Salofalk foam enema - should I feel it?

[Bunnygirl1]

Thanks in advance if anyone has experience using foam enemas - in particular, Salofalk.

I just had colonoscopy and endoscopy 2 days ago after suffering a UC flare up as a result of COVID with intestinal symptoms in November.

Was very shocked and disappointed to learn that my ulcerative proctitis has spread.

Since diagnosis in 1991 until now, it has always been only around 3cm of inflammation. Now it is suddenly 30cm! My last scope in 2019 showed 3cm of inflammation.

Gastro said to start Salofalk foam enema straight away at night.

After having a bad reaction to Mezavant tablets in December, I thought I would just use one pump of the Salofalk foam to start with to see if it caused any reaction.

Last night I followed the instructions (not sure if I was able to insert it far enough due to hemorrhoids and pain from the colonoscopy) - but I don't think anything came out of the can!

I could not feel anything going in. Should I feel it?

And there was no leakage or mess overnight.

I really don't know what I did wrong.

Do any of you kind folk have any experience to share with me?

Thanks in advance!

[Brian1977]

Yeah you can feel the foam going in and it stings a little too and usually there is some discharge did you shake the can before

[Bunnygirl1 in reply to Brian1977]

Thanks for letting me know Brian! Yes, I did shake the can.

I removed the lock thingy before first use, gave it a good shake, then turned the semi-circle under the dome to line up with the applicator, put it in as best I could, depressed the dome for 5 secs, then left it for 30 secs before slowly withdrawing.

I thought surely I should have felt something - so thanks for letting me know, I've obviously done something wrong, just not sure what!

[Brian1977 in reply to Bunnygirl1]

It's horrible stuff to use I hated it and it never helped I've been in a bad flare since last June started amgevita never worked then started inflixmab in December bit nothing so far. I hope you get some results soon 🤞🤞🤞

[Bunnygirl1]

Oh that's terrible Brian, sorry you have had no luck with your meds.

I hope we both find something that works!

[Barnsie]

you had the can upside down didn't you?

[Bunnygirl1]

yes, thanks Barnsie, I did. Maybe I didn’t press on the dome hard enough? Dunno. Gonna try again tonight 🤞 At least now I know I should feel the foam going in 🤪

[SetteeSofa]

Hi Bunnygirl1.

I was prescribed this foam enema when I was first diagnosed with UC back in November 2011. I found it very difficult to use. Yes, you certainly know it's inside you... I would agree that maybe you didn't press the dome firmly enough to release the foam. I gave up with it after a few days as, try though I might, I simply couldn't keep the foam inside myself, and it would bubble out and make a nasty mess. I ended up taking 3 x Octasa 800 mg tablets daily instead, which has worked fine for me ever since.

I am so very sorry to hear that your UC has spread; that must have come as a very unwelcome surprise; I do hope you can get it under control quickly. When I do get a flare-up, and the mesalazine isn't sufficient to deal with it, my gastro recommends I take a course of 'Clipper' corticosteroid (5mg daily) and to date this has always helped to get the flare-up under control quickly.

Do take care of yourself, and my very best wishes for a speedy return to normality.

SetteeSofa

[Bunnygirl1]

Thanks SetteeSofa, goodness gracious, now I am very put off to try it again tonight!!!

Gastro also gave me a script for Pentasa liquid enema - she left it up to me to decide which to use.

I thought the foam would not be so messy as liquid.

Anyone have opinions about which is messier - foam or liquid enema?

20 years ago I used to use Colifoam (hydrocortisone foam enema) when I had a flare up - it was easy and no mess.

I now have high eye pressure and cataracts so gastro wants me to try local mesalazine before going to steroid enemas.

Thanks very much for your kind and comforting words!

[SetteeSofa in reply to Bunnygirl1]

Oh Bunnygirl 1!! I am most dreadfully sorry if I gave you any cause for concern, that was certainly not my intention - quite the opposite in fact.

I hope that you will have no trouble at all with using the Salofalk; at least you have successfully used a foam in the past, so do please keep that positive experience in mind, and forget my less-than-helpful comment. Again, my profound apologies.

Good luck and my sincere good wishes,

Sincerely

SetteeSofa

[Bunnygirl1 in reply to SetteeSofa]

No worries SetteeSofa!! I appreciate your wanting to help very much! Everyone on here is so lovely and caring.

[VTRF]

I can feel it, but it's not obvious, just a kind of tingle as you squeeze it!

[Bunnygirl1 in reply to VTRF]

Thanks so much VTRF, good to know!

[pen5377]

I tried the liquid a few times when I was first diagnosed 15 years ago and gave up after 4-5 nights as I found it very difficult to administer. I got on much better with the foam, no stinging for me, just a curious sensation of feeling I needed a bm. I did leak a little at night, so needed a bit of protection, but otherwise fine. Good luck and I hope you feel better soon.

[Bunnygirl1 in reply to pen5377]

Thank you pen5377 - glad to hear your experience! Appreciate your kind thoughts too.

[Bunnygirl1]

Update: tried to use the foam again last night - I think the can may possibly be faulty.

I attached the applicator (heard a very faint pop sound) and before I could even turn the under-dome to the half circle thingy, and before shaking the can, a tiny bit of the contents were coming out of the applicator.

So I freaked out (thinking it might go everywhere and ruin my white bathroom 😅). I put them in zip lock bags and then in another plastic bin bag, then in a bucket in case the whole can came pouring out overnight. (it didn't 😀)

Oh dear. Maybe it is just not meant to be.

Phoned the pharmacy and they expect the rest of the cans (the script was for 4 cans) to be delivered and ready this evening. It's a 45 min drive each way, don't think I am up to that atm, so will try and work something out to get them.

I really appreciate how kind you all are in giving me your experiences, well wishes and time!

[Steve2357]

Just one comment about your surprise about the spread of your Ulcerative Colitis. The only difference between it and Crohn's Disease is in which part of bowel it starts. I have had Crohn's for over 40 years and was told once you have either it can attack any part of your digestive tract, from mouth ulcers to inflammation up the anus. All of which I have had. Thankfully in the last few years it has remain in the small bowel. I have had 3 operation to remove narrowing bowel, less than a foot each time.

[Bunnygirl1]

Oh dear, you poor thing! That sounds awful and painful! My original gastro told me 30 years ago that he did not think mine would progress, he thought it might even "burn itself out" as he put it. And it did not progress in all these years, until blasted COVID did a number on my colon 😡

I hope you are feeling ok atm, good that your Crohn's is contained to one area.