I haven't had any issues with burning inside, but I'm sure someone on here has and will reply to you.

I will say, however, that I totally understand the brain disconnect. I'm 2.5 months post-takedown and trust me, it gets better. It was hard the first few weeks, but once you get it down, you'll have it down.

Be patient with your body. You've been through a lot. I will admit, I still get impatient sometimes when something new comes up and I don't understand what's going on, but I have to keep reminding myself that this is new to me and there's been lots of changes since my first surgery....Life is good

First of all you are not alone. Being that you are only a week after take down I hope you are in contact with your Dr as they can give you some pain meds to alleviate the pain slightly. I find that when I have a lot of pain just inside my cavity that a hot bath helps. For me the symptoms mean that I’m having a fissure and or another attack of pouchititis. Either way you need to stop suffering and get you Dr to check things out

This is sounding disturbingly like anal fissure or at least irritation. This is inside the anal canal, and not the same as butt burn, which is similar to diaper rash.

It could also just be the early "trying to figure this out" phase, where your sphincters are in a constant state of pucker and throb. It lasted a few weeks for me. But the fact that it feels raw in there means it probably is. Call your doctor and explain your symptoms just like you did for us. A topical anesthetic ointment should help, and hot soaks in the bathtub too.

Some people find taking antacids or acid blockers help a bit.

Jan

These early weeks and months can be a real trial of your sanity and resolve.

Thank you so much everyone for replying.
I will call my Doctor today. This burn is 100 percent on the inside of my body. It is debilitating for several hours after it flares.
I wake up crying and often sitting in my own waste. Its humiliating for sure. My poor husband.
All of you need to know that you are so helpful to those of us feeling lost.
This journey has been painful and lonely and mortifying in many ways. So thank you.
For easing worry.

In the UK we have a product called Savlon. Not sure if you get it in US.

I wouldn't be able to function without it.

I too get severe irritation inside and it hurts like hell.

Savlon is the answer usually, it isn't for use for inside but with application to take care of the outside burn and fissures, I supplement this with Oramorph for when it is really bad.

Completely takes the pain away and after a couple of hours it has calmed down.

Oramorph is strong yes and it shouldn't be used on a schedule and regularly. However if used adhoc for breakthrough pain it is so effective.

Sometimes knowing it is there can psychosomatically reduce pain for me. Knowing that there is, when all else, fails a guaranteed relief can work wonders for the brain and more often than not that is enough to not need to use it.

Speak to your GP and explain the situation.

Alternatively, codeine is great for slowing bowel function and bulking up with also having pain relieving properties. 2 birds 1 stone.

I had the same problem starting out. The first two weeks I felt like screaming it was so bad. But taking hot tube soaks or a nice bath with baking powder or bath salts helped so much I do it almost once or twice a day since!

Thank you.
Seriously my family was ready to ship me back to Cleveland Clinic again in the middle of the night as we all feared something was terribly wrong.
Manchester, I found the Salvon on Amazon and have already placed my order. It was suggested to try calmol4 suppositories as well. Ever heard of this?
I have taken 2 warm baths today and have found some relief there. Why I didn't think of that one myself I don't know. I am still afraid to eat or drink much, but at least after reading your replies, I can be assured its not just me when my insides start to fry and I seem to lack normal voluntary control of excretory functions.
Jan, these last few months have indeed been test of resolve and dignity.

Until you go through this you will never be able to describe the discomfort to anyone else but we here on this site totally understand! Hope things get better soon, it is still very early in your recovery!

I don't know if anyone has specifically mentioned a sitz bath (it seems like "sitz bath" and "bidet" are now interchangeable terms in the contemporary jargon). I remember using one or the other when I had butt burn that was not as bad as yours, but it did soothe my sore butt. Here is just a sample of what you can buy:

http://www.drugstore.com/produ...param=goobase_filler

Keepitclassy,

I have used used the following with some success:

Calmol4 suppositories--does help soothe anal canal
Prep H suppositories
Vaseline (you can even insert a bit of this in the lower canal to protect the skin)
Prescribed canasa and anucort suppositories (prob not for you at this time esp if not diagnosed cuffitis)
Extra strength desitin (outer barrier)
Prep h wipes
Cocoa butter (outer barrier-very good)
A and D ointment
Topical cortisone for burning/itching
Squirt water bottle (like old plastic ketchup condiment bottle you can buy at grocery store) after emptying pouch to clear out anal canal (do not insert--just squirt water up into the anal canal like you would with a bidet)
Nidefipine(for anal fissures by prescription)
Baby wipes

The squirt water bottle is a Godsend and the calmol suppositories may really help. Also the wipes help too. The key is to make sure the anal canal is cleared of any residual stool after emptying the pouch as this will cause burning if not completely cleared out.

Good Luck. Hope this helps more than confuses. It really is a trial and error process for what works best for you.

It's been about 21 years since my surgery and I remember the burning and didn't know what to do about it. What it usually means for me is that I have stool that is acid-like (or feels like it) that needs to come out, and I have gas that seems to push it on my anus and burn. It feels much better when it all comes out. Sometimes it itches incredibly too, till I go. It must be whatever I ate. If you feel a burn or an itch, you should just go to the bathroom. Maybe smear something like Vasoline or Bag Balm (I use this--originally for cows udders but people can use it too) on your butt first if it's sore right on the outside. You can also wipe some Balneol on yourself (it's an "anal or vaginal cleanser" and it does not burn at all).

Same here after my takedown, I told my doctor it felt like I was crapping razor blades and wiping with gasoline.

I had a small fissure/tear that healed on it's own, and my Doctor said basically what others said. . .that tissue is just now starting to pass waste again. . .and that waste is more acidic and the enzymes that digest food are still active.

So part of the burn is like vomiting. . .when you feel your stomach acid dissolving your throat. . .but it gets better! I think after the 2 week mark it switched from butt burn to butt itch.

And then things get normal.

Hang in there!

Oh my gosh! Sorry to hear about that! I hope your pain has gotten better by now. I'm two months out, and for the first month, I had massive butt burn. Like pooping lava. Also, I had to go constantly and it was very painful. That didn't lead to a lot of smiles in the morning, as you can imagine.

But, a month later, I'm pretty much normal again - it will definitely get better for you too. For me, I started using metamucil (1 tbsp in the morning prior to breakfast with 4oz. water, and same at night after my last meal) and pretty much instantly my butt burn got better because the poop was thicker and less acidic. Don't know if that's a viable medical reason, but it sure seemed to work for me! Also, because my frequency went down, my butt burn pretty much went away too, and I stopped using the creams and gels. That might work for you too - I was pretty hopeless at the one month mark, and was surprised at how quickly it turned around. Also, you might want to check with your provider before doing that, because Metamucil is a thickener so if your intestines are still healing, you might risk a blockage. Not fun. They told me to wait between two and four weeks to do metamucil, and to just try it once in the morning and once in the evening for the first week. I have a history of bowel obstructions, so I waited the full four weeks to be safe.

In terms of pain management, baths, Calmoseptine and Vaseline, those B-sure things to prevent acidic poop from staying on your butt for too long, and non-alcohol wet wipes were pretty good. Also, sometimes I used to apply Calmoseptine about 1 cm in my butt because the burn felt it was inside my butt. Sometimes it made it feel better, other times just made it burn worse. Worth a try if the burn is bad. But I didn't really get better until my frequency went down from Metamucil/immodium at the 5-6 week mark. Good luck - hang in there - it'll definitely get better - first few weeks are by far the toughest.

Mine was back in 1977 but there are some things you just don't forget. I still get the burn based on something I've eaten and I keep something called Budreaux Butt paste in the drawer next to the potty. Its very soothing..discovered it when my daughter had diaper rash...I've also noticed that since my doctor put me on Protonix the frequency of the burn has been greatly reduced. Am also on a probiotic called Align which also helps...keep your diet bland for a while longer to give your system time to recover...your body has gone thru huge changes and needs time to adjust. Hang in there...these weeks will pass and you'll be able to look back and know you made it through.

KeepitClassy,
I just came across this post while searching for help on this exact problem. I had my takedown 14 days ago, and ive been going through an excruciating amount of pain on the INSIDE. It feels like fire coming out, and has caused the whole rectal area (whats left of it) to become swollen, making passing stool even more painful. Even if im just laying down, when gas gets to that area, it presses against the swelling and is very painful. It's really causing me to not even eat as much as I want because I know it will have to come out.

Since you were experiencinf this at the ti e of your post, did it get better??? If so, how long did it take? Thanks for the info!

(Also anyone else who experienced the inner burning your insight is appreciated!)

I am 7 weeks post takedown, and still feeling the same thing. I am wondering if my pouch is even filling up. i have no sensation of that, i just get that feeling really low like she explained

AllsWell,
so you feel the burning on the inside?

Yes totally, even the gas burns. I feel like whole inside is raw and sharp cutting feel.seems like things are getting worse. Before I had bad itching inside. Waking up a lot at night too. Everything feels swollen too, more so as the day goes on. It is uncomfortable to sit. I've about had it. Goof yo see if I can get an appt. soon.

I agree to check re fissure and to take hot baths. In addition, in the first few months I sometimesused vasoline on a q-tip and gently coated inside the anus when it was burning inside. It helped some. I'm pretty sure some foods made it much worse (for me, tomato sauce and red peppers - they are ok now).

All those creams and stuff will help-against advice, I would put them up inside on the worst of days. It feels like you are pooping glass and is a hard pain to describe to someone who has never experienced it. Can't emphasize sitz baths enough-either in the tub or can get a little pan like thing you can fill and slip under your toilet seat lid, but beyond that is getting a spray bidet. My issues with internal burning and but burn decreased about 90% once I got a cheap, easy to install yourself toilet seat-style bidet (i.e. Bio-Bidet I-3000, under $200). It has more than paid for itself in me buying way fewer creams, wipes, ointments over the past few years.

I am also getting very frustrated with the burning pain. I literally dont eat for hours just to give myself a break from the pain. Definitely not healthy. I keep telling myself this is just a transitional period and that it has to get better. All I'm really eating is toast and eggs. When i decided to hace this surgery, i understood I'd be having a few more bowel movements per day, but none of my doctors ever mentioned that it would be extremely painful.

Dont want to sound too negative. My last post reads that way. I just am frustrated and hoping the burning eases up.

I ditto the bidet idea. Someone on this forum (wish I could remember who so I could thank him/her) suggested a Luxe non electrical bidet - attaches to the toilet. About $40 after tax and shipping from Amazon. It's brilliant.

Please dont lose hope....I had my jpouch surgery about a year ago and the only thing that bothered me was butt burn. Trust me it gets better. Sith baths do help a lot as well as some numbing cream. Never had butt burn 4 months post takedown. Not sure about the internal burning though. Stay patient and positive.

The internal burn could be inflammation from cuffitis. I experienced this months after takedown. Your surgeon can prescribe rectal meds after an exam if so. Warm baths really help also. I am four years out and still take warm baths at times to help with lower internal discomfort.

do you still experience cuffitis, are you on maintenance meds for it. I bet thats what I have. Did the cuffitis increase your frequency too?

Unfortunately the answer is yes to all three. I have chronic cuffitis. I often take Canasa but sometimes it further aggravates things. Cipro seems to help keep my cuffitis sonewhat manageable. I have learned to live with a certain amount of chronic pain, but you are most likely still adjusting. Only a very small percentage of jpouch patients deal with chronic cuffitis. If the pain is really causing grief as your surgeon to look at your anal region. Often they can diagnose cuffitis right in the office.

Ok i have some good news. I started taking one warm bath per day, and i bought a hand-held portable squeeze bottle bidetoffAmazon for 10 dollars. I use it every time i go at home, and then just dab with toilet paper to dry, then apply calmoseptine. This routine has actually drastically reduced the amount of burn. Sometimes there is no burn at all. It does still feel very sensitive in that area but I'm hoping to gradually see improvement in that too. So, it seems all the bidet recomendations are spot on for anyone else having this issue. And like i said, i just got a squeeze bottle for 10 bucks. The baths are definitely also a help.

A bidet would be of help to you and if you own your home you may want to consider looking into it.  I live in an apt, so I use the next best thing...a sitz bath.  It's portable, quick and easy to fill.  Even in the middle of the night, I'll set it up, grab a book and sit in it for 15 minutes, adding hot water as it cools.  It helps!

 

I hope you try it and that you feel much better soon.

keepitclassy, I felt the exact same way after my 1st takedown and whoever mentioned the razorblades is bob on. I never had signs of butt burn or anal fissure. After dealing with this pain for 6 months or so I became a shell of a person (not being able to eat, use my jpouch, work, function). Then a doctor in San Diego put me on Cipro and within less than 24hrs I could go to the bathroom completely comfortably. It was shocking.

 

The result of my situation ended up being a huge complication that I'm still dealing with so I'm not sure how closely our situations relate. I still don't understand what was happening to me, why the Cipro was prescribed and why it worked, but it definitely got rid of the ole' razorblade poop. Just a thought.

 

I hope you feel better soon!

I guess "Keepitclassy" may of resolved their butt burn issue by now; it appears their first and last post on this subject was nearly two years ago.

Eggs were not compatible with my new J-pouch.  You might try some different foods for awhile.  I found oatmeal to be a comfort food.  Bulked up my stool and helped it to pass easily.  Bagels, plain peanut butter, broiled chicken, well cooked carrots, etc.  Sometimes not eating makes things worse.  Your body produces acids anyway and they have nothing to mix with.  Ouch!  Glad the water spray helps.  I love my bidet!  Best investment I made.  Best wishes.

Haha. Thanks, Strange. I've started to notice the dates now. I'm a little new at this

Hey, I've been aware of the dates for a while  but I rarely check, just happened to notice this time.....

I guess due to personal experiences, we're all too eager to share our empathy.

Keep it classy, if you don't mind me asking what doc did you have in Cleveland? I have my second surgery this Thursday with Dr. Kessler. I can't speak for what your going through yet. But I did have a nurse explain to me at my last follow appointment something that stuck with me and made a lot of sense. He said. Hold your arm straight up in the air for 2 weeks, then try and bring it down. It would totally suck and take some time. That's the same thing going on in side of us. Our bodies have been used to the same thing almost our whole lives, and now it's trying to do something totally different. Hopefully all you need is just a little time and it's nothing wrong. Just don't be impatient. I just found this site too and have learned a lot about stuff that can happen and really what to watch out for when my surgeries are done. Good luck to you!

Haha also just noticed the dates. Whoops!

I have the same exact issues. My takedown was oct 2014 and had terrible itching inside at my two week check up. Was told it would go away . Not really sure why. Well, I am still dealing with it now and actually have an appt next wed to go in And take a look thinking that I have a stricture. It's now hard to go all the way, I go constantly but small amounts and always burning and itching. I too have started using Metamucil and have gotten some relief there. I use the water bottle all the tjme and calmoseptine. All the desitina and other creams was a waste of money for me and the prep h hurt so bad. I am hoping to have answers next week.