Advice on rectal meds - stubborn proctitis

Hi everyone,

I posted this previously in the Crohn's forum as technically I have mild Crohn's colitis but my main problem area now is the rectum so I thought I might get some more help here in the UC forum.
When I last had a scope they noted a caecal patch, small section in descending colon, 9cm inflammation in rectum.

At the moment I've been flaring for about 3 months now, two of those were before I received a diagnosis. My trigger was going through a stressful time at work and coming down with a flu/stomach bug at the same time. A perfect storm for IBD it seems.

Before diagnosis my symptoms were mild: 2-3 bowel movements a day, sometimes diarrhea sometimes fully formed. My main symptoms were blood and mucus in the stool, which became more consistent and worse as time went on. Besides some lower back pain, slight urgency and mucus farts, I actually felt fine. All my blood markers were normal. Diagnosis was made from a faecal calprotectin stool test and colonoscopy.

I've been placed on pentasa (4g) per day and 1g nightly pentasa suppositories by my GI doc. I'm also taking a plethora of supplements including folate, multivitamins, probiotics, bosweilla, L-glutamine, tumeric, etc. I also normally eat a low carb diet similar to SCD / paleo diets due to my PCOS.

After two and half weeks of treatment my GI doc was happy with my progress and told me to come back in 6 months, but I really haven't improved that much since then.

It's now week 5 of treatment, and I'd say I'm about 80% better. I'm down to one fully formed bowel movement per day. Rarely any urgency. No mucus farts. No mucus-only bowel movements. None-mild rectal pressure. But about 50% of the time I'm still getting blood and mucus. This can range from tiny specks that most people probably wouldn't notice to quite obvious blood (but still less than before). So I think my colitis is limited to my rectum now.

It's so disheartening because I'll have like 4 days of normality and them BAM there's blood and mucus again (also doesn't help that at the moment I have a viral cold and the bleeding seems to be a bit worse). This pattern continues, one day fine and then next not, but the day after that I'll be fine again for a few days, then blood, etc. There's no rhyme or reason.

I really am trying to avoid stronger meds (oral steroids are not a desirable option for me as I have insulin resistance due to PCOS and as they make your blood sugar sky high they could give me type 2 diabetes and make my fertility worse). Luckily, my GI said he'd do a faecal transplant for someone like me before steroids. Still, faecal transplants are fairly new in Australia and expensive.

I guess my question is has anyone else experienced sporadic bleeding and mucus but feel fine in every other regard?
How long should I realistically be looking at before the bleeding goes away (I've read that rectal inflammation/proctitis is usually the last to heal as its hardest to treat)?

Should I go back to my doctor and ask to try other rectal meds? Other types of suppositories or enemas? Should I be doing things twice per day?

It's so frustrating. I just constantly feel like I'm taking two steps forward and one step back.... :(

Sarah

Its great that your doctor is willing to try FMT. From what I've read, at least here in the states, many GI's are going directly to biological medications for Crohn's as the evidence is starting to mount against any benefit to ASA meds for Crohn's disease. But you've come for advice...

My own experience: I have found that mesalamine enemas at night, and canasa suppositories during the day works well to calm things down for me. I will usually wait about an hour after what I guess to be my last trip to the bathroom in the morning to use the canasa. I've never felt the urge to pass the canasa after I use it, other than occasionally in the afternoon I may feel like I need to go, but I've learned to try my best to ignore that and go about my day.

My first UC flare up was well controlled with ASA meds, I got to 80% very quickly but it took several months to get back to 100% so don't be discouraged yet.

Glad I'm not the only one holo100! That's interesting that your doc wants to wait to see if it will go away by itself. I know that IBD can spontaneously go into remission but I've never heard of a doctor leaving it when someone is flaring?
Yeah I'm very glad that my doc is willing to try a FMT. In my country I don't qualify for subsidised biologics because my disease is not severe enough. I'm an academic and working overseas for a few years is pretty much part of the job, being in such an expensive medication like remicade could jepodise my risk of getting working visas in countries with state healthcare systems (basically, I might be either deemed a burden or have to pay for them outright which I couldn't afford). Plus they are kind of terrifying in terms of the lymphoma risks...
My situation has actually gone backwards since developing this cold. I went for 4 days of perfect bowel movements to the last four days of lots of mucus and blood. My body just can't get a break. I've made an appointment to see my GI and work something out. As everything else seems fine, hopefully I can up my rectal meds or try different ones.

Post Edited (Sarebear89) : 12/10/2016 7:33:19 PM (GMT-7)

Hi i know this is an old post but I have exactly the same problem. I was diagnosed in November 2016 with proctitis and put on asacol suppositories. I can have 2 weeks with nothing than boom the blood and mucus is back .I'm still waiting for my follow up appointment with the consultant but have been keeping a diary of symptoms. Did you ever resolve the problem?