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

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Posted 10/16/2014 4:39 AM (GMT 0)
Hi,

I had a moderate flare about 2 months ago, and have been able to recover (through a course of Pred) to what I would call a "simmering" mode. By this I mean, mostly watery stools, with the small traces of blood on the tissue paper in 3 out 10 wipes.

I have mostly maxed out the baseline medication, with my current daily dosage: 4g Pentasa, 3g Colazide, 1 application of Colifoam, 1g Pentasa suppository.

I wanted knock it out of the "simmer" with some more Pred, but my GI suggested it's not worth it given my "simmer" is limited to the last 5cm, and I'd already recently had a course of it. He also suggested staying in this "simmer" mode, would be better than moving to immunosuppressants when taking into consideration of the side effects. I agree with this, and do not want to move into these heavier drugs.

My question is, has anyone had any experience with getting out of the "simmer" after having mostly maxed out the baseline medication? Things including change of diet, probiotics, etc?

Thank you for your advice

Timmy
Posted 10/16/2014 9:09 AM (GMT 0)
Seeing as it's only in the last 5cm, how about steroid enemas? They work very well and very little gets absorbed into the bloodstream, so it's not dangerous like taking oral pred.

Seeing as you mentioned probiotics, you clearly already know that those are a good option too.
Posted 10/16/2014 12:54 PM (GMT 0)
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.
Posted 10/16/2014 1:26 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.

I'm not too bothered by the watery stools themselves, as long as there's no blood. It's just the idea that those 2 things are indicative of a "simmer" rather than complete remission sort of bothers me.

How have you found the steroid ointment and VSL#3? I am on Colifoam at the moment, is that the same thing as steroid ointment? What brand/drug is that? I also have VSL#3 sitting in the fridge but haven't taken it yet.

Are you considering anything else to put out the simmer?
Posted 10/16/2014 1:31 PM (GMT 0)
What's the dose on the Colifoam? Maybe you could try a steroid-based enema with a higher amount of steroid. Or, maybe try using a steroid suppository.

I agree that I'd want to knock out the simmer, due to concerns that it'll easily worsen, etc.
Posted 10/16/2014 1:32 PM (GMT 0)

malaika said...
Seeing as it's only in the last 5cm, how about steroid enemas? They work very well and very little gets absorbed into the bloodstream, so it's not dangerous like taking oral pred.

Seeing as you mentioned probiotics, you clearly already know that those are a good option too.

May I ask what brand of steroid enema are you using? I'm also ready using Colifoam, which is already a steroid.
Posted 10/16/2014 1:48 PM (GMT 0)

fruitgirl said...
What's the dose on the Colifoam? Maybe you could try a steroid-based enema with a higher amount of steroid. Or, maybe try using a steroid suppository.

I agree that I'd want to knock out the simmer, due to concerns that it'll easily worsen, etc.

Each application contains 90mg of hydrocortisone acetate. I am currently on 1 application a day.

Am considering moving that up to 3 times daily perhaps to put out the simmer. Wouldn't the suppository be the same thing as the foam?

I notice you're also taking probiotic. I've got VSL#3 sitting in the fridge, but not sure if it will really help or not.
Posted 10/16/2014 1:51 PM (GMT 0)

Timmy85 said...

malaika said...
Seeing as it's only in the last 5cm, how about steroid enemas? They work very well and very little gets absorbed into the bloodstream, so it's not dangerous like taking oral pred.

Seeing as you mentioned probiotics, you clearly already know that those are a good option too.

May I ask what brand of steroid enema are you using? I'm also ready using Colifoam, which is already a steroid.

I use prednisone liquid enemas; they've performed miracles for me. I don't know anything about Colifoam I'm afraid.

I also take VSL#3 but it has done nothing for me.
Posted 10/16/2014 2:11 PM (GMT 0)

Timmy85 said...

fruitgirl said...
What's the dose on the Colifoam? Maybe you could try a steroid-based enema with a higher amount of steroid. Or, maybe try using a steroid suppository.

I agree that I'd want to knock out the simmer, due to concerns that it'll easily worsen, etc.

Each application contains 90mg of hydrocortisone acetate. I am currently on 1 application a day.

Am considering moving that up to 3 times daily perhaps to put out the simmer. Wouldn't the suppository be the same thing as the foam?

I notice you're also taking probiotic. I've got VSL#3 sitting in the fridge, but not sure if it will really help or not.

I'm pretty sure my hydrocort enemas were 100 mg, so that's not a whole lot difference. It might be worth asking your doctor if there are any with a higher dose. Or, maybe an actual enema (liquid) would be worth trying instead of the foam, since the foam doesn't reach as high as the liquid enema. That'd be another thing to ask your doctor.

As for the supps, I thought it might be worth switching to a steroid enema from the mesalamine one (pentasa). If the inflammation is low enough, the supp might be more effective than the foam or liquid enema.

Really, I'm just taking stabs here - I'm not all that sure which treats the area up to 5 cm most effectively.

I tried VSL#3 and it actually made my symptoms worse. However, that's not generally the case, so it's worth a try. I take PB8 probiotic, because it's easily available to me.
Posted 10/16/2014 2:25 PM (GMT 0)

fruitgirl said...

Timmy85 said...

fruitgirl said...
What's the dose on the Colifoam? Maybe you could try a steroid-based enema with a higher amount of steroid. Or, maybe try using a steroid suppository.

I agree that I'd want to knock out the simmer, due to concerns that it'll easily worsen, etc.

Each application contains 90mg of hydrocortisone acetate. I am currently on 1 application a day.

Am considering moving that up to 3 times daily perhaps to put out the simmer. Wouldn't the suppository be the same thing as the foam?

I notice you're also taking probiotic. I've got VSL#3 sitting in the fridge, but not sure if it will really help or not.

I'm pretty sure my hydrocort enemas were 100 mg, so that's not a whole lot difference. It might be worth asking your doctor if there are any with a higher dose. Or, maybe an actual enema (liquid) would be worth trying instead of the foam, since the foam doesn't reach as high as the liquid enema. That'd be another thing to ask your doctor.

As for the supps, I thought it might be worth switching to a steroid enema from the mesalamine one (pentasa). If the inflammation is low enough, the supp might be more effective than the foam or liquid enema.

Really, I'm just taking stabs here - I'm not all that sure which treats the area up to 5 cm most effectively.

I tried VSL#3 and it actually made my symptoms worse. However, that's not generally the case, so it's worth a try. I take PB8 probiotic, because it's easily available to me.

I was on mesalamine enema previously, but after an endo, he suggested the UC was low, and better treated with the foam. I think I will boost the Colifoam to 3 applications a day.

Your experience with VSL#3 is exactly why I still have it sitting in the fridge, having bought it. I am cautious about it making my condition worse when I am trying to put it out.
Posted 10/16/2014 2:35 PM (GMT 0)

Timmy85 said...

Your experience with VSL#3 is exactly why I still have it sitting in the fridge, having bought it. I am cautious about it making my condition worse when I am trying to put it out.

I honestly wouldn't worry too much about that - I mean, I don't think that the VSL actually makes the UC worse. I think it made my diarrhea (so "symptoms") worse, but by another mechanism than worsening the UC inflammation. I only used it twice (stupid of me to use it the second day, looking back), and my symptoms returned to where they'd previously been the day after I stopped using it.
Posted 10/16/2014 8:02 PM (GMT 0)
VSL works great for me, although I am not in remission. The steroid ointment I use is actually something a dermatologist prescribed for me for Interigo in my anal area. It cleared that up just fine and I think it actually helps my UC so I continue to use it. It is nothing like Cortifoam, it's kind of more like a hemorrhoid cream. I live an almost totally normal life doing what I'm doing so I'm not sure what my next step is to work on that simmer. Doctor claims I have IBS which, if so, doesn't really have much of a treatment except for diet control and I have already done that with no benefit. I try some things from time to time but I have to be careful not to upset the apple cart. I've got some things spinning around in my mind but they don't include the stronger UC meds that you also want to avoid.
Posted 10/16/2014 8:47 PM (GMT 0)
What I've usually read about introducing probiotics is that you should go slow. Full disclosure - I am too chicken and have never introduced probiotics as such. I do try to eat yogurt with live cultures and I've recently started buying actual real fermented pickles with the same idea.

Have you also considered adding psyllium? This will help bind your stool, and is apparently an excellent PRE biotic. The good bugs like dietary fiber.

In your shoes I would ditch all the steroid rectal meds and stick with mesalamine enemas. It took me a very long time to get rid of my rectal inflammation, but it did ultimately go away. I spent a lot of time in that "simmering" phase.

In fact, it may be time for you to think about a GF trial, or maybe not. It took me several years of no blood or mucous to finally get so frustrated with the soft stool and diarrhea that I was willing to try a GF diet.
Posted 10/16/2014 11:14 PM (GMT 0)
Psyllium is a good idea with watery stools.
Posted 10/17/2014 12:03 AM (GMT 0)

garylouisville said...
VSL works great for me, although I am not in remission. The steroid ointment I use is actually something a dermatologist prescribed for me for Interigo in my anal area. It cleared that up just fine and I think it actually helps my UC so I continue to use it. It is nothing like Cortifoam, it's kind of more like a hemorrhoid cream. I live an almost totally normal life doing what I'm doing so I'm not sure what my next step is to work on that simmer. Doctor claims I have IBS which, if so, doesn't really have much of a treatment except for diet control and I have already done that with no benefit. I try some things from time to time but I have to be careful not to upset the apple cart. I've got some things spinning around in my mind but they don't include the stronger UC meds that you also want to avoid.

Please let me know what else you end up trying with the simmer and how that goes.

So for me, it looks like trying VSL#3 and upping the colifoam frequency as first steps. Might look at steroid enemas or steroid ointments if those don't work - I'm overseas at the moment so need to get back home to see my GI.

Psyllium I have just started taking 2 days ago, but it doesn't seem to have tighten up the stools yet.
Posted 10/17/2014 10:56 PM (GMT 0)
Are all of your stools watery? Or do the start solid and as you poop more over the day the go watery?

If you're having all wAtery bm's I find it hard to call that a simmer.

I found suppositories helped the lower rectal area more than the enemas. I wonder if it'd be beneficial to stop the enema and increase the suppositories throughout the day? The suppositories kinda sit right on that low section where the enema shoots right up there(making it great for uc higher up!)

I also find it strange that with only inflammation at 0-5cm you're having watery stool.
Posted 10/18/2014 12:55 AM (GMT 0)

toomuchpoopin said...
Are all of your stools watery? Or do the start solid and as you poop more over the day the go watery?

If you're having all wAtery bm's I find it hard to call that a simmer.

I found suppositories helped the lower rectal area more than the enemas. I wonder if it'd be beneficial to stop the enema and increase the suppositories throughout the day? The suppositories kinda sit right on that low section where the enema shoots right up there(making it great for uc higher up!)

I also find it strange that with only inflammation at 0-5cm you're having watery stool.

They are consistently watery as far as I can tell.

I have assumed the watery stools is the body's protective mechanism to the last 5cm simmer, to give it a smoother path down.

I'm not currently on the enemas, just the foam. If the watery stool is due to something higher up, maybe I should try the mesalazine enemas I have too and see if that changes anything. When my flare is at its worst, it goes to 20cm.
Posted 10/18/2014 3:28 PM (GMT 0)

kazbern said...
What I've usually read about introducing probiotics is that you should go slow. Full disclosure - I am too chicken and have never introduced probiotics as such. I do try to eat yogurt with live cultures and I've recently started buying actual real fermented pickles with the same idea.

Have you also considered adding psyllium? This will help bind your stool, and is apparently an excellent PRE biotic. The good bugs like dietary fiber.

In your shoes I would ditch all the steroid rectal meds and stick with mesalamine enemas. It took me a very long time to get rid of my rectal inflammation, but it did ultimately go away. I spent a lot of time in that "simmering" phase.

In fact, it may be time for you to think about a GF trial, or maybe not. It took me several years of no blood or mucous to finally get so frustrated with the soft stool and diarrhea that I was willing to try a GF diet.

Just to clarify, you were in the simmer stage (with no blood or mucus, but with watery stools) for several years. But when you switched to GF, you noticed the watery stools go away?
Posted 10/18/2014 3:31 PM (GMT 0)

garylouisville said...
VSL works great for me, although I am not in remission. The steroid ointment I use is actually something a dermatologist prescribed for me for Interigo in my anal area. It cleared that up just fine and I think it actually helps my UC so I continue to use it. It is nothing like Cortifoam, it's kind of more like a hemorrhoid cream. I live an almost totally normal life doing what I'm doing so I'm not sure what my next step is to work on that simmer. Doctor claims I have IBS which, if so, doesn't really have much of a treatment except for diet control and I have already done that with no benefit. I try some things from time to time but I have to be careful not to upset the apple cart. I've got some things spinning around in my mind but they don't include the stronger UC meds that you also want to avoid.

Can you be a little more specific about how VSL has been for you?
Posted 10/18/2014 8:03 PM (GMT 0)
Not sure how specific I can be. While at my worst I was going 20-30 times per day with lots of diarrhea, blood and mucus. VSL improved on that and then I also added various things to my regiment which also made me better and better. Now I go 2 - 5 times per day with solid stools, no blood, no mucus. It's not all due to the VSL but it is definitely part of the equation.
Posted 10/18/2014 10:05 PM (GMT 0)
LDN may get you out of your simmer, it worked for me very well.
Posted 10/18/2014 10:37 PM (GMT 0)
Timmy, I didn't have "watery" stools. I had soft stools. Like paste or just barely formed. Going GF completely resolved that for me.
Posted 10/19/2014 12:58 AM (GMT 0)
Full disclosure - I am too chicken and have never introduced probiotics as such.

I always wondered why probiotics were not in your signature. I thought you probably had tried some probiotics and had a bad experience. When I first joined this forum I noticed that gluten-free was working very well for you but you had not yet tried psyllium which later turned out well.

Probiotics work very well for many of us whether we are gluten-free or not. Not all strains are helpful for every individual, of course. Somebody on the Crohn's forum recommended Align which made me sick as a dog. Others here have problems with Florastor. But it is well worth it to find a formula that works for you.

Post Edited (IamCurious) : 10/18/2014 7:02:22 PM (GMT-6)

Posted 10/20/2014 5:18 PM (GMT 0)

laughingduck said...
LDN may get you out of your simmer, it worked for me very well.

Sorry, what do you mean by LDN?
Posted 10/20/2014 6:45 PM (GMT 0)
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.
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