Do Salofalk enemas really work?!

Hey guys I'm new to this forum and have been recently prescribed Salofalk enemas. I've been using them off and on for about three weeks but they don't really seem to be working? I'm meant to be using them twice a day and sometimes they even make symptoms worse such as incontinence, there is slightly less bleeding but I need to use the bathroom around 8 times a day with them. Should I continue using them? Is this normal? I don't know what to do I have a life to lead and a lot of important stuff to do but I am missing out on a lot of it because medication doesn't seem to be working. I guess it's an improvement because before my diagnosis I had to go to the bathroom literally 30 times a day but the only thing that really has seemed to work is prednisone and that is no true solution. thanks in advance, mike
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2 mezavant in the morning, 2 at night (4.8grams a day)
2 salofalk enemas a day
1 Ferro-grad c a day for iron defiency

They worked very well for me (whereas oral RX did not) but you'll have to decide whether they help you or not. It sounds like your # of BM's is greatly reduced but you think pred. might be the reason. But if you're off pred. and your symptoms are better you need to keep doing what you're doing.

I wouldn't blame enemas for incontinence at this point because you might be even worse without them.
3 weeks is not a long time to see definitive healing. Give them a bit longer because the alternative is not any better, moving up the ladder in oral RX. Bleeding means that your lower region is very inflamed and oral RX just doesn't reach that area effectively.

What is your official diagnosis (area of inflammation=left sided or what?).

Another possibility is to use steroid enemas for a short time. Steroid enema is better than oral pred. because the pred is just on the inflamed area and not going throughout your body causing undesirable side effects. After that short use you might be able to switch over to using fewer Salofalk enemas daily, maybe 1 at night and during the day use a suppository.

Good luck.

imagardener2 said...
They worked very well for me (whereas oral RX did not) but you'll have to decide whether they help you or not. It sounds like your # of BM's is greatly reduced but you think pred. might be the reason. But if you're off pred. and your symptoms are better you need to keep doing what you're doing.

I wouldn't blame enemas for incontinence at this point because you might be even worse without them.
3 weeks is not a long time to see definitive healing. Give them a bit longer because the alternative is not any better, moving up the ladder in oral RX. Bleeding means that your lower region is very inflamed and oral RX just doesn't reach that area effectively.

What is your official diagnosis (area of inflammation=left sided or what?).

Another possibility is to use steroid enemas for a short time. Steroid enema is better than oral pred. because the pred is just on the inflamed area and not going throughout your body causing undesirable side effects. After that short use you might be able to switch over to using fewer Salofalk enemas daily, maybe 1 at night and during the day use a suppository.

Good luck.[/quote

I have left sided colitis, and haven't been on oral prednisone for about 2 months. When I was on prednisone I was having 1-2 bms a day

How's the ferrograd C working for your iron deficiency?

DBwithUC said...
they work for me when I use them regular. I have a bad habbit of slacking off when I feel better.

I don't now if you can make a judgement if you use them "onn and off". If you don;t want to fuss with them, then step up to an immune suppressant.

It's not really about slacking off, i've just read somewhere that for some people they can actually make uc worse. So sometimes I do them but sometimes I get a bit iffy on the idea. I think I should just tough it out for a month or so and see what happens. What exactly are immunosurpressents? are they known to be effective? I have a meeting with my specialist in 3 weeks or so, so I'd like to be prepared for discussion on my options

quincy said...
I've used them for over 26 years (as per my signature). Do they work? hell yes.

What's the iffy on the idea part about?

q

im glad to hear that
I have heard that for some people they make symptoms worse and as i have a lot of important school work to stay on top of that isn't really an option
but considering you've been using them for 9 years more then ive even been alive and they work i think it would probably be wise for me to persevere with them and hope for the best

I have used 2 mesalasine enemas in the past, Asacol in about 2010, and Salofalk very recently.

Both times I noticed no improvement in my symptoms, and in the case of the Salofalk, I did wonder if it was making me worse.

But I will admit that I don't like taking enemas, and get stressed about it. Stress is my biggest trigger for UC. Also by the time I take enemas, I am already ill, so it could be working a bit, just not managing to control it completely, it's hard to tell.

Personally if I was you, I would continue taking them, as prescribed, and talk to your doctor about it. They might have some more ideas for you and you could discuss further treatment options.

I've just noticed in your signature that you are taking Mezavant. I tried Mezavant as a maintenance drug in about 2009, when I was in remission. It made me very ill, I was going to the toilet a lot, and I constantly felt as if I needed the toilet even when I had just been. I went back onto Asacol and was much better. Maybe the Mezavant isn't right for you either?

No, sorry, I meant 2 types of mesalasine - you know, like Asacol for a couple of months, then Salofalk for a couple of months. Both were every night, I also tried Salofalk twice a day for a few weeks.

I tried a steroid enema for a couple of months aswell, I think it was Cortifoam. I'm not sure whether that one helped either, sorry.

Yep lol! I do hate taking them but I just grumble about it and do it anyway.

Dizzy2002 said...
I have used 2 mesalasine enemas in the past, Asacol in about 2010, and Salofalk very recently.

Both times I noticed no improvement in my symptoms, and in the case of the Salofalk, I did wonder if it was making me worse.

But I will admit that I don't like taking enemas, and get stressed about it. Stress is my biggest trigger for UC. Also by the time I take enemas, I am already ill, so it could be working a bit, just not managing to control it completely, it's hard to tell.

Personally if I was you, I would continue taking them, as prescribed, and talk to your doctor about it. They might have some more ideas for you and you could discuss further treatment options.

I've just noticed in your signature that you are taking Mezavant. I tried Mezavant as a maintenance drug in about 2009, when I was in remission. It made me very ill, I was going to the toilet a lot, and I constantly felt as if I needed the toilet even when I had just been. I went back onto Asacol and was much better. Maybe the Mezavant isn't right for you either?

Before I started taking Mezavant I was going to the bathroom 25-30 times a day, now on a very bad day I go ten, recently I've been going 7 or 8 and most usually 4 or 5

Glad you had a better day, it's a good sign. Just know uc bm counts are anything but consistent on a day-to-day basis, especially when healing. I say this because it's super discouraging when the following day jumps back up to 8 bms, it can happen. Try to look week-to-week for changes. Good luck,

Just note that as you heal...you will go through a phase of constipation, smaller stool, etc.
Continue with the enemas nightly through that phase until things even out.

You will have to taper the enemas, and it's best to taper slowly to a maintenance dosage of twice a week or somewhere in that realm. I used to taper to once a week, but every 3 nights is my optimum at this point in my life.

q

Currently I'm on around 4-5 bms a day, sometimes I'll have 3. I was on 8 before salofalk. Sometimes I get the feeling of incontinence during and after an enema as well as rectal pain and cramping and I'll have to use the bathroom a few times even if there's nothing there due to the feeling of fullness despite being empty. Still have quite a bit of blood but usually it's only once a day all at once . I have noticed slight constipation as heather mentioned