Tenesmus

I think you should definitely reach out to your gastro for help.

Some people say Lidocaine cream helps since it numbs the area

Thanks Lauren. I have a new gastro doc who I have a phone appt with on Dec 15th.  I am allergic to Lidocaine and almost all other "canoe" products.  We'll see what happens.  Sleep loss is huge.

I wonder if its cuffitis. I had some similar issues, had scope and the pouch looked good but did show cuffitis. I'm doing canasa suppositories now. Still struggling but hopefully will improve.

Does this seem anything like your prior bouts of pouchitis? If so, Cipro is usually an effective alternative to Flagyl - you didn’t say if you’ve tried it. Kmiller’s suggestion of cuffitis is also a real possibility that fits most of the symptoms. Do you think the external rash might just be from the frequency?

Thank you KMiller and ScottF.  I used Salofalk suppositories and enemas with my UC prior to surgery which helped somewhat. My scope of pouch on Dec 21 may indicate the source of problem and, you may be right KMiller with regards cuffitis. Things are different and more intense this time.  Very Crampyas well.

Scott, I agree that the frequency is destroying my skin. I am fair with sensitive skin from the get go.  I am allergic to Cipro. I did use a course of Amoxil for a UTI which seemed to improve GI inflammation as a side benefit.  That may be an antibiotic alternative for me moving forward. Coincidentally, I used a protective cream called Secura that I got from Mt. Sinai Toronto after surgery 3 years ago and kind of shelved it with the other rejects. I tried it again last night on clean, dry skin. I put a pad on and I surprisingly slept 7 hours straight. I had a bit of leakage but that gel like product did protect my skin. Hurt like the devil applying to bad skin for half hour. I will keep using that for the outside.

You guys are the best. Thanks again.

Hi GEB56,

I’m 3 years out and experience similar symptoms. Through trial and error, here’s what I’ve found helps:

- When symptoms get this bad, I give my bowel/pouch a rest. For two days, I go off solid food and drink 3-4 elemental shakes per day. I’ve been using AbsorbPlus since my UC days. Since the formula is essentially pre-digested, there is little if any stool. Because of that, your fissures and/or other inflammation from frequency will have a chance to heal.

- Continue with the very warm sitz baths.

- Use a toilet seat bidet or bottle bidet with every BM if possible. Pat dry carefully. Use a hair dryer on cool setting to completely dry the skin. Spread your cheeks and make sure it’s dry. Apply Ilex paste (available on Amazon—it’s the best for damaged skin!).

- After 2 days, begin solid food with a small amount of slow cooked oatmeal (never steel cut) and continue using the shakes as needed to maintain nutrition and protein. Eat foods you know are gentle. And of course eat your dinners as early as possible.

- Most important, never strain on the toilet. If you eat soluble fiber foods like oatmeal and bananas, you will pass stool with the right consistency and that helps you to not strain. If you feel trapped gas after the initial flow and you start to push and strain, STOP. Just get up, clean up and be done. You’ll have to go soon enough again and when you do, it will hopefully be easier. For me, even slight straining can cause pain and discomfort for days.

I’m also using Canasa generic right now as well as Visbiome. I also use 1-2 Lomotil tabs at bedtime and that definitely gives you better sleep.

Hope your situation improves!

@GEB56 posted:

Thanks Lauren. I have a new gastro doc who I have a phone appt with on Dec 15th.  I am allergic to Lidocaine and almost all other "canoe" products.  We'll see what happens.  Sleep loss is huge.

You are welcome, let me know how the December 15th appointment goes; I hope everything works out!

@GEB56 If a different antibiotic is the right next step rifaximin would be a good one to try, if your health service is willing to pay for it (it’s pricey). Some folks get good results from it (though I didn’t), and it mostly stays in the GI tract, so there tend to be few systemic side effects, if any.

Hi Jfill21.  Thank you for such extensive comments.  I looked up Aborbplus and will order it.  It sounds like a very well balanced and easy tolerated product.  Bowel rest with just clear fluids is torture.  This sounds like a nice mid point.  Anything that may help is worth trying. As far as the probiotic, I cannot take that as there is a contraindication with taking it when on steroids. I am on low dose steroid for the rest of my life now due to secondary Addison's and live bacteria can cause rare infections.  You are also correct with regards straining.  It is hard to resist when you feel a heaviness and that there is more stool to empty.  It is often futile, however, and the soreness and swelling just becomes worse.  I already use a spray bottle, pat dry, hair dryer thoroughly and healing/protection gel that I like by Secura and got from the hospital 3 years ago.  Unfortunately, life gets in the way sometimes and I am not always in a place I can look after that.  Also the leakage at night is a problem. I will let you know how the elemental shake goes. Not sure if I should get the one with dextrose or fructose.  I am not sure of all of my intolerance.  Any thoughts?

Hi ScottF.  Thanks for your suggestions.  Unfortunately, Rifaximin costs about 670.00/month.  I am 64 and on a very fixed I come.  I have no coverage for that antibiotic.  Too bad though.  I find I think ahead of what to do next if something fails.  Hate to be pessimistic, but sometimes it happens.  I figured the Jpouch was the ticket to health and no pain.  I was wrong.  It is just a different set of problems than UC.  Still better.

Thanks again. Much appreciated.

@GEB56 I’m sorry about the rifaximin. Has a biologic medication been considered, or do the steroids rule that out, too?

@GEB56 posted:

Hi Jfill21.  Thank you for such extensive comments.  I looked up Aborbplus and will order it.  It sounds like a very well balanced and easy tolerated product.  Bowel rest with just clear fluids is torture.  This sounds like a nice mid point.  Anything that may help is worth trying. As far as the probiotic, I cannot take that as there is a contraindication with taking it when on steroids. I am on low dose steroid for the rest of my life now due to secondary Addison's and live bacteria can cause rare infections.  You are also correct with regards straining.  It is hard to resist when you feel a heaviness and that there is more stool to empty.  It is often futile, however, and the soreness and swelling just becomes worse.  I already use a spray bottle, pat dry, hair dryer thoroughly and healing/protection gel that I like by Secura and got from the hospital 3 years ago.  Unfortunately, life gets in the way sometimes and I am not always in a place I can look after that.  Also the leakage at night is a problem. I will let you know how the elemental shake goes. Not sure if I should get the one with dextrose or fructose.  I am not sure of all of my intolerance.  Any thoughts?

The company has excellent customer service. I have called to discuss my situation so you might want to ask about fructose vs dextrose. They also have samples.

I had the exact same symptoms, so i know how difficult this is. I tried flagyl too, didn't do anything for me.. The i tried cipro and everything changed after 12 hours.. Like a new life.

I went of cipro after a week and a half, symptoms slowly got back and got pretty severe again. So i got a new course with cipro and after a day again everything is perfect again.

There's no sign of pouchitis when i had scopes, so I'm not sure if it's pouchitis or not.

I wish I wasn't allergic to Cipro.  I am happy that works well for you.  We all need solutions so we can get on with our lives.

jfill21 Thanks again. I will call the company. Samples would be great so as not to waste big money on the wrong product. I will get on that today.☺

@Jfill21 Could you please explain how AbsorbPlus helps with diarrhea?

Thanks

My use of AbsorbPlus is primarily to maintain nutrition while giving my pouch a rest from pouchitis. Prior to my jpouch I would use the shakes when in a UC flare to calm my bowel.

Hi - I’ve had the pouch since 2010 with chronic pouchitis and tenesmus. My doc and I went off use with Ativan .5 - and that does seem to help . She wrote for .5 3x a day but I don’t need unless really bad. I have made myself rso oil (Rick Simpson oil) cannabis suppositories / I tried to get the highest cbd content but the rso oil is a special blend used to treat cancer with higher doses. I use cocoa butter and the rso oil - heat them up and mold  into suppositories and use as little as possible a dose because I don’t want the high. This relaxes the entire area better than any pharmaceutical and I m not running to bathroom - at a small dose applied directly to rectum - seems to really work for me where pharmaceuticals have failed me for the past 40 years. (I’ve had UC since age 10 a had everything and they either have horrible side effects, make symptoms worse or stop working after a while. I’m trying everything I can to stay out of hospitals. I got a bidet that cleans and dries area and watch diet and timing of food closely. Good luck / this is a painful condition. I am still able to work at a high level of thought with the rso suppositories. hope this helps in your research. Regular docs won’t know much about cannabis so do your research - my doc said - please try it and tell me if it works ! Lol