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I have read through just about every post regarding butt burn, however, I have some questions,
1. Does it begin - BB after step one surgery? I had my step one on Aug 30.
2. Is it painful? For me the pain last for a while, over 30 min, once I have a feeling there could be a discharge -
3. Once I discharge the mucus blood mixture the burn begins, is it normal? The pain eases off.
4. Does beginning to use Calmoseptine from now on and after my take down helps?

Please share any experience you have, I know BB comes as part of JPouch but I am not or was not sure that it begins while still on the bag, I'm making assumptions that is BB or should I look and talk to my surgeon about it?

Again thanks for any input and advice! I appreciate it.

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People over-state the severity of the irritation they feel after take-down, as their butt re-adjusts to stuff passing through it again. Really, it feels great. If you love pain.

The thing is, it's not just normal stool passing like before. I had it scientifically analyzed with a Hewlett Packard gas chromatograph with flame analyzer detectors (the turbo-charged model), and found the stool after take-down to consist of molten lava, broken glass, lengths of razor wire, barbed wire, and rusty thumbtacks.

I don't want to scare you.... just preparing your for reality. Have lots of Calmoseptine on hand. Lots. Ridiculous amounts.

And, if you can afford it, invest in a bidet toilet seat. Or, you can rig a bidet-like device yourself using a pump sprayer. I used one for a year or more.

The key is to get the stool washed off quickly with plain warm water and apply Calmoseptine immediately. There will be pain, but it will fade as scar tissue grows and you grow accustomed to passing molten lava.



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P
Last edited by PDXDavid
Uhhh... I think David's response is more performance art than reassuring advice...

"Butt burn" should not start until your j-pouch is hooked up and you're passing actual stool. The "burn" that people refer to comes from having bile and digestive enzymes passing through the anus -- these substances are more acidic than normal stool so they can cause a burning sensation and irritation to the sensitive skin in and around the anus.

If you are having irritation and discomfort now, before takedown, it could be a few things:

1) Are you having three steps in total or two steps? Do you still have your rectum? If you still have the entire rectum (in the case of a three step series), you might be having active inflammation in the leftover rectum. That can be painful and also result in needing to evacuate blood and mucus pretty frequently. I experienced this but it resolved after the second surgery when the rectum was removed.

2) This could be an unrelated peri-anal issue, like a fissure or hemorrhoids, in which case there are meds that can help with the pain, and you'll probably want to get it under control before takedown (because adding stool will only make it worse).

I would absolutely talk to your surgeon, butt burn is a normal part of the healing process *after takedown*. Right now there is probably something else going on and it's probably treatable. For clarity, if it were me, I would avoid calling it butt burn, since your surgeon may dismiss that out of hand ("it can't be butt burn, there's no stool") and just describe the pain you're feeling.
P
Liz, thanks soooooooooooo much for your words. I'm having 2 step jpouch surgery, yes according to the dr my rectum was removed. Now butt burn makes total sense, and it isn't what I have.
I have had 4 surgeries as now (colon removal, fistulas reparations) however, last surgery was to remove rectum since it had ulcerative colitis and doctor said is best if it comes out and build the JPouch with loop lieostomy. My take down is not schedule yet since it is too soon, I will see the dr Oct 10 and as you say, I won't call it bb since it isn't.
David, thanks for the technical lesson, it sure is informative.
Yes I have Calmoseptine at hand but I have not used any yet since I wasn't sure what was really happening down there for me.
Thanks!
P
Unfortunately "butt burn" is inevidable for almost all of us. I had my experiences of it up until about 2 months after my takedown. Is it painful?....YES!! I think David made it a little more graphic than you may have wanted to hear to the point where I actually cringed but he's right it is reality. When I experienced the butt burn on a continuous basis that was the time I questioned my decision on getting the surgery. You can't believe it as you are going through it but it does subside over time. The best thing to do is be prepared: wipeys nonalcoholic, calmoseptine, a spray bottle if neccesary. The calmoseptine is not only for healing purposes but stays on there as a barrier to protect your skin from the acid that will release on your next bowel movement. Make sure you pat your bum dry instead of constantly wiping this will help from making your skin raw. Do not skip meals as your body will release bile regardless whether you have eaten or not and from my experience the less you have in your system to absorb the acidity the worse it gets. Obviously stay away from acidic foods and fruit juices. After time your skin will "toughen up" and the burn will become virtually unnoticeable.
P
Thanks! I feel more informed and even prepare to ask now. Feeling ignorant and confused does not let me even think about what to ask. This is all very new to me. I never had any issues 46 yrs until I got real sick a year ago, diagnosed wrong and all just went down hill from there. Now, I feel I'm at a better place and looking forward to getting as much information as possible since being on the blind-side is not a good thing. Thanks for the input.
P

I resorted to using a numbing cream I got from my Dr. 

It's a prescription.  It was so bad.  I know what you mean. 

I had monkey button so bad I could barely sit down. 

Nothing worked but the cream would give me a little relief.  I only used it a few times.  

My pouch is gone now.  I have permanent relief.

 

I don't miss the BB at all!  And everything that goes with it. 

Mysticobra

"The thing is, it's not just normal stool passing like before. I had it scientifically analyzed with a Hewlett Packard gas chromatograph with flame analyzer detectors (the turbo-charged model), and found the stool after take-down to consist of molten lava, broken glass, lengths of razor wire, barbed wire, and rusty thumbtacks."

 

So glad I didn't have a mouth full of coffee when I read that......broken glass, that's classic.

As for the BB issue, I never got it.  I use baby wipes, and if a BM is unusually heated and prolonged, I'll just get in the shower and soap the crack up really good before resuming my day.  I'll use Calmoseptine if the skin starts feeling bumpy, but there's never been any pain or burn for me.  There was some "up inside the hole" itching for a few weeks after my DLI reversal, but at the 8 month mark that's gone.

S

Unfortunately, this is probably the worst part of the pouch for me.  I am 4 months post surgery.  For me it really is dependant on the type of food I eat.  a lot of foods cause the BB especially tomato sauce, chocolate and spicy foods (all of which I loved before).  

I read it goes away for other people but I assume it's the acidity of the foods I eat and the fact I normally have pretty sensitive skin to begin with.  

Hoping it does go away eventually...

B

Yea, it just wipes off.  A&D & Calmoseptine seem to be absorbed somewhat, but not completely.  They act as a barrier for the next BM mostly, but I'm sure they provide some relief as well.  I could never figure the Ilex out.  It doesn't dry, and just smeared around in my sweaty butt crack making it feel like I had leaked or something.  The Calmoseptine seems to be the best IMO.

S

I am 2 months post op ileostomy takedown (I have J pouch) and I have burning and itching really bad. I have read other posts that it goes away with time but it is just very discouraging having to go thru it. I see several people have posted to use Calmoseptine so I will try that. I just wanted to thank everyone who posted in this forum with suggestions...I am getting at my wits end with the problem

M

Davids response was a bit over the top but back a lot of painfull memories from  past 23 years . BUT one point he did make was about the BIDET. I just bought a hand held bidet from Canadian tire in canada and installed it boxing day.

Xmas is one of my worst times with BB BUT THIS bidet has completely stopped the burning. 

The CTC bidet is plastic and has some issues so I have  ordered two stainless hand held bidets from Amazon.ca. Hopefully they wont leak like the CTC plastic one.

hopefully no more need for zinc oxide, and no more but grease stains coming through.

 

 

 

G

I had no butt burn while wearing the bag, even with the mucous discharge. After takedown, the burn for me is minimal, but I don't use toilet paper, I use fragrance free wipes.  It also depends on what you eat.  I ate some bean dip with jalapeños and omg......fire in the hole!!!  I couldn't even sit on a chair because my butt was on fire!!  But, I use Sensi Care barrier cream which cools and heals rapidly, and makes all the difference in the world!!  As time goes by, the skin down there in your nether regions will toughen up and butt burn will be a distant memory.  I couldn't be happier with my pouch, I loathed the bag and don't ever want to go back to it.  Butt burn is a small price to pay in my book.  Best of luck to you, you'll be very happy with the pouch when you get it!

Nora

NS

props to David for the most entertaining and vivid description of buttburn ever!

I'm still laughing out loud.

fwiw, you'll have to figure out your preference for diaper rash cream or barrier or whatever you choose to call it. I started using Desitin as that's what my surgeon told me but truthfully the zinc ozide would leave residue everywhere, one time in the hospital they only had A&D ointment and so I was converted. ive also used Calmoseptine but for me don't find it as effective as A&D and I found it almost as messy as Desitin. Ive also used Aquaphor from the hospital too and wasn't as pleased. But to illustrate how preferences vary I have a friend who is happy to use Desitin but find A&D messy/too oily for her. ps Calmoseptine will leave your butt with a fresh minty feeling, think peppermint pattie but on your bum, hows that for appetizing? lol.

 

deweyj

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