My next step

Ok, for a few months now, I have been plagued by proctitis (colitis is in remission for a few years now). I got on the mesalamine enemas based on everyone's advice here and did experience some relief. Due to the high cost (over $500 with insurance), I had to taper the use of it to every other day and then every few days. Of course, the proctitis got worse again. So, I had to juggle some numbers to be able to afford my prescription (if I didn't have to pay over $1,000 a month for insurance for me and my two kids, it wouldn't be as much of a problem).

so now, I have been on the mesalamine enemas every day for almost two months and while the blood is gone, the urgency is still there (although I can still hold it). The inflammation is also still there. What is my next step? Steroid enemas? I have slippery elm powder on order to try that type of enema, but I am about to go crazy with that constant swollen, achy feeling! My only relief is a hot bath and believe it or not, exercise (the relief lasts for a few hours after a cardio workout).

I would appreciate any advice and other things I can try.

Hi Texas

Your $500 enema cost is not right. I have high deductible insurance and pay for my meds out of pocket and my generic mesalamine enemas are $270. So are you on brand-name Roawasa? Can you switch to the generic mesalamine? Or investigate mail order?

I looked at Canada meds (which is where I order Canasa for $49) but mesalamine enemas the same price in Canada as US.

After using mesalamine enemas for quite a while and in remission except still some blood I switched to Canasa and blood went away. So I agree with getting Canasa but ask the price first. I was SHOCKED at US price for Canasa of $700 and that's with my insurance discount. There is no generic for Canasa.

Good luck.

Imagardener - $500 a month is about right for my insurance. Work does not offer group health and with a pre-existing condition, I have to pay into the Texas Risk Pool for private health insurance, which sucks. If Texas allowed me to insure my kids on their own policy, I could save a lot of money. Unfortunately that is not the case so I cannot take advantage of the government insurance for pre-existing condition for myself because you cannot add on dependents. Hubby is on Medicare due to permanent disability so we are basically screwed!

Isn't Canasa a mesalamine? The script I have is for generic mesalamine-4 gram doses from Perrigo ... Do you all think a corticosteroid would bring me immediate relief? I am making an appointment and hopefully should get in next week so I want to know what I should ask for ...

I appreciate the advice!

Hi Texas Gal,

I'm sorry you did not find relief after two months on the enemas. Many of us here agree that the rectum is the last and the hardest to heal when in a flare.
I had a proctitis flare in March-April and I asked my GI for hydrocortison enemas. I had never used them before, but they helped me tremendously. I used them nightly for two weeks, then every other day for a week, alternating with mesalamine enemas, then only twice a week. I got back to using the mesalamine nightly now, and will taper down soon if things stay stable. In my experience, therefore, the hydrocort enemas helped and had no side effects. Maybe I was just lucky. I have insurance and I only paid $10 for 14 bottles.

I hope this helps. I'm really sorry for how much you have to pay, especially since you found no relief. But, if I learned something from this forum, is that UC flares take TIME to heal, a long time... Hang in there, this inflammation will be gone soon!

Best,
RT

Thanks so much everyone for the input ... I will look at Canadian pharmacies for the enemas but also ask my doc about the steroid enemas too ... I feel fortunate that my colon has been pretty much steady and in remission for several years (I still take the maintenance dose of Sulfasalazine) ... I've looked into those patient assistance deals and unfortunately, I make too much money (ha! that will be the day) so I don't qualify. I already take the slippery elm orally but am waiting for the powder to come in the mail that I ordered to try making slippery elm enemas (breaking open capsules is not my idea of fun!) ... Thanks again ...

RH_texas_gal, does your employer offer a flexible spending account for health care? I know it's too late to open an account for this year, but if you can get one, sign up for it next year. That way you get pre-tax money put aside for health care costs. As someone with a chronic illness I manage to spend my limit every year. Depending on your tax bracket you get that much money saved (20%? 15%?).