I’m sorry you’re going through this, Parrr. There are a couple of things I can think of that might help. Your probiotic dose is actually not very high - my dose is 3.6 trillion daily (4 packets of double-strength VSL #3). You can also use Lomotil or Imodium pretty aggressively - how much are you taking? Also, how are you using the psyllium?

It might also be worth getting tested for C. diff, since some antibiotic treatments increase the risk of developing that infection.

I was checked for C-diff, it was negative.  I take psyllium husk pills.  It seems that either they don't help if I take 2 or 3, or if I take 4 or 5 I get bound up.  But when I take 4 or 5, I  constantly have to go, but with little output.  And that is when the incontinence is the worst.  Any little movement bending, twisting, or initial movements to walk causes the incontinence.

4 Lomotil a day do nothing.  6 Imodium a day do nothing.

Hi Parr,

I had similar issues with psyllium, immodium, lomotil etc. as they ever really solved my problem. I finally had a dramatic turnaround when I started eating one cup of cooked GF steel cut oatmeal every morning. It's seems ridiculous that this everyday item should be such a lifesaver for me but it was. The oatmeal HAS TO BE steel cut (not rolled, processed or quick cooking) and I swear it acts not only as a bulking agent  but also a "broom" to sweep everything out of me once a day. Since I began this routine I have not been on any meds and my annual bouts of potties seem to have disappeared.

Good luck to you...I hope you can get it figured out so you can keep your pouch.  

LOL...pouchitis...not potties ( autocorrect?)

Has your doctor done a pouchoscopy? That might help narrow this down. The Augmentin timing sure suggests pouchitis, and it might be worth trying a different pouchitis med, like rifaximin. I found that psyllium capsules didn’t work well for me (they didn’t mix properly), but the powder does the job well. And I do suggest you try a much higher (10-20x) probiotic dose for a couple of weeks at least.

Do you have a gastroenterologist? A good one is sometimes more helpful than a surgeon. Good luck!

After seeing the surgeon today, I am trying, as a last resort, Opium Tincture.  We are giving it a week.  If no positive results, then back to a bag.  I haven't decided to go permanent or temporary end Ileostomy.  Fingers crossed that this works as I do not want a bag the rest of my life.

I did have a scope today and no Pouchitis.  So at least that can be eliminated as a possible cause.  I had a Stricture he dilated so I  should go easier should things get back to a more normal.

Scott, where do I  find the strength probiotics your talking about?

Maybe another test for c diff? My doc said sometimes it can be a false positive... so sorry you’re going thru this. 

The strong probiotics I’d suggest are either Visbiome Extra Strength or VSL #3 DS. Visbiome is advertised on this page. Both require a doctor’s prescription.

C. diff tests can certainly give a false negative result, especially if you’ve been on antibiotics recently. Some of the tests are more accurate than others - I’d suggest the PCR test.

Getting that stricture dilated may indeed help, but strictures sometimes have to be dilated repeatedly before they will stay open.

Stool transplantation (technically fecal microbiota transplant or FMT) via endoscope has become the "standard of care" for recurrent C. diff infections with a ~90% cure rate.  FMT has also shown good efficacy for pouchitis with or without the presence of the C. diff pathogen.

https://www.health.harvard.edu...ctions-2019050916576

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4834257/

https://www.researchgate.net/p...on_FMT_a_case_report

A clinical using FMT for chronic pouchitis trail was completed at UCSF April of last year but the results have not yet been published.  You may check here from time to time for the results to appear: 

https://clinicaltrials.gov/ct2/show/NCT02428361

In your shoes, I certainly give FMT a shot before reverting to permanent ileostomy.
Best wishes or you

Parrr, I hope you find out what is causing your difficulties. It's hard, I know, but younwill get through this in time. My first few months I was so desperate because of frequency (every 15 minutes, every 1/2 hour). I eventually got better around eight months when everything seemed to mature and settle down.

Until you find out what's causing it, remember to protect your skin from your burning and frequent output. Try using a plastic bidet squeeze bottle. Use it with warm water to rinse your bottom after every bowel movement to wash away any stool residue. Keep that area clean and dry and hopefully your skin will not break down from your frequent and acidic output. If it does become raw, that is not unusual so try not to worry. It will heal as soon as your output settles down. During the first few weeks of my recovery I used the squeeze bottle, carefully dabbing completely dry. I used Zincofax to protect the skin and heal abrasions. The travel bidet was so important I installed an attachment on the toilet, hot and cold water (Amazon)!  Be patient; it is very, very early in your recovery. Your new system is trying hard to learn how to live its new life and how to function for you. I ate zucchini and that helped give some substance and "ease" to my output. PEEL, drizzle with olive oil, single layer on a baking sheet or tray, put in the oven or a toaster oven at 325F until soft. Later on, when you've recovered, you will be able to eat the skin, but not now. Good luck, Parrr.

Winterberry, I installed a Bidet on my toilet.  Greatest thing ever.  Or at least when my output is more solid.  When I have very watery output, and excessive trips to the bathroom, I get fissures that burn severely when water hits them.  Same thing with the other burned skin.  Water hitting it is like salt in an open wound.

You're right, a stream of water from the bidet will hurt, especially if your skin is inflamed or you have fissures. Try this instead, I learned it from a nurse before my surgery: she knew I would need to know. Get a sitz basin. Set the basin in the toilet  -- leave the set up -- the basin is meant to fit right into the toilet. Fill the basin with very warm water, as warm as you can tolerate (but not hot!). Sit yourself slowly into the basin. Don't worry, any water that you displace will simply flow out of the opening in the back of the basin and into the toilet.

Sit and soak your bottom until the water cools. Warm water encourages blood circulation to that small, painful area and this will help heal the cuts and fissures and soothe the broken skin from the inside. It's easier than filling a bathtub, stripping down, and setting your entire lower half in a few inches of water. You might already know about sitz basins, but this could possibly help someone else too. You can find a sitz basin at a home health equipment store, a drugstore, or online. They cost approximately $12.00. I bought one and used it the first few months and, miracles, it healed my fissures. Never had to use it again; it worked. 

There is also an option for a BCIR instead of a permanent ostomy, but remember you are very early in your recovery to consider permanent ostomy. A member here, BillV, is very knowledgeable on BCIR.  Do a search on this site. Sometimes when you know you have options and arm yourself with solid information, it is less stressful and you can make informed decisions. 

Since taking the Opium Tincture, along with taking Psyllium husk "powder", things have calmed down.  The watery diarrhea is gone, I have more formed stools, and my skin has healed.  The jury is still out on whether or not this will continue, but it  seems like this has promise.

Parrr, I’m glad it’s going better. I suggest you be careful not to overdo it. If the stools get too formed you could have a different sort of trouble. For me the most useful goals are no urgency and reasonable frequency, perhaps 4-6 x per day. I don’t like watery stools, but anything with more structure than that is fine with me. I’d suggest continuing (or starting) the strong probiotic, which might work better now that it’s not going into a fire hose. After things have really had a good chance to settle you might experiment with reducing the tincture of opium and replacing it with Lomotil, but that’s between you and your doctor.

Thanks Scott.  First thing was to slow things down.  The Opium is $260 for a month's prescription, so yes, using something else would be better, for several reasons.