u/_ileostomom

i've had this disease for nigh 30 years. i had my colon removed in December. over the past couple weeks my providers think i may have gastroparesis. i searched the sub, and found some others who have gastroparesis along with crohn's... curious if anyone out there would be willing to share their treatment plan... i'm worried this will be more life-altering than crohn's has been.

next up for me is a gastric emptying study. i already had a gastrografin done... ugh.

apologies for the long post.

i've had Crohn's since childhood.

about a year ago i moved from a large east coast city to a rural state west of the mississippi. my specialist out east referred me to a new provider in my new town but was waitlisted for months. i was actively flaring with raging perianal Crohn's. i ended up going to the ER because that was the only way i could get in to be seen by anyone. thankfully a GI squeezed me into his caseload when he saw how rekt i was. he switched me from rinvoq to Remicade. he referred me to a colorectal specialist to help with my fistulas. then his nurse told me one day "by the way, your specialist is moving to another state next week. im sorry no one told you." i wasn't referred to anyone new, even in the practice. i had a follow-up with my aforementioned colorectal specialist and he told me basically that where we live is a terrible place to have a complex medical condition-- that specifically there is a shortage of GI specialists in this state that's always rated poorly for healthcare (48 out of 50 iirc). he did help me get in with another GI who put me on Skyrizi when Remicade wasn't cutting it. (fast forward to this past week: my dermatologist told me to
stop Skyrizi and the GI agreed so i'm coasting on budesonide for the time being).

long story short, i had a proctocolectomy with end ileostomy creation in december and was doing great. needed a lil emergency surgery to clear away a healing-related blockage but besides that was feeling amazing for the first time in a very long time. i have realized though that i totally need to relearn my body. i knew all my personal warning signs for flares etc when i had my bum colon but now i dont know what any sensations or feelings mean or what warrants attention. i went to the ER with a suspected blockage this weekend to find that my stomach isn't properly emptying and needed an NG tube to pump out over a liter of God-knows-what because the organ was distended to the point where it filled half my abdomen. an upper endoscopy showed no problems. a gastrografin test showed nothing. so i was discharged with a shrug and a directive to follow up with my GI.

now what i haven't mentioned is my GI hasn't seen me since before my proctocolectomy. the PA i was scheduled to see has had to reschedule twice. i'm not blaming them for whatever the hell happened in my body this weekend but i'm really frustrated with them in general. i'm tempted to look out of state for a different GI. does anyone else do that? am i being dramatic?

I don't know if this is the right sub.

I got off work on Saturday and on my way home started feeling really off, like maybe I had a blockage. I had a blockage a few months ago and did not want to mess with the risk.

Ended up going to the ER, forced down some contrast, had a CT. No blockage was immediately visible BUT my stomach was distended to the degree that it covered
over half of my abdomen and was full of liquid-- over a liter.

NG tube was placed without complication and it's been emptying my stomach since. I have an upper endoscopy in two hours to try and figure out what's going on. I've had Crohn's for close to thirty years and have endured a lot from that diagnosis in myriad hospital settings but this NG tube situation is probably the hardest thing I've had to deal with for reasons I can't explain.

Feeling really alone, crusty, overwhelmed. I guess this really isn't specifically related to ostomies...