Difficulty with Salofalk canister, anyone else have this? Also changing doctors question.

Hello, I'm having another flare-up at the moment. It's very similar to my last flare (Dec 2014 - Feb 2015) in that there is no bleeding, vomiting or anything yet. I am just having pain and gurgling. I have stopped eating, and have begun taking Salofalk enemas at night (obviously I am also taking my Asacol pills and Actimels as normal).

However, I am finding it very difficult to actually dispense the foam. I am taking the enemas whilst lying on my left side (in bed), with my right knee pulled up a bit (I find taking enemas standing up too difficult). I find it really hard to press the plunger, it feels like the canister (80 gram size) is too big for my hand, and when I do manage to press it down, it really hurts my fingers. Admittedly I am a woman, but I don't think I have particularly small hands.

Has anyone else had this problem?

Also, I have been on the enemas for 2 days now, with no improvement. I realise that is maybe not very long, but when I spoke to the nurse this morning, she said that I will have to go back on the steroids if it is no better in a couple of days.

I don't really want to go back on steroids unless I have to, not just because of the side-effects, but also because my GP's were so unhelpful about it last time, and kept trying to give me non-enteric coated ones, and also would only give me 10 days supply at a time. It made me hugely stressed, which is a massive flare trigger for me, and I'm sure it made me iller.

Has anyone else experienced this? The hospital have always been brilliant with my UC, but the GP's are just awful and act like they just do not care. I was so angry and upset last time that I wanted to move doctors, but my mum said it was a bad idea, as they would be angry, and that another doctors might be just as bad.

Has anyone else changed doctors?

Are you able to get hold of/use the liquid Salofalk enemas instead? I've also used the foam ones before and had the same problem with the canister size. I found the liquid ones much easier to use, not only are they designed to be used whilst laying on your side which I found helped with retaining them but also they come in a sort of squeezy bottle which I think is easier to use and a better size than the canister for the foam ones.
I also found that the liquid enemas were more effective for me than the foam ones, partly I think because the liquid was easier to retain than the foam.

In terms of doctors, is it just one GP that's no good or all the GPs at your practice? I've changed GP within the same practice before because my first one was no good (kept telling me I had IBS and wouldn't refer me to a consultant) and it was definitely a sensible decision, my current GP is much more understanding of the problems that UC causes but is also willing to admit where she lacks knowledge and needs to seek advice from a consultant.
I've not changed practices since my diagnosis (didn't feel like I needed to because I'd been lucky enough to find a decent GP in the same practice) but if you look on the NHS Choices website (if you're UK based) they have patient ratings of different practices in your area which might help if you are looking to switch doctors.
If you don't feel like you want to change GP practice, you can always tell them you're going to make a complaint (even if you don't really intend to)/ask to speak to the practice manager. I used to work as a receptionist in a GP surgery so I know for a fact how terrified GPs and practice managers get at the idea of a complaint against them; everytime someone mentioned the word "complaint" at our surgery their GP seemed to magically start doing what they wanted in an attempt to stop them taking it any further!

Hope some of this is helpful! :)

To my knowledge the enteric coated ones are brand name like Uceris. I am not aware of enteric coated prednisone. It is understandable that a letter of medical necessity would be requested for a change in prescription to a brand name alternative steroid.

Hi, sounds like you are having a difficult time.

I can't use canisters, my wrists are too weak to squeeze them, do ask to be prescribed the 2g salofalk liquid, it's a collapsible squeezy bottle, much easier to get out.

As you are experiencing a different effect this time, are you sure you are definitely flaring and this isn't something else? Have you had a stool calprotectin test to be sure you are dealing with inflammation at the moment?

As for your GP, sorry they are such a nightmare. You certainly can change GP but you need to try to find a good one. Ask around as much as you can in your area and see if there's anyone people consistently rate as good. My work brings me into contact with GPs and the standard of care varies a great deal.

The enteric coated tablets are not uceris, they are just pred coated so that they don't dissolve in the stomach. The problem with getting them in the UK is that they say that there is not enough evidence that they protect from gastritis so they are not in the guidelines. However, they are available and really are not that expensive and they should prescribe them to you if you feel better on them. I'm lucky that my GPs do what I ask within reason. I had one who had done a turn in a gastro dept on his training and he actually refused to prescribe me non-enteric coated ones as I have diagnosed gastritis, sadly he has moved on....

Usually I get a good relief in about 2 weeks. But there were times when it took 3 weeks to see significant improvement. However, when taken by them self (no oral meds & no supositiries in the morning) they did not really worked much.

I know the enema should treat from sigmoid to rectum but they don't seem to do much for the rectum for me.