Do any of you use enemas ONLY?

My GI and I had a talk last time I was there and he recommended that I up my enemas to every second night (unless flaring-then every night) and stop taking the oral asacol.

I was a little afraid to try this and asked him if stopping the oral meds would cause the UC to spread upwards. He told me that if was going to spread, it would do so whether I was on oral meds or not.

He didn't see any benefit in using the oral meds for low in colon UC because he said it has to go through many, many feet of colon before it even reaches the inflamed parts. He also pointed out that the reason I had to go for bloodwork every 4 months was to make sure the oral meds weren't affecting my kidneys, liver etc.

What do your docs say about asacol perhaps preventing the spread of UC?

Hi quincy, I haven't been taking the asacol for quite a few months now.

I prefer not taking the asacol if I don't have to, but was concerned, so that's why I asked him about it spreading. He assured me that it wouldn't be the asacol that stopped it from spreading. He said if it's going to spread, it'll do it no matter what.

I'm really torn on this. I think there are different schools of thought on whether the oral meds prevent spreading or not.

Yeah, gosh, I don't know. I was first diagnosed with UP and put on azulphidine, 6 pills a day, as I remember? (It's been a long time) and I took them religiously but it spread anyway.

When I was first experiencing symptoms, I was able to manage them with just suppositories. Those were the days... I stopped using them and ended up with a much worse flare. Now I have to use Asacol and suppositories. I hope this continues to work for me for the long term. I wouldn't want to stop taking Asacol, I flare if I eat a piece of popcorn.

     I've been faithfully taking Colazal for nine years now and my ulcerations are still confined to the rectal area...soooo...maybe the Colazal helps keep it localized.  Either that or the 6MP.  Sometimes I wonder if any of these drugs do anything.

notsosicklygirl, Have you ever tried the enemas along with suppositories. I use both when I'm flaring. The suppositories are good for the very end part of the colon and if you pull the enema out while squeezing, you can get that into the rectum too.

I've also even inserted a 1000 IU vitamin e capsule right into the rectum like a suppository. The pharmacist said that would be fine to do because the gel coating would dissolve.

I've also been adding 8000 IUs of vitamin e into my enemas every night. My flare didn't start getting better until I started doing that. MY GI said it would be fine to try it.

I think the vitamin e thing is something totally overlooked by the medical community. I wish someone would make a vitamin e enema for us. No $$ in it, so it's likely never going to happen.

They have done hospital studies with it in Tehran though with positive results.

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Hi Christine, I know what you mean about some of these medications. I'm pleased with the results I get from the 5-ASA (Salofalk) enemas though. I just can't go less than every second or third night though and things start to slide.

When I was taking asacol and enemas, as soon as I would taper the enemas down the symptoms would come back. That's when my GI suggested I try just the enemas, but do them more often. That's when I went into remission. So obviously the enemas and not the asacol is what works for me.

I will consider going back on the asacol because of the other benefits that quincy sited, but not because I think it works for my flares. I think it's pretty useless in that regard when you have low in the colon UC--too far to travel.

Christine - I love your last sentence as I feel that way right now.  After tapering off prednisone - going off 6 MP - using cortifoam and anusol until my rectal area as swollen, red and sore - and now using NOTHING - my UC feels great at least for a week.  I take probiotics, calcium/wD, Tylenol for my arthritis (aches and pains left from prednsione), adding a little fiber, and 1/2 Imodium every morning with my meds.  I see the specialist October 8.  I feel I should be on something - feel that this will come back FAST.  I have had no diarrhea, no bleeding - just some nausea and fatigue (again from stopping prednisone I think).  Today I felt so human - hope it lasts!!

ElaineNY

Hi Sara, He told me that because, though rare, asacol can cause liver, kidney problems he wanted to keep an eye on things. He said the same wasn't true of the rectal meds though.

I wonder if my GI is just extra cautious about that. It would be interesting to know if others docs have them do the blood work and how often.

frombc....doesn't make sense regarding the difference of rectal and oral 5ASA meds...they are both topical (meaning they're not systemically metabolised initially like prednisone).

Salicylates can affect the liver.....but the 5ASA meds of Asacol and Salofalk affect the liver through a second pass via the bloodstream after some being absorbed through the colon.

The oral and rectal meds are topical....the oral meds aren't distributed systemically vial the stomach/liver...

quincy

That makes sense quincy. I never thought of the asacol as being topical because you take it orally. That hard coating prevents it from releasing until it reaches the colon...so topical it is.

I wonder why my GI thinks I don't need the blood work done when only on the enemas then? I'm going to point it out to him next time.

Before I read this, I had actually started taking the asacol again yesterday..had 2 doses. I'm going to take 3 twice a day.

Yes, I believe sensitive but not allergic!  I have taken pepto for many years for IBS. 

By the way, the rectal meds that make me swell and red, etc. are steroid - not mesalamines.  Tonight I have a little left-sided pain - no doubt I am not in remission.  Who knows what I will do next!

ElaineNY