I had been doing great.  Up until middle of February.  I thought I had pouchitis.  Long store short.  After researching I believe I have cuffitis.  The doctor called in Proctofoam HC.  Wow I don't care for it at all.  Puts air bubbles in the rectum.  But I did find relief.  I didn't realize it's only a 5 day supply for me.  I have left over suppositories so I use daily that last night.  It helped but this morning I'm going right back down hill.  I go to my GI Dr on Tuesday.  What I'd like to know is what can they do for cuffitis and should I ask for the cream instead to use rectal?  ( Cream being just hydrocortisone).   

I want to be prepared when I go Tuesday.  Also I hate putting medicine in rectum.  It hurt s so bad.  I do use a lube but still hurts so bad.  Any advice would be greatly appreciated.  

 

First surgery 1/27/12 removed colon for precancerous cells.  Found out the same time I had the precancerous cells I had UC.  Take down was 3/16/12.  So not much was done with my UC because I had to have colon removed.  

Original Post

Medicine administered rectally is really the preferable way to treat cuffitis, because it allows the smallest effective dose. This is especially important when steroids are used.

There are two basic medication choices used most commonly: steroids (e.g. Proctofoam HC or Uceris enema) or mesalamine (e.g. Canasa suppositories or in enema form). If you’re lucky the cuffitis flare will pass and you might not have to treat it all the time. Since you went 6 years without a flare the odds are pretty good.

It’s hard to tell what’s causing the pain when you apply the medicine - if it’s your inflamed rectal cuff then it should start to calm down with treatment and be easier to use. If it’s something else, like an anal fissure or a sphincter in spasm then that should be treated separately.

Good luck!

I agree that it is pretty likely that you have an anal fissure or at least anal irritation in addition to cuffitis. Perhaps you evevn have an anal stricture. The cuff itself does not have pain receptors, but there are oodles in the anal canal. You can get cramping, urgency and painful spasms with cuffitis.

Your doctor should be able to sort this out. Ask about an anesthetic gel to use for inserting suppositories.

Jan

I wish my rectum would have been removed when she made my jpouch.   I do have a question.  I was told by the pharmacy that there is a cream with steroid medicine.  Has anyone tried that?  If I don't have cuffitis what can they give me to stop the throbbing pain?  How can they tell if cuffitis?  I truly think that is what I have.  The foam is a waste of money.   My goodness over $149.00 for 5 days.  I have refills but who can afford that.  I wish I would have got the cream to do rectally.  I'm so over all of this crap.  Geez can't anything go right for us.  I don't believe I have a sticture.  My husband helps me with all this stuff and hasn't seen that.  I truly appreciate both of your help.   It means the world to me.  I hate googling you get all different information.  

 

What are you trying to accomplish with a cream? Are you hoping to apply it externally to avoid the discomfort of inserting the medication? If so, I don’t think that’s likely to be useful. Are you hoping to save money (vs. Cortifoam)?

Steroids don’t work immediately - you have to give them at least a week to see whether they are starting to help. Does your doctor know that you’re having so much pain just trying to use the medicine?

Hydrocortisone suppositories are relatively inexpensive and appropriate for cuffitis. Canasa suppositories are expensive. Sounds like you need a plan with better drug coverage. But, sometimes you have to accept the cost if you have a high deductible. I usually reach my out of pocket maximum before the end of February. We just plan for it. 

Cuffitis is usually diagnosed by history and symptoms. You can have a scope to confirm, but that often costs more than treatments. If you have a fissure or stricture, you doctor can tell by a visual and digital exam. 

Jan

The cream is internally.  It's called Proctosol HC Hydrocortisone Rectal Cream 2.5%, Hemorrhoid Relief.  This what I'd like to try.  I'd love a better insurance plan. Our deductible this year is now at $6,900.00.  And my husband has a awesome job at one of the big three automotive companies.  My GI doctor has me do a scope every year.  I appreciate all the help.

One of question.  Is Canasa better then the Hydrocortisone at treating it better?  Just wondered.  I know everyone is different.  I also didn't realize it takes a week for the hsteriods to work.   Oh and as far as putting the suppository in I use lidocaine 2% jelly.  

Sorry for all the questions.  I do appreciate all the wealth of information you both have.  

Proctosol is for external use. It might be applied *slightly* internally to treat internal hemorrhoids, but never deeply enough to reach the rectal cuff. If the issue is that it’s painful to get the medicine to the rectal cuff, it doesn’t matter whether it’s cream, foam, liquid, or suppository, it would still have to pass through the anus for insertion. If the pain is simply too extreme for local treatment you could try oral mesalamine or oral steroids, and that might cleear up cuffitis for you, if you’re patient, but these oral medications (especially the steroids) have more side effects.

If *all* of your symptoms are about pain in the anal canal then I wonder if you have cuffitis at all. Do you have bleeding? Whether you have cuffitis or not, though, that local pain needs to be diagnosed and dealt with.

The lidocaine jelly should work well enough to insert suppositories. Both Canasa and hydrocortisone suppositories are pretty much equally effective, but Canasa is much more expensive (brand name only). 

If it helps you to not feel alone, our deductible is $9600 for both my husband and me ($4800 each). Health care is our biggest expense. 

Jan

hopefully you are feeling great since this was a few months back!

i've been there several times w/ "out of nowhere" cuffitis flares even with 5 years past and great pouch function. i know how badly that ring of fire burns. this is an amazing ointment that you need a script for and must get compounded but it works wonders! my amazing j-pouch surgeon formulated this:

*ketam/lido/diaz/baclo 3/5/0.75/2%*

it's ketamine, lidocaine, i think diazepam, baclorin (an antibacterial)...i apologize i'm traveling and don't have the full names but any compounding pharmacist will understand the script line on the label. you just need a dime/pea size applied right inside the cuff up to 3xs/day. i keep this on hand always and it has got me out of some painful episodes. it lasts a long time and 3 tubes will set you back about $60.

as jan says, remember, it will pass!  

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