Recently diagnosed with Proctitis

it doesn't sound good or bad so much as it sounds normal for proctitis. two months is definitely quick - it's great that you saw results so fast, but you may need a little more time and/or push to get all the way into remission. also, i was diagnosed with proctitis at first and then my disease progressed a bit - not a ton, but enough that i had to go back to the doctor and get checked out again before they could figure out the cocktail of medicines that worked for me. that may be the case for you.

but before that, talk to your doctor. they may need to up your oral meds, but the first thing i would do is ask your doctor about rectal meds. the combo of oral and rectal meds can be really helpful for people who respond to mesalamine to get you into remission. they're no fun, of course, but they really help. canasa, a suppository, is a common choice for folks with proctitis, but they might put you on the mesalamine enema or the foam, which goes farther up the tract, to be sure you're covering all the inflamed areas.

let us know how you do!

my story's certainly not representative, but i was diagnosed via a colonoscopy with proctitis and she put me on Canasa suppositories - no oral meds. this worked for about three months - so yes, it did go away briefly - and then I started feeling a little oogy again... like the canasas just weren't doing as much as they had been. i was seeing mucus again, and when i saw a little blood i freaked out and called her. i told her about my symptoms and she had me do a flex sig. at that time she saw the disease had spread - not to involve my whole colon, but to involve the lower left side.

at that time she took me off the canasa and switched me to the max dose of lialda and nightly rowasa enemas. i've tried tapering off this dose but i seem to feel better when i take everything, and since it got me into remission she wants me to stay at this level for six months before we fool around with it.

Hi..welcome

What exactly is the extent of your inflammation...how many cms?

You should be on a rectal med for sure...I'd suggest a retention enema rather than the suppositories.

You don't need your oral meds increased at this point, actually I think your oral dosage is too high.

In truth...your doc was remiss in NOT prescribing you rectal meds....jeepers.

q

oral meds do eventually get all the way down there, but my gastro described it to me as - by the time it gets alllll the way down to the end there, it's not going to be the same nice consistent coverage you might get higher up the tract. and you don't need it higher up the tract! although i agree you should still be on some dose of oral meds to help slow the progress if possible.

you can take oral and rectal at the same time - most of us who take mesalamines do take some combo of both.

ultimately, i would not take any more UC advice from your GP. if you're not seeing a gastroenterologist, get one and leave the decisions about how to be medicated to him or her. in an ideal world, a GP should not be doing UC treatment planning.

The oral meds don't eventually get all the way down. treating directly is the way to go...considering...UC starts at the rectal/anal cuff. No meds will sit there from oral dispensing.

Both, yes. You don't have to be on the max amount of oral 5ASA. Rectal max...definitely.

Yes, both ends approach.

Messy? well...subjective. Your doctor should never have put that in your mind and discourage its use.

Have you had a complete colonoscopy? If not, you should get one asap....because some forms of UC have cecum involvement and not to be assumed it definitely isn't.

But...you don't know if you do have UC....right?

I hope your doc took biopsies as far as the scope can reach.

Ask for enemas rather than suppositories...my perspective. But, if you do use supps, use them for sure twice a day.

I find the supps leak of I have gas, and prefer the day to be only air, nothing else. That's why a nightly dosage of enemas is better. It's out with morning bms.

Again, subjective, but trust me on the use of them based on extensive experience and a doctor who is pleased with the results after 23 years of use.

q

You haven't got the results from the biopsies as of yet?

You do need a c-scope eventually if the biopsies rule everything else except being consistent with UC or CD.

q

I am definitely wondering why they did not do a colonoscopy, ask your GI on feb 7 and let us know. I was diagnosed with proctitis 8 years ago and never got it under control and now have uc, but always wondered if I was given a colonoscopy on that first visit., I drank the prep, but remember being awake, then I switched GI had a sigmoidoscopy from her, and did not get a colonoscopy until 2 years later and it had spread. I can,t help wondering if it was worse from the beginning.

Thanks for the advice everyone.

I went back to my GP armed with new knowledge. I asked for Asacol enema 1g per dose and this is to be used twice a day.

Can I use this Asacol enema twice a day aswell as the full dose of oral Asacol I'm currently taking (2 x 400mg 3 times a day) or should the oral be less?

I'm asking these does questions because I have no confidence in my GP's opinion. He's useless and I'll be changing shortly, once I've seen the Gastroenterologist on 7th Feb.

Funny you should say that, I've just bought the VSL3 caplets today! What should I expect in the short term from these?

Absolutely use both oral and rectal. You have NO idea what's happening at the top end of your colon. Best to keep any possible inflammation down. the 2400mg is a good, and if you tend to miss the mid-day dosage, you can tell the doc you need to switch to taking it twice a day. I've done that for 23 years.

The cancer-risk for UCers can be higher, but it doesn't mean we'll all eventually get it. It's believed that the 5ASA meds can help protect/lessen the likelihood....I'll take that possible insurance.

If you can take 5ASA meds...consider them your best friend forever. I've never swayed from them, nor intend to. I'd rather have my colon out than be on the other meds...

If you cannot take 5ASA, different story.

My doc's logic is to be on the lowest dosage possible for best coverage over the longest period of time.

With lower working maintenance dosage that you're on, you have LOTS of room to up when you flare. As well, using rectal meds to deal with flares, you help keep them at a minimal. Upping them to nightly (or twice daily considering you're on a low dosage already) is a good plan, and once your flare is controlled, they should/must (in my book) be tapered...eventually to a maintenance.

Try to be patient through this process and not get yourself in the belief this is an easy task. Think turtle and the hare....this is the turtle process.

hang tough....
q

You'll probably still have some bleeding as you're healing, but I will say that rectal meds are definitely a huge positive.

Now, wouldn't it be nice to NEVER use pred??? I hope that's a probability for you...
q

My husband is on the same regimen for his proctitis. Asacol 2 @ 3 times a day and he has been able to taper the Rowasa enemas to every other night. By the day he is going to use Rowasa that night he can definitley feel that he needs it.
He is also taking VSL#3 and feels strongly that it helps.

I am not sure a GI would say that you would only take Asacol for 3 mo. It is sure hard to stop something that is working and giving you a good quality of life.

Initally Proctitis can be quite stubborn so once you have it under control, like Quincy said- you still need to treat from both ends to stay trouble free!