Salofalk Enemas

Hello hello.

I was just wondering about the Salofalk enemas. Im on them nightly at the moment and they have returned me to being almost completely normal (also on 9 of the tablets as well).

I just wondered if someone could tell me to what distance the enemas would reach (and have an effect)?

Thanks

m-dot

Who knows how high...as long as they cover the sigmoid, that's perfect. The pills cover above that.

Awesome you're improving...how long on them?

Remember to taper them...

q

How long have you been on the enemas? Sometimes the treatment can take longer then normal, depending on the extent of inflammation. How long have you been "normal" until you had this blood? You don't necessarily have to go on immune suppressing meds just yet. Have you ever used steroid enemas or foam yet? If you get to a point where none of these rectal meds or oral meds are working then it might be time for more heavier drugs.

nightly and then off in two weeks...you've set yourself up to reflare.

You haven't answered how long you were on them nightly and how fast you tapered. Off isn't necessarily a good thing....and tapering off should take a few months at the very least.

quincy

Oh, you're welcome!

Just to be clear...when did you get off the pred?

Stay on the nightly enemas again until you have no bleeding.

How long were you on the pred?

What other symptoms are you having..... How many bms daily? what consistency?

I think you should truly try and stick with the 5ASA meds until they work for you.....since you are having improvement, I personally know they take longer, but can work.

When was your last c-scope?

Was the blood on the toilet paper or along the stool or dripping in the toilet?

Were you given the pred while only on sulfasalazine, but NEVER on enemas till the salofalk recently?

Lots of question, I know....

Ultimately, one's expectations is what can rule the meds one's given. Some cannot take 5ASA meds, so there are less options...which are steroid topicals or immunosuppressants.

There are side effects with all meds....the 5ASA meds have the least side effects for long-term....unless one cannot take them at all.

When are you seeing the new GI?

q

Hi....what do you mean you weren't taking the enemas correctly while on pred?

Yes, it's a good thing the enemas are working for you. It's awesome you respond to 5ASA meds!!! That's a huge thing, for some cannot take them at all.

Dependency.....well, I've been using them for 21 years so far. I increase during a flare, decrease to maintenance. Yes, I'm a med-lifer...that's possibly dependency possibly in others' eyes....I'll take it forever.

I hope to never take pred or the big gun meds. Never been on them.

I don't think you need to be on 9 Salofalk tabs once you're out of the flare and well on maintenance with the tapered enemas....you should consider eventually to decrease them to 5 or 6 at the least, considering your UC is limited and increase if you need. At least you have the option to increase. But, as you said, it was diagnosed with a sig-scope...

You should have a c-scope soon, however, to determine a new baseline for where it is now...also for precancer, etc.

Seems you're doing really well at this point.

The dark or black mucousy stuff is probably mucus with some stool.....but it could also be mucus , stool and the enema. I've had that when flaring.

REgarding tapering....if seen any blood mixed in with stool, go back to nightly for at least another week. Do the every second night for at least 2 weeks to a month. Again...if all is good, then go every three nights.

It's been "written"...lol...that twice a week enemas is good for maintenance. I have gone as long as every 4 nights and once a week. But life happens and I always have a crisis happening emotionally and end up flaring while on maintenance meds...sigh.

Some do taper off them....I tried the first few years, but again.....lots of stuff happening and eventually stayed on them, usually to once a week.

Hope this makes sense..
quincy

Thanks Quincy & Fruitgirl.

Have managed to get in to see a great GI who is a professor studying/leading an IBD research team here is Australia. Going to see him in a a month so I will try to stretch the use of the meds till then (the Salofalk enemas are quite hard to get hold of here - not a med that is prescribed easily!)

let u know what happens.

Till then take care.

m-dot

Thanks Quincy

Unfortunately in Australia all of the mesal enemas require a special govt health board approval to be prescribed every time (for a 28 day supply).

Have been taking them religiously for the last month and had the most normal bm day (total remission) yesterday. Of course I try to skip one last night and bam - back to blood this morning! (so frustrating). Had 3 bms which were mixed (only the first one had blood).

Im not sure what do do as I have 17 of them left and there are 25 days until I see this new GI doctor. I cant get in to see the old GI (not that I really want to anyway). I was thinking of trying to use a full dose one day, then on the two following days use half the enema. That way things will stretch out.

Is that the right thing to do? (using half doses to stretch meds until a new script)

Also I think I may have just figured out what might be aggravating it. I may have mentioned earlier that I still train to compete as a cyclist. I rode three hours yesterday morning and wonder if the pressure on my backside might not be helping? Any thoughts?

Any extreme exertion can increase the inflammation reaction with autoimmune disease.

I think you should do a full enema for at least another few days and then do what you suggested. Even if you're not perfect, you'll still be covered until you see the new GI.

Make sure you don't miss any of the oral tabs.

What probiotic are you taking?

Are you taking any fibre supplements?

When you train, what do you eat usually before you go out?

You're showing obvious improvement on the meds you're using...you just don't have enough to continue at this point with the full coverage, but you do have an option. HOpefully the new doc won't say you don't need them and put you on the big guns....it would be great if you could give them a fair chance.

My opinion....of course, biased based on experience

quincy

Yes, I meant the immunosuppressants and biologics...even prednisone.

I don't use the steroid enemas, but I'd suggest to use them maybe as a supplement rather than only...but base it on your experience. There are more side effects with the steroid enemas to use long-term. Others have used them for long term...not all have side effects.

5ASA meds, as you're on, are still the lease side effects for long term.


I don't know much about exercise, but I have read and been told about "carb loading" from friends who to intense conditioning...considering your hardcore exercising, maybe having more fuel to burn rather than your body stores might be of help regarding impact on your immune system. There have been others who complained about the bike-riding/flare connection.

I've not tried bulk brands of psyllium husk, I did use the Metamucil smooth for a while, have since switched to psyllium capsules (either Metamucil or store generic).

Maybe your new GI will take a peek to see what's happening and have you go for a c-scope.

Hope all continues on the positive healing for you.

q