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Jpouch blog gone viral, has raised questions for me

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Posted 2/21/2015 3:32 PM (GMT 0)
This post about using disabled toilets with a jpouch has gone viral where I am sobadass.me/2015/02/17/to-the-woman-who-tutted-at-me-using-the-disabled-toilets/. It's caused a lot of awareness and it's really great, but it's highlighted a few questions for me.

The author says ' I had a pouch made from my small intestine because my disease ridden colon was removed during surgery, the noise I make when I defecate is hilariously loud. Seriously, I get it. It’s comedic in it’s volume.' Okay... nobody ever mentioned anything about how the noise would be louder but it's cool, I can live with that. But then she says:

'Perhaps you could have stopped and heard me sobbing with pain because the acid in my stools has no way to be neutralised because I don’t have a large intestine and so opening my bowels actually burns my skin.'

opening my bowels actually burns my skin

Had no idea this was the reality, I thought the temporary ostomy bag would be the hardest part of getting a jpouch. I've heard a lot of jpouch positivity, how it's the best decision people ever made and that it's totally normal apart from more frequent and looser stools, but it seems I've not been listening to the whole story. Is 'sobbing with pain' from acid burn really so much better than UC pain?? Has made me think twice about being so open for surgery
Posted 2/21/2015 3:47 PM (GMT 0)
"Burns my skin" is a bit of an exaggeration, although having experienced butt burn (the phenomenon she's referring to) I don't begrudge her the hyperbole.

Butt burn is real. It's not that the acid is SO CORROSIVE that it burns you IMMEDIATELY, it's moreso that it can be hard to clean yourself thoroughly with dry toilet paper, so the acid can sit on the skin and cause irritation. Then, the next time you have a bowel movement your skin is already irritated, the cycle continues, etc. This is why it's common to use some kind of diaper rash ointment like A&D right after takedown, to form a barrier and protect the skin.

People who suffer from incontinence, especially nighttime leakage, tend to have more problems with butt burn because small amounts of liquid stool leak out and sit on the skin, again leading to irritation over time.

I am not saying that butt burn is the fault of the person who is experiencing it, but there are a lot of pretty straightforward ways to deal with it. I personally do not get it anymore because I use a bidet at home and I suspect my skin has simply toughened up a little over ~18 months since takedown. I have cried from butt burn once that I can remember... the night after having an unbelievably spicy Mexican meal. I'm pretty sure this would have happened when I had a colon, too. I chose to eat it and suffer the consequences (it was darn good!).

Regarding noise, I (like many but not all j-pouchers) cannot fart without having a bowel movement. It's not a big deal for me because I also seem to have a lot less gas since the colectomy, but the result is that I do fart every time I have a bowel movement. It is usually not loud enough to be heard in a public toilet, especially if I'm peeing at the same time. If I have been holding in a BM for a long time -- say 6+ hours -- there will be more gas and my BM will be louder (more farting).

In summary, I completely believe what this woman says about her j-pouch experience, but based on my experience and my knowledge of j-pouches in general, it's also not what I would call a typical outcome.
Posted 2/21/2015 6:50 PM (GMT 0)
I'm only going to touch on a few points but I agree with a lot if not all of what Pluot wrote.

There is likely to be a bit of irritation from more frequent bms, as well as if you have a raw spot from this the fluids from your BM would be irritants. I wouldn't say it's as bad as this person is mentioning, but I'm sure it could be, everyone is different and experiences things differently.

I do like the idea of using a bidet, I plan on installing one for myself. I do find some days when I need to go more often, or if I get stuck somewhere using some "sand paper" toilet paper and I get irritated I put cream on and it helps a great deal. There are also many options as far as other wipes go, also when I got my reversal done the hospital gave me a squirt bottle, fill it with water before you go and use it to wash your bum (your own bidet).

I know my skin has toughened some since my reversal, after the reversal you have to remember that you haven't had a whole lot of wiping action down there and you will feel it.

As far as noise goes, yes it can be loud, I usually pass gas every time I have a BM and it can be loud. Usually I just deal with it, but there are options (at least some times) turn the exhaust fan on, run water or something else. I can't fart, however I will in my sleep on occasion, no BM, it doesn't happen very often but I think it's funny that my body can manage it subconsciously but I can't do it on my own, I also think it has a lot to do with sleeping on my stomach.

I'll end this with; My life is greatly better with the jpouch then having colitis. Colitis is random and you never know when it will strike. Yes it can be noisy, there are other issues that come with it but overall life is better. There is also a lot you can learn to do to make the whole experince better, like getting a bidet and not eating that spicy food (or at least not every day or not when you're out), you just get use to it and make the best out of it. Hopefully this helps.
Posted 2/21/2015 7:27 PM (GMT 0)
I can't speak for everyone with a j pouch obviously but I don't have these issues to any extent that it impacts my life. And my sister with a 23 year old j pouch doesn't either. Every now and then I get some butt burn. It's mildly annoying at its worst. A little cream on it and I'm good to go. Sometimes my bm's can be loud but do I care? Absolutley not. I will happily live my life with my sometimes quirky j pouch then with that God forsaken UC any day. No comparison.
Posted 2/22/2015 12:33 AM (GMT 0)
I'm only 3 months post takedown, but still have issues to the degree where I still regret ditching my end ileostomy. Still trying to give it enough time before I pursue a return to ostomy. I wouldn't dissuade anyone from surgery for UC, but am yet to be convinced that the pouch is the best road to go down.
Posted 2/22/2015 5:17 PM (GMT 0)
I've had mine removed now, but when I had a j-pouch, I found the butt burn subsided over the first 12 months or so, the first few months were awful though.
Posted 2/22/2015 11:11 PM (GMT 0)
shortjosh; May I enquire why you had your pouch removed?
Posted 3/10/2015 4:13 AM (GMT 0)
My first take down was awful. My first bowl movement I was in the bathroom "screaming like someone was murdering me", as my mom puts it. I had terrible burning/skin irritation YEARS afterwards. I was introduced to a paste called Ilex. It LITERALLY was a lifesaver. The manufacturer stopped making it for a couple of months, and I literally didn't go to school because the pain was unbearable and I couldn't find a creme to compare. But, everyone is different and my second take down was much smoother.
Posted 3/10/2015 6:37 PM (GMT 0)
Butt burn with a J pouch seems to be highly individual. For most it goes away in the adjustment period (first year or so) for some it never goes away. I had my pouch about 20 months and butt burn was an issue though if that had been my only issue I would still have the J pouch. There were structural issues with my pouch that caused incontinence, unlike most people I leaked during the day and not much at night. The butt burn made any leakage more difficult. I went to end ileo not because of butt burn but incontinence.

Any altering of the body in such a major way is going to have some issues. Though there are failures the vast majority of people are satisfied with the J, how satisfied is another question. It certainly is, for many, a huge improvement after dealing with UC. My only advice would be to not go into it thinking you can always return to the end ileo. You can do so but removing a J pouch is a tricky operation. Some people do OK with abandoning the pouch, I did not. Removal is a major surgery.
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