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UC Simmering - how to get out of it? (after baseline meds maxed out)

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Posted 10/20/2014 6:50 PM (GMT 0)
IamCurious, I really don't want to add another thing to my IBD management plan, honestly. And I don't want to mess with what's working. So no probiotics for me, at least not now.

My GI wants me in for a scope this month so all of this might change if I get bad news.
Posted 10/21/2014 9:29 AM (GMT 0)

garylouisville said...
LDN stands for low dose naltrexone. It is a med which is fairly safe without any horrible side effects and is pretty cheap. Most docs don't believe in it and won't prescribe it as it is more mentioned as an option by the supplement people. It works in a select few but doesn't seem to have widespread success. The LDN people suggest you eat an SCD diet along with the med for maximum effectiveness. I kind of wonder myself if it is the dietary change which winds up being more responsible than the LDN. It might be worth a shot but don't bet the farm on it.

Thanks - will look into it a little more
Posted 10/27/2014 4:09 PM (GMT 0)

garylouisville said...
My condition is also a type of simmer and I'm not interested in more prednisone, immune modulators, or biologics either, although I have solid stools with usually no blood and never any mucus, just freguency of 2 - 5 times per day. I'm ok with that but I don't know if I would be okay with watery stools. Would the last 5cms actually be responsible for watery stools? Somehow that doesn't seem right to me.

Just an update, so after trying VSL#3 and upping my steroid foam, I have not been able to get out of the simmer. In fact there is some bleeding after wiping.

I am now considering going on a course of prednisone, as it has helped me in the past, although the time it takes to kick in is getting longer. I have had no physical noticeable effect from taking it, so I am wondering what the reasons other people are trying to avoid it?
Posted 10/27/2014 4:17 PM (GMT 0)
Here are reasons prednisone is bad: adrenal failure, bone loss, connective tissue damage, steroid resistant disease...I'm sure there are more.
Posted 10/27/2014 4:17 PM (GMT 0)
Here are reasons prednisone is bad: adrenal failure, bone loss, connective tissue damage, steroid resistant disease...I'm sure there are more.
Posted 10/27/2014 4:24 PM (GMT 0)

kazbern said...
Here are reasons prednisone is bad: adrenal failure, bone loss, connective tissue damage, steroid resistant disease...I'm sure there are more.

Can the impact of predisone on those side effects be measured/tested?

Is there a general rule of knowing what dosage and frequency of taking predisone will have minimal size effects (given a certain person's body weight)?
Posted 10/27/2014 6:31 PM (GMT 0)
I don't know. But the fact that your disease is not responding well to pred makes it seem likely that your inflammatory condition is resistant to this med. If you have trouble tapering off that is evidence that your adrenal glands have quit producing cortisol. The bone loss can be measured by test (bone density). Connective tissue damage is something that might become more evident later on.
Posted 10/28/2014 11:41 AM (GMT 0)
Don't know if this will be any help, but here's what helped me. I was in similar in low level flare, 10 cm moderate, occasional bleeding, urgency, 5-6 BM a day. Started a morning smoothie and for last 6 months now no bleeding, 2-3 BM a day, very little urgency, plus big improvement on c-scope.

Main elements of smoothie are kefir, psyllium powder, leaves (spinach or kale). I use almond milk to dilute it, and add frozen blueberries, but I doubt either of those make a difference. My guess is that it's the psyllium powder bulking up the stool and slowing transit. But I don't know, and I do know it seems to be working so I keep doing it.

Anyway, there's nothing there that I could imagine will hurt you, and it seems to work for me, so you might want to give it a go in case?
Posted 10/28/2014 2:14 PM (GMT 0)

PalaceDan said...
Don't know if this will be any help, but here's what helped me. I was in similar in low level flare, 10 cm moderate, occasional bleeding, urgency, 5-6 BM a day. Started a morning smoothie and for last 6 months now no bleeding, 2-3 BM a day, very little urgency, plus big improvement on c-scope.

Main elements of smoothie are kefir, psyllium powder, leaves (spinach or kale). I use almond milk to dilute it, and add frozen blueberries, but I doubt either of those make a difference. My guess is that it's the psyllium powder bulking up the stool and slowing transit. But I don't know, and I do know it seems to be working so I keep doing it.

Anyway, there's nothing there that I could imagine will hurt you, and it seems to work for me, so you might want to give it a go in case?

Really appreciate the input. Have just started green smoothies actually and already use psyllium and leaves as main elements. Has helped a little, but still seeing blood when wiping.

Is there anything else you can think of that would help when in similar situation?
Posted 11/18/2014 1:40 AM (GMT 0)

garylouisville said...
My condition is also a type of simmer and I'm not interested in more prednisone, immune modulators, or biologics either, although I have solid stools with usually no blood and never any mucus, just freguency of 2 - 5 times per day. I'm ok with that but I don't know if I would be okay with watery stools. Would the last 5cms actually be responsible for watery stools? Somehow that doesn't seem right to me.

My GI prescribed me Flagyl for the watery stools, and thinks there could be a bug that's aggravating my UC and causing it not to respond well to the set of medications I am on for the proctitis.

Worth a try?
Posted 11/18/2014 1:43 AM (GMT 0)
Just about anything is worth a try but with antibiotics you are playing with fire. Some respond to antibiotics well, or, you could wind up much worse. It's like rolling the dice and seeing what comes up. You either get lucky or you don't. Life is a gamble. UC treatments are all a gamble.
Posted 11/18/2014 1:52 AM (GMT 0)

garylouisville said...
Just about anything is worth a try but with antibiotics you are playing with fire. Some respond to antibiotics well, or, you could wind up much worse. It's like rolling the dice and seeing what comes up. You either get lucky or you don't. Life is a gamble. UC treatments are all a gamble.

My understanding is that the antibiotics will kill of a lot of the good bacteria too, could this make the UC worse?
Posted 11/18/2014 1:54 PM (GMT 0)
Sure. That's the gamble. If the antibiotic will kill off a pathogen that contributes to your UC you can get better. If there is no pathogen contributing to your UC or if the antibiotic kills off too many of the good bugs, you can get worse. The doctor is only taking an educated guess. It really is a roll of the dice. As Clint Eastwood once said, "Do you fell lucky today"? If you decide to give it a whirl I would take mega dose probiotics while on the antibiotics.
Posted 11/18/2014 2:40 PM (GMT 0)

garylouisville said...
Sure. That's the gamble. If the antibiotic will kill off a pathogen that contributes to your UC you can get better. If there is no pathogen contributing to your UC or if the antibiotic kills off too many of the good bugs, you can get worse. The doctor is only taking an educated guess. It really is a roll of the dice. As Clint Eastwood once said, "Do you fell lucky today"? If you decide to give it a whirl I would take mega dose probiotics while on the antibiotics.

Thanks
Posted 11/18/2014 3:43 PM (GMT 0)
Hi...i think before you use the flagyl, you should have stool sampling done. If you do have an infection, that's the only way you know.

If you are flaring...it's not a simmer. And i agree with others that 5cm won't be causing you diarrhea/watery stool every bm.
as well...I think you should try using the mesalamine enemas rather than more steroid. The enemas nightly and maybe a steroid supp during the day.

taking a fibre supplement will help bulk the stool and also help even out the peristalsis if the diarrhea is partly from your colon just overreacting like in IBS.

you could try another probiotic.

Hope you get morerelief soon.
Posted 11/18/2014 4:23 PM (GMT 0)

quincy said...
Hi...i think before you use the flagyl, you should have stool sampling done. If you do have an infection, that's the only way you know.

If you are flaring...it's not a simmer. And i agree with others that 5cm won't be causing you diarrhea/watery stool every bm.
as well...I think you should try using the mesalamine enemas rather than more steroid. The enemas nightly and maybe a steroid supp during the day.

taking a fibre supplement will help bulk the stool and also help even out the peristalsis if the diarrhea is partly from your colon just overreacting like in IBS.

you could try another probiotic.

Hope you get morerelief soon.

I am currently overseas away from home, so it's a little inconvenient for me to get a stool sample done. I just had some Flagyl sent over from home, but it's still on its way.

What else could be causing the watery stools do you think? I always thought it was my body's reaction to the colitis to allow it to move through that last 5cm easier.

Have tried mesalamine enemas, but they don't seem to be having much affect in this situation.
Posted 11/18/2014 4:55 PM (GMT 0)
I don't believe your analysis is correct on that. The watery stools are caused by inflammation in the colon, not by some kind of intelligent decision by your body to get past the inflammation.
Posted 11/19/2014 12:11 AM (GMT 0)

garylouisville said...
I don't believe your analysis is correct on that. The watery stools are caused by inflammation in the colon, not by some kind of intelligent decision by your body to get past the inflammation.

How does the the inflammation cause watery stools?
Posted 11/19/2014 1:46 AM (GMT 0)
Guys I am at a slight loss as to what to do.

I am definitely in a flare, with watery stools now moving to small amounts of blood when wiping.

I have pretty much maxed out most baseline medication, after having also come off a "moderate" dosage of Prednisone 2 months ago when I was in a bigger flare (started at 50mg, and reducing by half every 5 days. So 50mg to 25mg, 25 to 12.5mg etc).

My GI has suggested the last 5cm colitis is being aggravated by some bacteria, with which I will start taking Flagyl for. But, I'll most likely need to do more to get over this flare.


My opinion is to take another course of Prednisone, but for a longer period (Eg, 50mg for 10 days, 40mg for 10 days, etc). This way I can have a proper chance of knocking it out (I want to avoid immuno suppressants at all costs).

But my GI is mostly against this because he believes this last 5cm should not need to be treated with Prednisone, and that something else may be at play (i.e., the bacteria). More notably, he believes the side effects from further usage of Prednisone (and of course immune suppressants) out way the issues with the colitis not being in remission.

I am ok with not being in complete remission, but the concern is of course, that if I do not get on top of it, it will get worse.

Any thoughts? My plan now is to take the Flagl, whilst continuing on baseline medication I am currently on. If no improvement, propose the Predisone option to the GI again.

Post Edited (Timmy85) : 11/18/2014 6:50:37 PM (GMT-7)

Posted 11/19/2014 2:36 AM (GMT 0)
I'd try steroid enemas.
Posted 11/19/2014 3:00 AM (GMT 0)
www.healthgrades.com/conditions/ulcerative-colitis
Posted 11/19/2014 3:03 AM (GMT 0)

garylouisville said...
www.healthgrades.com/conditions/ulcerative-colitis

Thanks
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