I had my takedown approx 6 weeks ago. I'm still going on average 10 -15 times per day and twice at night but my real issue ATM is excruciating butt burn. I know I have some cracking around my anus but some days ie not always, the burning pain is so severe I cry. Nothing I put on in the form of creams really help much. My questions are 1. Why does this vary so much from day to day and 2. Is it due to the acidity of my faeces and if so, what can I do to reduce this? I avoid citric fruits, drinks and all other foods known to cause butt burn. Would antacids or acid reducing drugs help? Help please !!
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I had butt burn on an extreme level the first couple months after takedown. It seemed like that its a big adjustment period and with the pouch and output of stomach acids. Mine was soo bad I wanted to yell at the top of my lungs and punch my bathroom cabinet as it was occuring. I said to myself if this is going to be this bad all the time I'm definitely opting for a permanent bag. Over time it got better not gone totally but better. I asked my surgeon about it if it would ever go away for good and he said unfortunately not but its less frequent and the skin around the anus starts to toughen up so it doesn't feel as bad. I don't know what you use for butt cream but I usual go to walgreens and take all 3 bottles they usual stock. It works well for me and doesn't get watery in the hot weather so you feel like your ass is wet all day. They also add menthol which give a cooling feeling. Some Luke it and some don't its all personal preference. Its definitely going to rely on diet to on which food have a higher acidity. Ive also noticed when I'm not feeling good and I choose to not eat for a long period of time I get it because regardless whether you eat or not your bowels release stomach acids so your better off putting something in there than nothing. Those are my words of advise. I had my takedown March 23rd.
Installing a bidet would be at the top of the list. The second thing I found helpful is baby wipes. They are much less abrasive than paper, plus they clean the area out quite well. The creams should become more effective once you have had a thorough, yet gentle cleansing provided by the bidet and wipes.
Hang in there!
Hang in there!
I agree about the bidet. It does get better over time, I am over a year out from takedown but still have to be careful about what I eat so I don't get the dreaded buttburn. If you can wash with warm water, maybe a squirt bottle or a shower and wash off frequently with ivory soap it helps alot. The key is keeping the tush clean and free of the acidy output you will have for awhile. It is a bad side effect from this surgery, but fortunately like I said it gets better with time. Good Luck.
Thanks for all your tips and hints, I appreciate just being able to chat about it with people who have "been there". I have a bidet and use it regularly and ir def helps but I'm worried about going back to work. I'm a dentist and so spend all day sitting and can't just rush off to the toilet at the drop Of a hat, mid treatment and also, no bidet there! I think I have lots of tiny cracks/cuts around my anus and as the day goes on and I go more often, the pain gets worse as these little cracks open up. I use baby wipes and there's often a little blood when I wipe.i guess it's just grin and bear it atm and hope/ wait for better days.
In the weeks after surgery, I've considered that butt burn at its worse could quite possibly be more painful than childbirth. It's no joke, and only those of us who have gone through this can begin to imagine...
Things that help me:
- Portable bidet. I use this at home and out, as I haven't installed a bidet at home. I could not live without it. After I go, I use this to rinse.
http://www.amazon.com/gp/produ...roduct?ie=UTF8&psc=1
- Water baby wipes. I order by the case. The solutions in some regular baby wipes will burn open cuts and excoriated skin. After I rinse with the bidet I use one of these to pat (not wipe).
http://www.amazon.com/gp/produ...roduct?ie=UTF8&psc=1
- Calmoseptine, Q-tips and a magnifying mirror. After every BM, after doing the above, I apply Calmoseptine with a Q-tip while squatting over a mirror. This allows me to get much better coverage, get the cream slightly into the anus and monitor how my skin is doing. To notice healing happening is encouraging. I think this could help protect and heal your bottom. Broken skin down there is the WORST! Healing should be your #1 goal!
http://www.amazon.com/gp/produ...roduct?ie=UTF8&psc=1
- Pepto Bismo (caplets). In my experiments with Pepto, it seemed to help take the burn out of my stool. I trialed it by taking it 3x/day with meals for a few weeks. If my butt burn reaches the point of excruciating again, this is likely what I will take.
- Diet. I've recently started the FODMAP diet. It seems to be lessening my miserable digestive discomfort (bloating, cramping, gas, nausea, high frequency, feeling ill), and this probably helps bring down my frequency a bit (though I'm still going 10-12x/day).
- Athletes Foot cream (Lotramin). I've been told by my nurse practitioner, and have also read on this forum, that sometimes the pain can come from an overgrowth of yeast around the anus. This usually comes with an itch. So every once in a while (esp around the time of my period), I use Lotramin twice a day for several days, just in case.
- Sitz baths. When the burn is really bad, and rinsing with the bidet doesn't relieve it, I fill up my sitz bath with warm water and sit in it for a few minutes. This often really helps.
My butt burn the weeks after surgery was horrendous. Fearing that pain was the only thing that made me cry throughout my whole experience from diagnosis, to surgeries, ostomy and all. But it has gotten bearable. I still have some burn, but with compulsively following my rinse-pat-cream regimen, it's in check.
I hope you can heal and get past the butt burn soon!
Things that help me:
- Portable bidet. I use this at home and out, as I haven't installed a bidet at home. I could not live without it. After I go, I use this to rinse.
http://www.amazon.com/gp/produ...roduct?ie=UTF8&psc=1
- Water baby wipes. I order by the case. The solutions in some regular baby wipes will burn open cuts and excoriated skin. After I rinse with the bidet I use one of these to pat (not wipe).
http://www.amazon.com/gp/produ...roduct?ie=UTF8&psc=1
- Calmoseptine, Q-tips and a magnifying mirror. After every BM, after doing the above, I apply Calmoseptine with a Q-tip while squatting over a mirror. This allows me to get much better coverage, get the cream slightly into the anus and monitor how my skin is doing. To notice healing happening is encouraging. I think this could help protect and heal your bottom. Broken skin down there is the WORST! Healing should be your #1 goal!
http://www.amazon.com/gp/produ...roduct?ie=UTF8&psc=1
- Pepto Bismo (caplets). In my experiments with Pepto, it seemed to help take the burn out of my stool. I trialed it by taking it 3x/day with meals for a few weeks. If my butt burn reaches the point of excruciating again, this is likely what I will take.
- Diet. I've recently started the FODMAP diet. It seems to be lessening my miserable digestive discomfort (bloating, cramping, gas, nausea, high frequency, feeling ill), and this probably helps bring down my frequency a bit (though I'm still going 10-12x/day).
- Athletes Foot cream (Lotramin). I've been told by my nurse practitioner, and have also read on this forum, that sometimes the pain can come from an overgrowth of yeast around the anus. This usually comes with an itch. So every once in a while (esp around the time of my period), I use Lotramin twice a day for several days, just in case.
- Sitz baths. When the burn is really bad, and rinsing with the bidet doesn't relieve it, I fill up my sitz bath with warm water and sit in it for a few minutes. This often really helps.
My butt burn the weeks after surgery was horrendous. Fearing that pain was the only thing that made me cry throughout my whole experience from diagnosis, to surgeries, ostomy and all. But it has gotten bearable. I still have some burn, but with compulsively following my rinse-pat-cream regimen, it's in check.
I hope you can heal and get past the butt burn soon!
I'm so tired of the butt burn..visited my surgeon he recommended "rinse Pat dry Pat. ." I've added cortisone and Vaseline. . It makes me not want to eat or drink..I'm warn out and trying to get it under control...I've also started Konsyl. .
21 months after my takedown I have finally figured out a near perfect fix the the ever so painfully butt burn.
LEMON WATER TWICE DAILY
I encourage you to focus on foods low in acidity but that's ridiculous quite frankly for so many foods you love are acidic so why deprive yourself. ..when you can easily help with an inexpensive lemon water fix.
Who naturally would think..Lemons..the mere thought of injesting anything you think would be acidic...
LEMONS..when digested are very high in alkaline and neutralize acidic foods and drinks..
THIS WORKS!!..
Here is a link worthy that may be of interest. .
http://greenopedia.com/alkaline-acid-food-chart/
Andrewaz707 posted:21 months after my takedown I have finally figured out a near perfect fix the the ever so painfully butt burn.
LEMON WATER TWICE DAILY
I encourage you to focus on foods low in acidity but that's ridiculous quite frankly for so many foods you love are acidic so why deprive yourself. ..when you can easily help with an inexpensive lemon water fix.
Who naturally would think..Lemons..the mere thought of injesting anything you think would be acidic...
LEMONS..when digested are very high in alkaline and neutralize acidic foods and drinks..
THIS WORKS!!..
Here is a link worthy that may be of interest. .
http://greenopedia.com/alkaline-acid-food-chart/
So your saying that lemon water helped your minimize you BB ? Because if I would thought quite the opposite....
do you take any immodium? my bowel movements are generally reasonably formed, but if I stop taking immodium I notice my output starts burning more.
I just take one immodium a day (before bed) and it seems to work well for me
I have chosen to give up immodium and pay close attention to acidic neutralizing.
In addition I've learned to have meat with blockers to help formation with vegetables that increase alkalinity. However when it comes to meat..I find that fish, shrimp..are the best choices for as the gallbladder stores bile for the breakdown of fatty foods..sugar..etc..the more bike that is needed can contribute to burn.
http://www.globalhealingcenter...dder-and-gallstones/
Frankly I eat whatever I feel like eating as long as I am doing lemon water to instantly neutralize...
My understanding from patients I've met is it takes 2-3 years..to train your new digestive plumbing.
I did try Metamucil. .it just helps keep things cleansed and moving which can be achieved with balanced foods high in fiber.
Immodium can help formation yes, however it can also cause upper digestive track blockage..that can put you into ER very quickly..as it did to me.. and they had to shove a tube through my nose suck out waste from the top side...that was a nightmare night..no sleep.
My takedown...was 7/2/14...I am coming up on my 2 year anniversary. .yes it's all been hell and nobody understands except for us.
Ps..A &D ointment helps best for me...I'm looking forward to my 3 year anniversary.
LEMON WATER..MY BEST ANSWER..
Andrewaz707 posted:21 months after my takedown I have finally figured out a near perfect fix the the ever so painfully butt burn.
LEMON WATER TWICE DAILY
I encourage you to focus on foods low in acidity but that's ridiculous quite frankly for so many foods you love are acidic so why deprive yourself. ..when you can easily help with an inexpensive lemon water fix.
Who naturally would think..Lemons..the mere thought of injesting anything you think would be acidic...
LEMONS..when digested are very high in alkaline and neutralize acidic foods and drinks..
THIS WORKS!!..
Here is a link worthy that may be of interest. .
http://greenopedia.com/alkaline-acid-food-chart/
Hiya. I had my takedown surgery 2 weeks ago after having my illeostomy for 8 months. The butt burn is the worst pain that has come from this operation...I've been using sudocrem (nappy cream) and have started to wash and pat dry instead of wipe with loo roll now. However, I'm really interested in the lemon water...when do you drink yours and also how much lemon:water? Thanks
My heart goes out to you... unfortunately all the different creams I used ... I can honestly say I don't think any were good enough and ended up using A & D ointment and occasionally still do. Find the softest toilet paper you can..
As for lemon water..it aids in neutralizing acid bile... you don't need a lot.. read up on how lemons digest in your body..i don't even use lemons any longer.
Pumpkin Bread... my newest addition to my diet..Starbucks sells slices... what a huge difference! Today..im going to actually use a clone recipe and try to duplicate for the pumpkin bread has been my life saver! Don't over do it..1 to 1.5 slice a day. NO WHITE BREAD..NONE! Also..ive added Pepperidge farms 15 grain bread... 1 to 3 slices a day..
I'm sorry you are going through this for nobody understands how horrible and frustrating it is except us that are and have been.
No white bread?? I thought that was better than brown bread.less fiber more bulking?
You NEED FIBER.. No white bread..it just pulverizes turns to liquid..
Mutigrain..15 works great..ive tried them all..i only buy 15 multigrain Pepperidge farms now..
Pumpkin bread is the Savior!
Thanks for the advice...no doctor or surgeon has given me any advice or after care on what I should or shouldn't too. All I was told was not lift anything! What else should I eat or avoid? It will be 2 weeks tomorrow since my take down x
Katerina, no single diet is best for all of us. Others' experiences are best understood as ideas to experiment with rather than reliable rules. For example, the insoluble fiber in multigrain bread is great for some and less so for others, and some avoid carbs (including bread) entirely. Try to make changes slowly and methodically, so you can start to understand if a dietary change seems to be positive or negative. In addition, your food tolerances may change over time.
Most J-pouchers enjoy completely unrestricted diets in the long run, and others do best on the multi-grain bread and pumpkin bread diet with a lemon water chaser.
In the early days what helped me were: 1) zinc oxide after each BM, 2) Metamucil, and 3) Lomotil. In retrospect a bidet would have been very nice.
Hello, Katerina.
The hospital should have an on-staff dietician. Call him / her and ask for the diet plan / suggestion sheet for their j pouch patients. It's a specific list for various stages of surgery and recovery and what to avoid at first. Usually it is given to patients at the pre-admission meeting but your hospital might have different procedures. If your hospital or surgeon doesn't have a diet plan, you can google for a j poucher's diet. You'll adapt it to your own needs, but it's a good place to start. For instance, I thought mushrooms were soft and okay to eat, but it was on the list to avoid while I had my temporary ostomy bag, and avoid after takedown for few weeks because mushrooms are insoluable - they don't dissolve in the gut and usually come out almost whole. I learned this while I had my ostomy and She spit out a whole mushroom while changing the appliance. Thank God She spit it out and I didn't have a blockage. I didn't know what it was at first, thought it was a whole bug. Anyway, call the dietician, or google. Good luck. You'll be fine.
Katerina,
I remember those days and sympathize with you. I felt lost nutritionally, until I finally found a dietitian who works with J-pouches. She put me on a Low-FODMAP diet and it saved me. There is an app for this diet, cookbooks and tools that I could cling too during those days.
I still deal with chronic pain 4 years later from chronic fissures but manage it with a few tools: portable bidet, sitz bath with hot water (best method for soothing pain), Xifaxin to keep inflammation at bay, Nifedipine compounding cream to help heal fissures. In the early days, before I was on Xifaxin, I found that taking a half of a Pepto with every meal helped calm my system, and taking Citricelle also seemed to help. Basically, when my system is wacky, the pain gets worse.
If you are 2 weeks out, I would rely heavily on a bidet and sitz baths - every time you go if you can. If you eat dairy, you might switch to lactose-free milk and hard (low-lactose) cheeses, Greek yogurt (as per low-FODMAP diet). I was drinking whole milk to try to take in calories and it was making me absolutely miserable, but I didn't realize that was the cause until I replaced it with lactose free.
I never thought I would be able to eat freely again, but take heart, I can eat everything now!
Thank you so much everyone xxx
I might also suggest taking a bath with Epsom salt might give you a bit of relief while you're in there, at least? You can temper the water as you feel comfortable.
I've noticed when I eat eggs my poop isn't that acidic.I don't have to rush to the bathroom if I eat eggs either. Sometimes if I can't get wipes, I'll get toilet paper a little wet and wipe with that. Something else that I've found to relieve me of butt burn is to rub some conditioner on my butt. If you rub conditioner make sure to give it a few minutes or so to work. I thought I'd at least give you a couple suggestions because they could help you. If you have any questions or need someone to talk to you can message me.
Thank you. For the past two day I have been filling my water bottle with lemon and things seem to have calmed down a bit. Not sure if it's just chance or the lemon is actually making a difference! X
Zantac twice a day and ilex skin paste work well for me.
That's great Katerina!
The lemon is a PH neutralizer..many foods are acidic ..so reducing the acid helps reduce bile..
Try Starbucks pumpkin bread..thats my latest find..i eat 1 slice before noon..and 1/2 slice in the evening..i learned of pumpkin in this group and was really surprised how fast it helped...1st piece! Now I want to make my own following clone recipe.
Everyone is different..i tried Metamucil..did not work..The 15 grain bread..and pumpkin..really does work in thickening..im not afraid anymore of foods...for if I didn't eat enough my intestines would naturally draw all the liquids from my body..and of course many trips to the pody..very little sleep. July 4tb will be now 3 years from my takedown..
i live in Australia and use a product called Medicreme, its been a saviour for me. its an antiseptic cream that has a little local numbing cream in it. its not specifically made for butt burn but i use it and its fantastic. im not sure where you live but if not in australia you could maybe buy it online. good luck
I've had my j-pouch since '93, and my surgeon made my mom go out before my initial surgery and track down "Bag Balm". Back then you could only get it a a livestock or farm supply store. They sell it at Walgreens and CVS and most major chains now. It comes in a square green metal canister in different sizes. It is seriously the Best moisture barrier, pain relief ointment, and antiseptic ointment on the planet. I use it for butt burn anytime I have a flare up (or make a bad food choice), and for heat rash or chapped skin anywhere. It is Very soothing (if somewhat greasy). The best part is that I can slather some on before I go to bed, and no matter how many times I have to go during the night, I rarely have to reapply. By the AM, I feel so much better. I get small fissures occasionally, and it is very good for those also. Best of luck to you.
I had my takedown in June be 2016. It's been a year and my butt burn continues. And we know how painful it is. Tried, sits bath, plethora of creams, lemon juice or rather alkaline foods but to no avail. Any suggestions? Brother has exactly the same problem!
Some people have success with cholestyramine resin. It might be worth a try. It comes in both artificially and naturally sweetened forms, and each has pros and cons.
OMEGA-3 fish oil
My Butt burn has significantly improved since I started taking fish oil capsules. I was told NOT to take the cheap versions. I take 2x day Nordic Naturals OMEGA-3. I no longer HAVE to use ILEX every time!!! AND my butt feels good after wiping, that is new for me.
Metamucil...lots of it. Should eliminate butt burn. Along with it, take probiotics. It's so nice to be drug free with something that actually works.
For those butt-burn sufferers I have had great success from the beginning of my surgery with a compound consisting of Nifedipine 0.3%, Lidocaine 1.5% in Petrolatum Ointment. It always works very well. Good for itching in that area too! Good luck to all of you...
Lionel
Calmoseptine ointment has removed all butt-burns for me. but need to use it most of the time to work properly.