Hi Airbailey,  might I start with saying this is my first post and I am excited to be able to discuss with other J pouchers.  I am faily new to to life with a J pouch.  From my short experience I have noticed some of the same symptoms.  It seems that certain foods cause the hellfire you speak of.  I have noticed that bread does it to me.  I'm not sure if maybe it soaks up more of the stomach acid that burns when exiting?  I avoid bread like the plague now.  Potatoes and rice however are just fine for me.  It is pretty easy for me to tell when a certain food bothers my butt because it goes through me in a couple of hours.  I swear by Calmospetine and sometimes I can't apply it fast enough.  I would think the blood would be casue for concern?  I am going about 6 times a day and 2 of those are due to my addiction to my morning coffee.  The only other gripe I have is the near spasms I have when evacuating my pouch and trying to gain weight due to everything going through me so fast. .  Either way life is a whole lot better now than it was with UC and taking that poison to treat it.

Anal fissure is a possibility? I was given a topical nitroglycerin ointment for a particularly painful, burning fissure. Best of luck....an irritated butt is awful. 

Is going 10 times per day your norm? If not, maybe there's more to it. 

Here are a few things you might consider:

1) Remember that barrier creams work when applied *after* a BM (to protect against the next one).

2) Have you tried psyllium (e.g. Metamucil) or other thickener? Some find stool less irritating if it's a bit less liquid.

3) Bleeding can be a sign of several uncomfortable conditions (fissure, hemorrhoids, cuffitis). Has your doctor had a look?

4) Have you considered a more careful assessment of which foods seem to bother you? A food diary can help. OTOH, it really sometimes has nothing to do with trigger foods.

5) Have you tried Lomotil or Imodium to reduce the frequency a bit?

 

I can't advise you about protein powder. I don't really consider it food.

Good luck!

Well I'll start by saying I've had my pouch for 20 years, I know you're probably sick of doctors but I would have the bleeding.checked out  Might just be a be a hemoroid. This might sound strange but I've found that I have to trim hair back their once in awhile. Not shave but trim.    Going to the bathroom that  much means tugging on hair every time you wipe. I have recently found Pysium husk dose bulk up stool in a friendly way. And the chewy energy bars seem to help and not make me go more.  Also found that giving myself a vitamin b shot once or twice a week  when needed helps with energy since your will now have a hard time manufacturing it . It's cheaper to do it yourself and your gi doc should give you a script well I hope this helps.  Plus use the barrier cream

I meant to say once or twice a month

Thank you for the support.

 

I was at the doctors for a external exam where they said everything was fine and a sigmoidoscopy where they determined I had a mild case of pouchitis.  At that point they gave me meds for the pouchitis which helped knock down a good portion of my bathroom trips especially at night which I am grateful for.  However I still have the issues around the exit.  I am in contact with my team at John's Hopkins where I had my surgery through email which is awesome because then I do not have to wait for calls.  But it seems like they are content with telling me to use Imodium and Metamucil with the pain pills until it gets better.

Here is my thoughts on those:

Imodium - the last few times I have taken this before bed I woke up and the next day I

felt awful and could not stop going to the bathroom.

Metamucil - Every time I take this I take it for a week or so and I see no improvement so I end up stopping.  Can anyone give me a timeframe when they saw improvement from taking Fiber powders.

 

Can anyone tell me where to find the ointments  Colloidal cream and Comfrey creme(I have Calmospetine,I and use it just not enough so I will start to use it more)

 

I am going to mention cuffitis to my surgical team to see what they say about that possibility as well because I never heard of that before.

I would really try the husk powder we mentioned at gnc.  And I use the barrier cream at Walgreens. And no carbonated beverages   It's worked for me and is currently the method to getting me back on track

I had my surgery 33 years ago. What I have done after every BM since day 1 is what my nurse told me to do. When at home, I have a wash cloth that I use to wash my bottom gently after every BM, using very hot water, no soap. She suggested cool water, but I found that it hurt more. I use water as hot as I can stand, it stings at first contact, but almost instantly quits and starts to soothe. Then I dry the area and apply A & D ointment (NOT A & D cream, too watery!) very scantily. Only need the barest film. Too much only makes it worse because body heat melts it and makes it run, which causes more irritation. Once in a while, if burning gets really bad, I will use a bit of soap on the rag, then rinse well. I have tried other otc ointments, but this one works best for me. When away for home, I carry a zip-lock sandwich baggy in my purse containing bath wipes that I have cut in half. I also carry a very small container with the ointment in it. I use to carry Tucks pads, but the wipes are much cheaper and don't sting like Tucks can. Don't use baby wipes, don't want to smell like baby powder! Use tp to dry, then apply ointment If I get in a hurry and don't wash, I usually regret it rather quickly and am hunting for the nearest bathroom again. I found a very small, 1" diameter, plastic container in the health dept. at Walmart, in a travel kit with several small bottles. It and the baggy, folded, will fit in my pocket if not taking a purse. Also, dissolving a little baking soda in water and applying will soothe the skin.

 

Regarding little pinpoint bleeding when wiping, I've had that for at least 7 years. My docs say it is from irritation of wiping on sensitive skin. Have noticed that acidic foods increase the burning.

I would add that Ilex paste is my best barrier cream, and as stated above it must be on before output, cleaned with Vaseline and reapplied. Can be ordered direct from company- Google it, and it cones quickly. I also take Colestipol, prescription from gastro, which reduces acid in output, since that is normally done by colon. Watching what you eat with food journal is great idea, and compare with output and how you feel.I would guess bleeding could be hemmeroid or cuffitis, both of which I have had. I have not had  a fissure, so cannot comment on that.  Good luck!

laurie

Love "MarB"'s answer.  Being scrupulously clean goes a long way toward helping with the discomfort.  I know that sometimes I could wipe and wipe and more poop keeps coming out, Finally I have to exit the bathroom or stay all day.  Within a few minutes I am itching like crazy and go back to wipe some very watery leakage.  I have found (jpoucher 20 years) that sugar causes itching for me.  Definitely use the barrier cream every single time.  I prefer calmoseptine.  I take lomotil at night and it really helps.  As for the blood, if it's just a couple of bright red drops, it's probably nothing, just from wiping so much.  (Or scratching...try not to scratch as it only causes more itching) But of course if it's constant or persists go to the doc.  

Does anyone have any advice on putting cream/ointment/barrier onto the sensitive skin when you are having to wipe so often? Because of the frequency of discharge, there's no way to keep any ointment on long enough for it to help at all.

Most recommend Ilex protective paste. It can heal the most excoriated skin. You do not wipe it off after each BM.

 

Jan

Wait, does that mean that the paste won't come off when you wipe? 

 

Has anyone else had this problem? Loop ileostomy and J-pouch since 1/2015 and still have discharge from the anus, not just mucus but blood too. The doctor keeps saying it's fine, and normal. It had been happening only once a month or so, but now it's been more frequent. The first hard-formed stool tears the anus and then everything just burns after that with no relief.

 

Also, I have heard people talk about cuffitis and pouchitis. Is that mostly something that happens to people with UC and Crohns, or can it happen with rectal cancer patients too? What's been happening sounds a lot like what people are describing pouchitis.

The Ilex paste will stay on through lots of output during your bathroom visit. It would last for more than one BM but I clean it off after each movement. Requires good dose of vaseline rubbed in, then wipe ckean with cosmetic pad or soft TP. It does take time and effort each time but so nice to start all clean again. I then reapply. I use generous amount of Ilex paste when going out, as it gives protection if leakage starts and I don't have immediate access to bathroom. I also think it stops leakage by plugging it up- I know crazy but very welcome relief if I'm going out.  If I'm at home just a thin coating does the job, and makes for quicker cleanup. The unique think about the Ilex paste is that it adheres to wet skin like when you have Vaseline, Prearation H, or  Cortifoam on. Other creams need skin to be dry.