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Ulcerative Colitis
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Posted 8/28/2014 3:50 AM (GMT 0)
Question: When you are using rectal medicines - specifically enemas - do you ever have formed BMS?


Long story short: My son was on a Vancomycin taper (for c-diff) which went on for about four weeks. We saw improvements within one week of being on the vanco! But once he came off the vanco, we started seeing blood in the stool again. We did a retest for the c-diff but this time the results of the PCR and toxin tests came back negative (no cdiff). The doctor, thinking its the UC acting up, advised increasing the Pentasa dosage (up to 6 pills a day now) and re-starting the rectal therapy.

We tried Cortifoam first - since he finds it the least bothersome- but did not see any real improvements.
We are now using Rowasa. It seems to help decrease the amount of blood but he doesn't ever seem to have to really formed BMs while using the Rowasa. The mornings are the worst - he takes for ever to feel like he is done in the bathroom - and has " a lot of poop". The BMs are anywhere from a "thick liquid" to "soft fluffy" to semi formed. So just wondering should I ever expect to see a "normal" formed BM while using the Rowasa - or is that just something that doesn't happen with all this liquid medicine in ones system.

Thanks for any input.
Posted 8/28/2014 4:46 AM (GMT 0)
I've been taking Rowasa for almost 2 weeks now and would say my first BM in the morning isn't very well formed (mostly intertwined with the enema liquid) but the following ones in the day (even an hour or 2 later) are pretty well formed.

I've also been eating a good amount of sweet potatoes lately (mostly inspired by this thread https://www.healingwell.com/community/default.aspx?f=38&m=3145875) so the starch there may be helping. I would recommend introducing these a few days a week - they'll either have a positive effect like some of the posters in that thread reported, or they won't help the UC as much but are otherwise a very healthy (and I think delicious) thing to introduce into anyone's diet. Super easy to make and also to reheat.
Posted 8/28/2014 12:59 PM (GMT 0)
Anytime you have C-Diff it is tough to get rid of. Tests can come back with a false negative. I'm not 100% sure but it seems like I remember that if you test too soon after the antibiotics your tests are more likely to come back with a false negative. You may have to retest again soon to make sure the C-Diff hasn't come back, which happens a lot.
Posted 8/28/2014 1:11 PM (GMT 0)
I sometimes had slightly looser morning BMs after using enemas, but until I developed a suspected sensitivity to mesalamine enemas, never had problems with my poo being loose all day. Mesalamine enemas (except for sulfite free Rowasa) all contain sulfite presevative, so maybe he's sensitive to that. Steroid enemas do not have sulfite.
Posted 8/28/2014 2:42 PM (GMT 0)
Usually in the mornings the initial BM is never really formed because it's an expulsion of the enema liquid and stool all mixed together. After that the BM's are sort of formed but 'mushy'. How formed your BM's are really depends on how much inflammation you have in your colon.

For me I usually go to the bathroom twice in the am before leaving the house to do anything. That's a given.
Posted 8/28/2014 3:09 PM (GMT 0)
Yes, some do see formed bms with rowasa. Whether your son will see formed bms with rowasa who knows, it depends how severe his uc inflammation is and whether rowasa is enough to get it under control. Different patients with uc seem to respond differently to different uc medications. Try rowasa and see. If rowasa isn't able to get formed bms for your son, then you'll need stronger medications.
Posted 8/30/2014 7:45 PM (GMT 0)
Thanks all for your feedback.

Alex: sounds like the rowasa works very well for you - do you know where your inflammation is? - i think my son has left-sided UC - 35cm up from the bottom (is how the doctor described it) - maybe his is too far up for the rowasa to work for him?? and thanks for the tip on the starches - will try increasing starch intake again

Gary: you make a great point - actually our GI has ordered a re-do of the cdiff testing now that my son has been off the vanco for about 3 weeks

Fruitgirl: this is going to sound really dumb - but do you know how i can tell if the rowasa just isn't working or if he's sensitive to the sulfite - i'm just wondering. I'm going to request a prescription for the sulfite free rowasa and see what happens - we did try the hydrocortizone enemas (i think that's what you mean by the steriod enemas) but didn't help much - but i think we may have given up to early with those - another option to try...

Thanks again everyone. I'm trying to make sure we cover every option possible before going on to the next level of medicine. This is so frustrating - especially because i'm not the one having to deal with the hard part :(
Posted 8/30/2014 8:42 PM (GMT 0)

rb001 said...
Thanks all for your feedback.

Alex: sounds like the rowasa works very well for you - do you know where your inflammation is? - i think my son has left-sided UC - 35cm up from the bottom (is how the doctor described it) - maybe his is too far up for the rowasa to work for him?? and thanks for the tip on the starches - will try increasing starch intake again
(

My last colonoscopy was about a year ago but the notes then were mild to moderate colitis from the rectum to 20 cm. Yes it could be that his is farther up where rowasa isn't as effective. Not sure if you're doing this already but I recommend when squeezing the enema to do it forcefully (as opposed to gently/gradually) so that it shoots up farther, and as he lies on his side to lean even more into the bed so that gravity pulls the liquid down farther.
Posted 8/31/2014 2:30 AM (GMT 0)
hey Alex -

that's a good idea - i will try squeezing the enema more "forcefully" going forward (about to give it a shot now) - to date i've been gentle - always afraid i might trigger the need to poo. - oh what fun ;)

thanks again
Posted 8/31/2014 3:30 AM (GMT 0)
nah rb, keep the gentle squeezy thang - after it's been in for about five minutes, assume the upside down, statue of liberty position, and let the love spread down/up and/or all over the turd tunnel :-)
Posted 8/31/2014 10:15 AM (GMT 0)
The only way to know if it's the sulfite is to use The sulfite free rowasa and see if anything changes.
Posted 8/31/2014 3:18 PM (GMT 0)
We are very new here. I read and have found making sure to squeeze all the air out of the bottle helps a lot! No need for added air.
Posted 9/2/2014 2:18 AM (GMT 0)
Soystud - what is the "upside down statue of liberty position" - i'm almost afraid to ask - lol

Fruitgirl - gonna try and convince the GI to let us try the sulfite free version and see it that helps

Mom- thanks - i've gotten pretty good now at squeezing the bottle to remove the air and not squirting all the meds all over the my hands...
Posted 9/2/2014 8:14 AM (GMT 0)
Try the 4gm of Mesalamine enemas everyday for 3 weeks instead of the useless 1gm, at bed time after attempting to empty his bowls

laying on his left side for 30 min, back 15 min, right side 30 min and if it is not painful for him he should sleep on his belly

if that doesn't work, add the cortenema too in the morning
Posted 9/2/2014 11:45 AM (GMT 0)
"Soystud - what is the "upside down statue of liberty position" - i'm almost afraid to ask - lol "

no, nothing funky .... or fun ;-)

just try to get my feet up in the air for a bit to help (at least in my tiny little mind) spread the enema up through the colon - don't have a clue if it helps, but my motto is "why not ?"

one of those gravity tables would be cool -
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