Incredibly frustrating and inconsistent symptoms - Crohn's colitis

Hi everyone,

So this is my first time posting. I have mild-moderate Crohn's colitis. At the moment it's only in the lower portion of my colon (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 be looking at using an enema instead if suppository? Or using suppositories twice a day?
It's so frustrating. I just constantly feel like I'm taking two steps forward and one step back.... :(

Sarah

Pentasa has actually worked really well for me except for the rectal bleeding. It stopped my frequent bowel movements and diarrhea within a week and a half. To be fair, blood was my first symptom and I feel it might be the last to go.

To be fair I'd like to stay off immunosuppressants or other 'hard' medications for as long as possible - being immunosuppressed actual terrifies me (due to other health issues I've dealt with in the past). I know that I'm somewhat lucky to even have that choice though. I'm in Australia and my condition isn't bad enough to qualify me for biologics under our healthcare system unfortunately. But I've read that proctitis is very stubborn so maybe at some point I'd need to go there if other things don't work. I think I'll go back and ask to try other recital meds first though.

My specialist actually works with (somewhat controversial) Prof Borody in Australia and so he said he'd take me down the faecal transplant route first has he's had success. Still as its experimental and not covered by our healthcare system it will be pricey. But I guess I'll do what I have to do!

Thanks for your reply :)

Post Edited (Sarebear89) : 12/7/2016 6:27:03 PM (GMT-7)

I'm surprised Pentasa has helped you at all, since - unlike other mesalazines - it is designed more for the small bowel than the colon. Rectal meds may be a good addition for you in that case; either rectal mesalazine or steroids. (Rectal steroids are a lot less potent than oral steroids; it's worth discussing with your doc.) For the most part, mesalazine is pretty useless for Crohn's, since it often goes deep into the bowel layers where mesalazine can't reach. But as you seem to have a fairly mild case without any fistulas or abscesses, then maybe mesalazine is sufficient for now.

The thing about Pentasa is that it's the only mesalazine which releases its contents throughout the small bowel and colon - most mesalazines start at the terminal ileum or colon. I would have thought there would have been less of the Pentasa available than other mesalazines by the time it reaches the colon.

Pentasa is also used more in Crohn's than in UC for presumably that reason. But I don't know for certain.

At any rate you definitely need to up the rectal meds from the sounds of it. The UC board can give you good advice on rectal meds if required. I know a bit about them, but not as much as the UC board's rectal med expert, quincy.