New here....

Carrie:

Yes, if you're having constant explosive & painful BMs, that does not sound right at all! I responded to your other post about noise assuming you were a new poucher, as those noises tend to slow down after a while. Given the length of time you've had your pouch, I'm thinking something else is going on here.

The first thing I would try is a diet change. Maybe go to a low residue diet for a few weeks, then try adding in other things slowly to see if that makes a difference in your output. Is your output consistently watery? A change in diet can help that, but so can immodium and/or metamucil. Drinking a decent amount is also a necessity.

The pain; do you have fissures or hemorrhoids? Where is the pain specifically and what kind of pain is it? I mean sharp, shooting, cramping, etc. Does it linger, or only last while having a BM?

My concern with what you're experiencing is not the embarrassment factor; it's the pain and quality of life. You need to be able to go to friends' houses for meals and go out and have fun!

I'm sure others will have ideas and advice as well. I hope something helps soon.

Best,
Gin

Welcome! I find too many carbohydrates make me very gassy leading to the explosive bm's. But I never have any pain with them. So playing with your diet may help. Not sure what kind of pain you are experiencing. Everyone's different so you may be eating something on a regular basis that isn't agreeing with your j pouch. My sister has a j pouch too and we always kid each other about the noisy bm's. Unfortunately I think that one comes with the territory. I know what you mean about being at a friends house....that can be really awkward! All my good friends know I what I had done so I try not to let it bother me. It all beats UC hands down any day!

It's been like this since I can remember, so since the surgery. 15 years...

I have to push on my stomach to start to go to the bathroom and get it all out, it moves it around. Does anyone else have to do this??

I'm going to try a diet change, I'm not sure if that's what it is, but we'll see.

Yes, every time I go it's explosive and 80% of the time painful. Pain is at the anal opening - feels like a burning/acidic pain most of the time. I have to sit on a heat pack afterwards to help. I don't really get much cramping though.

Do you have "normal" bathroom visits and stools?? Or is it always diarrhea? Mine is always diarrhea and I wonder if that's normal.

I do have a fissure, found about 2 years ago. The only recommendation was to use a cream when it bothers me. I also got diag with Crohns 2 years ago. Doc thinks I've had it all along and no UC as orig dx when I was 8....

That pain you're speaking of has got to be the fissure. I've never had one so I'm not sure how stubborn they are to get rid of.

My stools are generally loose...sometimes semi-formed...sometimes liquidy. It depends on the day it seems. I don't like to say its diarrhea because I think of diarrhea as being sick and I'm not sick.

Being that you have a Crohn's dx now you may need to be on some sort of medication for it if you are not already. That may help with many of your issues.

I suggest considering these issues separately, which may help thinking through what to do about them.

1) Painful poops are probably all about the fissure. Fissures can be persistent and tough to manage, but that's the key to the pain. There have been many posts here about treating fissures. The state of the art seems to be nifedipine cream, sitz baths, and perhaps a bidet. It sounds like it bothers you every day, so maybe it's worth treating every day until it clears up.

2) Loose stools are subjective. Some folks do best with something akin to pudding in texture, others prefer firmer, and no one likes watery. You can use soluble fiber (e.g. Metamucil) and bowel slowers (e.g. Lomotil or Imodium) to find a consistency that works for you. Just be gentle with these changes (preferably one at a time), and don't try to make bricks, because you really won't like them.

3) Gassiness. It's hard to know how much gas you have. Most of us are noisy in the bathroom, and have more gas on the toilet than pre-surgery. The normal part of this is that most of us can't fart while clothed without risking a mess, so we hold it in until we're on the toilet. You may be able to reduce gas production with some combination of supplements and diet. Dietary possibilities include no soda, eating slowly to avoid swallowing air, avoiding gassy foods like beans and broccoli, and reduced, modified, or eliminated carbohydrates (e.g. low FODMAP). Supplements that folks report some success with include Beano, Gas-X, and digestive enzymes. Everybody has some gas, though.

If your gas is extreme it may be a sign of SIBO (small intestinal bacterial overgrowth). That's typically managed with antibiotics such as doxycycline for a few months.

Good luck!

Thanks all for your advice! I'm going to try a couple of these things, not all at once, and see how it goes. My doc just recommended Imodium actually and it's helping. Just want to make sure I don't go the other way and get constipated.

Marianne, I am on Humira and Imuran for the Crohns.

Thanks! Carrie

You probably won't have to worry about constipation! Many of us take Immodium every day with no worries. Metamucil, as has been mentioned, also does wonders for thickening things up.

Scott gave the best advice for treating fissures; you can also use the search function on this site to find what other people have said. My favourite ointment is "nupercainal" which helps with the pain immensely,and then I rely on sitz baths and a good barrier cream to help the area heal up.

Best,
Gin

Honestly, you sound like you have adapted to a pretty miserable quality of life. If you have the means, have a 2nd opinion from a doc that doesn't tell you that this is the norm and everything looks fine.

In my experience docs say everything looks fine when they can't offer any solutions.

Don't settle,

Dan

Yeah, I have been thinking for awhile that my quality of life should/could be way better than it is. Thanks! I'm going to take charge of this thing finally, better late than never I guess, right?!

Thanks GinLyn - Great advice!!

Sounds somewhat like me...somewhat. Had take down April 2013 and two procedures (one in may 2013 and another in June 2013) to relieve stricture (2nd surgery worked). Up and down quality of life since. Been on many different antibiotics since and have been on Opium tincture (three drops 3x/day) for months due to urgency and # of BM's per day. Flagyl and Cipro is off limits now so I've been on Doxy for months but doesn't do much. Also been taking 2 Pepto tablets 2x/day and 3 Immodium 2x/day plus TB Konsyl fiber powder 2x/day. Still have accidents every night and have to go 3-5 times a night and evenings/mornings aren't the best either. Doc told me today he's exhausted all options that he has at his disposal and told me it's time to re-visit Mayo to see what they can do differently. Gotta tell you, that was a kick in the groin.

Not sure what normal is for me but I know I'm not there yet..almost a year out.

I would certainly try eliminating carbohydrates for a while if none of the medical basics were working adequately. I haven't personally tackled it, but that's because I haven't needed to. Some folks have reported significant improvement from this dietary change. If I were going to tackle it, I'd do so "elimination style." First I'd eliminate all the carbs for a while - at least a few weeks. If that made things better, I'd add back the carbs permitted on the low FODMAP diet (e.g. rice), and see how well I tolerated those. If that worked well, I might gently add back other carbs in moderation, and see what level of carb intake I could tolerate well. The effects would likely be delayed from any change in diet, so a good long observation period is best between each change.

I'd recommend you go buy something from the sponsors on this page. I've personally tried and keep calmoseptine in my bathroom.

I'm not sure if it will work to coat fissures, maybe someone can speak to that. I'm thinking it will be like chapstick in the winter, but for your butt.

I don't get having diarrhea *and* having to press on your stomach to get things going. If I have a liquid stool, I don't have to help things along at all. Even when I have too firm stool, I don't press on my stomach. That sounds like something you should talk to your doctor about. Could you have a hernia you're holding in?

To firm things up fast, try immodium.
To have things firm up over a few hours, try some marsh-mellows. It's a great excuse to have marsh-mellows. lol

And most importantly, almost every person on here gives great advice and cares, so ask away and let us know if things get better or worse!

I agree that your diet may be the culprit. I found that if I eat brownies, cake, etc I will have the worst acidy diarrhea ever!!! Chocolate candy doesn't seem to do it....it appears to possibly be the combination of flour and sugar. Also, try and stay away from spicey foods for now (like mexican). Other foods seem to cause BAD ODORS (like simmered onions, cabbage, etc). I take 2 Lomotil every morning. If I ever forget to take them, I know it by 2:00 in the afternoon. So if you are not on any medicine, you definitely need to start on immodium, lomotil, or something like that. My doctor said I would have to take it the rest of my life OR live with explosive diarrhea.