hello!
I was originally just the child of someone with UC - my mother was diagnosed in her 20s and IIRC she is HLA-B27 positive - but over the past month had bizarre bloating and increasingly loose diarrhea regardless of what I ate. I got asked if I was pregnant multiple times. Long story short: no. I have a family history of pancreatic and colon cancer also but had no insurance until July 18th, then figured I'd make an appointment eventually ...
The short version of the past three days: Rectal bleeding started Friday morning, then turned into blood-and-mucus, and since then I've had nothing but that and not produced stool. Went to the doctor on Saturday morning, they sent me to the hospital. My hemoglobin is usually abnormally elevated so I wasn't anemic; due to all the cancer risks, got a CT which was "perfect from the outside"; everyone at the hospital was guessing based on symptoms/vitals/presentation that it's Crohn's and would only be able to be visualized by colonoscopy which they can't do on an emergent basis. Hemoccult/fecal occult blood was positive. Bloodwork normal other than electrolytes a little off due to my not being able to eat. The rectal pain and abdominal cramping also has me exhausted.
I am about to turn 30 and had figured I was simultaneously too old for or too young for this to happen considering the standard diagnostic ages! I figured I'd have another 20 years before I got labeled at risk again ... nope, guess not.
Anyway. I'm also autistic and have major sensory issues with flavor; I'm terrified of the bowel prep and also afraid of having the scope done while in this much rectal pain. While I'm in the medical field myself GI is out of my wheelhouse except for dealing with my dad's cancer as a family member and being around my mom's in-remission UC, but going into things blind makes me nervous so I'm hoping I can get some enlightenment on some things, like:
- once I see GI (they're supposed to call me today and haven't yet), will they start treating the symptoms or do I have to wait for a scope first?
- considering I haven't been able to have a bowel movement in four days anyway and only get the occasional yellow mucus, will they even have me do a prep? there's definitely nothing in there!
- is virtual colonoscopy an option for diagnosis? (again, TERRIFIED of the prep. because of the taste I know I won't be able to handle, and the numerous food allergies that make masking it difficult.) I'm near a major IBD center and a patient at its affiliated hospital so I know they're capable of doing it in a "technology is available" sort of way.
- I already have prednisone at home for another autoimmune condition: on a scale of 'stupid' to 'extremely stupid' to 'just bad' how bad would it be if I just started taking it to try to relieve the symptoms so I can function at my already somewhat disabled baseline?
I'm currently trying to move (thankfully it's a short move but it requires a lot of energy!) and have no sick time at work, so I don't know how much I can afford to be this miserable. I'm currently consuming soft bland foods and still producing no bowel movements, just thin and foul-smelling mucus.
I was originally just the child of someone with UC - my mother was diagnosed in her 20s and IIRC she is HLA-B27 positive - but over the past month had bizarre bloating and increasingly loose diarrhea regardless of what I ate. I got asked if I was pregnant multiple times. Long story short: no. I have a family history of pancreatic and colon cancer also but had no insurance until July 18th, then figured I'd make an appointment eventually ...
The short version of the past three days: Rectal bleeding started Friday morning, then turned into blood-and-mucus, and since then I've had nothing but that and not produced stool. Went to the doctor on Saturday morning, they sent me to the hospital. My hemoglobin is usually abnormally elevated so I wasn't anemic; due to all the cancer risks, got a CT which was "perfect from the outside"; everyone at the hospital was guessing based on symptoms/vitals/presentation that it's Crohn's and would only be able to be visualized by colonoscopy which they can't do on an emergent basis. Hemoccult/fecal occult blood was positive. Bloodwork normal other than electrolytes a little off due to my not being able to eat. The rectal pain and abdominal cramping also has me exhausted.
I am about to turn 30 and had figured I was simultaneously too old for or too young for this to happen considering the standard diagnostic ages! I figured I'd have another 20 years before I got labeled at risk again ... nope, guess not.
Anyway. I'm also autistic and have major sensory issues with flavor; I'm terrified of the bowel prep and also afraid of having the scope done while in this much rectal pain. While I'm in the medical field myself GI is out of my wheelhouse except for dealing with my dad's cancer as a family member and being around my mom's in-remission UC, but going into things blind makes me nervous so I'm hoping I can get some enlightenment on some things, like:
- once I see GI (they're supposed to call me today and haven't yet), will they start treating the symptoms or do I have to wait for a scope first?
- considering I haven't been able to have a bowel movement in four days anyway and only get the occasional yellow mucus, will they even have me do a prep? there's definitely nothing in there!
- is virtual colonoscopy an option for diagnosis? (again, TERRIFIED of the prep. because of the taste I know I won't be able to handle, and the numerous food allergies that make masking it difficult.) I'm near a major IBD center and a patient at its affiliated hospital so I know they're capable of doing it in a "technology is available" sort of way.
- I already have prednisone at home for another autoimmune condition: on a scale of 'stupid' to 'extremely stupid' to 'just bad' how bad would it be if I just started taking it to try to relieve the symptoms so I can function at my already somewhat disabled baseline?
I'm currently trying to move (thankfully it's a short move but it requires a lot of energy!) and have no sick time at work, so I don't know how much I can afford to be this miserable. I'm currently consuming soft bland foods and still producing no bowel movements, just thin and foul-smelling mucus.
