Hi Mommy,

I also had a J Pouch done in 2 steps at Mount Sinai, and also hated the ileostomy.  The butt burn is usually temporary, in my case it lasted around 9 months.  After removal of the colon the stool I believe is more alkalaine until eventually The J Pouch adapts.  My butt burn gradually tapered at the 9 month mark or maybe a little more.  In the interim I relieved heavily on various zinc oxide barrier creams on the market with the ideal % of zinc oxide around 13% or so.  If it is too thick it will caulk the butt cheeks together and you can't get it out.  If too thin and creamy, it will just wipe away every time she goes to the bathroom.

If she was in Mount Sinai she likely had a good surgeon and aftercare and they could recommend to her a good ointment.

Good luck to her.  Things will get better.

Some people swear by fiber supplements to thicken the stool and reduce the burning effect. She can insert some barrier cream into the anal canal too, but careful with the Ilex (don't want to glue it shut!). Ask about lidocaine topical to help with the butt/anal pain.

I would caution against the use of Advil for pain, as studies show that use of NSAIDs in the post op period is associated with the development of chronic pouchitis. Plus, it can backfire by causing gut irritation and more pain. 

When she feels better she should be encouraged to see her friends. In the meantime, does she keep in touch through social media? You can encourage her to come here to vent too. She should not feel alone in this. 

Jan

She might find similar stories to her own on Girls with Guts:

www.girlswithguts.org

Ray

Mommy, my son also had UC.  I feel your pain and that if your daughter's.  It's really tough for anyone going through this, but especially hard for teenage girls.  She needs to mourn the loss and the changes to her body.  It's going to be okay.  But telling her that won't work.  She needs to discover this for herself.  My son was diagnosed at age 6 and had his colon removed at age 23.  It will be two years in June.  I told him that he is not his disease.  Do let it control you, or define you.  It is what it is, and you have two choices.  Let it take over your mind and distroy you or live your life and know that you are not going to let this take over.  She has been through a lot right now and needs to go through the grieving stages.  Tell her it's okay.  But you are however old she is and you have to make adjustments.  Life goes on any way you chose it.  It's going to be a struggle for her t this time in her life.  My son wanted nothing to do with thenisto you, I had to take care of it all, but it presented a good time to for us to have some really good talks.  He got through it.  He just had his second take down at the end of January and things are going much much better.  By the way we are being treated at Weill Cornell.  Try not to let her to fall into a deep and dark hole.  But as moms, we don't let them do that!  Good luck to both of you!

Mommy, Jan's advice about lidocaine and topically applying remedies inside the anal canal are your daughter's best bet. I used Gold Bond medicated ointment for itch and burn both inside and out, but it had menthol which had a definite "Wow!!" moment associated with it - but 30 seconds to a minute later and all was better. My surgeon gave me a compounded ointment Rx that had lidocaine and several other ingredients and it was wonderfully soothing. 

The idea of getting medicine into the anal canal can be daunting for some; some use gloves, some use finger "gloves," and some just wash their hands really good after. But the relief it will bring is worth it.

Also, the burn will get better with time. Taking antacids or PPI's might also help reduce acidity and burn but long term use may alter the gut bacteria - with positive or negative affects. 

Steve

Hi Mommy, I just saw your post.  My 15 yr old son had his surgery in December at Mt Sinai too.  He just had his step 2 on 3/4.  His take down is not until June.  I would love to chat and share stories.  Who was your surgeon?   I think we actually chatted in the hallway.  I will private message you.

This hit home for me as I was 17 when I had my surgery and in hs. I was so happy to get rid of the ostomy but the first few years with the pouch were not what I was expecting. Has  been checked for a ln anal fissure? Had one myself for years that would only get slightly better using steroids. Then I was prescribed nifedipine paste and it made all the difference. Occasionally I will still get a little burning but the paste relieves it right away and my fissure has been gone for years. The pain from it was horrendous and baths really only helped when in the bath. Pain would come back as soon as I got out. Was on lortab and that helped a little but it was difficult to time it for right before I went to the bathroom. I hope your daughter can get relief soon. If she stops the narcotics Lomitol really helped me when I did because it continued to slow things down and give me time to heal and stopped any side effects from discontinuing the narcotics. 

Thanks so much to everyone for their thoughts and feedback. My daughter had a CT-scan -- two of them actually -- and her pouch is totally normal. Turns out this was all recovery related issues. I think after the second scan she had much more confidence that she is actually getting better and is no longer a 'sick' person. In fact yesterday she said she "felt really good." That is the first time I have heard her say that in 5 months!

Hopefully the move back to her regular old teenage life will continue. 

Thanks again.