Switch to sulfite-free Rowasa -- anyone notice a difference?

Hi folks -- I'm new to posting here, though (as many do) I've been lurking and learning over the last several months. These forums are absolutely amazing! Thank you to all who post and help out !!

So, a brief history: I was diagnosed with Ulcerative Proctitis after a colonoscopy in July 2010, and have been battling with worsening symptoms ever since. My GI started me on Canasa, which made me very itchy for some reason -- so after a month, I switched to oral meds, first Balsalazide then Asacol. The Asacol put me in remission for around a month, then I started getting symptoms again, plus *lots* of bloating and painful cramping. I went off all meds in late January, and started a some herbals (daily licorice, marshmallow root, chamomile, peppermint, milk thistle, boswellia, fish oil) and went on a gluten-free diet. I was on this regimen for a month, without any meds, and things were just getting worse and worse, to the point where I was getting seriously concerned about the bleeding.

In early March I finally got an appointment with my GI, and he has prescribed nightly Rowasa enemas. After about a month on these, I'm seeing a lot less blood, but there is still a little almost every time I go, as well as several trips a day with just mucus and blood. Altogether I'm averaging around 7 trips/day now, it had been more like 9 before Rowasa.

I'm wondering whether I should ask for the sulfite-free version of Rowasa, after reading tuppenceworth's thread (https://www.healingwell.com/community/default.aspx?f=38&m=1961438). I would *really* like to achieve remission without going to the corticosteroids, especially because I have family history of bipolar disorder. But I fear that at the current rate, this isn't going to happen. Perhaps the Rowasa's effectiveness is being counteracted by the fact that it has sodium metabisulfate in it?

So, I was also wondering if anyone made the switch to the sulfite-free Rowasa and saw a difference as a result. I suppose it can't hurt to try, regardless, and I plan to ask my GI about this next week. Just curious if there was anybody who has tried with positive results .

That is probably the next step for me. My Dr. was reluctant to prescribe these at my last appointment, and wanted me to try the Rowasa first...he said that although the topical Hydrocortisone was less likely to have side effects, it was still absorbed systemically and should still be treated with caution. So, I'm still hoping to reach remission with the mesalamines, though it's looking pretty iffy at this point...

I'm wondering whether you are allergic to some of the inert ingredients-- since you experienced itching with Canasa. However, IMHO, Canasa alone is not sufficient to heal U Proctitis that bleeds. RE effectiveness of non-sulfite Rowasa: the issue there is allergy or not to sulfites. And, if Rowasa only reduces your daily bms from 9 tp 7, you most likely need stronger medication for a while to get your symptoms under control. Don't be afraid of steroid retention enemas because they can work miracles in a month or two-- and the steroid dosage absorbed is far less than with oral med such as Prednisone. There is also a steroid retention foam, Cortifoam, which contains only 10% steroid, can be very soothing to the rectum, and stays put much better than the liquid retention enemas-- meaning that you can use it during the day when you're up/about. Has your doctor suggested simultaneous use of an oral mesalamine plus Rowasa? That's a combo that helps many UCers achieve remission when used over time. U Proctitis can be very stubborn and take months to heal-- so you may have to steel yourself to fight it. Best wishes! / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal)

I'm picking up some SFRowasa tomorrow for the first time. The normal Rowasa has been making things worse lately so thought it was worth a shot. I will also let you know if it works better than the sulfa based enemas.

Here is an update after 1 week of using SFRowasa instead of sulfa-based generic.

My guts were almost as good as new yesterday. 4 BMs (instead of around 10 before)

Less gas, less urgency, less constipation, less pain with BM. Was able to be out and about most of the day without any problems!

Here's hoping it continues to heal up so I can get off the nightly colocort and do a SFRowasa overnight instead.

I used the enemas containing sulfa for years and they worked great for me to both get me into remission and to keep me there. When I tried them for this last flare, they seemed to make things worse, which was unusual. Same with Canasa.

The SFRowasa enemas can be a bit brownish in color, likely due to not having the sulfa preservative. The other thing is I used to notice a sulfur smell when passing the enema which I no longer get.

Anyone who can tolerate oral mesalamine, but not mesalamine rectals with sulfa, should definitely give SFRowasa a shot IMO. The other thing is I wonder if long term exposure to sulfa increases the risk of becoming sensitive to it. I used sulfa containing rectals for many years before they started to bother me.

C_G_K, so glad to hear it's working for you, and thanks for posting your progress! I'll chime in too now :).

I've been using the sfRowasa for a little over a week now, and I'm showing quite a bit of improvement -- though it's hard to tell whether it's the new meds or the probiotic yogurt I've been eating. Either way, I'm happy to report that yesterday I had *no* bleeding. This is the first time in around four months that I can say this! So *something* is helping me out. (Today I've already had some bleeding, so I know things aren't completely healed yet, but I feel like they're going in the right direction for the first time in a while.)

So, if regular Rowasa isn't working for you, I'd say this is a good option before you start going to other medications. Be careful that the pharmacy fills the right thing though -- I found this part of the process to be pretty difficult. They couldn't even find it at first, then tried filling the generic. In case anyone needs it, the NDC code (which may help your pharmacy fill the right drug) is 68220-022-14 for sfRowasa.

I'll keep updating as time goes by. Here's hoping!

It is my understanding that there is no sulfa in any of the Rowasas.
There are, however, sulfites to precerve, unless you get the SF - suflite-free.

Another update: after almost a month of using the sfRowasa, I'm afraid I must report that it isn't doing any more good than the regular Rowasa . C_G_K, is it still working well for you?

I'll keep using it, since it doesn't seem to be helping or hurting any more than the regular Rowasa, and there's still the slim chance that the lack of sulfites is helping (if perhaps imperceptibly). I'm about to start a new diet, hoping that this might do the trick, since things have gotten pretty bad lately.

C_G_K, I'm *so* glad to hear that it's working well for you! (And that the probiotics are providing a measure of protection against bugs!)

Keep feeling better :), and take care.