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Posted 3/14/2017 5:36 PM (GMT 0)
Hey everyone...
So some of you might remember I've had a variety of ups and downs with Ulcerative colitis this past year coupled with dealing with hemmis. It's been frustrating and confusing to me because it's been so inconsistent for me.

By this I mean will have a couple of weeks where I start to think I might be going back into remission - solid BM's, no real signs of blood - to the last few days where I've had bad cramps - seeing a bit more blood -and felt the urgency to go to the bathroom but usually slightly loose bowels and not a great deal there (sometimes just a few pieces)

Anyone have this type of experience? The meds have been the same (4 lialda - canasa 1 -2 times a day)
Posted 3/14/2017 5:41 PM (GMT 0)
Im on the same meds as you except Apriso instead of Lialda, canasa 1x per night before bed...

I am in the same boat. My bowels will form and begin to look good but then they wont and it goes back and forth. I have been seeing a little blood still. Im getting sad thinking about having to jump on prednisone or Uceris or something else... hate this crap
Posted 3/14/2017 5:49 PM (GMT 0)
yeah the gurgling, rumbling and cramps in the stomach has been a new symptom the last few weeks (on and off)... I was spoiled with such extensive periods of remission, a couple times where I (foolishly) decided to decrease my Llialda to one a day (which I've since learned probably did nothing) and was really feeling no symptoms at all. Now, it's been this kind of roller coaster. I still feel bad even complaining after reading of the more major cases people on here are dealing with... but this does do a number on your psyche -stoking fears of what's going to happen next
Posted 3/14/2017 6:49 PM (GMT 0)
If you have to ask "am i in remission?" then the answer is likely no. There's no doubt when you're in a remission, then you can forget you have UC and go about your day without urgency, or frequent bms or signs of blood.

Considered a C-Reactive Protein (CRP) blood test or a Fecal Calprotectin stool test? Those measure your inflammation levels and give you a much better idea if you're in remission or not. A colonscopy or flexible-sigmoidoscopy are the gold standard byt a heck of a lot more invasive and the preps suck.

With hemmeroids plus UC then it can be more difficult to say which it is.
Posted 3/15/2017 1:22 AM (GMT 0)
I am in the same boat! Taking lialda 3/day, I was in remission for 2 1/2 years. This past December, a flare up came out of nowhere. Could have been the stress of the holidays or poor diet (too much sugar, and leniency with gluten), but at the same time, my husband was battling some kind of stomach bug, that I thought I may have caught, but unlike his 48 hour bout, mine wasn't going away. It has been a mild flare....no blood, barely even diarrhea.....just mucus, sense of urgency, and tenesmus (feeling like I need to empty my bowels, but nothing). Went on prednisone 40mg, which helped, but got strep throat, and regretfully took antibiotics (I know better now), and all symptoms came right back. Managed to get some sense of normalcy by changing my diet (no gluten, grains, potatoes...basically SCD), started a probiotic, drinking apple cider vinegar every morning, and even making my own 24 hour fermented yogurt). Doc just wants to do another colonoscopy!! So frustrating. Can't really tell if this is a "real" UC flare, or something else! Started thinking I might have candida overgrowth in GI tract, or maybe parasites (symptoms would likely be worse though). Anyway, my brain is exhausted from constantly trying to figure this out- what caused it?! how can I cure it?!, etc!!! Just trying to avoid going on more, stronger meds! Afraid that Lialda just isn't working anymore!
Posted 3/15/2017 2:57 AM (GMT 0)

UCIsolates said...
I am in the same boat! Taking lialda 3/day, I was in remission for 2 1/2 years. This past December, a flare up came out of nowhere. Could have been the stress of the holidays or poor diet (too much sugar, and leniency with gluten), but at the same time, my husband was battling some kind of stomach bug, that I thought I may have caught, but unlike his 48 hour bout, mine wasn't going away. It has been a mild flare....no blood, barely even diarrhea.....just mucus, sense of urgency, and tenesmus (feeling like I need to empty my bowels, but nothing). Went on prednisone 40mg, which helped, but got strep throat, and regretfully took antibiotics (I know better now), and all symptoms came right back. Managed to get some sense of normalcy by changing my diet (no gluten, grains, potatoes...basically SCD), started a probiotic, drinking apple cider vinegar every morning, and even making my own 24 hour fermented yogurt). Doc just wants to do another colonoscopy!! So frustrating. Can't really tell if this is a "real" UC flare, or something else! Started thinking I might have candida overgrowth in GI tract, or maybe parasites (symptoms would likely be worse though). Anyway, my brain is exhausted from constantly trying to figure this out- what caused it?! how can I cure it?!, etc!!! Just trying to avoid going on more, stronger meds! Afraid that Lialda just isn't working anymore!


call your doc, tell him you're upping the lialda to 4/day, and you need a script for mesalamine enemas - let him know that you will assess things in a month and decide at that point if a scope is warranted -

try to stick with your current diet and make no changes for the same amount of time -

it sounds like a flare, just different than previous flares - that happens - sounds like you just had a slight hiccup and you just need a little help to get back on track -

what was your diagnosis & when were you dx'd ?
Posted 3/15/2017 11:20 AM (GMT 0)
Everyone wishes the path to remission was a dragstrip with a fine-tuned dragster at the ready and a professional driver at the wheel. The reality is the path to remission is more like a cross country road trip in your dear, beatup old vehicle with 250,000 plus mileage, the check engine light permanently on, and duct tape holding together a few choice body panels. You think you'll get there, given there might be a few breakdowns, and you better stay off of the highway as you no longer entirely trust that hood latch to do its job (at least after the latest incident).

Just be prepared for the long haul, lots of ups and downs on the path to remission. Healing is a very funny thing, it's anything but a continual daily improvement. You might have random good days followed by 3-4 day stretches where you're a whole lot worse. Nothing more disheatening to think you're close to remission then have a rather rude awakening. So don't use day to day measures but rather week to week measures of progress.
Posted 3/15/2017 2:30 PM (GMT 0)
^ Very, very true iPoop... so sick of feeling sick; packing an "emergency kit" (Pepto - check; imodium - check; wet wipes - check) when having to go to an important meeting
Posted 3/15/2017 3:39 PM (GMT 0)
If you've stagnated too long then go for immunomodulators (imuran/azathioprine or 6MP). Just means it's time to get aggressive in treatment put that darn flare behind you. Afterall we've all got lives to live and can't be in a UC-created purgatory forever.
Posted 3/15/2017 3:41 PM (GMT 0)

soynomore said...

UCIsolates said...
I am in the same boat! Taking lialda 3/day, I was in remission for 2 1/2 years. This past December, a flare up came out of nowhere. Could have been the stress of the holidays or poor diet (too much sugar, and leniency with gluten), but at the same time, my husband was battling some kind of stomach bug, that I thought I may have caught, but unlike his 48 hour bout, mine wasn't going away. It has been a mild flare....no blood, barely even diarrhea.....just mucus, sense of urgency, and tenesmus (feeling like I need to empty my bowels, but nothing). Went on prednisone 40mg, which helped, but got strep throat, and regretfully took antibiotics (I know better now), and all symptoms came right back. Managed to get some sense of normalcy by changing my diet (no gluten, grains, potatoes...basically SCD), started a probiotic, drinking apple cider vinegar every morning, and even making my own 24 hour fermented yogurt). Doc just wants to do another colonoscopy!! So frustrating. Can't really tell if this is a "real" UC flare, or something else! Started thinking I might have candida overgrowth in GI tract, or maybe parasites (symptoms would likely be worse though). Anyway, my brain is exhausted from constantly trying to figure this out- what caused it?! how can I cure it?!, etc!!! Just trying to avoid going on more, stronger meds! Afraid that Lialda just isn't working anymore!


call your doc, tell him you're upping the lialda to 4/day, and you need a script for mesalamine enemas - let him know that you will assess things in a month and decide at that point if a scope is warranted -

try to stick with your current diet and make no changes for the same amount of time -

it sounds like a flare, just different than previous flares - that happens - sounds like you just had a slight hiccup and you just need a little help to get back on track -

what was your diagnosis & when were you dx'd ?

Thank you for the recommendations! I was diagnosed with mild/moderate left sided UC in July 2013. My symptoms started while I was pregnant with my first baby...symptoms went away right after delivering, then about 5 to 6 months later, came back ten fold. Ironically, just had my second over the summer, and 6 months later, here I am again. Of course, my doc told me it has nothing to do with hormones or my diet. Right!! I have never used mesalamine enemas, but am definitely willing to give it a try! I feel like I'm so close to healing, and then I take two steps back! He did have me increase Lialda to 4/day, but it didn't seem to make a difference, so I'm back on 3, but currently tapering off prednisone. Only taking 10mg now. Feel like it's just sort of holding it off, and as soon as I stop, it'll all come right back.
Posted 3/15/2017 5:05 PM (GMT 0)
sorry, didn't see that you were on pred - so forget everything, you're screwed smilewinkgrin

do us a favor and put together a signature, listing all the pertinent stuff (excluding pet names, etc, ;-) so we can help with suggestions -

until then, how long have you been on pred, and what dosage did you start at ?
Posted 3/15/2017 6:58 PM (GMT 0)
Started with 40mg of prednisone, but the doctor only told me to take it for a week, which I thought was odd, but I guess he's trying to limit my exposure to steroids. Then tapered to 30, 20, now on 10. Left my Lialda at 3/day for now because prior to the prednisone, he had me increase to 4 Lialda a day, but that didn't do anything (was not on any steroids), and my insurance doesn't cover Lialda until my ridiculously high deductible is met, so they cost me about $670 per RX, so I told him that if taking 4 isn't doing anything, I'd rather not increase them right now. Thinking about going to a holistic or naturopathic route to see if they can recommend anything different.
Posted 3/15/2017 7:26 PM (GMT 0)
UCI - I know I've looked into homeopathic stuff... whenever I'm in a flare, I'll try anything (which isn't probably a wise thing) Unfortunately as I've learned - mostly through patient patients on here - a lot of this is about giving the meds time to work; remaining consistent with them; etc. I'm currently on 4 llialda a day and canasa 2 x a day. A week ago I thought I was pretty close to remission as I had a week of no cramps, no nausea, regular bowel movements - and just a little blood (which I attribute to the hemmi) Since Sunday I've been queasy, crampy, feeling like I have to go and only a little bm when I do. So obviously the flare is not completely under control as I had hoped...
Posted 3/15/2017 7:28 PM (GMT 0)
Do you have the lialda patient copay assistant card? If not then get it.

There's a generic called mesalamine DR in the usa that i get from my local riteaid pharmacy for just a $10 copay.
Posted 3/15/2017 9:04 PM (GMT 0)
Thank you!!! How have I not heard of this generic??!!! Is it new? I know I have researched generics for mesalamine! Definitely looking into it.

Jim- yes, I know exactly what you mean when you say you'll do about anything!! I had myself convinced that I might have a candida overgrowth in my GI tract, and I was pretty close to giving myself a coconut oil enema (coconut oil is a natural anti fungal that kills candida)....lol! The frustration and desperation can be overwhelming sometimes. I totally get it, and I'm sorry you're dealing with that feeling of hopefulness only to be crushed by the all too familiar feelings creeping back up again! I can completely empathize!!
Posted 3/15/2017 10:08 PM (GMT 0)
i prefer to use either caprylic acid or activated charcoal when i feel like an overgrowth of canada (you know how those northerners can be) is taking hold - i try to avoid sticking things up my hooter when possible wink
Posted 3/16/2017 2:49 AM (GMT 0)
It's fairly new, I'm on my 3rd or 4th bottle of it. Read about it when somebody else posted about its availability. Here's a link to the manufacturer's website with more info. It might help your pharmacist get it: www.zydususa.com/product-details/?id=216
Posted 3/19/2017 7:04 PM (GMT 0)
Thank you for the link. I'm going to ask my doc about it. I'm wondering if this is more similar to Asacol, and that might be why he hasn't suggested it, since Lialda users take less pills a day?! Just a thought.
Posted 3/21/2017 12:54 AM (GMT 0)
It's generic asacol hd, same 800mg tablet, and same 3 times a day. Althoughi take mine all at once, cuz there's no way i'll remember otherwise.
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