how to heal excoriated anus - acid erosion!!

Mightbetime for Ilex.

Jan

thanks, Jan! can i use Ilex inside? i see that it "glues" the butt shut... Is it mean for "outside" anal use only?

Has your doctor also discussed reducing the acidity by use of PPI ( Omeprazole or lansoprazole ) and/or cholestyramine sachets (Questran). They are said to help some people. Hope you can recognise the drug names- I am from the UK.

Has your doctor indicated you have any inflammation in the cuff? I know my last scope showed friable tissue in the cuff and the GI put me on canasa for it. This may be something entirely different than what you are experiencing if you have no inflammation from residual disease in your cuff and your issue is just from digestive acids, but it is just a thought. My GI also suggested Questran to me at my last visit due to my scope findings.

Also at three months out I think a lot of the irritation etc can be due to some healing and adaptation. I know as I progressed past this point (around 6 month mark or longer) the burning, and painful irritation did subside quite a bit, but it did feel like an eternity while going through it. I also did a lot of sitz baths during this time and used a lot of cocoa butter, desitin and vaseline, and yes, I have at times, inserted some vaseline in the very lower cuff area..not so sure about the other creams though. In time, this should get much better for you, but it will test your patience.

thank you so much for your responses!

quote:

Has your doctor also discussed reducing the acidity by use of PPI ( Omeprazole or lansoprazole ) and/or cholestyramine sachets (Questran).

i asked my doctor about Questran today. they would NOT prescribe it to me! he said lomotil/imodium are recommended here, and the goal is to reduce BM's as much as possible so the area can heal. they said the acid blocker meds work more on the stomach. :/

Is that true - Jan or anyone? i wonder if there are OTC equivalents?

quote:

Has your doctor indicated you have any inflammation in the cuff? I know my last scope showed friable tissue in the cuff and the GI put me on canasa for it.

he said the eroded area was slightly below the cuff, so he doesn't think i need canasa.

the only other thing they said they would suggest is water/Fleet enema.

Hellooooo doc i am desperate and will try just about anything! in fact, last night, i did the following:

- sat on heating pad for 10 minutes
- sat on bag of frozen peas for 10 minutes
- used a little balneol to clean off residue
- did sitz bath, added coconut oil to the water. wound up with coconut-tropical butt!.......smelled nice
- jumped in the shower for quick wash
- put ILEX cream about 1-1.5 inches inside, with some vaseline
- somehow managed to fall asleep!

desperate times call for desperate measures!

i woke up feeling better, but also with a gooey-ooey-sticky-gunky messy arse! i think the ilex is helping, but there is still some internal burn. It seems better though! will try this for a few more days. if it works, I will go kiss the Ilex inventors! i may try the enema too, but it makes me a little nervous...

jeane, thank you for letting me know this will likely get better in time....that makes me feel a lot better. you're right, this definitely tests patience! i think maybe i should have had kids first, then i would know more about patience! hopefully this will be a distant memory soon!

In addition, you might try eating oatmeal a couple of times a day. I use the old fashioned kind and not the instant. The reason I suggest it is that it is "easy" coming out.....almost soothing. Go light on the sugar. Add some fruit....1/2 banana or/and frozen or some fresh blueberries, if you'd like. Best wishes!

i'll try the oatmeal, thanks!

Ilex will really help. If you can find Nupercainal, it is really soothing. If you put it over the Ilex it will help a bit with the pain. It has a numbing ingredient. The other product I've tried and I find works quite well is from another of j-pouch.org sponsor - Bottom Balm. It's also very soothing and it's another product I use over Ilex.

kathy

Fq,

Trust me, I had many nights exactly like you are describing and used the same methods to get relief. I used to get so frustrated by my surgeon's non-alarmist attitude regarding how I was feeling and now I understand why. Although I do have some issues with pouchitis that get me down from time to time, I can say that I rarely ever have rectal burning/itching and pain like I did early on. Fortunately, those memories are buried very distant in the back of my mind, somewhere where I would prefer not to revisit again.

You will improve in time. You just have to do everything you can to ease the pain. I know that can be tough as while you are going through it and in constant pain and discomfort, that is all you can focus on. There were nights I wanted to pull my hair out of my head.

Hang tough and try and stay as positive as possible. This too shall pass and I don't think having kids would made a real difference. I have two teenagers and I have less patience now than before I had the surgeries . I assume it is because you go through so much with the surgeries that it wears you down.

fq - Thanks for sharing about all of the nerve endings as I could not understand why my cuffitis caused so much pain! It's only 2cm inflamed at the cuff. The scope pictures clearly showed the inflammation and the pathology report said it was UC with other technical terms. I had a hard time understanding why it hurt so bad as the inflamed area approximates the size of a quarter!

I take a PPI for GERD and don't think it helps with burning at all. I asked my local GI to prescribe cholestyramine, which reduces bile acid, for the burning pain with cuffitis and he warned me about a bad side to it's binding properties. He said it would bind medications I take so I wouldn't get the proper efficacy from them.

I didn't use any of it and then asked my Mayo GI about using it and he said not to. So if anyone is considering taking it and has other medical problems that require taking prescription medications it's probably best not to take it.

I am surprised by the doctors descriptions of Questran. It is a very old drug and has been in use for many decades. It definitely decreases acids in body waste so I don't know why the first doctor said it only worked in the stomach. You take it either an hour after meds or four hours before because it can bind up meds. I take it an hour after meds and have had no interference with med absorption.It eliminated my butt burn!

Subzero,
I have a full can or it and might try it sometime in the future. I'm not currently having any burning problems plus my cuffitis is under control, I think

Do you have other medical conditions requiring meds? I take 11 different ones and a lot of them are several times a day since I can't take time released ones

Thanks for explaining how you time taking it.

Maybe it is more than just acid. Have you heard of Pruritus Ani? Might be worth looking up. Also I know a man that uses an enema bag several times a day with just water I think to empty and at home he has something set up to the toilet which he says works better. Says it saved his life. Something to think about. Hope you get some relief SOON!

Toughenough, In the beginning I took 1/2 dose twice a day. Now I just take a full dose at night before bedtime. It was a little tough in the beginning. I would take my meds before my shower, have breakfast and then take the Questran about an hour later before I left for work. I continued to take meds with meals. I do not take anything at bedtime so it is easy for me to take the second dose of Questran then.
The directions are on the fine print paper attached to the can. I also found better instructions at their website. They might suggest a better schedule for fitting in the Questran with your meds. It is definitely worth the trouble not to have butt burn. Good luck!

Thanks, for now I'm following the instructions from my Mayo GI. He had me stop taking all the pepto bismol and digestive enzymes and not to take the questran. I'm still on the VSL. After following his instructions the cuffitis is much better and probably gone. I'm taking the Canasa a few times a week to keep it that way. My other doctors had been treating it longer. I didn't ask why he told me to stop them but it worked.
Thanks

i want to thank everyone for their replies! truly appreciate all of you!

things have gotten better in the past few days...finally. i was diligent in applying ILEX ointment with vaseline slightly inside (about 1 inch), taking sitz baths, using calmoseptine, and resting a lot..... there is always some type of ointment or cream smushed in and around my butt!
i also started eating oatmeal. but i couldn't find nupercainal.

quote:

You will improve in time. You just have to do everything you can to ease the pain. Hang tough and try and stay as positive as possible. This too shall pass and I don't think having kids would made a real difference. I have two teenagers and I have less patience now than before I had the surgeries

jeane, you were right about the burning getting better....so you must be right about kids and patience i would probably run out patience sooner than later!.

The butt burn still comes now and then, especially by the end of the night when i have gone to the bathroom several times and my butt is tired of acidity and frequency! but if i keep on top of the anal skin care, it is more manageable and hopefully won't get as bad and eroded as it was.

the doc said the anus is like the tip of your finger, meaning if you get even a paper cut on your finger tip, it has lots of nerve endings and will hurt. over time, like many of you j-pouchers here, i hope the anal skin will "toughen up" and be able to handle frequency and different food/ acidity levels better.

prevention is key, i think so the area does not get erosion. staying on top of butt burn, even if it is mild!!

i will ask my doc again about questran and see what he says.

thanks again!!!

fq, You sound better.

Thanks for telling us what is working for you.

Hi all.

I'm glad to hear I'm not the only one with this problem.

My question is if there might be any long term problems if this happens quite often? I'm nervous that I will have permanent damage in the anus, so that it will stop working. I can survive the pain (although extremely annoying), but would really hate to return to ostomy again.

Btw, I have been using "psyllium seed husks" and it has helped me a lot.

Thanks for your posts.

KrummeEs

Once you figure out how to get it under control it becomes easier to keep it that way or to recognize when you are starting to have problems. Are you doing well right now or currently having problems that you want to ask questions about?

I had this same problem and couldn't take it Anymore and went to see surgeon. He gave me questran and a corticosteroid cream. The cream worked Miracles on the raw skin In 3 days and the questran has also done great. I am no longer pooping fire and acid. If this trend continues I will feel awesome in no time. Just have to solve the leakage problem although that seems to be getting better as the skin heals.

Evening

If you are taking Questran Please monitor your liver enyzmes also make sure you brush your teeth well .It sticks to your teeth.
Recticare is new over the counter .Contains 5% lidocaine. Expensive yes but worth a try .It has helped me with this dilemina

Cassiecass

TE Marie

I can't say it's become easier for me. I had my operations 15 years ago (I'm 40 today) and have been more or less fine ever since.

I have always eaten whatever I felt like (no special diets) and have never really had any problems, but lately "my behind" seem to be more sensitive to what I eat and drink and not even eating normal assures that I won't get this "butt burn" and inflammation problem. Right now this is worse than ever, but I'm sure (at least I hope) that I'll be back to normal within a few days. I have been unable to find out why it happens.

So the more frequent "butt burns" (on the inside) has made my think, that perhaps the "wear and tear" of the last 15 years is becoming visible and I'm afraid that at some point the anus will be so affected by these incidents that it will stop working as it's supposed to.

I haven't gone to the doctor yet. When I was operated 15 years ago I decided to declare myself cured and I think this attitude has helped my a lot as the J-pouch has had an almost zero impact on my life (I have not once in 15 years needed to see a doctor). I had my operations in Denmark, but now live in Spain, so the Spanish doctors don't have my medical records etc. and I'm kind of scared that they will mess me up somehow :-/ The medication (Questran) seems interesting, so I guess I will have to see a doctor at some point.

Sorry about all these negative thoughts, but we just had our second kid and perhaps that's the reason why I have started to think like this - I would like to continue to be a healthy and active dad for many more years to come!

KrummeEs,

I don't want to sound negative but it sounds like maybe you have cuffitis. Did you have UC. When I get the burning that you are describing it's my cuffitis flaring. Excuse me if I'm covering ground you already know. Cuffitis is UC in the rectal cuff - right at your back door. They leave several cm of our rectum to attach our j-pouch to when performing the operations and those several cm of tissue can still get UC. When they get it they call it cuffitis. The treatment I am on is suppositories.

If you have not had a pouch scope in 15 years it is time to have one anyway as we are still able to get cancer in there too. Maybe the surgery is different in Denmark. I'm just saying how it is here. Cuffitis can be diagnosed by a good GI that knows what s/he is doing by a digital exam. It feels like a little ridge at the cuff which is not far in your back door. But it is a good thing for them to do a scope (like a colonoscopy but the prep is easy) so they can take biopsies.

Happy Day on your Birthday

(I didn't want to put that in the same post as above.)

My surgeon prescribed Colestopol which binds bile.

It is normally a cholesterol drug. It reduces colesterol by binding bile and preventing its re-absorbtion, thus forcing the body to go "get" and burn up cholesterol, which is the main ingredient the body uses to produce bile.

The binding part is what benefits us.... it is literally surrounded and thus burns less as it passes.

Hi TE Marie,

Thanks :-)

I just saw my surgeon and I do have cuffitis. Apart from this the pouch was in perfect condition.

He has put me on suppositories (only taking one Asacol 500mg a day (at night)) and I very curious to know your experience on this.

It would be really helpful if you could answer a "few" questions:

Does it help you?
How much time from when you started taking them until you "got back to normal" (if you got to normal)?
What are you taking?
Do you take them every day or just when you are "under attack"?
Do you have cuffitis frequently?
Should I be worried? :-)

Any input would be highly appreciated.

Thanks.

Have a great day!

The fact you went far more than a decade without cuffitis, or at least minor enough inflammation that you could ignore it, is very good news. I think it probably means this will not be chronic.

Mine was chronic, and still responded well to mesalamine suppositories. I was also taking Flagyl for a few weeks overlap, because I had a case of pouchitis in addition to cuffitis. Anyway, dosing was daily and within a few weeks there was no more bleeding or urgency. I used the suppositories for a couple of months and my GI told me to reduce the frequency to whatever kept the symptoms away. I got tired of the suppositories and eventually switched to oral sulfasalazine for maintenance. I now only use the suppositories rarely.

Hope you do well!

Jan

I can answer some of this as I have chronic cuffitis. I just asked my Gi the same question yesterday about the wear in the anal transitional zone due to all the ulceration/ scarring and he did not seem concerned about this.

I don't want to depress you by my situation but I have been on rectal meds and cipro pretty consistently since takedown over two years ago to try and deal with this. Most if my issues are mechsnical in nature and my GI thinks my cuffitus is ischemia related from my stricture at my anastomoses so keep that in mind when reading this response.

Sometimes the burning is excruciating even while on meds and the day im ok. Go figure. I also use cortisone over the counter creams and rectiv by prescription which helps but gives you an instant migraine headache.

Remember you will always have some level of inflammation in the cuff even if asymptomatic. Stay on the rectal meds. When you feel improvement you can move to every other day or every third day. I don't think it is unusual for those of us with stapled jpouches to deal with cuffitis on occasion. It is the chronic cases that complicate things. Staying on top of it and actively treating it is key.

KrummeEs,

I think Jan is probably right as she's an RN and has been dealing with a j-pouch for years. Unfortunately my cuffitis is chronic. I use Canasa which is mesalamine suppository nightly and use Anucort which is a hydrocortizone suppository in the mornings when the flare is really bad. I can go to every other day when things calm down and then go to a few times a week but I haven't been able to do that. I had my take down surgery a few months before jeane's and while not diagnosed until a year after take down probably had it months before then. I don't have the other complications she does and my pouch function is good. I've also developed chronic pouchitis which requires me to take a low dose of antibiotics off and on plus I take probiotics.

It might take you a month or two to get over your cuffitis if you've had it for a while if you are using a suppository.

Asacol has the same ingredient as the Canasa, mesalamine suppositories which I think are preferable as they get the medication directly to he afflicted area right away. I'm not a doctor but remember passing the coatings of the Asacol in my stools when I had UC before. I don't know if there is enough time for the coating to release the mesalamine in the j-pouch. The coating is made to open up when it reaches the ph of the colon - which is 5-6 feet long. I'm assuming our j-pouch is the same ph as the colon but it's much smaller. I'm sure I'm over thinking this.

I hope your back door is feeling better and this is the only case of cuffitis you have. If you do have to experience it again may it be in another 15 years!

I wanted to add that cipro is my miracle medication. Even with my stricture, I can still manage with this medication as my jpouch function is also very good since my pouch adjusted and I got ride of my pouchitis. I am just stubborn and thought I would be off medications after surgery and that has not been the case for me. When I take this medication all the anal pain and issues also disappear and it works way better than any rectal meds do for me.
But since I am stubborn, I often attempt to get off it and usually last anywhere from 1-3 weeks before I am in a full cuff/anal flare with pain, burning, itching, difficulty emptying and sheer agony.

I will never figure this one out as I never took any antibiotics in 25 years of UC and never had any anal issues like this before jpouch surgery. As my GI indicated, most of my issues are mechanical related to the stricture (possible ischemia) related and the straining further aggravates the sensitive area below and can also cause tears in the anal canal which add the pain and discomfort.

I have resigned myself to the fact I will need chronic antibiotics, as long as they continue to keep working, in order to avoid further surgery.
If you are dealing with only cuffitis, you should be able to get this under control with rectal meds only.

Thanks to all of you for your replies. Very much appreciated!

I have now been talking the medication for a week, the first 4 days once day (at night) and the last 3 days twice a day (at night and at midday).

To be quite honest then my cuffitis seems just as bad as it was a week ago, but I guess I need to be more patient if it can take up to a couple of months to "cure". I'm sure I have had it for a while. Due to the lack of progress the I started taking suppositories twice a day as mentioned, but I'm not sure if it is needed? What's your experience?

My surgeon said I should notice an improvement after 5-7 days, but I guess mine might take a little longer. Glad to know that might be "normal". I would prefer not to need the medication, but could accept taking it daily (permanently) if necessary - just need to feel better again, that's all I'm asking.

Thanks for sharing your experiences and take care.

Btw, any know cases of cuffitis that has been so bad that medication hasn't been enough? As you may notice, then I'm getting a bit worried, although I know that I need patience, I have only been on the medication for a week :-)

I have pretty bad chronic cuffitus that requires meds often and pretty much continually. It is an ongoing struggle but the meds do help and i do get get quiet periods. I am not shre my cuffitus will ever be cured. Hope you can get relief too.

It will take you longer than a week on your suppository. I just re-read your medications. I thought you were on Oral Asacol - so sorry. You are on the ingredient in asacol, mesalamine - just like I'm taking. It took me over a month to get into remission the first time. I did get it back and back again and then I was told the every other night taper to several nights a week maintenance. Unfortunately I don't ever get to the maintenance phase. Like Jeanne I am not sure my cuffitis will ever go away.

15 years without is a better track record than 2.75 years with it. I'm betting on you knocking in out. It's just going to take you longer. They gave me 2 weeks to start with and after the next 2 weeks gave me a months supply at a time. It is really expensive here so insurance companies won't pay for more than that. I hope you get it free!

Hi again,

Sorry to disturb you again, but you have been very helpful until now, so I'll try to ask you all for advice again.

It's now been almost a month since I started with the suppositories and I haven't yet felt the improvements I had hoped for. I don't get the really, really painful attacks, but I have days where it's pretty bad, although the majority of days I only have minor problems.

My questions are:

1) Am I on the right medication and the right dose? The surgeon told me to take 1 * 500mg Asacol (suppositories) daily (at night), but that I could upgrade it if needed. I did one week as he recommended and then upgraded myself to 2 * 500mg daily (midnight and midday) which I have been on for the last three weeks. I'm not sure the upgrade made any difference.

2) I got the Asacol while I was in Denmark, but now I'm back in Spain where I live. According to the local pharmacist then I can't get Asacol in Spain, but something called Claversal (500mg suppository) or Pentasa (1g oral med). I understand they both contain mesalazine, so I guess it's safe for me to try them? I would probably start with the suppository.

3) Other medication that you can recommend?

Any comments/advice would be highly appreciated.

Thanks.

If your going to see improvement you should within at least a couple of months. Canasa never seems to do a whole lot for me to be honest. Cipro is the only thing that tames my cuff issues but I do have a stricture at my anastomoses which causes most of my issues. Not sure I would have cuff issues if it were not for the seriously reduced blood flow to my anal canal from my stricture as well as the constant straining to empty my pouch.

I have cuffitis, without the stricture problem jeanne has. I take 1000mg mesalamine suppository at night and 25MG hydrocortizone in the morning when things are burning/bad. It did take me longer than a month to get it under control the first time. I think there is just the 1000MG size here called Canasa here. The other is called Anucort and am sure called something else there and which is much less expensive and some here use it all the time. I did try it all alone and it did not work. I have to use prescription Loperamide 2MG cspsules, sometimes 8 per day when I am having watery BM's to be able to even use the suppositories. OTC this is called Imodium here. I also do not eat ANYthing spicy, not even with much black pepper while flaring as this increases the burning. Lots of yogurt, protein smoothies, baked chicken, mashed potatoes etc. I have no idea if 1000MG would make a difference or not. You might want to ask your doctor and if agreeable or if you can get as many as you want try 2 at a time or keep up the 2 per day.

As my Mayo GI said, keep using UNTIL I get it under control and I did. This was after I had been using it or the hydrocortizone suppositories almost straight for 3 months. I am not a patient person so think I understand how you are feeling. Don't give up. Who knows, you could have some kind of infection as well and you might want to try an antibiotic, but I never needed to.

Good good good Luck!

P.S. The directions say to keep in a minimum of 3-4 hours. I try to make sure I lay down the entire time, gravity tends to make me GO.

TE MARIE,

I am surprised your GI had you take the anucort for three months. Both my GI and surgeon were very wary of long term use of this due to skin thinning, yet Bo Shen indicated you can take it indefinitely. When I am really hurting I will also alternate with anucort and mix it in for a day or more here or there. I never take it for longer than a week and rarely every day while I am taking it. It does seem to help more than canasa. I honestly do not get much relief from canasa and I have been taking it for over a year almost consistently. Again, not everyone can go by my case as my GI does think I have some surgery related ischemia that has caused the stricture and gives me all my other anal problems when the stricture and cuffitis both act up. All I know is Cipro is my miracle drug and although I hate taking it, I hope it never stops working. My pouch function is fine and has always been good even when off antibiotics. It is the last 2 centimeters and connection that give me all my heartache.

Thanks for your answers. For now I'll continue with the mesalazine suppositories and hope they do magic at some point.

Btw, have any of you tried "Psyllium Seed Husk". I was recommended it by my surgeon and have been using it twice daily for the last 15 years. It's been absolutely great for me and helping me having "good solid" BM's - I wouldn't be without it!