I'll start by saying that I've had my pouch for over 7 years and I'm generally happy with it.

 

Do you still get butt burn? - Yes, I get butt burn/irritation a few times a month, and at times it can be bad. Although certain foods can exacerbate it, it's not one of those things that's necessarily food specific for me and it just seems to happen sporadically. Of course, I've long since given up trying to figure out why it happens (unless I've been frequenting the buffet at Mexicali Rosa's or whatever LOL) and have just accepted that it does happen, and I deal with it accordingly.

 

Do you still use cream each day daily? - Not daily, but I always keep a stash of Calmoseptine on hand and I use it when I have butt burn or hemorrhoids.

 

Are the toilet trips lengthy? (Amount of time spent in the toilet) - I'm not really sure how to answer this as I never time bathroom trips.   In this department, the most annoying thing is running in for a quick #1 and then usually having to deal with a #2 as well, but that's kind of my new norm and so I've really stopped paying attention to it.

 

Are you able to eat all foods? - no, but that has less to do with the pouch and more with the fact that I am careful what I eat as I have adhesions and I've modified my diet somewhat to minimize discomfort/risk for obstructions.

Do you have bad days and if so is it just increased visits to the throne or is there pain /urgency also? - sure, I still have the odd 'bad' day, and by that I mean days where my frequency is a bit higher, but even then it's never bad enough to prevent me from carrying on with my normal activities. I never have urgency. The most annoying issue for me (aside from adhesions) are the days when I have excess gas rumbling around. I take probiotics and it helps. However, most days I hardly give my pouch a second thought, and that's how it should be.

Thanks for your reply Spooky!
Regarding my time spent in the loo.. Is it straight in dump, & out (pardon the pun) lol or does this straining and pain that I'm experiencing go on .. ( take down 9th March, still going 20-40times per day)

I very rarely strain.  Generally if you're straining, there's a problem (for instance, stricture, obstruction, etc). Sometimes I do have to push a bit, but that's usually to get the last bit of gas out. Gas can be harder to pass than stool at times. Stool that is thicker is harder to pass and takes longer.

My responses:

 

Do you still get butt burn?

Not since one year post takedown.  My body adjusted.

Do you still use cream each day daily?

No, see prior response.

Are the toilet trips lengthy? (Amount of time spent in the toilet)

No. I only have incomplete evacuation when pouchitis is not under control.

Are you able to eat all foods?

Yes, but I have eliminated carbs and sugars due to SIBO and the potential to exacerbate chronic inflammation, and red wine gives me diarrhea.

Do you have bad days and if so is it just increased visits to the throne or is there pain /urgency also?

Bad days only when I am off antibiotics for longer than 7-8 days and then they become very bad and the urgency progressively increases.  So I don't go off the antibiotics. With antibiotics I only occasionally have an odd bad day and when that happens, I rotate/adjust dosages/take Pepto Bismol and I then clear the flare. This same process for 20 years now.

I still get butt burn occasionally....maybe once or twice a week. Usually depends on what I ate.

 

I do not use cream daily. I use it as needed.

 

I am in and out of the bathroom as quickly as urinating.

 

Yes, I am able to eat all foods. Some may bother me more than others but not enough to keep from eating them.

 

I wouldn't say I have "bad days" but there are days when I do go more often than average. I never have pain or urgency.  Knocking wood, I haven't had pouchitis yet so I don't know what that feels like.

 

 

been 8 yrs and would like to pass on some help....what works for me might not work for you.

Do I get butt burn? only if i eat the wrong stuff - Fried foods like fried eggs/sugary stuff like ice cream kill me the worst. i also avoid cinn. and msg because for some reason it burns.

use cream? A n D ointment works the best - get the cheap walmart brand. if i have butt burn i put some on before going to bathroom.

toilet trips lenghty? yeah sometimes 10 to 15 min. I dont time it just wait till i am empty. u know when it happens...

i also use no meds....they were messing up my brain and my stomache so i quit about 3 years ago...i poop more often but feel much better...

bad days? no not really just everyday I have to be aware of lengthy time with no bathroom access. i also stand at work all day so i go much more on those days - gravity maybe?

good luck hope this helps - also wash the area whenever possible and keep butt dry - i change my underwear a lot for comfort and helps the burn

David

Great topic and some really enlightening answers!
I see by the answers I am getting to near normal!
Keep em coming.  I would like to read more responses.
Good...good question to ask.
Richard.

At home I have a bidet so I spend a few minutes on the throne.  It feels so good!  When out and about I don't spend much time at all on the toilet.  Every time I need to urinate, I naturally empty my J-pouch.  No straining is necessary.  I use Calmoseptine only when I really experience butt burn.  Not always then, either!  I eat and drink whatever I want!  My J-pouch is a miracle and it is my new-normal!  I've had it since 2002!

       

I had takedown on feb16th so nearly 2 and a half months ago.

 

I only seem to get burn if I eat something hot/spicey. I do always wash with a handheld bidet after emptying (its a portable one and I take it out with me in a wash bag wherever I go). I think if I didn't use that I would get more burn. I only use calmpseptine now when I feel a bit itchy or sore after wiping. at first I was using it every time I went to the toilet.

 

my stool is usually semi formed and I seem to empty in 2 or 3 waves. I like to take my time, 10 mins on average and make sure it all empties. I think maybe my pouch fills up again whilst I am on the toilet so that's why I need to take a bit of time. I was straining more at the beginning but that's got a lot better. maybe just a bit of a push to get the last bit out and some gas. I do like to drink one or two coffees a day to flush everything out.

 

I seem to be able to eat everything I want now, although I do avoid hot/spicey things because it will hurt later on. certain things will make me go more often/give me gas, but I can't really narrow it down to anything particular so I just eat what I want.

 

my biggest problem is overeating, its a bad habit of mine, and that increases my frequency.

 

I dont get much urgency now, unless I have held things in for longer than im supposed to. then it gets uncomfortable, but I have good control

 

if I overeat I get a bit of bloating and abdominal discomfort too but it passes

Mysticobra/Richard.. When did you have your takedown?
Has it always been plane sailing?

Thanks for the replies guys.. Seems I'm a long way of normality.. Then again, I've been chasing it years before I got a jpouch so I suppose I'm getting close (always a bright side!!)

Cheers, Marty

Bloke.
I won't go into it but I didn't have a chance to wear the bad long enough before I was hooked up. Initial surgery was laproscopic.  I had problems less than a month after my initial surgery and they opened me up and while in there and hooked me up and took the bag off.  And less than a week after that I had problems again and had to be opened up.  So it wasn't a pleasant trip but it has been a year and a half now since my initial surgery.  And I guess it would be 17 months since my supposed takedown. 
I sometimes wonder if things would be better given the chance to wear the appliance for a few months to let it heal properly.
It is what it is.  Rough ride.
Richard.

Oh... And to answer your other question on plane sailing.
It has definitely not been that.  Just the complete opposite.
I am a heck of a lot better than the start.  I almost died on the third surgery.  And actually wanted too.  That bad.  I lost 50 pounds.  I was only 176 to begin with and cried when I looked in the mirror.  I avoided mirrors.  I have only gained 18 back and have a ways to go.
I have good days... But bad days outnumber them still.
I also am still positive about the whole thing.  I believe deep down I will get better at it.  With it... And it will get better. 
Richard.

I've had many years to adjust to my new plumbing (24 years), but here are my answers:

 

Do you still get butt burn?

Infrequently, but it can happen.  Generally if I eat a lot of acidic foods, it can happen.  When I used to eat granola or high fiber of that sort, it was like sandpaper coming out, and could irritate me.  However, my irritation these days stem less from what I eat and more from occasional fistula output around the seton, so I do opt for some ointment here and there. 

Do you still use cream each day daily?

As per the previous question, no. 

 

Are the toilet trips lengthy? (Amount of time spent in the toilet)

No.  I can usually be in and out within 10 minutes or less. 

 

Are you able to eat all foods?

For 20 years, I ate everything and anything, and I mean everything.  Last few years, along with my fistula, have had some outlet narrowing that causes me to be a little more careful with what I eat (avoid large amounts of fiber, nuts, mushroom... things like that), and I also was getting some bloating and discomfort the older I get, so I did the FODMAP elimination diet, and I avoid some triggers I found, along with really lowering  the amount of "bread" type carbs and noodles, and rice, and potatoes that I eat.  Those foods make things too thick for me, and just gum me up too much, and make me uncomfortable. 

Do you have bad days and if so is it just increased visits to the throne or is there pain /urgency also?
Usually have 4-6 BMs a day, rarely ever more than MAYBE 8, but that's rare, unless I'm unwell.  Rarely have to go through the night, either.  Never have pain and/or urgency. 

 

No to all answers. Except:

No longer use mushroom soup as an ingredient, switched to using celery cream soup.  Strange that I can eat mushrooms no problem, but the soup gave me nausea and diarrhea.  Also, I must chew peas and corn (husk foods) very well, or I have trouble passing.  I have a tendency to inhale my food.

Sometimes when I go, think I am done, stand up to leave the bathroom, I have the urgency to go again.  Rare, but it does happen.

Do you still get butt burn? No

Do you still use cream each day daily? No, I haven't used creams at all for at least a year (almost two years since takedown)

 

Are the toilet trips lengthy? (Amount of time spent in the toilet) It still takes me longer to empty completely than to urinate, but no, definitely not lengthy.

 

Are you able to eat all foods? Spinach and leafy greens -- cooked or uncooked, it matters not -- give me increased frequency. I choose to avoid these foods most of the time because I'm very busy day to day and would rather not deal with the consequences.

 

Do you have bad days and if so is it just increased visits to the throne or is there pain /urgency also? If I eat greens, I have increased frequency. If I overeat a lot -- I'm talking about like Thanksgiving level -- I will have more trips and sometimes have pain, though I don't think that's very different from someone who has a colon.

I've had my pouch 22 years and have gone through some pretty bad times with it (pouchitis, cuffitis, fistula, sepsis), but things have settled and doing much better in the last 4-5 years. 

 

Do you still get butt burn?

BB, not so bad at the beginning, but the last 5-10 years, yeah, it's a fact of life for me anymore.  I'm pretty sure it's due to RV fistula, however, I do notice worsening when eating hot, spicy foods (my fave, naturally). 

 

Do you still use cream each day daily?

Yes indeed, pretty much after each BM.  I've tried them all - A&D Ointment (Target's brand) is my current favorite.  I also use a Cleveland Clinic butt protection paste ($$$$$) at night only.  I was a big fan of calmoseptine, but I've been wondering whether I've started having some kind of reaction to it, as the burn just doesn't respond to it anymore, and sometimes gets worse with it.  I'm considering making my own paste - there are a number of "recipes" on the web.

 

Toilet trips lengthy?  No - in and out in a matter of minutes, unless things are feeling "stuck", then it's in and out numerous times.  This doesn't happen too often anymore.

 

Able to eat all foods? 

I avoid raw garlic/onions - the absolute worst food for me due to gas production.  I also have sadly started avoiding spicy foods.  I tend to avoid extremely fibrousy foods such as mushrooms.  I feel that I can eat almost anything else, as long as I eat small portions of possible problem foods, such as raw vegees and dried fruit, and chew everything forever.

 

My "bad days" involve increased visits to the toilet, but I never have pain (outside of BB).  Urgency is very rare.  I do take 2 immodium at bedtime - very effective for me.

 

Final suggestion for those of you on the fence regarding bidets - do get one!  You can find cheap, easy-to-install bidets on Amazon that are around $50.