Oral 5-ASA vs. rectal meds

the only difference i noticed between the oral and rectal 5 asa's was that the oral gave me massive heartburn. my chest was always hurting. my bleeding was still the same whether i took oral or rectal though.

sconnie,

I couldn't tolerate the oral 5asa, but could tolerate the mesalamine  suppositories and enemas.

Hope you find a solution that works for you.

Thanks for your responses all!

InSoFla its encouraging to hear that you were able to use rectals despite being unable to tolerate oral 5ASAs. I see from your sig that they didn't work for you but as far as I know you're still doing great on transdermal LDN which is fantastic! Another treatment I will definitely look into!

q you bring up a lot of great questions - many I hadn't thought of!

After diagnosis I started by taking 9 asacol a day and for a while I was feeling well but after about 2 months I started having fevers and bad D. We did blood and stool tests to rule out infection like c.diff and did a flex sig to confirm a UC flare. At that point we started suspecting I may have been having an adverse rxn to the asacol so I stopped for a while and started on some pred. In about a month when I was feeling stable again and my liver enzymes had gone back to normal (they had been elevated at the time of the fevers, etc) we started the asacol back up and later that day the diarrhea was back and that pretty much confirmed for my GI and I that I couldn't do asacol.

After allowing myself to stabilize again with the help of pred we then tried sulfasalazine and honestly I don't remember the dosage because I only took it once (I think it was 3 pills) and before it was time for my next dose I was back to having terrible, painful, bloody D - worse than it had ever been just as a result of the UC.

Finally I tried colazal and again the dosage escapes me because I was on it less than a day before we finally decided that 5ASA's were not going to work for me.

SO there were times when I was and was not using prednisone while taking 5ASA and I did not start taking fish oil until after this whole debacle so I doubt either or those is the culprit. I've been keeping track of my diet for about 2 months now and I have yet to find a direct correlation between worsening symptoms and what I ate that day so I can't attribute the worsening symptoms to a dietary cause either.

The short period of time between starting the new meds and worsening symptoms leaves me with little doubt that the 5ASA is to blame. However I was very interested to learn that suppositories are less potent than enemas so I will definitely keep that in mind if I find enemas are too strong.

Lastly, I may look into steroid enemas since I have had so much success with oral prednisone. It keeps my UC in check pretty efficiently and I don't have too many side effects from it... just some heart burn and some mild moon face and weight gain. Can steroid enemas be used long term or do they carry the same long term risks as oral steroids?

Again, thanks so much for your input!

sconnie said...


[clip]

Lastly, I may look into steroid enemas since I have had so much success with oral prednisone. It keeps my UC in check pretty efficiently and I don't have too many side effects from it... just some heart burn and some mild moon face and weight gain. Can steroid enemas be used long term or do they carry the same long term risks as oral steroids?

I've never had much benefits from either suppositories or enemas when my UC started to ravage my body, because in Pancolitis the flare usually spreads fast throughout the colon where they do not reach. That said, I'd say that steroid enemas are much more 'safe' than oral prednisone.

Your taper is in a critical stage at 10 mg. It's usually very hard to pinpoint what exactly is the culprit for any side effect when flaring, thus adding anything to the med regimen is not always the best approach.

The most important matter now is not to lose focus. You're on meds and need to stay the course. If this does not work, your GI doc will develope another strategy that will. You will get better.

Hang tough

PS I did not notice any probiotics in your armory?

I think one of the trickiest things about this disease, at least in my own mind, is that part of me is tempted to throw every possible treatment at my colon until something sticks but I know that if I do try too many things at once it'll be hard to really determine what is working and what I'm just wasting money on - because let's be real, a lot of the meds, supplements, probiotics, etc that we all try are pretty darn expensive!

After I gave up on the oral 5ASA's and went back on the prednisone regimen to get my flare under control I debated whether to add fish oil or probiotics to see if either would help my lingering symptoms (mostly just gas & bloating as the pred pretty much controls the rest for me). I decided to run with the fish oil instead of the probiotics initially simply because the fish oil is so much less expensive especially if you want a good probiotic. The fish oil doesn't really seem to have helped me any but it didn't seem to hurt any either so I'm sticking with it at least until my stock runs out.

Probiotics are another topic I plan to discuss with my GI next week. Sometimes it seems like there is so much out there to try it is really just overwhelming. I am 1month+ into a low-dairy, low-gluten diet which really seems to have helped with the gas. I have also recently added psyllium fiber and so far I'm liking the results I've seen from it - working my way up to larger and more frequent doses.

Again, the prednisone keeps most of my symptoms under control but now that I'm getting to such low numbers in my taper I want to have a game plan ready in case symptoms start to return if the azathioprine isn't working or hasn't yet reached its point of effectiveness. I'm fairly certain that I don't want that plan to include biologics so I think I may give the rectal meds a go despite the unfortunate fact that they will not reach all of my areas of inflammation as I do indeed have pancolitis and possibly throw a potent probiotic in there for good measure!

Its always nice to here other people's experiences be they positive ones or otherwise so thanks again for the responses and the sound advice!

I appreciate the subtle distinction you are trying to convey, q, and agree that it would be a shame for someone to forego use of rectal meds simply because they don't reach the highest of inflammation - especially given that oral meds often do not reach the lower areas of inflammation.

However I do believe that my case is different in that, since I am intolerant of oral mesalamines, I need to be realistic that rectal meds alone will almost certainly not be enough to control my UC since some areas of inflammation will not be receiving any treatment. Perhaps the rectal meds would be enough to put me in remission in that I would have no noticeable symptoms but inflammation would still exist and left untreated I would worry about the increased risk of colon cancer. Perhaps the probiotics will take care of the untreated areas! A rectal meds - probiotics combo would certainly be preferable to pred!

But yes, you are absolutely right that it would be better to devote more attention to the benefits of rectal meds than to dwell unnecessarily on their limitations.