Dealing with ongoing bleeding

I have mild UC and follow the SCD diet. In general, I don't have any digestive issues - one nicely formed BM per day - no gas, no D, no cramping, no urgency.

Last spring after getting IV antibiotics, I started having intermittent, painless, minimal rectal bleeding.

Using Canasa 2x daily for a couple of weeks generally makes it go away, but as soon as I taper off the Canasa, it comes back. I had a flex sig done March 26 after a course of rectal meds and everything looked great, in fact my GI thought it might just be a hemmorhoid (which made me really excited). But sure enough after 2 weeks off meds, the bleeding came back, along with conjuctivitis and canker sores in  my mouth (both inflammation flags for me), so I'm sure it's the UC, not just a hemmie.

I met with my GI again yesterday to ask her whether the continued bleeding was a problem. I asked, "If I don't treat it with rectal meds and it continues but doesn't get worse, is that a problem?" She said it really shouldn't be a problem unless it bothers me. She said being on sulfasalazine protects against rectal cancer, which would be the biggest concern, and I don't bleed enough to make me anemic (just streaks on my stool and on the toilet paper, no dripping blood or bloody toilet water).

I'm on sulfasalazine and the SCD diet, so I'm medicating that end. I don't mind the Canasa but they are horribly expensive even with my insurance, as is Rowasa.

Has anyone ever tried or heard of grinding up sulfasalazine pills (mine are not the enteric-coated ones, just the plain gold-colored pills) and doing a "make your own" enema? Could that do more harm than good or would it be worth a try?

Kathy

 

Isn't it horrible how expensive these things are?
I've thought about using 1/2 a Rowasa enema each night to stretch dollars....
and I've thought about trying the homemade vitamin E enemas.

But, to answer your question, I have never ground up sulfasalazine pills to make my own. However, when I was first diagnosed there was an oral suspension of sulfasalazine available, to take by mouth (I never took it by mouth...) My doc had read about research being done to use 5-ASA as an enema - a new idea then - and since I was game, he had me get this oral suspension and mix it with extra water and use it as an enema. (I had to pour it into an old-fashioned big red hot water/enema bottle....) What can I say? lol It was cumbersome, but it worked, just like Rowasa works.

I think I've heard that oral suspension isn't available any more, but you could ask you doc or pharmacist. It wasn't horribly expensive, that I recall....

Just checked and the sulfasalazine powder is $400 for 30 days supply ... It just blows me away the price differences. The mesalamine (anti-inflammatory) drugs are all so expensive, but I can get steriods really cheap (like $9 for 30 suppositories). Sheesh. I guess I should be glad that at least I can take sulfasalazine and it's only $40 for a 90-day supply of 6 pills a day. Asacol is $300 for 30 days. Generic Colazal is $200.

WOW! That's incredible, the price......!
Did you ask him about what was different in the pills vs the powder...?

I think the sulfasalazine pills I took were enteric coated, even though they just looked powdery orange.... there are pictures of them online somewhere, if you're not sure.

Darn, I was hoping that would work out for you.....!!