Flare Advice - Lots of blood, mesalamine not helping much

Hi guys,

I've been lurking since 2012 when I was diagnosed and have always been impressed with the help that's given, so hopefully you have some advice for me. I've had mild flares every year that were always controlled by Canasa. I've been on Lialda daily and Canasa a few times per week for maintenance since my flare in summer of 2016, but despite adding rectal meds to my maintenance regimen, I still ended up flaring about six weeks ago (September 2017).

The flare was pretty mild as usual until the first week of October, when I started seeing a lot of blood on the wipe and blood started dripping out after my BMs. This has gone on for about three weeks. I only go 1-3 times per day, almost always in the morning, and blood is streaked on the stool (starting at the end, not the beginning) and then it drips out 3 to 12 times. There's plenty of blood on the first three or four wipes.

Another distressing symptom is that every time I pass gas, some feces and/or blood comes out.

This is my first time being on Rowasa, and I've taken 11 doses so far. Some questions:

1) I realize that Rowasa takes some time, but I was hoping to see some sort of improvement after 11 doses at least with bleeding. I've generally had no problem retaining them or using most of the bottle, though I do lose sleep because of discomfort. How long does it usually take to start to see results from Rowasa?

2) Does this sound like a dangerous amount of bleeding? I don't feel anemic per se, but because of lack of sleep, weather change, and the general flaring feeling, it's hard to tell. I have an appt on November 8th to get a CBC.

3) My first thought was perhaps hemorrhoids or a fissure because of the bleeding at the end but the "wet farting" has me convinced this is all flare-related. Is the "wet fart" problem a common issue? When that starts to go away, will I know that I'm healing?

4) What's a good next step for me? Should I get a stool test? Do I need stronger meds? I'd like to avoid immunomodulators and immunosuppressants (including oral steroids) if possible, but not all of us can do that and I'll do what I have to do to get better. Rectal steroids, Uceris, pred, or give the Rowasa more time? The bleeding concerns me and I don't want to let it go on if Rowasa isn't going to be strong enough.

Diet-wise, I've eliminated trigger foods over the years and I don't feel that I'm eating anything that contributes to symptoms. Chicken, rice, steamed veggies, some potatoes, fruits (bananas and applesauce mostly) is pretty much what I eat.

This disease is robbing me of career and social opportunities and affecting my relationships and ability to make a living, so I welcome any advice... thanks!

Hey I'm not qualified to give advice (was only just diagnosed myself) but do you have a doctor you can call? I know they told me if I had symptoms like the ones you're describing, that I'd have to either to into the gastro doc immediately or even the ER again, particularly if accompanied by fever again.

I can say I benefitted a lot from being pushy. When I first went to my primary care doc w/ these symptoms, they kind of pushed me along, said I had IBS -- and suggested I follow up in DECEMBER (!). I basically demanded a referral to a specialist, and then even after two colonoscopies had to keep calling until I got the help I needed.

Also don't underplay your symptoms. As far as I'm concerned, any blood is too much blood. If I'm doubled down in pain, it's a "10" --- not a 7 or an 8.

Until I was loud enough I don't think I would've gotten the help to get this under control.

Welcome to the forum! Always glad to convert a lurker to a poster!

1.) I'd give Rowasa 3-4 weeks to do it's job. Sometimes you feel better after a week, sometimes it takes 3 weeks, it does vary.

2.) Dangerous = no. Blood from an UC can be very, very deceiving. At most, within a single day, we pass 2 teaspoons to 1 tablespoon of blood while flaring. It often looks like a whole lot more than it actually is, because it is mixed with water or diarrhea. A single drop of blood can spread and paint the toilet water red. It often looks a whole lot worse than it actually is. Certainly blood is something that makes us all a bit uneasy and we tend to fear the worst. Don't worry, as it's fine.

3.) If you have urgency + increased bm frequency + blood then it is probably UC inflammation. It sounds like rectum-only inflammation from what you describe, can be darn stubborn, and is always the very last bit to heal. Yes, rectum inflammation can cause us not to trust a fart, to have that feeling we need to poop and only pass mucus or a tiny bit of stool. It's known as tenesmus and it's super annoying, and yes, does go away as we heal.

4.) A stool test for possible infectious causes is always a good thing when your symptoms worsen and do not respond to meds.

What you describe is fairly mild, I'd say hit mild inflammation with mild treatments before jumping up classes of medications. I'd give the rowasa more time to work, another few weeks at least. Are you doing Canasa in the AM and then Rowasa in the PM? If not, try it. You just might need more anti-inflammatory power.

For the next step, I'd try rectal-route steroids, as they are 90% topical and only 10% systematic. Ask for a Steroid enema, foam, or suppository and see if that's enough to beat the inflammation.

how much lialda are you taking per day ? you might want to up it to max dose vs maintenance dose if you haven't already -

TroubledTurds said...
how much lialda are you taking per day ?

2 pills in the afternoon (2.4g). I've gone up to the max dose (4.8g) before when I can't get my hands on Canasa quickly for previous flares, but any more than 2 pills makes my colon a little rumbly. I'll float the idea of increasing the dose by my doc though, as 2.4g is more of a maintenance level.

And how many times a day having bms?

q

quincy said...
And how many times a day having bms?

q

Oops, I meant to answer this earlier. Only 1-3 times, usually all in the morning between 4am and 7am (sometimes one in the evening... ideally I could do one before it was time to take Rowasa and sometimes I can). When I'm in remission, I just go once, immediately upon waking.

You might need immunomodulators like azathioprine/imuran/6mp or a biologic like humira/remicade at this point. See what the colonoscopy says. I'd begin thinking about them as the mental hurdle is often the hardest to cross.

Thanks for the replies, I appreciate it.

I'm going to ask the doc for steroid rectal meds so that I have them on hand, and probably give the Rowasa a bit longer (and not use the topical steroids if there's improvement in the bleeding with Rowasa alone).

I'd still like to avoid the immunomodulators that you mentioned of course but honestly, I've accepted this disease and everything that comes with it (including the possibility of stronger drugs being needed at some point). Like you said, we'll see what he finds down there later this month and I'm fine with whatever conversations might follow.

Thanks again for the solid advice. It's great to have other people weigh in... it's easy to start to lose perspective and get "too close" to the situation when I'm on my own with it.

Thanks for the reply. I tried a couple months without fish oil and I'm not sure it had much effect either way (I started the flare in the middle of the trial and recently went back to it). Good idea about stopping the turmeric for awhile... I'm cutting both of those out just to see what happens. Both of them can act as an anticoagulant so maybe getting them out of my system for awhile might be beneficial.

I used to be a bodybuilder so time-boxing meds/physical milestones is innate but I get what you're saying about patience and the virtue of it. I was hoping to get the bleeding under better control before I have to prep for my colonoscopy because the thought of actively bleeding through that is unnerving. All of my previous flares have been much more mild when it comes to bleeding and they all resolved themselves within a few weeks once I got Canasa going, so this one is kinda new for me.

I appreciate the help. Waiting for the doc to call back about the topical steroid.

Did some labwork, c diff was negative, hemoglobin was just below 12 (my normal is 15.5) so they gave me 2 months of pred starting at 40mg. I have a colonoscopy a week from tomorrow and I always thought pred would throw off the scope results but I guess the docs know what they're doing. Saw a bit of improvement on rowasa but not enough I guess. Bleed a pretty good amount (maybe 1.5 tsp) every time I go, which is only 2-4 times a day thankfully. Still on Lialda and rowasa.

I asked about rectal steroids but they wanted to do the oral. Never been on pred before... this is the third day and no side effects other than extra energy.

Thanks for the advice and the help.

I had my colonoscopy yesterday. It showed that the first several centimeters of my rectum were more inflamed than ever, but the rest of me looked great. My last scope showed 20 centimeters affected, but this one was much more limited. Maybe the week and a half I was on Pred got rid of the rest, if I indeed had it. He took biopsies up and down so we'll find out. I feel like my flare this time is just limited to the rectum though, because last year when I had 20cm affected, I felt cramping in the sigmoid area and had more urgency and this time I don't.

That explains the bleeding though, obviously. Lots of ulcers in that area. I'm a little puzzled that the Rowasa evenings and Canasa mornings aren't helping more, but I guess that's how it goes with UC sometimes, and I know that the last couple inches are the most stubborn to heal.

I've been on Pred for about a week and a half and feel a lot better, and assume that it'll continue to improve things as the days and weeks go on. He'd like to talk about Humira or Imuran at my follow-up, which still sounds a little extreme to me, honestly, but if mesalamine isn't working then it's not working I guess!

I got my last lab test back today, and it said that there were no ova or parasites found, but they did find "rare white blood cells." I know that leukocytes can often be a sign of infection but I'm assuming they're common in UC or almost any kind of inflammation. He'll probably let me know at my next appointment, but should there be any follow-up test to discover whether the "rare white blood cells" are UC related or possible from infection? I had a c.diff test that came back negative.

UCmee said...
Hi RedCoolAid

Have you got your biopsy results and what it showed up? I got exactly same symptoms going on and my last scope was done just 6 months ago and i'm going to get another one done.

My followup isn't until early January, which is too bad because the prednisone had helped with the bleeding for a few weeks, but now that I'm down to 25mg I've been having the same symptoms. Not as bad yet, but I'm sure I'll be in pretty bad shape by early January when I see the doc.

Sorry to hear that you're going through the same thing. You're even the same age as me. Probably good that you're getting scoped, because there's an off chance that hemorrhoids or something could be adding to or causing your problem if bleeding is your only symptom. And if your doc is like mine, he needs to see an issue before he's comfortable prescribing stuff. Sucks that you have to do another one so soon though. Good luck with it.

Is oral mesalamine the only med you're on? I noticed that you're only on a maintenance dose according to your signature, and it might be worth it to up it to 3 or 4 pills instead of 2. Has your doctor offered you any rectal meds? My lower bleeding was always controlled well with Canasa until recently. Canasa is worth trying, as are mesalamine enemas. My doctor was amazed that they didn't do much for me because they're usually quite effective.