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In remission, no drugs, but sometimes have mucus - thoughts?

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Ulcerative Colitis
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Posted 1/22/2012 10:02 PM (GMT 0)
Hi everyone,

I've been dealing with UC for 5-6 years now off and on (started as proctitis, and progressed into more substantial flare this past summer) and was was able to get myself into remission after using Rowasa for 6-7 weeks and removing coffee from my diet. I tapered off Rowasa and have been free of any meds for about 5 months now. Things are going really well, but I notice that I have had some occasional mucus for the past 3 weeks. I haven't had any blood since August or September.

I guess my question is: how many of you experience mucus when you're in between flares? Should I be concerned about this? Anyone think that any foods might be contributing to the mucus?

As always, I greatly appreciate all the input from everyone here. I'm very thankful to have found this community :).

Thanks,
Mark
Posted 1/22/2012 10:32 PM (GMT 0)
I guess occasional mucus should be fine as long as it comes and goes. I've seen some myself if I drank few beers I would see it for the following few days.
Posted 1/22/2012 10:57 PM (GMT 0)
Not to be on any medication at all while in remission is just asking for trouble, son. The lower doses of the mesalamines are purposed specifically to maintain remission. If you're lucky enough not to have this episode of mucous turn into something more monstrous, you'll be needing better guidance in the future than you've been giving yourself to date. I can't imagine that a competent physician would cut you loose like that.
Posted 1/22/2012 11:01 PM (GMT 0)
Mucus was my first symptom after a 12 year remission without maintenance meds. Blood and pain came months later.

Carlie
Posted 1/22/2012 11:20 PM (GMT 0)
Captain, I disagree with your assertion that I'm asking for trouble. My gastro wanted me to stay on a maintenance med for the rest of my life (asacol 4x/day I believe), and I chose not to take that route. The cost of the meds even with my insurance was over $100/mo for me (and asacol was the cheapest), I'm not interested in the side effects, and I've read plenty of people on this forum who have maintained remission for very long periods of time without maintenance meds. In fact, Carlie just noted experiencing a 12 year remission without maintenance meds. 12 years.

I'm new to the UC thing and would prefer to experiment and see what works for me before I just jump into swallowing pounds of pills every year. It seems that every case of UC is different, and though I appreciate your input I think you're out of line insinuating that I'm not competent enough to determine what's best for me.
Posted 1/22/2012 11:51 PM (GMT 0)
mark, has anything changed in your diet or lifestyle lately?? are you smoking/around smoke? i definitely think you can have u.c. and not need any drugs. my dad has it and has been drug free for 24 years, so it's DEFINITELY possible.
Posted 1/23/2012 12:08 AM (GMT 0)
Joanna, I actually did take antibiotics just before this began. They started me on Clindamycin, but after reading how it could cause problems for those with colitis I had my doc write a script for a z pack after 1 day of treatment. It seems that the symptoms started shortly after, so I suppose this is definitely a possible cause?

Good insight, surprised I didn't really think of that as the cause. It certainly seems possible and hopefully that means that this will end soon. And thanks for letting us know about your dad - that's really encouraging for all of us and I'm glad he's doing well!
Posted 1/23/2012 12:29 AM (GMT 0)
markb22,

Come back in ten years and tell me that you knew how to manage your UC better than your physician, son.
Posted 1/23/2012 1:01 AM (GMT 0)

Captain Ca-Ca said...
markb22,

Come back in ten years and tell me that you knew how to manage your UC better than your physician, son.

If he lasts 10 years without meds it's a win situation if you ask me.
Posted 1/23/2012 1:02 AM (GMT 0)
It's great that you're in remission.
I agree that the fewer drugs, the better. I don't know what the mucous means.

You should take a look at posts by InSoFla who is also in remission.

You should consider keeping inflammation under control by using natural things like slippery elm bark, probiotics and vitamin D3.
Also, pay attention to your body. If eating something causes problems, don't make a habit of it.
A little bit of inconvenience is worth it if you can avoid future flares.
Best of luck!
Posted 1/23/2012 1:09 AM (GMT 0)
Captain, stop calling me "son". It makes you seem that much more condescending and arrogant.

And no, I will not come back in 10 years and tell you anything because I'm not interested in maintaining a dialogue with you. But you can take it from Carlie (who remained symptom free for 12 years) or Joanna (whose dad has been symptom free for 24) that not everyone needs medication to obtain long-term remission.

My only point was that different things work for different people, and this is the path that I've chosen to try. If I decide in the future that I'd like to try taking some maintenance med, that's my decision. In the interim, I'll appreciate you understanding that you're not the preeminent expert on ulcerative colitis and leaving your pretension out of this forum.
Posted 1/23/2012 1:16 AM (GMT 0)
Thanks for the suggestions, Pat. Since this started I've been keeping a food diary daily to see if I can determine the cause but I'm not seeing any pattern as of yet.

I'll also look into trying the slippery elm bark. I see a lot of people mention this on the forum. I've been trying to add probiotics in the form of yogurt and the "Good Belly" probiotic juice, but I'm sure there's a better option out there - I really just need to put some more time into researching these.

Thanks again, always get good stuff from this forum :)
Posted 1/23/2012 1:44 AM (GMT 0)
mark, i definitely think it's the antibiotics. since antibiotic is anti-life, probiotic is pro-life. it must've killed most of your good bacteria, so replenish as much as you can with probiotics. what was wrong that you had to take antibiotics?

also, i'll give you a little background on my dad. he was diagnosed with U.C. at 23. he was in the hospital due to losing so much blood and major dehydration. he ended up going on prednisone for 6 months and healed. he hasn't had a flare since and does not take any medications. i think he is VERY blessed that his U.C. hasn't come back and i hope that i can follow in his foot steps once i get off my medications, too. he's 47 now and doesn't even have a good diet either. he's the typical meat and potatoes guy, smokes, drinks, but has a very physically demanding job. he goes to the doctor though and he's always fine. i don't get it, but that's what makes U.C. so unpredictable.

Posted 1/23/2012 6:11 AM (GMT 0)
Somedude,

"If he lasts 10 years without meds it's a win situation if you ask me."

Well, that's the point, isn't it. With self management, it sounds to me as though he might be having trouble making it through five months. After all, there's more to life than simply putting out fires all the time when something better is at least possible. Eventually a physician gets tired of being used instead of being consulted.

Post Edited (Captain Ca-Ca) : 1/22/2012 11:43:19 PM (GMT-7)

Posted 1/23/2012 6:29 AM (GMT 0)
markb22,

There's an old proverb in the legal profession concerning self-representation that goes something like this: "He who is his own lawyer has a fool for a client". I'll leave it to you to make the associations, son.
Posted 1/23/2012 6:55 AM (GMT 0)
Carlie,

"Mucus was my first symptom after a 12 year remission without maintenance meds."

I note that you're now on Asacol among other things. One wonders if you'd ever have had a flare at all if you'd been on it right along, eh?
Posted 1/23/2012 12:53 PM (GMT 0)
Markb22, Captain Ca-Ca, The point to my post was simply that mucus was my first symptom of flare after remission.

This flare is by far worse that my original onset. Im not gonna play, woulda, shoulda, coulda. Hindsight is 20/20.

Carlie
Posted 1/23/2012 2:59 PM (GMT 0)
In our situation mucus has always been a sign of a flare (we've been in a continuous flare situation for about 2.5 years with my daughter but with some "quiet" periods). Even when things were looking better and the mucus would go away, it would always return and then things would go downhill. I've mentioned this many times to my daughter's GI but she always comes back with "healthy people have mucus in their stools too". I think she just wants to believe that her latest concoction of meds is working until it's absolutely clear that it's not. So, it could be nothing or it could be a sign. I'd trust your instinct, as I know in our case it's a sign.
Posted 1/23/2012 3:05 PM (GMT 0)
I think you should as a profession. Not an "internet professional" but a real doctor.

My opinion is if it ain't broke don't fix it. A little mucus here and there isn't a big deal if that's the only thing happening.
Posted 1/23/2012 4:55 PM (GMT 0)

killcolitis said...
In our situation mucus has always been a sign of a flare (we've been in a continuous flare situation for about 2.5 years with my daughter but with some "quiet" periods). Even when things were looking better and the mucus would go away, it would always return and then things would go downhill. I've mentioned this many times to my daughter's GI but she always comes back with "healthy people have mucus in their stools too". I think she just wants to believe that her latest concoction of meds is working until it's absolutely clear that it's not. So, it could be nothing or it could be a sign. I'd trust your instinct, as I know in our case it's a sign.

 

That's messed up that stupid meds don't work for your daughter. It pissed me off too. There's a guy here at work, he's overweight, bad teeth, I've seen him eat and drink (I went to a bar with him), he has diabetes, he showed it to me, he has a machine with a wire stuck to his stomach AND he has UC. All he takes for UC is asacol and he's in constant remission lol. The way he eats, it would give IBD to half the planet, yet his UC is in check with just a couple of random pills.

 

Sometimes this disease can go away on it's on while doing nothing, or stay in remission with meds/diet, or always flaring. It seems your daugher and I share the same fate unfortunatly.

Posted 1/23/2012 5:04 PM (GMT 0)
I too would think the antibiotics are the culprit here. If your not taking a probiotic I would start taking one and if you are I would double or triple your dose for a bit till things subside. :) Gotta get that good gut flora back.
Posted 1/23/2012 10:11 PM (GMT 0)

Dsm4life said...
I think you should as a profession. Not an "internet professional" but a real doctor.

My opinion is if it ain't broke don't fix it. A little mucus here and there isn't a big deal if that's the only thing happening.

Yeah, fortunately that's really been the only symptom I've had since the summer and it doesn't seem to be getting any worse. I do have Rowasa enemas on stand-by, and if I had any bleeding I would begin using them again.

sherbear46 said...
I too would think the antibiotics are the culprit here. If your not taking a probiotic I would start taking one and if you are I would double or triple your dose for a bit till things subside. :) Gotta get that good gut flora back.

I've been drinking the "Good Belly" probiotic juice and eating lots of yogurt, though I really don't know how effective that is. I've also been reading everyone's suggestions regarding different "real" probiotics, and think I may give the Ultimate critical care a try... seems to be popular and I don't have to order it :).
Posted 1/26/2012 2:14 AM (GMT 0)
Hi mark22 I am also currently in remission and atribute it to rejuven x, vital greens, rice milk that I take in a shake twice daily. The rejuven x helps repare the bowel cells and it works for me I got it from a naturopath and it is made by bio ceuticals I think otherwise I posted more info about it on a link ages ago on how I got into remission in 7 weeks. I am scared of having to use antibiotics if I get gastro. Good luck hope you nip it in the bud but I am also gluten, dairy free, caffiene free, soft drink free, juice free and alot of other foods free as I use diet to control UC but am in remission and med free. Do what works for you, as some of us are luckier than others or perhaps we have our illness in different parts of our bowel. Our faith, determination and stricter regime with what we exclude or include in our diets, be it all different, and the path we have chosen, thank goodness is still our own choice.

mum of 3
Posted 1/26/2012 2:37 AM (GMT 0)
My mucous is gone after doing two things - not sure which helped the most. I started adding L-Glutamine to my twice daily. Metamucil and have cut back on gluten products. Hope that helps.






Diagnosed 29 yrs ago - taking Asacol 2-3x day
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