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Is 80% the new normal?

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Posted 10/23/2013 12:41 AM (GMT 0)
I'm not in remission. I still have some bleeding daily and I have urgency issues along with frequency. I almost never sleep through the night without getting up for a bowel movement. I occasionally have minor accidents and once in a while I have an accident that is bigger than minor but not (so far) anything terrible in a very public place.

I have some solidity to my stool, but not a lot, really. I notice that things are generally better when I force myself to take that gross Konsyl but it's not a sure thing.

I want to get off of all steroids. I have an appointment with my GI on 10/29 to reassess my treatment, and I suspect that he's going to suggest 6MP.

But what if I decline and choose to live like this? Is this sustainable? Are there risks? It's a low level of problem for me, comparatively. It's like 80% of normal and that's how it's been for a while.

In other news, my boss wants to know whether if he has no bleeding, and one bowel movement a day, is he considered to be in remission if his stool is loose occasionally? I said I don't know. Do you guys? He's on 6MP now. I suggested that he might be able to tell that he still has a lot of inflammation if his stool is really skinny and he didn't know what I meant, so after I described it, he said he didn't think that was an issue.

Sometimes it's like we have two totally different diseases.

Anyway, what if I have a little bleeding every day? Is that dangerous? Do I really need biologics or immunosuppressants?
Posted 10/23/2013 12:47 AM (GMT 0)
the more/longer the inflammation, the greater risk of cancer. but 6mp has some cancer risk too. sucks.
Posted 10/23/2013 12:53 AM (GMT 0)

janey47 said...
I'm not in remission. I still have some bleeding daily and I have urgency issues along with frequency. I almost never sleep through the night without getting up for a bowel movement. I occasionally have minor accidents and once in a while I have an accident that is bigger than minor but not (so far) anything terrible in a very public place.

I have some solidity to my stool, but not a lot, really. I notice that things are generally better when I force myself to take that gross Konsyl but it's not a sure thing.

I want to get off of all steroids. I have an appointment with my GI on 10/29 to reassess my treatment, and I suspect that he's going to suggest 6MP.

But what if I decline and choose to live like this? Is this sustainable? Are there risks? It's a low level of problem for me, comparatively. It's like 80% of normal and that's how it's been for a while.

In other news, my boss wants to know whether if he has no bleeding, and one bowel movement a day, is he considered to be in remission if his stool is loose occasionally? I said I don't know. Do you guys? He's on 6MP now. I suggested that he might be able to tell that he still has a lot of inflammation if his stool is really skinny and he didn't know what I meant, so after I described it, he said he didn't think that was an issue.

Sometimes it's like we have two totally different diseases.

Anyway, what if I have a little bleeding every day? Is that dangerous? Do I really need biologics or immunosuppressants?

Janie, i'd recommend adding turmeric to your regimen, 2400mg 3x daily, thats my dose in capsules. That, or slippery elm, aloe vera juice, etc.
Posted 10/23/2013 1:07 AM (GMT 0)
Long term active inflammation, even what you perceive to be mild with livable symptoms, increases your colon cancer risk significantly. All decisions are tradeoffs obviously but I strongly believe the risks of 6MP, Remicade, etc are far less than the increased risk of developing a colorectal cancer.

Sounds like your boss is in remission but he should probably be scoped to confirm. Remember even "normal" people have loose stools once in a while if they eat something that doesn't agree with them.

As for feeling like you have two "completely different" diseases... you and I have the same disease but we don't even have the same internal organs wink Seriously though, I have an acquaintance who has incredibly mild UC and I feel the same way you do. Our mutual friends always encourage me to commiserate with him but I don't feel like our experiences have anything in common besides an official name.
Posted 10/23/2013 1:10 AM (GMT 0)
With urgency + bleeding you still have inflammation, which most gastros would consider an unacceptable longterm state. How long ago did you last get scoped & what were the results? / Old Hat (33 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 10/23/2013 1:13 AM (GMT 0)
I'm not understanding your question. You indicate you are on steroids but want off then ask if you decline 6mp and just live as you are. Does that mean you want to stay on steroids and live as you are? Surely you know if you get off the steroids then more than likely your condition will deteriorate from where it is now.
Posted 10/23/2013 1:17 AM (GMT 0)
Old Hat -- My last colonoscopy was in 2009. My GI thinks there's no reason for another unless/until there appears to be a change in symptoms. I don't know. I know that the rectal surgeon I saw recently was going to send my GI a note saying he thinks I need another one.

Stereofidelic -- I don't like slippery elm because it's hard enough for me to remember to take meds at the right time without also having to stagger them because the slippery elm would inhibit absorption, but I'll add turmeric. I've taken it before but not in that dosage.

Pluot -- thanks, I feel like I always get a helpful reality check from you :-)
Posted 10/23/2013 3:01 AM (GMT 0)
I don't think anyone has a clue about which path is inherently riskier for you and your colon - I got so use to blood it became a non-issue - certainly it's an indication of something amiss - but is it any worse than having a stuffy nose all the time ?
Posted 10/23/2013 12:11 PM (GMT 0)
I've often had the same thoughts.  I'm at a point (3-5 formed bms a day,mild urgency, bleeding) that yeah I could probably live with.  Ive learned to adapt. I just am in and out of the bathroom in the morning.  however, ive been like this since 2008 and everytime I  think I can live like this I know that it is bad to have this constant inflammation in my colon, that puts me at greater risk for colon cancer.  so because of that i have accepted trying the big gun meds.  im on imuran now and just starterd uceris.  still having urgency, but blood is gone.  before itried the big guns i tried every altenative thing that ismentioned here: scd, gluten free, free range, organic, slippery elm, l glutamine, aloe vera etc etc etc etc  with no luck.  so its all a trade off.  you can always try a med and if you don't like it stop.  good luck with your decision!
Posted 10/23/2013 1:10 PM (GMT 0)
Janey47, I've been living with the "80% is the new normal" for the past 1.5 years. As I've never known remission since initially being diagnosed with uc. I seem to partially respond to most of the uc meds, but no single med, or combination of meds have successfully put me into remission. Life isn't terrible, just 1-4 bms within 1.5 to 2 hours of waking up and then the rest of my day is normal. No blood, no mucus, formed to mostly formed bms, some variable urgency just after waking up. You learn to adapt, as you say, and know you limitations. In my case it means waking up extra early before going somewhere and waiting till I know I should be empty.

That said, don't be afraid to try all of the uc medications. I've recently started Remicade and I am giving it more time (had only 2 infusions so far), as it could very well be the one that finally gets me into remission. Everything carries risk but the benefit, in most cases, outweighs the risk. Would you rather suffer unnecessarily just because you are unwilling to try the next step in uc treatment, whether that is a new medication, increase in medication, or surgery in the worst cases? I am not. If there is a reasonable chance of improving my quality of life then I am game to try for it.
Posted 10/23/2013 1:24 PM (GMT 0)
To play devil's advocate, I think you would change your mind if 2 years from now you found out you were dying of cancer due to one of those harsher meds, such as Remicade or 6MP. If that were the case I don't really think you could use the argument that if you had done nothing you might have died of colon cancer anyway because colon cancer doesn't seem to be an issue at all until at least 10 years of having UC, usually closer to 20 or more. In that case, is it worth having 2 good years and then dying when you could have had 20 years before dying of colon cancer? On top of that, if you do develop cancer, your treatment will stop and you will be living your last months with both UC and cancer. It is really only worth the risk if you don't develop cancer from the meds.
Posted 10/23/2013 1:39 PM (GMT 0)
Gary you make it sound like getting cancer is imminent with uc, when the reality is it is a remote chance whether you are on the big gun meds or whether you are not. Those who are at greater risk for cancer, all of us with uc, are screened more often, thus increasing the odds such things will be detected early and intervened. I'd rather improve my quality of life know, than worry about hypothetical situations that may or may not occur down the line. If the big guns allow me to keep my colon then awesome. If the end result is my colon is gonzo no matter what, then I accept that whether it is due to cancer risk/or it found, or because none of the meds can control my disease then so be it. I am at least going to try to keep my colon; it's mine after all lol.
Posted 10/23/2013 1:46 PM (GMT 0)
show us the numbers gary - show us the statistics - all you talk about is how dangerous  and scary EVERYTHING is -

let's see some FACTS !

Posted 10/23/2013 1:53 PM (GMT 0)
You are right but if you extrapolate the facts into worldwide numbers instead of percents, tens of thousands of people will come down with cancer due to these meds or UC itself. While it may be an overall small percentage, tens of thousands of people is not a small number, especially if you are one of the tens of thousands. I'm just saying that if it should happen to you within a couple of years, you might think differently about whether it was worth the risk. I certainly empathize with all the tough decisions there are to make with UC and don't want to discourage people from going on these meds if they feel it is worth the risk but I do want to make people aware that even though the percentages of risk are small there are large numbers of people who will be effected and there are many more risks (some life threatening) with these meds than just cancer.
Posted 10/23/2013 2:08 PM (GMT 0)
it's called hindsight gary - ever heard of it - you wanna fret about the past or the future or you wanna live today ?

I for one don't go on any forum looking for regurgitated junk that's out there on the internet - numbers and scary statistics don't mean squat to me - I want to hear about what Heather has experienced or what the poop man does to help him make it through the day -
Posted 10/23/2013 2:12 PM (GMT 0)
As DB said, long-term inflammation is not a good thing as far as cancer outlook goes but I don't know whether that's a fearthat would drive you to change your treatment. In my opinion, if you're on steroids and you're having symptoms, you're probably going to have slightly worse symptoms once your taper off. You can't remain on steroids forever... I personally would prefer to get off steroids asap and start 6mp if that's necessary. I Have been in a great remission with 6mp, I go once a day, blood very infrequently, everything is solid. So many people are scared of 6mp but the safety profile at the doses we take for UC is very good and it's a drug with a long history of use. I could live with 80% but it would definitely impact the quality of my life. Worrying about urgency and accidents is not fun, I actually wouldn't consider myself to be at 80% if I had an accident anytime recently. I'd put myself under 40%. Even at my worst, I had one "accident" and it was more of a fart gone wrong. I think you need to be honest with yourself about your symptoms and your QOL and what you want as far as longterm treatment. Do you want to teeter on the edge of a flare up or do you want to control this? You also have to remember, treatments don't last forever, there may be a point where you're back in these shoes no matter what direction you choose. I wish you tons of luck in getting into remission.
Posted 10/23/2013 2:24 PM (GMT 0)
Heather as in me?

I don't experiment, I do what's in my signature....with success.


Taking immunomeds is a personal decision, and it's part of the regimen that's offered to UCers. There are risks with all medications with side effects that can affect us. My thoughts are to start at the bottom (literally and figuratively).

What about methotrexate to start?

Let me also point out that you already have had a run with cancer...maybe discussing medications with a cancer specialist might help you with a decision regarding choices?

What about adding another probiotic other than floraster such as the Reuteri that I and soystud are taking..worth a try.

Regarding your boss...what meds is he on?

q
Posted 10/23/2013 3:29 PM (GMT 0)
Yes some people did get cancer while on these medications: fact. However the actual rate of incidence of cancer from these meds may not neatly match up with the projected values taken from the clinical studies (which often have a very small sample size).

Pretty much every statistic I have seen regarding these drugs (immunosuppressants and biologics) and the scary side effects comes from a clinical study. Those clinical studies are often based on a small sample size (often hundreds or perhaps a thousand individuals in the few largest studies), and we are talking 1 or 2 people out of 500 who get cancer and those study results are then expanded to represent the larger population as a whole. That sort of thing works great when the sample size is large enough. However, when dealing with really small sample sizes, and one or two incidences, you risk the chance of skewing/over blowing the odds of something small when it is applied to the larger population (e.g., everyone who has uc in the US). That 1 or 2 people may have had other issues going on beyond uc. So, for example, do I trust the 6 people out of 10,000 get cancer figure when applied to everyone in the US who has uc: not entirely as I am willing to bet it is actually much lower. Another issue is the people who take part in the studies aren't truly random, instead they are often the sickest of the lot, those for whom none of the other uc meds work and they are participating in the study with hope the new medicine will work miracles for them. Ideally, one would have a much bigger sample size to make the model more reliable and accurate, and if the patients selected for the study were randomly selected rather than those being the sickest it would certainly help as well. I take the statistics as a guideline (incidence is rare) but think it is indeed rarer than stated in the studies.

I have yet to see statistics from GI offices, a state, or the country as far as the percentage of their patients that actually had cancer while on these drugs. Would be truly interesting and likely enlightening to see.
Posted 10/23/2013 4:01 PM (GMT 0)
"I want to hear about what Heather has experienced "

you know, like what you've done in the past to manage your uc -

not sure where the "experimented" thing came from -

oh well -

 

Post Edited (soystud) : 10/23/2013 10:04:52 AM (GMT-6)

Posted 10/24/2013 6:43 PM (GMT 0)
LOL..must have been because I read it on my phone. Experimented and experienced kind of look the same???

soystud....what exactly of what I've "experienced" did you want to know? Clearly I'm in another dimension.

q
Posted 10/24/2013 8:09 PM (GMT 0)
Quincy, I just literally laughed out loud. I googled methotrexate and look what came up first (swipe):

Methotrexate: MedlinePlus Drug Information
www.nlm.nih.gov/medlineplus/druginfo/meds/a682019.html‎
Methotrexate may cause very serious, life-threatening side effects. You should only take methotrexate to treat cancer or certain other conditions that are very ...

You guys, I really appreciate all your help in this. In reading your responses, I realized that somewhere in the back of my mind, I think that none of the drugs I'm on are doing anything, so stopping them would leave me where I am, which is obviously not the case (I'm mean, obvious once you guys point it out).
Posted 10/25/2013 7:23 PM (GMT 0)
Yes, I know.....as with all the other meds.

If you do go off all your meds, you'll find out one way or the other as to what worked and what didn't.

Hard place to be in...but if the mesalamine is one med that doesn't agree, then the Lialda should be one you could consider to taper off.

Were you on Apriso ?

Did you try the Rowasa SF?

What about butyrate enemas?

q
Posted 10/30/2013 12:06 AM (GMT 0)

janey47 said...
Old Hat -- My last colonoscopy was in 2009. My GI thinks there's no reason for another unless/until there appears to be a change in symptoms. I don't know. I know that the rectal surgeon I saw recently was going to send my GI a note saying he thinks I need another one.

Stereofidelic -- I don't like slippery elm because it's hard enough for me to remember to take meds at the right time without also having to stagger them because the slippery elm would inhibit absorption, but I'll add turmeric. I've taken it before but not in that dosage.

Pluot -- thanks, I feel like I always get a helpful reality check from you :-)

Janey, 6000mg of turmeric in capsule form (split up daily), away from meals ought to really help you. But you will have to be willing to spend some money on these supplements. I buy a $10 bottle of 30 capsules that lasts me maybe 5 days. It's costly, but effective and one study has shown its effectiveness for managing a flare in comparison to prednisone.
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