Almost a year on Enemas..

I remember someone saying a lady was on them a year and a half nightly if I'm not badly mistaken. I am the same way as you. I seemed to have a small mini flare back in August of '10 when I went to every third night (and I only did that once a week, I still did them every other night for the other four nights of the week.) What I have started doing now, is doing about 3/4 of the bottle every other night and that seems to be working out well at the moment. I tend to see a lot of the enema on my stool in the morning, so I don't think it's absorbed nearly as well as the oral mesalamines anyway.

I'm coming up on a year of nightly use in about 2 months. Everytime I try to taper, symptoms start to return..so what else is a girl to do? I hope it will end up being ok.
B

I misunderstand your confusion about it Krissy..it's not a punishment to be on them considering you have UC and can't go without the meds.   There's always steroid enemas, prednisone, immunosuppressants and biologics. 

Some tapered to maintenance seeing the value of the continued usage. Others go off them completely....only to restart during a flare....some have them working eventually, flares totally out of control and further meds needed, others can pick up and have them work perfectly and able to taper off once again.

You have choices...what would be your best case scenario?

Now you're at every third night? That's a good maintenance place to be....

Regarding the Salofalk...what's the dosage of each pill?....
If you're wanting to drop to 6, you should do it by one pill a month. That should be long enough to give you a good idea of tolerance of a lower dosage.

What exactly are the symptoms you're having when you tapered too much before?

Are you on the 2g dosage of enemas or 4g?

q

Yes, a valuable point hateuc....less over long term is best. My doc encouraged me to continue tapering and started me on low 5ASA and increased rather than high and decreased. My tapering just continued to at least once a week.


Fruitgirl's research and experience just helped confirm that I do best with at least twice a week meds. I'll probably taper to every 4th night next month....or twice a week...sundays and thursdays.

With me, there's always some emotional crisis...while I can cope fairly well, my butt pays the price. Keeping it quiet is one thing I at least don't have to focus on. Just cross off the meds on my schedule calendar as I use them.


q

Yes, I'm a little confused, too.
My experience and understanding of the 5-ASAs is that sometimes, over the years, it takes an increasing amount to control the disease. So, while being on less meds is a nice thing. personally, I wouldn't get hung up on the concept of taking a few pills less a day. (Yeah, I know, look at how many I take, what else would I say?lol)

I tried to taper down a few Asacol this past fall and saw symptoms... so I put the dose back up to what it had been at and I've done much better.

My son takes 8 Asacol, and in a flare last spring he went to 9.... when the flare was done he went back to 8 with no issue. So.... I guess some can tinker with the dosage better than others.

The long-term side effects of Rowasa include decreased cancer risk......

I got the impression that my Dr. wanted me to stay on the same oral amt of 5asa but wanted to try and taper the enemas. I am very glad to hear what some of you said, b/c as I mentioned I can't seem to taper to anything less that nightly...at least at this point. I would love to have the option to stay on them nightly forever if needed. This is a good thread!
B

Thanks Krissy. I am so so sorry about the miscarriage....went through fertility issues myself so I understand. Hope everything works out great and the enemas will keep any flare at bay. I have learned so much with this forum.
B

The point of trying to taper to find a maintenance dosage is that when one flares one can go up to a more theraputic dosage.

Everyone is different regarding dosages.

As well, high dosages can cause some symptoms such as diarrhea, bleeding, gas, discomfort, bloating, etc.....where a slightly lower dosage can eliminate that.

Using a dosage that's effective is the point. Rectal meds to treat flares and tapered to maintenance makes sense since UC flares would start rectally and climb upward. If one's symptoms include higher than sigmoid, then a slightly higher dosage of the oral meds can be effective for treatment..in conjunction to the oral 5ASA..the flare can hopefully be quickly dealt with before its intensity increases.

Regarding the high dosage/toxic level of lower dosage for cancer..can't comment becasue of one study on rats. Their colitis would be induced as well..and their systems are much quicker than humans, etc. Interesting, however.


Krissy's miscarriage has obviously sent her body into a huge transition of hormonal turmoil, which can definitely affect UC flaring. I don't think it's a bad thing to continue the enemas...but remember, they can also be used in a 2g dosage which might also be equally as effective, especially for maintenance.

Maybe my whole thought process is skewed, but I don't have pancolitis either. My UC, however, has never been as bad as my original diagnosis after the third year once my med regimen got figured out and I used them effectively.

q