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35 replies

14 years later and still butt burn

Mema 1Mema 1Member
Besides all of the other problems I have been having with my pouch lately, I have been having persistent butt burn that won't seem to go away. This morning I woke up to burning in the anal canal and bleeding on the toilet paper despite my using Canasa suppositories every night. I feel certain that this is from irritation since my stool is pure liquid lately. I'm getting a bit concerned since I know that constant irritation can lead to rectal cancer, and after having butt burn for so many years, I guess that I'm a good candidate. I have more wipes than Walmart does and Calmoseptine has become my best friend. I don't know what to do at this point since nothing that I am doing seems to help. I know that this is an ongoing topic, but I can't seem to find any answers or relief. I'm hoping that perhaps someone can suggest something that will help.
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J jeaneMember
I hate to admit it but antibiotics are the only thing that keeps my butt burn at bay. I have tried numerous things but chronic antibiotics are my magic pill over any rd rectal suppository, wipe or cream. You could havel low level simmering cuffitis or pouchtis, both of which I have. I hate taking antibiotics chronically but my anal canal throbs in pain from the burning and irritation without them.
DaffodillyDaffodillyMember
This has been a chronic problem for me too. I actually have itching more so than burn. I apply Calmoseptine several times a day and cortisone cream once a day. When I am scoped there is no sign of pouchitis or cuffitis. Antibiotics improve the situation for me and it may be because the stools are more formed. I don't understand why the antibiotics work when there is supposedly no infection.
MysticobraMysticobraMember
I have it too. No other problems. As they say it's a pain in the... Well you know.
I am surprised a numbing cream will not work. At least that is what I was told. I asked my Dr.. Surgeon for some lidocaine cream it was so bad this week I was not getting more than three hours of sleep a night. I finally collapsed Thursday nite and got some sleep but it's not a way to get it.
Can anyone answer why a numbing cream is not out there for us?
Richard.
Mema 1Mema 1Member
I wish I could say that antibiotics help me. What happens with me is that it definitely does thicken the stool and for awhile I don't have any butt burn at all. However, after a few days the burn is back and the holiday is over.

I can't understand why the Canasa does not stop the burn. I was told that I had cuffitis by my surgeon, and I thought that might be the reason for the irritation but quite frankly, I see no improvement while using them, and they cost a fortune.

I do appreciate all of your responses. There has to be something that we can all use, the question is WHAT?
A ArnaudMember
Perhaps you could try emptying/irrigating your pouch with a catheter ...
The theory behind this is that the pouchitis could come from bacterial overgrowth (which is why antibiotics "work"), which itself comes from stool statis in the pouch, which itself comes from incomplete emptying of the pouch.
See my posts in the topic "Irrigation tube .. Anyone ?" by Fosty for articles/details about how to use a catheter with your pouch.
Good luck, keep us posted !
A
CJBCJBMember
Proctofoam is also prescribed for cuffitis and it contains 2 ingredients. One is a cortisone for the inflammation (1% hydrocortisone), and the other is a mild topical anaesthetic (pramoxine HCL)

It helped me way more than the canasa ever did. It's definitely worth a try, and was exactly what I needed to get over my reoccurring cuffitis.

Hope this helps!
C-jay
Mema 1Mema 1Member
Thanks everyone!!! I will check out the catheter theory since I know that I'm not emptying properly for sure. As far as the Protofoam goes, I will ask my surgeon about it because I don't think that the Canasa is working at all, and it's making a horrid mess out of my toilet seat Eeker, although I think it must be the cleanest one in town as I bleach it after each use. Any idea how much the Protofoam is in comparison to the Canasa? Confused This is a mighty expensive habit to say the least!
CJBCJBMember
Mema,

I'm from Canada, but I can tell you that one month of canasa (Salofalk, here in Canada) for 30 suppositories cost me $65.29. A one month supply of the proctofoam cost me $45. But that was for one dose per day. Two doses a day would cost $90 a month.

I always responded well to prednisone when I had colitis, so I wasn't that surprised at how well this medication ended up working for me.

I was on Salofalk on and off for almost 8 months, but one month on proctofoam and I am back to normal. I have been off it now for more than 3 months. Everybody reacts differently to the different meds available to us, and this is what worked (finally!) for me.

C-jay
Mema 1Mema 1Member
I'm curious too. Will be waiting to hear. I got a cream from England that someone suggested, but it doesn't really work for me. I have been using it as a lubricant to insert Canasa suppositories, which I'm not sure are even working. Just wondering, if the Canasa did work, wouldn't it stop the irritation as well? Just curious.
DaffodillyDaffodillyMember
I'm back to report that the 2 creams I bought on Amazaon are both reall good, Ilex and Critic Aid protective paste. They both have greatly improved, in fact pretty much fixed my problem with chronic butt itch/burn. The Ilex traps moisture into little beads which is weird to get used to when wiping. I also started taking Metamuci capsules two weeks ago when I started these creams and that has helped a lot too. It has decreased frequency and thickened the stool. I think it is the cream PLUS the Metamucil that is making this work. Very very happy! BTW I only need to apply the cream twice a day. Before when using CAlmoseptine and Magic Butt Cream I would have to apply them after each bowel movement.
Wanna Be HealthyWanna Be HealthyMember
Can't say it enough.... Calmoseptine!!!!!!!!!!!

It's a shock when you first use it.. a cold sensation (hard to describe). Some people refuse to keep trying it and give it a chance. My husband brought me everything under the sun during my first three months of J-Pouch life. And THEN I found Calmoseptine (I think I learned about it on this site). Thank you!!!
S SarahXYZMember

A bath w Epsom salts provides some relief too.

 

I don't like when this happens to me (I'm 14 yrs post takedown, too) and all the creams make it so my rectal skin cant properly heal w air (or so I surmise, I don't usually look!), and I need a cream (I rotate w calmiseptine, aquaphor, and a few others) for relief. The Epsom salt bath is great - old fashioned but it is real nice!

Last edited by SarahXYZ
ElmerFuddElmerFuddMember

So... I can't give any "for sure" answers. However, I believe that taking an acid reducer has helped me immensely with butt burn issues. I take Prilosec daily. And probably 90% of the time, I have no issues with the burn. If I get a touch of pouchitis I may still have burn, and antibiotics do help. But whether you take a 12-hour acid reducer or a PPI, it should help with the burn.

K ktaMember

Questran is a powder that you mix with water and drink. It binds the acid in your stool so no more burn. It is kind of a pain to take as it also binds your meds, so it needs to be timed just right. When things get really bad for me, I take it. It gives things time to heal as the stool no longer burns. Good luck.

CS Claudia SMember

Last year after experiencing many more close calls and burning episodes then in the previous two decades with the J-pouch, I decided to go with my gut and do an illumination of items and low an behold once I eliminated drinking wine & certain fatty foods I had an amazing improvement, also downsizing intake during the summer months when I usually over due the menu with all the extra fruits & vegetables coming from the garden.

I also take a tablespoon of Metamucil & tablet of Imodium in both AM & PM, I take a Florastor (probiotic) after dinner and now I rarely experience those previous challenging times of burning bottoms. But, I will say with the holidays around the corner I know those extra fats found in gravy's, pumpkin pies, cheese cakes, apple cider, eggnog... will be again a huge challenge, and the burning bottom effects will definitely be present afterwards if I choose to again enjoy these favorites. I'm thinking pick your battles.

As far as lotion to the bottom redness & soreness, I'm pretty old school with what my surgeon advised A & D ointment (walgreen's my choice) and Desitin.  Hope this helps. 

SpookySpookyMember

My pouch is going on 8 years gold, and I get bad flare ups of butt burn at least once a month, which includes bleeding on the toilet paper at times.  Unfortunately Canasa suppositories (called Salofalk in Canada) only seemed to cause me more irritation, so I had to stop using them.  I use Calmoseptine and vaseline, and when it's really bad I've used hydrocortisone. It doesn't seem to be diet specific for me, though I believe it's related to hemorrhoids at least to some extent, and it also seems to flare up around my period which is probably another factor. I try to avoid excess wiping if I can and use the detachable shower head to rinse whenever possible. A bidet would be an option - it's something I may look into. Otherwise, I feel like I've tried pretty much everything. I have the same concerns about cancer, although my surgeon didn't seem exceptionally concerned. I am due for a scope next year since my last one was in 2014. I'm wondering if it might be a better idea for those of us with this problem to be scoped annually instead of every other year. I definitely plan to discuss that with my surgeon the next time I see him. 

S Scrubby4Member

I have had my pouch since 2010.  Seriously I had many issues, incontinence, butt burn the worst. I finally went to the doctor and he prescribed Questran it’s taste nasty but it binds to the bile acids and stops the burning.  Believe it started working right away.  Doctor told me that the Ileum ( the part of the small intestine that the pouch is made of) is where the bile acids are absorbed with j pouches that cane be a problem with absorption thereby causing the burn.  I also use Critic aid, it’s the best. I tried them all believe me.  Hope this all makes sense.

LK Laurie KMember

Hi there! Just wanted to comment on some of the things that people have mentioned. I believe that the Proctofoam is now banned in the US.  I was using it last year and then my insurance company informed me that the FDA no longer approves it.  I have used the Questran and I do think it works.  But what I really wanted to recommend is a bidet.  I know it sounds crazy, but it is literally what has saved my life. If you do not have one....please  Make the investment. I've  had others that I've recommended it to thank me wholeheartedly. It will greatly decrease the irritation!!

CS Claudia SMember

Since my October input, another product I use for painful irritations Which included pouchitus is an OTC lotion called Tronolane. It 's works like Prep H but it takes care of the pain an discomfort immediately. And my go to (bottom burn) OTC standards are still Desitin, A&D , (system slow down)OTC Metamucil & Loperamide 2mg.  Hope this helps! 

 

 

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