Fobbed off by my gastro department.
Posted , 3 users are following.
Hi. This isn't just a rant, there is a question I was wondering about and I'm looking for suggestions. Sorry for the long post.
I know for a fact due to how my bowels are behaving that i'm now at the beginning of a third flare the past few days and I'm seething at how once again I've been fobbed off. In the early stages of a flare it's paramount to nip it in the bud to stop it progressing, and all three times now I've basically been told to see how it goes. During my two previous ones I had to wait weeks to be seen.
I was advised to lower my dosage of Asacol and imuran, even though I was reluctant to do that and told them it would likely cause a flare to come, and now it has in the past week or so.
The advice I've been given is return to the dose I was previously on, which I already did and which is achieving nothing. I had to repeatedly phone my gastro department after being told to see how it goes, as I wanted to try and use enema or suppository Meds instead as it's still very early doors (I refuse to go anywhere near steroids).
A few hours later I was called back and told that a UC specialist refused to prescribe me any rectal meds as theres "very little evidence to show they work" and that was it, no alternatives suggested. I've seen loads of people saying they worked for them. I was told that we'll speak again next Monday and see how my slightly increased dose has worked. It's going to get worse in that time! I can already feel it messing about inside!
I've never known a department to be so difficult and awkward. I'm going around in circles, not being prescribed anything and being refused alternatives, how hard is it to just try out a medication for a couple of days and see if it works?!
I'm thinking of forcing the issue and going to a GP and getting a prescription off them anyway. Is that possible? I'd even consider having the bloody thing removed via surgery now, I know thats a last resort but I'm beyond sick of all of this. You dont have to have a stoma bag, your small intestine can double as a large after surgery. I wouldn't have that option anyway as they wouldn't allow me to have it done!
If anyone has any suggestions I'd be interested to hear. Thanks for reading.
0 likes, 3 replies
rachelle52846 Sawyer9
Posted
Hi Sawyer9
Sorry to hear you are having a hard time with your gastro fro is your flare really bad what are you symptoms are you bleeding from behind ? Loose stools
I felt the same about steroids however my flare lasted for 9 months going up to 20 times per day and pregnant and after baby i ended up on them and immune suppressed meds to try and calm it i have faith and know it's worked for others for me surgery was the road I was going down however if you are at the point where you need to be in hospital then do that or i would suggest you go to your gp and get a second opinion with another gastroenterologist and take it from there good luck and any questions happy to help .
Sawyer9 rachelle52846
Posted
No bleeding yet, but it most likely will get to that stage either next week or the week after if nothing's done. Stool this morning was a big warning sign, not loose but not as solid as it should be and it gets less solid every day.
I only have a limited window in which to stop this early, the longer I wait the harder it will be to treat. The only thing I can think of is go to a GP and insist upon different medication.
Ah bloody hell that must've been awful! That's twice as many times as my first flare which was pancolitis.
Cheers.
sheila91262 Sawyer9
Posted
Hi, I am sorry you have UC, it is a diificult disease.( I cleaned that up a bit). I would get a referral to another hosp, your GP will request it as you are unhappy with your treatment and you would like a second opinion.
It really is too early to consider surgery to remove your colon. You are referring to a pouch surgery where they make an internal bag from the small intestine which stores waste after the colon has been removed. I would recommend St Mark's London or John Radcliffe Hosp Oxford. Their Gastro depts are world renowned.
Good luck, Sheila.