Incredibly frustrating and inconsistent symptoms - Crohn's colitis

[Sarebear89]

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 Im fighting a viral cold and this seems to have made things 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 (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? It's so frustrating. I just constantly feel like I'm taking two steps forward and one step back....

 

[scottsma]

Hello and welcome.I was dx'd with Proctitis over 10yrs ago and it slowly became crohns colitis.Your symptoms do sound very like mine.But luckily for me a short course of steroids clears blood and mucus.As to bowel movements,no two days are the same.I try not to take loperamide (Imodium) to slow me down otherwise I very easily end up with constipation,which for me is worse.For a good few years after being dx'd with Proctitis I was prescribed Asacol suppositories,morning and night and they worked very well.I think 80% well is not to bad.Not many people with crohns can say that,although it would be nice to be 100%.

 

[Lizzie]

I too went from proctitis to Crohns colitis, and for most of the past few years I've had rectal bleeding. Pred enemas stopped it for six months, but now I'm on Asacol only the bleeding has come back (so I'm thinking of asking for pred enemas again, which unfortunately you have ruled out). It's scary knowing that disease in the rectum is incredibly hard to get under control, and that ostomy surgery is often the only way of dealing with it. Maybe taking more modern treatments like biologics would help but I have refused biologics.

 

[Sarebear89]

Hi Scottsma and Lizzie!

Thanks for your comments. It seems like proctitis is literally a pain in the arse!!

Do you think it's worth going back to my GI and asking for enough suppositories for twice per day? I've read that some people need to do them twice daily to get the bleeding under control. I was only instructed to do it once daily.

I think pred enemas would be okay, as it is more localised and has less systematic effects, oral pred for me is what I need to be wary of unfortunately.

I'm definitely much better than I was before just on the pentasa so I guess I should count myself lucky in that regard. Thanks for your responses

 

[Sarebear89]

Also, one more question, do you find your bleeding gets worse when you're sick? I've been battling a cold these last few days and it's definitely been much worse.
Do you notice that any foods trigger more bleeding as well?

 

[Lizzie]

I've never been prescribed twice-daily suppositories so I don't know the answer to that question. Mind you, using them once a day is bad enough, I'd hate to have to do it twice. Not sure about the bleeding being any different when I'm sick. Sugar most definitely triggers bleeding, maybe even worse than fibre. I didn't bleed for six months until I ate a slice of gooey cake about a week ago, and now I'm bleeding profusely.

 

[Sarebear89]

I've never been prescribed twice-daily suppositories so I don't know the answer to that question. Mind you, using them once a day is bad enough, I'd hate to have to do it twice. Not sure about the bleeding being any different when I'm sick. Sugar most definitely triggers bleeding, maybe even worse than fibre. I didn't bleed for six months until I ate a slice of gooey cake about a week ago, and now I'm bleeding profusely.

I agree, twice daily suppositories aren't ideal but I'm happy to give it a try if it stops the bleeding!
Triggers I've noticed so far for the bleeding are high carb intake/sugar and spices (I had Mexican one night and the next day was not pretty!). Being tired and run down also seems to make it worse, so I guess me being sick at the moment would play into that.
The bleeding I've had since being sick is the worse I've had since starting treatment so I don't think it's a coincidence. Hopefully it improves when I'm better!

 

[scottsma]

I agree the twice daily supps can be a problem.It's keeping it in long enough that troubles me.I need to be able to sit for at least an hour to keep it in place.So I'd do it at lunch time and in the early evening.Asacol supps are 500mg strength and I'm almost sure I was told that I could up the dosage to 3 per day if needed.

 

[kcindc]

I also had proctitis that later turned into crohn's colitis that later turned into Crohn's everywhere! When I had proctitis, I use enemas and that really did the trick pretty quickly.

The meds you are taking are generally maintenance meds which can take time to get you to 100% remission. Sadly some folks never achieve 100% remission. Meds like steroids and biologics can sometimes bring a faster response, but are expensive and have bigger side effect and are generally for severe disease, or if you are not responding.

I would give the treatment a little longer to see if you improve more, if not, make an appointment to discuss whether predinsone enemas or ASA enemas would help.

Best of luck!

 

[Sarebear89]

I also had proctitis that later turned into crohn's colitis that later turned into Crohn's everywhere! When I had proctitis, I use enemas and that really did the trick pretty quickly.

The meds you are taking are generally maintenance meds which can take time to get you to 100% remission. Sadly some folks never achieve 100% remission. Meds like steroids and biologics can sometimes bring a faster response, but are expensive and have bigger side effect and are generally for severe disease, or if you are not responding.

I would give the treatment a little longer to see if you improve more, if not, make an appointment to discuss whether predinsone enemas or ASA enemas would help.

Best of luck!

Thanks! I guess it's silly to think that within 5 weeks these could could get me into 100% remission. I'll keep going with them for another month until my prescription runs out and then I'll see my specialist. I think I will need to try other rectal meds more often.