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Salofalk foam

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Ulcerative Colitis
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Posted 11/14/2023 2:29 AM (GMT -5)
Hey,

Since I last posted I had been continuing on the pentas tablets and beds of all steroid foam.

A few weeks ago on these meds I started to notice a few minor symptoms creeping back. bM increased to 3-4 a day, leaking mucus but no blood at all. I also noticed my tablets were coming out whole in my stool

The ibd nurse suggested changing tablets and starting a mesalamine enema instead of the steroids as these aren’t long term use anyway

I asked for a foam rather than liquid as from past experience I retain these easier.

Never had any problems with the steroid foam - retained fine, no symptoms and no leakage

I started on the salofalk foam a couple of days ago and I have never experienced anything like it. The burning when I insert it, the feeling of needed to evacuate it straight away (dose is ament to be 2 squirts but I’ve only managed to do 1) the uncomfortable feeling that I need to go. Then in the morning all the excess coming out (as mentioned didn’t have this with the Budenofalk)

Is this normal to experience? To be honest it’s made me feel so uncomfortable I’m not sure I can continue.

Since starti bc it I’ve also had a heavy feeling in my rectum throughout the day which I wasn’t having before.

Anyone else experienced this? Do I just need to persevere and hope it improves?
Posted 11/14/2023 8:42 PM (GMT -5)
Hi, Jess-- I had thought of you just recently and hoped you were continuing to feel better since you hadn't posted for a while. It does sound like you're experiencing new problems, though you had posted to us in the past that you suspected some mesalamine/mesalazine meds actually harmed you, but your consultant wouldn't listen to that. You've now mentioned a start on b/c-- could that be causing changes to your digestive system? (I mean in addition to any sensitivity you may already have to some UC meds.) Can the doctor prescribing the b/c give you any guidance on possible digestive side effects, or could the IBD nurse help with that issue? In the past it seemed like the Octasa tablets were relieving your UC inflammation, not coming out whole. The mesalamine foam is not distributed in U.S. nor in Canada, but you may be able to get advice on it from other UKers or Australia/NZ users. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
Posted 11/15/2023 2:50 AM (GMT -5)
When I first went on salofalk enemas, my doctor mentioned that there is also a foam but he doesn't advise it because it stings....
Posted 11/15/2023 1:14 PM (GMT -5)
RE Poopydoop's comment: my gastroenterologist told me several yrs ago that the mesalamine foam hasn't been distributed here in the U.S. because it has a different applicator than the steroid foam, which would require clinical trials here for govt approval. So it could be the applicator causing your discomfort or maybe that your mucosa is still sensitive from past hemmie surgery. You had trouble from the mesalamine/mesalazine suppositories a while back, right? / Old Hat (40+ years with left-sided UC; in remission taking Colazal)
Posted 11/16/2023 4:55 PM (GMT -5)
Old hat - yes the octasa tablets seemed to be helping before although I was taking these along with the steroid foam so hard to judge whether they were helping or it was just the foam.
Unfortunately as they started coming out whole the ibd nurse said my body isn’t absorbing them

I have been moved onto Pentasa oral meds - these are double the size and very hard to swallow but will see how we go

In regards to the mesalamine - I have had both the suppositries and enemas before and didn’t agree with both of these so maybe it is just the product itself that doesn’t agree with me. I’ve tried the foam for 5 nights now and although I like to give everything a chance, I’m finding it impossible. The dose is also ament to be 2 sprays and I am only managing 1 as even that feels hard to retain

I have contacted the hospital - unfortunately they only give you an email address so I just have to wait for a call.

Generally I hadn’t been feeling too bad in myself before the change in meds. I had a very mild flare the last couple of months but I put thymus down to stress as my husband lost his job (when I say mild the main thing was mucus and a few more BM)
Posted 11/17/2023 10:14 AM (GMT -5)
I just had my results back for some blood tests and stool tests I had done last week and it has shown no inflammation
Posted 11/17/2023 2:54 PM (GMT -5)
For sure that could stress you out if your husband lost his job and you have 3 young children. It's good if your blood & stool tests came back negative for inflammation. Then the issue of what med you should take to stay in UC/UP remission comes back into play. That seems to be where your 1st consultant messed you up, saying it was ok to quit all meds. Hopefully the IBD nurse has an understanding of available remission meds and their dosing, and can help you to find a reliable prescription. There have been members here on the forum who used the 10% steroid foam occasionally to stay in remission, but not indefinitely. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
Posted 11/17/2023 7:48 PM (GMT -5)
A tip for retaining enemas is to insert half the dose, try to hold it but if it comes out after a few minutes then your bowel is empty, so it's easier to retain the second half. Also, even if you can only hold it for 5 minutes it will still be doing something. As the inflammation decreases, it becomes easier to retain them for longer.
Posted 11/21/2023 1:59 AM (GMT -5)
So I spoke with the ibd nurse yesterday. She has said that she will switch me to the Pentasa granules rather than the tablets (think this is 2g a day)
She has advised me to stop taking the foam if it’s not agreeing with me. She feels that the granules should hopefully be enough to sray in remission however, has advised that if I get any symptoms I can do a course of the salofalk foam then review rectal meds… not sure how I feel about it as I mentioned to her I had come off rectal meds before and the symptoms had reappeared within a few weeks.. but I’ll see how it goes
Posted 11/21/2023 1:29 PM (GMT -5)
You could try another brand of mesalamine enemas...Pentasa.
When you were using the salofalk enema previously, was it the 4g?

q
Posted 11/22/2023 5:02 PM (GMT -5)
I can’t remember what the last dose was as it’s been a while.

I’m open to trying a different one - I didn’t realise Pentasa done an enema.
I’m unsure how clued up some of these nurses are with the different medications etc as sometime I feel like im the one making the suggestions and asking the questions. I guess it’s all just trial and error.
Posted 11/22/2023 10:07 PM (GMT -5)
Jess, at least the nurses are listening to you and offering some help, compared to the negligent consultant who kept saying you could quit all meds. In many of our cases, though, adjusting Rx meds IS "trial-and-error", until each of us finds one better for us or a combination better in terms of our tolerance or use without annoying side effects. Probably would be good for you to keep a notebook listing the scripts you try with the recommended dosage & dates of use + any side effects-- if your health service doesn't give you access to any personal online medication history. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
Posted 11/23/2023 9:26 AM (GMT -5)
Jess...call your pharmacy and request a printout list of meds from that GI. Pentasa comes in 1g, 2g, and 4g dosage. Salofalk comes in 2g and 4g. As OH mentioned, its trial and error process. Plus, being proactive in treatment with someone who is interested in your are helps a lot.

Keep us updated,
q
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