I laugh/cry as I see the Calmoseptine ad next to this post.  That acts like pure napalm to me and only exacerbates the situation.  

I am sure it helps many; not in my case.

Mike, do you actually have a fissure? If so, there are more aggressive things that can be done. If you've tried nitroglycerine and nifedipine without benefit, then Botox injections might help.

If you don't have a fissure then Questran has helped some folks significantly.

Good luck!

Thanks, Scott.   No, no fissure; just the extreme burn.   Yes, one of the cremes I have does have nitroglycerin in it.   Helps a little, sometimes; other times makes it worse.

####I was wrong and/or not told about the fissure ####

 I'll look up this Questran.   

Thanks,

Mike

Ahhhh; yes, my General practicioner did prescribe this powder (Cholestermine; a first generation cholesterol drug).  It helped a bit.   The problem with it is you need a five hour window if you are taking other medicines as it will cause malabsorption of meds.   I was taking it about two years ago; on and off.

I'm in Japan now; it may be worth seeing if I can get it here as the benefit, now, would outweigh the malabsorption of other meds 

Thanks again!!

you want to talk about napalm...Witch hazel.... that stuff worked really well for me but holy god did it burn. burning sensation became less and less as time went on, few days but it def helped me

I feel your pain Mike.  I seem to suffer pretty bad butt burn.  it seems to be triggered by the types of foods I eat.  Unless I eat a very bland diet I get pretty good burning.  

I think it comes down to two things (at least for me)

First, I have sensitive skin and I believe the acidity of the stool.  If I eat binding food it seems to help (the stool is not as liquidy) and if I use creams (i use both Calmoseptine and Sensi Care Barrier).  

I also believe I naturally have a high amount of acidic gastric fluid.  I take a prescription for acid reflux to control this and it does seem to help a little (not as much as diet).  

That's my experience.  It definitely is the worst part of the pouch for me.  I find it especially uncomfortable at night.  

Good luck.

I suspect you have tried it but since you haven't listed it, I have to ask. I now use A&D ointment which by the way is also marketed and sold as a first aid ointment, and I personally find it seems to help heal the skin irritation that comes with frequent loose stools. I used to use Desitin as that was what my surgeon suggested, but that and Calmoseptine both I find to be less effective and simply messier than A&D. but I am cognizant that people have different preferences.

I wonder too if you maybe might try to add some soluble fiber, Metamucil or some similar type product to firm up stools and maybe that will help you. I used it for decades until I just got too lazy to keep doing so.

Mike, I'm sort of presuming that you use a bidet, since you're in Japan, but if you don't you might find substantial benefit from it.

Cholestyramine just requires thoughtful scheduling of meds. You won't have absorption problems as long as you space them apart adequately from the Cholestyramine.

Finally, if you don't have a fissure I'm not sure the nitroglycerine with give you anything but a headache.

metamucil works for me...

Yes, I'm almost 8 years out and I still get very bad butt burn/irritation about once a month (often coinciding with my menstrual cycle). It may be bad enough at times to be associated with bleeding, and the irritation persists for a few days, up to a week at times when it's really severe. Occasionally I think these episodes may in fact be hemorrhoids rather than butt burn/irritation.  It seems to be unaffected by diet.  Calmoseptine helps, as does swabbing with witch hazel (the witch hazel may sting for a second on immediate contact but this usually subsides almost immediately).  I often clean with witch hazel whether I have butt burn or not, as this seems to keep things in check.  I do think cleaning as thoroughly as possible helps prevent these issues.  I will also sometimes soak in an epsom salt bath if things get unbearable.

Although I don't often use them, many people swear by baby wipes over toilet paper, as TP can admittedly be very irritating, especially when you wipe as often as we do!

question about using Calmoseptine, once its applied does it get sticky? and if so if you are going to the bathroom a lot doesn't the toilet paper get all stuck in the cream and make a big mess?

Pouchomarx, regarding Calmoseptine, I swear by it. It's one of the few ointments I've found that really works for me, and I always have a stash on hand. I find it does not get sticky - however that also depends on how liberally you apply it.  Trying not to be too graphic here (but hey, on a site like this, how can we not be? LOL).... but you really don't need a thick layer; you should keep it in and/or around the area of the anus, rather than coating the entire insides of your buttcheeks, as the latter can in fact promote yeast infections over time. If you are worried about it feeling sticky, a dusting of baby powder over the ointment after you apply should keep it from feeling tacky and also prevent it from transferring on your undergarments.  Calmoseptine seems to hold its consistency pretty well. In comparison, I found that Desitin tended to get very watery once applied, and was messy to use. I didn't like the odour either. I haven't had issue with Calmoseptine being messy  unless I accidentally happened to apply too much.  

Recticare cream OTC is 5% lidocaine. May give a little sting at first, but numbs things pretty well. Better than the 2% lidocaine gel I was prescribed, though it's costly (~$25/tube).  Also like A&D, bag balm, and Burt's Bees non-petroleum ointment. 

I use Balmex cream or Licocaine 3% w/hydrcortisone acetate.  I just stay away from anything that is spicey  and hot  and vegetables that are gassy also anything that has a large amount of fat like ice cream and even yogurt. If I eat to much cheese I also have a problem.  So I normally stay on a pretty bland diet.  I do eat plain cookies which I usually make so not to add to much sugar.  I make a lot of different soup and snack on eggs or peanut butter for protein.  I do go back and forth with gluten free. If I stay on that coarse I usually do not have that many problems.  I also take protein drinks and vitamins and do a little exercise ever morning. I do take vsl#3ds every morning after eating  oatmeal with the protein and l tbs of coconut oil in the mix. I have been cutting back on the antibiotics at night.  If I feel symptoms I start the antibiotic.  I still haven't been able to gain weight but it doesn't bother me anymore.  I have also been trying to eat healthy with the foods that I can tolerate. It took me a long time to get to where I am.   I am not saying that I have no problems but I am much better than I was 5 years ago I thought it would never end. I am wishing for everyone to get to that point .I also like and occasional glass of wine but have to be very careful with wine. 

wishing you all good health   Grace

.

I take Prilosec, one in the morning and one in the early afternoon.  I use Sensi Care Barrier cream if I eat something spicy, I slather that on after a burning bm and any time I feel burn begin or itch begin.  I use fragrance free wipes in lieu of toilet paper.  I don't have much problems with butt burn at all and I have super, super sensitive skin!  Good luck to you!  This is a well informed group and I know someone here has the combination that'll work for you!

Nora

Thanks to everyone for their input.   I concede it has been a tricky problem and various solutions have not worked for me. Sometimes it will get really intolerable and then just pass on its own.   I've tried keeping food journals, but haven't been able to identify a culprit(s).    Eating out at Italian food places does tend to result in problems (olive oil, tomato sauces, ???); but not everytime.

We have bidets in our bathrooms.   Though, sometimes even the water jet stings and aggravates the situation (though better than wiping).    Fasting has always been my go-to solution to at least get temporary relief (even pre-pouch).  Obviously, that is not a sustainable solution.

There has been some good information offered and solutions I haven't tried yet; but will.    I, sincerely, appreciate it    Only you people can truly understand what it is like!

Thanks and I'll keep you posted.

Mike

Confirmed anal fissure (pretty wide and long) upon exam by surgeon today.

He prescribed some Japanese mini-enema type cream with a strong steroid and Lidocaine.  I just applied it and it doesn't sting.

Bottom line, I have what he called 'irritable pouch syndrome' with chronic mild-moderate pouchitis.   Not enough Pouchitis to explain the symptoms of 10+ watery movements a day  (3% of Pouchies according to him); must control the diarreah with tincture of opium.  It's the only drug which slows things down for me.    He does not recommend an ileostomy as long as there is a drug which can slow things down.   Lomotil doesn't exist out here......I had mixed results with that anyways.

I traded irritable bowel for irritable pouch....they basically can't explain it!!!

Thanks for everyone's continued input.

Mike

Scott; you had the right idea.   He didn't mention it in the Pouchoscopy exam.  

I pointed to the spot today.   Language barrier????

Ouch! In no way is a fissure comparable to butt burn!! Absolute misery and I see how Calmoseptine would be like napalm. Like lemon juice in a paper cut! If the lidocaine/steroid cream does not work for healing (those usually do not promote healing, but just reduce the pain), ask about nitroglycerine or nifedipine cream. These increase the local circulation to promote healing. Hot sitz baths several times a day are also useful. And yes, thickening and reducing your output should help, by reducing the straining.

Good luck!

Jan

ive heard that nifedipene cream is great, nitroglycerin is an older but also in theory effective therapy too that I have heard others have success with.

curious that Japan which I believe has very strict narcotics laws, prohibits Lomotil but has tincture of opium? I think Lomotil opiate component is somehow chemically locked off. but that's mere conjecture on my part and knowing nothing but the name of tincture of opium even more conjecture.

have you tried soluble fiber to help thicken output? I did for decades but then just got tired of doing it, but am thinking about returning. my stools are loose 89% of the time. using A&D almost routinely at any hint of irritation seems to keep the fissures at bay for me.

yeah as I get older and my jpouch gets older I wonder if my trade worked out too, but I did have a couple of decades of reasonably improved QOL without daily meds etc. I do not have the pain or urgency I had before. so that's something.

Oh, yes; the opium prescription is quite difficult to obtain.  It took several visits, multiple other medications and escalation to the top specialist in this field.  Six months of diarreah!!

 At that, it can only be for a two week supply which will require bi-weekly hospital visits to refill.  It truly was a last resort.

My wife and I are finding (she has high blood pressure) that many US medicines simply don't exist here.

mike

My surgeon told me butt burn and itching (frequently at the same time!) is usually exacerbated by leakage/seepage even if we can't see it!  So, trying to thicken things (I eat oatmeal at each meal for awhile and/or take Metamucil once or twice a day) to thicken things up.  I also use Calmoseptine and I make sure to include placing some inside just a bit, as well.  It may burn at first but seems to really soothe and heal my irritated skin.  After a few days I'm usually good to go for quite some time.  Typically, I can eat anything/everything without a problem.  So, when the itching/burning sets in I intervene immediately!  I do have a bidet and swear by it!  My takedown was done in 2002.

Had my J-Pouch done in 2001. I had been suffering with the "Butt Burn" since that first bowel movement till this year, 2016. So much so I should have bought stock in Calmoseptine considering how much I've been through. That never really cured the pain at all. After all those years I purchased a simple attachable bidet system for our regular toilet. Nothing fancy, has a dial you turn to clean you and one that cleans the spicket. Thought cold water would be a problem , but its a God send. So, I'm pain free after all those years for just installing that. Felt really stupid that I hadn't done it sooner.  Downside is you can't take it with you when your out. My next step is a collapsible portable squirt bottle for that application. I know they make them. I'll tell you, its been the difference of night and day.