methotrexate on discharge (25 mg subcut/week). Placed on elemental diet (ensure).
I should note that a week before the colonoscopy I had an MRI - that showed some resolution as compared to previous years, but nothing spectacular or that might explain epigastric pain/sudden pain (scar tissue etc)
2 weeks, feeling bit better, ocassionally hungry. Some nausea and a bit of vomiting.
Easter weekend: Stupidly ate candy (only ensure + water up to then). Ended up in hospital over weekend. Just pain relief and observation. Surgical was away at conference, discharged and told I can come back for surgical consult if I like.
Stayed with girlfriend for a while. Added a bit of fish, rice here and there, seemed to tolerate.
3rd Admission to hospital (away from home hospital): Just pain relief over the 3 days, plus free fluid, and low residue diet whilst on hospital. Told to call home IBD team for consult for possible obstruction (it wasn't - I get all the pain of obstruction without the obstruction, it seems).
One month later, 4th admission (again, away from home hospital). Clear fluids only. 3 day stay. 300 mg hydrocortisone daily. Pain relief. Rang IBD team in Sydney (Aussie here). Rebooked my appointment for July earlier.
Walked into ED on Monday with epigastric pain, nausea and vomiting (should not I never vomit anything but phlegm). Some diarrhea the previous days before. No fever etc. IBD team admitted me.
Considered surgery on the back of "failing" weekly humira and methotrexate (~ 3 months). Noticed I was starting to get flu like symptoms after methotrexate shots for a day or two. Maybe it was starting to work.
Episodes of pain in hospital whilst waiting for surgical consult: EPigastric pain but NOT lower right tenderness/pain. Nausea and vomiting.
Treated with 80 mg methylprednisone + flagyl 100 mg 2x daily IV. Inflammatory markers go down.
Advised for surgery. Accepted. Wife unhappy but supportive of me. Just sick of pain.
Was told on prednisone for so long, joining a risk. So stoma. All good. Take out the 30 cm of TI + small part of Large colon. OK. Sign document.
I didn't notice at the time it actually said "Right hemicolectomy + stoma formation". I remember my anatomy (molecular biologist /cancer researcher (formerly) by trade). That's the IC valve, the ascending colon and 1/2 transverse colon. Didn't mention TI. Obviously a screw up by the junior surgeons when writing it all out for the senior. He explained it differently (TI + small part large bowel), but the mistake (I think) shocked me.
During the day, wife is nervous about surgery. I never really gave diet a good go. It was only 3 months. Ocassional cheat.
Hence the emergency advice..I'm due for surgery in 36 hours, staring out the hospital window mulling and mulling. What would you in my situation? Try another 3 months and if not working, then surgery (on the condition the person who screwed up the paperwork is NOT part of the surgical team..ha!). Or go ahead with the stoma.
Or wait 3 months to get off the prednisolone for good, so if surgery still happens, better chance of not needing the stoma in the first place.
Everything has it's balance of risk/benefit. I'm just not sure which way the "balance" is weighing at the moment.
Should note, I've never noticed the pred do anything, although the latest IV pred seemed to (maybe in combination with the flagyl?). But the Humira seemed to work the first 6 months, lower right pain disappeared, but showed up ocassionally after 6 months, prompting the colonscopy in march where the picoprep actually put me into this effing flare.
The story so far
1st admission to hospital: April 1st : 3 days.
Admitted with symptoms of partial/full obstruction plus epigastric pain (very sharp), vomiting.
Tox/Bac screen normal.
Had CT scan. 30 cm of TI, fatty tissue but no definitive scar tissue. Clear/Free fluids, methylprednisone 80 mg one day, said no to surgery at that time since no obstruction. Increased humira to weekly. Added methotrexate on discharge (25 mg subcut/week). Placed on elemental diet (ensure).
I should note that a week before the colonoscopy I had an MRI - that showed some resolution as compared to previous years, but nothing spectacular or that might explain epigastric pain/sudden pain (scar tissue etc)
2 weeks, feeling bit better, ocassionally hungry. Some nausea and a bit of vomiting.
Easter weekend: Stupidly ate candy (only ensure + water up to then). Ended up in hospital over weekend. Just pain relief and observation. Surgical was away at conference, discharged and told I can come back for surgical consult if I like.
Stayed with girlfriend for a while. Added a bit of fish, rice here and there, seemed to tolerate.
3rd Admission to hospital (away from home hospital): Just pain relief over the 3 days, plus free fluid, and low residue diet whilst on hospital. Told to call home IBD team for consult for possible obstruction (it wasn't - I get all the pain of obstruction without the obstruction, it seems).
One month later, 4th admission (again, away from home hospital). Clear fluids only. 3 day stay. 300 mg hydrocortisone daily. Pain relief. Rang IBD team in Sydney (Aussie here). Rebooked my appointment for July earlier.
Walked into ED on Monday with epigastric pain, nausea and vomiting (should not I never vomit anything but phlegm). Some diarrhea the previous days before. No fever etc. IBD team admitted me.
Considered surgery on the back of "failing" weekly humira and methotrexate (~ 3 months). Noticed I was starting to get flu like symptoms after methotrexate shots for a day or two. Maybe it was starting to work.
Episodes of pain in hospital whilst waiting for surgical consult: EPigastric pain but NOT lower right tenderness/pain. Nausea and vomiting.
Treated with 80 mg methylprednisone + flagyl 100 mg 2x daily IV. Inflammatory markers go down.
Advised for surgery. Accepted. Wife unhappy but supportive of me. Just sick of pain.
Was told on prednisone for so long, joining a risk. So stoma. All good. Take out the 30 cm of TI + small part of Large colon. OK. Sign document.
I didn't notice at the time it actually said "Right hemicolectomy + stoma formation". I remember my anatomy (molecular biologist /cancer researcher (formerly) by trade). That's the IC valve, the ascending colon and 1/2 transverse colon. Didn't mention TI. Obviously a screw up by the junior surgeons when writing it all out for the senior. He explained it differently (TI + small part large bowel), but the mistake (I think) shocked me.
During the day, wife is nervous about surgery. I never really gave diet a good go. It was only 3 months. Ocassional cheat.
Hence the emergency advice..I'm due for surgery in 36 hours, staring out the hospital window mulling and mulling. What would you in my situation? Try another 3 months and if not working, then surgery (on the condition the person who screwed up the paperwork is NOT part of the surgical team..ha!). Or go ahead with the stoma.
Or wait 3 months to get off the prednisolone for good, so if surgery still happens, better chance of not needing the stoma in the first place.
Everything has it's balance of risk/benefit. I'm just not sure which way the "balance" is weighing at the moment.
Should note, I've never noticed the pred do anything, although the latest IV pred seemed to (maybe in combination with the flagyl?). But the Humira seemed to work the first 6 months, lower right pain disappeared, but showed up ocassionally after 6 months, prompting the colonscopy in march where the picoprep actually put me into this effing flare.
