my take down surgery was in October 2015. It's almost July and I still have butt burn. It's hard to run around and do errands, take longs walks, sometimes just standing for a long time.. My butt burn starts to act up. It's frustrating! I feel like I can't do the active things I used to do without this bothering me. Any advise is welcomed.
For most of us it seems to go away over time. For some of us it persists, though folks seem to find a successful strategy to prevent or manage it. You don't say what you're doing about it, which would make it easier for people to suggest alternative approaches. Also, a search on this site will turn up an enormous number of ideas.
YES!!! I asked the same thing! My surgery was also in October 2015 I use a prescription of pure Lidocaine OINTMENT. NOT CREAM! And now I know when it's coming and I apply (mostly in the middle of the night). It when the frequency is high.
The Lidocaine does NOT Containe hydrocortisone or any other steroid. Lidocaine ointment / 5%. And it takes the butt burn away in a matter of mins. I put a pad on just so my panties don't get disgusting! I also stay in LOMOTIL and take it everyb4 hours. I am going to ask my surgeon about fiber wafers to thicken the stool. That helps. Good Luck!
is it Angela keys?... no check that Alicia Keys .....for a long time aftet surgery my butt was on fire !!! ...and for quite a while my best and most reliable treatment was a tub of Noxzema Cold Cream... get in the shower and put it on liberally...
I'm not a doctor or a nurse but I've never had anyone tell me that I shouldn't have done that and I never had problems from doing it and boy was it good relief...
Happily I can report that the problem does get better and better overtime course there are new issues to deal with which we all have our own special type it seems but give it a try....
Yes it does go away. I had to quit every cream as all of them caused burning. When I threw them all out and got a bidet..that did it...no more button burn. Like most of you, I bet, have a draw full of different creams you've tried, I tried them all.
I'm so sorry to hear that you're dealing with the burn. I hear you. My takedown was a little over 3 months ago. I had no real burn at the beginning, but a few weeks in, I was having just this debilitating burn that prevented me from leaving the house or going anywhere without a shower bidet. No amount of creme helped me. The only thing that seemed to help the burn once it started up was a pressurized stream of warm/hot water from the bidet, so I got used to the routine of 75% of my BMs using that when I finished, since I knew no matter what, my anal area was going to start burning pretty bad after each bowel movement. After washing, I'd dry the irritated area and let it relax, and when it was calm, I'd apply bum cream (I use the Baza moisture barrier). I think in the long run, the cream prob helped small cracks in my anal area to heal.
About 2 months in, I couldn't leave to go anywhere so I got a Rx for oral questran powder. If none of the topical creams have helped you, then this should at least have some effect. It reduced my burning BMs to only about 50%, and mostly in the evenings, since I'd take the powder in the morning (it interacts with many medications, so I had to wake up early to take those) and it would neutralize the burning for at least the first several through the day most days.
A little over a week ago, the burning magically stopped. I'm so grateful. I can finally use the toilet outside without fear of needing my shower bidet. I still use the Baza protective ointment before and after each BM to protect my skin, and I'm still on the questran. I will try going off the questran and see if the burning comes back. I wish you all the best and am so sorry you've had to deal with those so long.
I got my J pouch in 1990. I can't remember how long my pouch took to settle after surgery. I do know that smoking marijuana regularly helped it settle and I then enjoyed about 20 years without much pain and little discomfort. I was always going to the toilet regularly but my visits were very short and relatively pain free. I wasn't even using creams. About 5 years ago butt burn starting to increase and my toilet visits became much longer and more painful. I returned to a specialist for the first time in 20 years and he told me it was just wear and tear over the years. I used savlon cream and vaseline for a couple of years. As my condition worsened slowly I did get a bidet. Good move as it has helped and now I miss it if I have to use the toilet away from home. I have found that simple baby oil is now the best cream for me which is good as it keeps things from drying out and it is so inexpensive. I still enjoy a good quality of life between toilet visits. I go at 2 to 3 hour intervals almost all the time and suffer discomfort and pain for 10 minutes or so until I have cleared the gas and poop. Reading stories on this website has made me feel very fortunate and I wish all of you all the best going forward. I have stopped using marijuana a couple of times over the last 5 years with dreadful results so I have to say if you haven't used marijuana yet definitely give it a go. For me it provides many benefits. It is a very effective sedative and helps me pass wind and poop. A good probiotic also helps in this way. It also reduces pain, helps sleep, keeps me hydrated and keeps me eating. It reduces my blood pressure, increases my heart rate for about 20 mins after smoking then returns to normal. It definitely helps with my libido and just reduces stress levels as incidents arise during life. I worry less and don't become so aggresive when agitated. For me it has been a miracle drug.I realise being a mind altering drug that some will find it uncomfortable or useless or both. I repeat if you haven't tried it you have nothing to lose or fear given that we are living with such constant chronic conditions. I hope getting stoned has a beneficial effect for you.
Replies of first time users would be very interesting so please post
8 years and it hasn't stopped burning. Ilex paste helps butt it's expensive. I can't see spending money on a bidet since I can't take that to work with me. At home, really hot water in the shower soothes it for a while. After reading the above, I'll have to give the Baza and weed a try.
The heated water the bidet provides is the key. When I stay away overnight I usually start on the toilet but end up in the bath tub so I can apply warm water during BMs. I also think that a squat toilet is a better option if you have are able to squat comfortably. I will install one soon with a warm shower rose very handy.
I also like to take a hot shower just before bedtime for this reason.
Zinc Oxide works the best, try to find it in a paste form.
Any paste or cream that is thick is no good for me. I have enough difficulty pushing out the gas and poop( with the help of a finger) as is without any other restriction. What is the baza cream like. I will give it a go as I haven't tried it yet.
Calmoseptine has been something I use regularly. I also use aloe Vera. I take Imodium maybe 2/3 a week. The same as metumucil. I've already had a bowel obstruction, so being careful now. I love all your responses. Thank you for sharing what works for you and your journeys. And I do take Ediables(weed) they have all kinds in candy form that actually taste good. That does help my stomach and sometimes even the butt burn a little bit!! I just feel like I can't enjoy my life like before. I thought after the surgery things would be different as far as the discomfort. �� It sucks that I can't take walks, go sight seeing, or even exercise without it burning. Still trying to enjoy life because I've been in and out of the hospital for two years and now I want some kind of normalcy. Ohhhh and my bowel obstruction was a omg make this pain go away like yesterday!! Worse than having babies and kidney stone in my opinion! ������
The bidet helped me more than anything. I also have a small, hand held one for travel.
I use a bidet as well, but sometimes the pressurized water stream is like pressure washing the burned area. This happens on days when I have clusters of 5+ BMs within 20-30 minutes due to a prolapse (which will soon be resolved with endoscopic therapy by Dr Shen!). When the bidet is a bit too painful, I apply aloe vera gel to the rash with very good results and little residue as it dries or is absorbed rather quickly. This time of year I also find that applying a sparse amount of fresh canteloup juice or puree quite beneficial immediately after a BM or accident; the enzymes in the canteloup neutralize the acid causing the burning. Of course, this approach is not quite as tidy as aloe Vera juice, but does work much more quickly. I apply it either in a bath tub (shower) or use a sitz bath to soak for a bit.
The mild enzymes in the fresh canteloup also help heal the irratated skin around the butt burn area.
I had the surgery in 1995 and had no skin issues until a few years ago. It seemed to come out of nowhere and was miserable, red/raw. I asked my doctors about it (G/I, internist, dermatologist and even my gynecologist). A second dermatologist tried several things with me and finally sent me to an allergist. It turns out that I am allergic to tomatoes, as well as several other things!
I'd estimate that I am now 80-90% better. Three things that have helped me a lot:
1. I don't eat tomatoes although I still consume some of the no-no's that don't bother me as much, including black tea and chocolate - I'm willing to live with the irritation in exchange for being able to consume them. My overall skin is less irritated now that I have changed this part of my diet, although I never had any significant skin problems besides the perianal area.
2. I apply vaseline before I defecate. It acts as a bit of a barrier. (I tried Calmoseptine and thought it was miraculous...at first. After using it for a week or so, it started to break down my skin, making things much worse than my original problem).
3. I ideally take a bath (soak) before going to bed each night. Second choice is to use a spray attachment in the shower, again before going to bed. I was surprised how much this has helped.
BTW, I'm not suggesting that any of you are specifically allergic to tomatoes. I just wanted to point out that something beyond multiple daily bowel movements may be causing skin irritation .
Meli ... I had a small bowel obstruction which was than anything!!! In the hospital for a month! My weight went down to 83 lbs. ugh. Gained it back but I thought I was going to die!!!!!!!!
Issues.... But I'm grateful to be here with lots of LOVE ALL AROUND ME��
I truly appreciate all of you for sharing your suggestions, your experience, and tips that have helped you!!!
Of course MELI ... In this group I find tremendous support and really, where else are we able to be so open and BLUNT???!!! I mean I'm certainly not gonna post on Facebook how my butt is burning... Hahahaha .. Lol. We are all here to support one another! It's wonderful❤️
Well my takedown courtesy of UC was 1996 its certainly a road trip managing a J Pouch have not had butt burn for many years, every now & then i get a ring of fire. Two things I have learned ( I am going to be graphic here) - Must find a toilet paper that works not harsh & does not stick to your Butt . My choice is Kleenex Cottonelle in Australia - No sticky Butt . Also you must realise when you wipe/dab your butt be reasonably gentle - but if you leave any residue it is like acid.
So a warm watered soft wet face washer( no additives just water) rewipe gently & pick up any remaining residue around the rim & cheeks.
This will help.
I’ve also found, with toilet paper, it’s best to wipe from either, centre & out or across from one side, into the centre, then away on the other cheek, rather than front to back.
Wiping front to back is going against the grain, so to speak; wiping across of from centre out; is following the natural creases of the skin down there.
It’s also handy to have a tube ilex protectant paste on stand by.
I’ve had my j pouch since 2015 and I’ve never suffered from butt butt.
Update to my previous comment: I now swear by Critic-Aid Thick Moisture Barrier Paste by Coloplast. Reasonable price and it works! (not too thick)
In my case, butt burn has gone away. I had my final surgery in 2016 and I cannot remember the last time I had butt burn. I use Kirkland toilet paper and I have a bidet that I use occasionally. I’m not sure why I don’t and I don’t believe i’m doing anything special.