my scope was back in late feb.
My time line is like this
Xmas 2017 - get sick
Late jan - schedule drs appt because nothing is getting better no matter what i try and i am seeing blood
They cant get me in for month. By then i am almost 100% fine but do the procedure.
Feb 2018 go in for the scope to rule out cancer. Get scope. Dr says i have IBD-U and that i am to schedule a follow up. Gave me a perscript
ion for the only drug i am allergic to in the universe even though i put it on my allergy sheet at the time fo the scope as well as it is documented very well in all my records.
March i go in for the follow up. It isnt with a doctor but with a physicians assistant. They cant read my colonoscopy and what the dr wrote so they have no idea what is going on. Apparently the doctor cant write so others can read it. Then the PA says i need to get on drugs. By that time i was fine. Never felt better in my life so i didnt get any drugs. Then they say i could get cancer. That's helpful. They want me to schedule a 1 month followup
I go back after 1 month and feel 100% fine. NO issues. I just assume i wasted $5000 out of pocket on misdiagnoisis because i am fine and nobody can read what the doctor wrote anyway. I just ask them if the symptoms come back if i can go on the drugs then by calling them and getting the perscript
ion and not wasting days on end driving around to meet them for 5 minutes. They agree.
I am fine all year until very early october.
Its back. I try to ride it out for 2 - 3 weeks but its just not getting better. I call in and they honor the prescript
ion and get me on mesalimine.
I go on that for 15 - 20 days. No change. They claim it can take a while (14 days). I contact them again and they want me to come in and talk to an actual doctor.
I go in and talk to the actual doctor and they say to stay on the mesalmine. We will run blood and stool tests which i said was pointless but did anyway. They said if the test all come back negative we can try pred.
THey give me the "everyone is different" story and there are all kinds of things we can try bit.......and that i need to assemble a team of doctors and staff to work with etc etc. Just a lot of fluff.....
Called in today to get results because i hadnt heard anything back at all on the tests. The doctor is out today....but the assistant says all my labs are normal and healthy. Maybe the doctor will be back tomorrow and be able to prescribe the pred so i can get on that and hopefully the helps.
What i dont understand is if they are going to go through the trouble of cameraing your entire colon *** do they not record it so you can watch it or anyone that might treat you later can see how it is either progressing or getting better? That makes NO sense. The doctor that performs these procedures probably looks at 40 colons a day. HE sure as heck isnt going to remember yours the next time around or care. His whole job is staring at colons all day. IF this is such a individual treatment plan disease how can they possibly treat it not being able to read your chart 1 week after the procedure is performed let alone the rest of your life.
Maybe all of this is common protocol but it sure seems backwards and careless. Meanwhile, ill be on the can i guess