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My daughter had her ileostomy reversal on 12/14/23 (IPAA). She is experiencing the butt burn worse at night between 7 pm - 9 pm. Her external skin is fine and continues to use the Calmoseptine every time she has a BM, uses a portable bidet every time, and pats dry.  We have been doing sitz baths too with and without Epsom salt. Her burn is internal- in the anus or anal canal. She is eating a very bland low residue diet. If she takes immodium her system completely shuts down - no BM's, starts vomiting, and has terrible cramps. We tried Metamucil with similar symptoms as Immodium but not as severe. Her stools are inconsistent some are watery but most of the time they are thicker. She averages between 8 & 12 BM's a day with no leakage. Any suggestions would be appreciated. I have contacted the clinic-they want her to take the immodium and or Metamucil to get the BM's down to 4-6.

I remember the butt burn when I had my j-pouch surgery but that was in 1990 and I don't remember it lasting this long.

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In my opinion getting the BM's down that low that quickly after surgery is a bit unrealistic.  As long as she is well hydrated, urinating frequently etc the bowel will learn to absorb in time.  Obviously using Immodium is out of the question for her.  I'm sorry I can't help with the internal discomfort.  Sometimes when I'm feeling that way I'll do a little massage of the area and that seems to provide some relief.

J

Thank you all! We started using the Metamucil again. Slowly increase to 1 1/2 TBSP to 4oz water before every meal. This helped tremendously. For about a week and then ended up being transported to the Children's Hospital for a possible abscess. She had an infection somewhere and a possible ruptured ovarian cyst. Now we are trying to tweak the Metamucil and find the happy medium, but she goes to the bathroom. then 10 minutes later she is right back in because has the urge to go again. The j-pouch nurse said these were spasms and gave us an anti-spasmatic. We will see.

I don't remember having all these issues when I had mine done in 1990.

KD

The ONLY thing that helped the excruciating pain of butt burn for me is Metamucil. And lots of it. I take it twice a day, about a tablespoon and a half morning and again after dinner. I just scoop it a little at a time into my mouth and chase it with water. Not only did it eliminate butt burn, but it also gave me formed stools, eliminated gas and leakage, and cut down on number of times I had to go daily. Good luck!

M

@garyjohn3

I got this from Amazon,  simple to install.  Now I don't have power by the toilet,  so no heated seat or heated water.  These have been such a game changer. Only time I get the burn is on vacation or at restaurants.

SAMODRA Bidet Attachment, Non-Electric Cold Water Bidet Toilet Seat Attachment with Pressure Controls, Retractable Self-Cleaning Dual Nozzles for Frontal & Rear Wash - Black https://a.co/d/3cZZBiK

V

Here is something that may help!

I suffered from the similar your daughter suffers from, that internal nasty burning, of which mine was extremely painful to say the least. This is Rx only, so her Gastroenterologist or Attending Physician will need to prescribe--> [Lidocaine Hydrochloride Jelly USP 2%], the product itself is sterile and comes in 30 ml tubes. It's a little on the expensive side but most Insurance providers will cover or a good portion of.

My Gastroenterologist PA started me on this after my total colectomy w/j-pouch in 2004. Although the sits-baths, calmoseptine and Metamucil helped, the Lidocaine Hydrochloride Jelly USP 2% did the trick.

Method of application: latex or similar type glove, apply a generous amount onto (a) finger then insert into rectum/area where pain is initiating. The tubes also include an applicator ea., that attaches to the tube for an alternative method to apply.

I used it after ea bowel movement, the relief was substantial. It's worth noting, the relief is by the numbing effect from this product, there may be some stool leakage after using due to it's numbing effect although it was minimal, at least in my case, and the benefits far out weigh the negative. Wearing a liner i.e., Depends helps in preventing staining.

I've tried other forms of Lidocaine, different from the product I mentioned above but the stinging was painful and lasted longer upon applying, and the relief wasn't near as good or last as long as the product I'm mentioning here, and with just a slight sting that lasted only a second or two.

I've found over the years discussing the good, bad and ugly on this topic in general that everyone responds differently when using the products mentioned in this discussion, all of which are excellent. So it does take some experimenting using these products be it single use or a combination of to find maximum relief.

Daily Metamucil intake is key, at least it is in my case. Metamucil is an excellent source of fiber; in the case we're discussing here it's very beneficial in that it's binds itself to [Bile], the primary cause of 'butt burn'. Bile is a given, is an important component in the Gastro/Digestive tract so it can not be eliminated or reduced, that's where the Metamucil comes into to play. I'm a daily user of Metamucil; without a colon/large bowel, [Bile] is ever present when passing stool, thus the after affects result in butt/rectum burn which Metamucil certainly helps to reduce.

I suggest taking Metamucil throughout the day vs once a day and suggest a dose prior to retiring for the nite. I take Met with a meal and also by itself at times, just my preference. My current to date daily intake of Met is 2-3 teaspoons in 16 ozs of water three (3) X's p/day. I stir vigorously then immediately drink it. I found this method/dose works best for me, it is not a standard dose by any means. Everyone responds differently to Metamucil, suggest to start with a small amount and work from there until desired results are achieved. If taking OTC and or prescribed medication, including vitamins, Metamucil should be taken two (2) hrs prior or two (2) hrs after taking meds/vitamins to lessen it's binding effect.

Calmoseptine is an excellent product to fight butt burn, but the Lidocaine product I mentioned works best for relieving internal burn, it also can be applied on the exterior skin although I found Calmoseptine worked best in that respect when applied on the exterior. Hope you find some of this helpful! Best Regards!KIMG0009KIMG0010_01_BURST1000010_COVERKIMG0011_01_BURST1000011_COVER

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JF

Could it be internal fissures causing your daughter’s pain? It burns and can feel like shards of glass coming out during a bowel movement. Ask your doctor about fissures. There are prescription creams that will heal and soothe the intense burn. My surgeon prescribed a tube and I was healed within a week. It’s good that she is using sitz baths. Is she using the hottest water that she can tolerate? The hot water will increase blood circulation internally and help heal from the inside.

Winterberry

Just a quick comment about Metamucil. First off, it's way too expensive. Second, it has too many 'other' ingredients. Yellow 6 dye, flavoring [natural and artificial], maltodextrin. All completely unnecessary.  [The sugar-free is the worst of all - the sweetener [aspartame] is bad news.) Really all you need is the psyllium husk powder, without extras. Many supplement companies carry it (e.g., Source Naturals, Now Foods). And it's much more cost-effective.

drdennisclark

Certainly the only medically useful ingredient in Metamucil is psyllium. People vary in how helpful they find the flavoring and in how much the cost matters to them. I personally mix Metamucil 50/50 with Konsyl original, a pure psyllium product, to get the flavor, texture, and calorie profile that’s right for me. It costs so little per day that I’m not going to spend any time trying to make it cheaper. OTOH I’ll drive a fair distance to get a better price on Visbiome.

Scott F

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