Hot tub soaks followed by cortisone cream or a an d ointment. tub soaks help the best.

Thank you, I've soaked, put ointment and took a pain pill. I've had this before but it's just not easing up at all! I'm in tears

Keep the area as clean as possible at all times (toilet paper is not enough...get a squirt handle on your shower or even a squirt bottle of warm, soapy water (liquid glycerine soap works best) and wash after each and every empty out)...no joke...then use whatever ointment or cream works best for you...you may even want to try and anti-fungal powder (like a medicated baby powder or gold bond etc)...it is usually one of the culprits along with whatever you are/are not eating and the state of your stools...sitz baths 2 or 3xs/day are great too...
Hang in there
Sharon

Thank you! It hurts so much. I need a squirt bottle!

Ohhh, I hate the burn! It's the worst - I've found that lidocaine before going to the washroom, then voiding, then sitting in a hot sitz bath for about 20 minutes, followed by drying off extremely well and applying whatever cream works best helps.

When my stool gets very acidic I try to bulk it up a bit (white bread, rice, bananas) - so long as it doesn't cause any straining.

Good luck, I hope some relief comes to you. I'm sending you positive healing vibes

Thank you poucherInTO. It has been a long night, and it continues. I've been bleeding unusually more yesterday and throughout the night, confused?

Hi livedby2,

Ask your doc for script of nefedine based solution (mixed with petrolium jelly). This will stop spasms of the sphincter. Also, ask about getting this in combination with Cipro and Flagyl. These 3 drugs will help immensely.

You can also try digestive enzymes as well as avoiding nuts, and dairy products.

Good luck!

Contact me if you have any questions.

Cheers,

Solomin

Just got back from the doctors. He put me on metrozetinol (sp), asacol, canasas, and a gut relaxer at night. Continue with prednisone, lidocaine cream, and ointments. He wants to talk with someone from mayo clinic for pain, since I really haven't been completely pain free since my takedown six months ago. He us talking about pain injections in the anal area!? This should numb the pain he says!?

Maybe he is talking about botox. It is pain treatment. I still recommend nefedipine cream as it is inexpensive along with Flagyl and ciproflaxin. Not sure you need prednisone, but your doctor knows your file better than me. I think metrozetinol might be flagyl.

Good luck!

Solomin

Thank you! I'm going to mention the cream to him. The steroids are for my adrenal glands, which are not working correctly as of my second surgery.

Questran is a med that binds the acids in your stool and bulks things up a bit. When I had a suspected fizzure and horrid spasms and pain, it really helped me turn the corner. the acid was preventing me from healing and hurting horribly when I emptied. Ask your doc about it.

Also, I'm not sure I would want to continue with a GI who brushed me off so rudely.

When my burning butt and pain is really bad and I am tired of getting in and out of the tub I tried a heating pad. I put my cream on a maxi pad and use the heating pad. It is very relaxing. I love this the most and hardly do the tub anymore. Maybe it will help you out. I sure hope so. I am sorry you are in so much pain.

You are NOT going to want to hear this, but if you can get through this, it may offer you some hope. I am two years since take down next month and I have only had real relief from the anal pain and burning for about the last three months.

I had a solid year and 1/2 of continual, constant pain, burning,itching, bleeding at times followed by constant suppository use (made things worse actually) and every cream imaginable. I was on antibiotics pretty constantly during this time and it did help, but every time I tried to stop them, the pain and burning would return. I resigned myself that I would be on antibiotics and suppositories for the remainder of my days (VERY depressing thought after having a surgery to supposedly cure me of colitis). I went to this board numerous times for support during this time. Just do a find on my name and you will see all my desperate posts.

Somehow, SOME WAY (by the grace of God), it was almost as if a switch went off. I have not been on antibiotics going on 2 months plus and the same with suppositories and creams. I can actually make it through a day without the CONSTANT nagging reminder that my anal area is in pain or burning on fire. I NEVER thought I would get to this point where I am actually functioning and not being ruled by my pain in the butt and not having it in the back of my mind 24/7.

My message to you is this:
You may be someone whose healing process takes longer than normal. Heck, for 49 years my body was used to having a colon and I was expecting it to adapt to no longer having one within months.....not years. You need patience, tenaciousness, humor,support,hope,faith and a shoulder to cry on when you are having a really bad day, and thankfully friends and family who will love you regardless. Finally, this support site will be a Godsend because people on here are caring, compassionate and have seen it all.

You have gone through a major body change and to people you look fine. Life goes on after a period of time and everyone expects that you have recovered and people move on with their lives after your surgery. Unfortunately, for many of us, we have not moved on completely since the traumatic change to our body and the only thing that makes things better is more time. It is very hard to believe this can be the case when we are suffering and going through this very trying experience. Many days I swore I was going to rip the pouch out myself (and may actually have if I could have).

I sincerely feel for you as I know exactly what you are going through and how you just want to throw in the towel with the whole process. Think in terms of weeks and months as recovery very well may take that long. Listen to all the great advice you will get on this site as some of the tips will definitely help you and your doctor's patience is needed at this time also. Finally, you may go through a long period of trying many things to help and some of my experiments included, but were not limited to wipes, squirt water bottles, hemmorroid creams, cortisone creams, prep h wipes, malox on tissue paper, tucks, nexium, tramadol, canasa, anucort, cortifoam, nifedipine, rectiv, augmentin, flagyl, pentasa, cipro, xanax, lomotil, immodium pepto bismal, vsl3, zinc oxide cream, vaseline, vitamin e cream, every diaper cream imaginable...you get the picture.

Good luck and God bless and I pray you feel better sooner than later, but have faith that you too will recover and move on and eventually you will feel better than you did before you had your surgery.

The Butt burn is the worst. It's almost 1 1/2 years since takedown and up until 4 weeks ago the butt burn was horrible.
I've tried every cream imaginable, painkillers (Oxycodone that's how much pain I was in) helped at night with sleeping pills too, but I still got up to rinse.
The burn was there from day one. It got so bad the skin on my butt would burn and peel every 3-4 weeks.The days were bad but the nights were worse.
My dermatologist tried 6 different creams, about 6 weeks ago he gave me a steroid hemorrhoidal cream which I believe started to help.
Someone also mentioned in another article to use cotton to keep the acid from leaking out (this is what causes the burn)
I put baby powder on the cotton, buy large roll not the little cotton balls(they don't work u need to size an amount that is comfortable for u and it takes a little time getting used to.)
The big help for me was getting rid of the burning skin around the anus and on my butt. My derm also prescribed some Eucerin cream comes in a little tub jar.
I put the hemorrhoidal cream on first and then the eucerin on top and on my butt and then stuff the cotton up there to keep the acid off my skin. I did this religiously and after 2 weeks I feel 75% better. The burn is still there but because the area has healed it's not as unbearable as before.
I am keeping my fingers crossed as this is the first real break I've had with butt Burn.
The surgeon who performed all 3 operations was going to inject steroids around the anal opening to reduce the inflammation.I'm hoping I won't need this now.
I hope I helped. There are times where I feel exasperated. It goes away. I think myself lucky, compared to others less fortunate.
Bidet is a must not an option get one.
I'm far from out of the woods still experiencing lots of gas and a bit of constipation which causes the gas and pain.
Some days good some days bad.

Stay strong

Grandmaof1
Jeane
Bossis

Thank you all for the advice and inspirational words. I am up tonight in severe pain and wish I could only knock myself out. I can't handle this kind of pain, it is one of the worst associated with have this disease and surgeries. I am making a list of creams etc... That everyone has mentioned and am going to try each one in hopes for some relief!

I've applied my creams, lidocaine twice now tonight, and the antibiotics, oh and the lovely asacal that has come right back out whole!! The canasas makes me cry, it makes the burn inside worse! I hope its just a small bump in the road and I too will see it subside soon.

To make tonight or this weekend worse, we are at my in-laws and they only have non hand held showers!! I need a bath to soak!

That sounds absolutely miserable. I am so sorry to hear that you are going through this.

Remember to dry very well after you washed the area. I use a blow dryer when I'm sensitive and sore and it really helps. Then, immediately after you've cleansed and dried thoroughly, apply a barrier cream so the stinging stool doesn't make direct contact with your skin. It takes a little time but is so worth it.

I also encourage you to keep you diet as bland and mellow as possible right now. i resorted to just broth and rice during those times and it helped. I also think you should consider seeing your doctor if this isn't resolved soon. Different people respond to different antibiotics in a variety of ways. I know some give me worse diarrhea. My sure-fire "go to" in times of unmanageable pouchitis is Cipro.

Take care and please keep posted on your progress. You will get this dialed in and will figure out what works for you.

I use to be able to pin point the foods that would cause this horrible pain, but it just seems out of my control! I think I am going to give my Dr a call this coming week again because he pit me on canasas, metrozetinal (so), asacal 800mg, and a sleeping pill... But my diahrea is now nothing but pure liquid! Must be one of the new medications.

I appreciate everyone who has and still is chiming in, hearing and talking with others definitely keeps the sanity.

SORRY you are going through this agony. Mine is under better control but I still have my days. I have actually switched from all the creams to baby powder with pure cornstarch in it. I wash the area well, dry well and then apply the powder. It seems to keep things drier so the area can heal. I was given that tip by someone on this site and haven't used a barrier cream since. I hope this helps.

Baby powder is something that has been mentioned a lot! I'm headed to the pharmacy this morning to find some relief. I desperately need it!

I understand , been there and done that! It is miserable. And just for a side note pure cornstarch found in a grocery store in the baking section works if you run out of baby powder. I was raw and sore and baby powder just dried everything up. I use it even now when I am not having any issues each time I have a BM, have a small travel size container in my purse I got at Rite Aide. I really hope this helps you.

Oh dear, this is so bad - I know just how horrible you must be feeling. You never think it's going to end. For almost 2 decades I've had the horrible butt burn on and off, many sleepless nights and what works for one person may not work for another. I don't have any additional suggestions for you, just wanted to offer you support and hugs. Hang in there

Holy I'm ready to try anything. Cornstarch is on my list. Why oh why do we have to suffer even after the surgeries. Thank you poucherTO for your support, everyone! I told my husband we are going to have to head home early from my in-laws, because I need to sit in a bath and they only have non hand held showers.

I have to admit I don't like to go anywhere for long periods of time because I have been spoiled by a bidet at my city home and one in our cabin in the woods!! Those along with the baby powder have made this j-pouch tolerable for me. Guess we all have our addictions and my bidets are mine

I didnt find a cure for the internal itch but the burning was taken care of with a tablespoon of metamucil after every meal. Made my stool solid and now the burn is minimal at best. Is your output solid or liquid?

Hi FXT. It is usuallly liquid with litlle pieces of soft stool or food that doesn't digest in it. I'm up for any advice and will try it to eliminate this ich and internal burn!

for me personally the liquid stool is what burns. As soon as I made it solid (playdoh) with metamucil, the burning almost fully went away. Play with the fiber doses and see what works. Maybe slow the system down even more with immodium?

OMG ! - It’s not just me ...

 

I had 30 years of UC & was forced to undergo a total colectomy in 2010 when advised of dysplasia 

 

Up until this point I enjoyed success as a senior sales director in major multi national organisations

 

I felt disfigured & ruined with a leaking bag that plagued my life & constantly ruined my employment opportunities as no one seems to appreciate a guy in a suit soaked in watery discharge

 

After a long period of depression my marriage collapsed as did my life

 

Having met a nurse this year who helped me face the next 2 surgeries, I was sure my life was about to change & boy did it !!

 

the first op left me with escoriated & burned skin around the temporary stoma site & was pure agony, the first indication of the  effect pure enzymes COULD have on bare skin

 

the second op left me with a gaping open wound where the escoriated stoma site skin was unable to heal

 

Since May my arse & insides feel like I am hosting an internal concoction of razor blades , needles & molten lava , triggered by an internal button which seems to invoke involuntary contractions & urgency

 

no matter what my diet contains I have these issues

 

my depression has once again taken over my life & the lovely nurse who I became so close to has departed as my bi polar behaviour ran off the scale as I tried to cope with the pain & disappointment that followed the reality of the surgery

 

I have no recollection of any medical advice that this common problem would turn my life upside down again, only indications of regularity not pain !

 

maybe I just don’t remember how bad UC was , but on reflection , for me this is this worst decision of my life

 

Until joining this forum I just thought I was either imagining & overreacting to my rectal Vesuvius & was alone in this acid hell

 

I have tried everything everyone has suggested & I so desperately need some release from these physical & emotional challenges

 

I wish everyone who has this “ J “ pouch the very best of luck , but would really like to inform those considering the procedure to fully research what may occur before comitting to the procedure

 

The doctors obviously hope to improve lives, but the daily pain can be so much worse that the bag .

 

Maybe the J pouch procedure could be nick named the devil’s acid house experiment

 

Surely with so many people suffering in this way for so long after the procedure, more effort should be taken to pre-educate potential recipients of this very real post operative condition

 

Either that or to help the consultants empathise, a long hot poker could be strategically applied throughout the day for a couple years to test their own resolve

 

Am I over emotional, kinda bitter & twisted ??

 

Guilty !

 

 

Final refection

 

If the colon is designed to process the output & remove the damaging enzymes ...

 

Why would any doctor expect the patient not to suffer pain & discomfort with a small intestine pumping watery burning fluids onto sensitive human tissue without a colon ?

 

If an ileostomy bag can seal & seperate the skin & output, then why can’t the point of exit be fitted with some kind of temporary or permanent plastic pipe or barrier which separates the output which everyone knows can burn from the skin which is known to react so badly to contact ?

 

If modern medicine can reconstruct a body to contain a j pouch, pacemakers and other amazing developments, surely it is time to work out how to incorporate an artificial barrier @ the end of the digestive system to make this procedure more manageable ?

 

I apologise in advance if my personal ranting offends - but Boy - am I fed up !

 

 

Have you seen Bo Shen at the Cleveland Clinic?

I’m in the UK - so figure your clinic is in the  US ?

The only thing I have ever found that works for me is ilex ointment.  It soothes the burning and forms a total barrier around the entire area. You can put it on broken skin and it prevents the burn.  I was absolutely miserable until I found it.  I order it online by the case.   

The original post of the this is almost two and a half years old!
But still relevant.

Questran.
I had old stock of this and started using it.
For now.  It does work.  Tiny bit of irritation after a day and a half of use.  I was told it binds with the acids and it  certainly does something positive.
I am going to see if it keeps working by using it everyday.

I hardly ever need anything or have burn.  I have no special dietary restrictions. I wonder why some continue to do so through their lives and some don't? 

If I'm irritated with these days, it's generally the fistulas fault vs true "butt burn."  If I keep it under control with prednisone, things are good, though, mostly.

You are fortunate.

I never have butt burn either, also with a completely free diet. I was careful for the first year or so. If I eat very spicy food I get the same effect as before the J-pouch surgery (spicy on the way out, too), but it never really goes beyond one BM, or two max.

 

I was fine for years before I got my bidet, too, though I really like the bidet.

So sorry you're going through this. It's awful. My surgeon scoped and saw the severity of inflammation even with calmoseptine and put me on Welchol, a bile sequestrant. Bile burn is horrible. With no colon the bile wasn't being absorbed as it normally is.
That and some adjustments to diet helped tremendously.
Hope you get some relief!