The manometry will give you a definitive answer about sphincter strength. In the meantime, have you tried insoluble (edit: should be *soluble*) fiber, such as psyllium? In the right dose and frequency that can do wonders for watery stool.

Potatoes, pasta, and white bread pretty quickly turn to sugar in the gut. I’m not at all sure that’s your problem, but it’s best to know what you’re really eating. If you are avoiding sugar to try to influence your gut then you’d most likely have to avoid starches as well to achieve the intended change.

It sounds like your sense of urgency is experienced as a burning sensation, rather than fullness. Have I got that right? Are you really having accidents if you try to hold it in?

Hi Scott,

I may try insoluble fibre, thanks for the suggestion.

I noticed sugar made me burn a lot but I don't get that much burning now I have cut it out.

I don't get a sense of fulness but it is more a case of feeling the stool pushing through, or a burning sensation. I have occasional accidents if it is very watery.

Thanks for your comment.

If the bowel movements and incontinence are coming right after eating, you may have a motility issue.  Loperamide will not help for motility issues- it's an anti-diarrheal, not an anti-spasmodic.  You need to take an anti-spasmodic 45 minutes before meals and at bedtime if in fact that is the issue.  I had a lot of motility issues right after takedown.  It can be out of whack for a while after any bowel surgery.

Nick, I meant to suggest soluble fiber (like psyllium) rather than insoluble fiber (like celery). I’ve edited my post above. My apologies. I hope it helps. I’ve been using it every day since my surgery 17 years ago.

CTBarrister posted:

If the bowel movements and incontinence are coming right after eating, you may have a motility issue.  Loperamide will not help for motility issues- it's an anti-diarrheal, not an anti-spasmodic.  You need to take an anti-spasmodic 45 minutes before meals and at bedtime if in fact that is the issue.  I had a lot of motility issues right after takedown.  It can be out of whack for a while after any bowel surgery.

Thanks, CTB,

the bowel movements are not coming right after eating, although maybe a little.

Not sure what a motility issue is. Something to do with the how the bowel moves the food through?

Scott F posted:

Nick, I meant to suggest soluble fiber (like psyllium) rather than insoluble fiber (like celery). I’ve edited my post above. My apologies. I hope it helps. I’ve been using it every day since my surgery 17 years ago.

Thanks Scott. I will check with my nurse. Do you take it with meals?

It is interesting that I took a course of antibiotics, Flucloxacillin, a couple of months ago for a week and my bms reduced to around 8 a day but went up again when it finished. But then the Cipro antibiotic didn't do anything for me.

I am taking a pro-biotic capsule a day to give the good bacteria an upper hand.

Also a peppermint oil capsule a day for wind and 2 x 30 mg of Omeprazole. 

I take psyllium (Metamucil/Konsyl) before breakfast and dinner. I just take the dose recommended on the package.

Thanks, Scott. It definitely sounds as though it is worth trying. I am not sure that thickening my stool up would solve the problem as sometimes it pushes through when there isn't much there. Is this related to motility?

I am interested in finding out what a motility issue is. I sometimes get stool pushing through when there is nothing much to follow it. It is as if it is being pushed through by peristalsis, i.e. the rhythmic contraction of the ileum that moves food through. Is this related to motility?

Another point, I lost 10 kilos in weight since my surgery and have not started to put it back on yet. Is this something to do with recovery? I read elsewhere that someone tried to gain weight and then after 9 months out of nowhere she started to put it on.

Nick-

If your sphincter is providing enough back pressure, there are a couple of things that can push out stool involuntarily. CT mentioned a spasmodic pouch (“motility issue”), and if your doctor thinks that might be the cause, an antispasmodic (like Bentyl or Levin) could be worth trying. The most common cause of this is pouchitis, but the fact that it looks non-inflamed and Cipro didn’t help suggest that’s not it. If you run out of options, though, a course of Flagyl might be worth a try, just in case it’s pouchitis that doesn’t look like much and doesn’t respond to Cipro.

Bulking up the stool with soluble fiber makes it much easier for the sphincter to hold it back. I suggest you try psyllium first, and if that gives you gas or doesn’t work there are other options (Benefiber, Citrucel, etc.).

Good luck!

Thanks, Scott, for the information. It looks useful. I just read on another thread that Donnatal is another antispasmodic but it doesn't make you as lightheaded as Bentyl and Levin. 

I will forward the information to my nurse.

Hi all,

I am going to try metronidazole (Flagyl) for possible pouchitis.

I notice there is some kind of smallish nodule in my back passage, about an inch in, and wondered if this could cause a bad seal and make me incontinent?

Comments appreciated.

I don’t think the nodule is likely to be contributing to the problem. Have you tried psyllium? Good luck with the Flagyl, Nick!

Thanks Scott - you said you don't think the nodule is making me incontinent - that is actually a relief as what could I have done about it? At least now I can focus on the exercises to strengthen the muscles and hope in some results from the Flagyl.

My nurse didn't encourage me about the psyllium. She said:

"As far as fibre is concerned- you can try it – but to be honest, I think hearing how your pouch is and how it is quite sensitive to different foods, the psyllium husk may irritate your bowel – I have had other people try it and it made them quite explosive and loose..."

So I am avoiding it for now.

Thanks again.

Nick, I think the nurse is giving you poor advice. I don’t know if the fiber will help you, but the experiment is easy, quick, and essentially risk-free. You’ll know the answer in a day or three. Some folks get benefit and some folks don’t.

It’t best not to change multiple things at once, though, so if you’re starting the Flagyl don’t add psyllium, too.

I second Scott’s suggestion of Metamucil. Seriously it can work wonders. post surgery it took me from 14 bm’s Per day to 6 formed ones with no urgency or leakage. Think of it like jello powder-it just soaks up and forms all the liquid to make it easier to contain and feel when it needs to pass, I had lots of the issues you are describing initially and Metamucil and eliminating dairy helped a ton. Have you met with a dietician? I would take their advice/suggestions over a nurse. Nothing against nurses who are wonderful human beings and professionals of course, it’s just not their area of expertise. 

Scott F posted:

I don’t think the nodule is likely to be contributing to the problem. Have you tried psyllium? Good luck with the Flagyl, Nick!

I wonder if my sphincter muscles were cut too short or something. Not sure how long the sphincter should be?

Thanks for your comments.

Scott F posted:

Nick, I think the nurse is giving you poor advice. I don’t know if the fiber will help you, but the experiment is easy, quick, and essentially risk-free. You’ll know the answer in a day or three. Some folks get benefit and some folks don’t.

It’t best not to change multiple things at once, though, so if you’re starting the Flagyl don’t add psyllium, too.

I see what you mean, Scott.

I will discuss it with her again when the Flagyl has finished.

Thanks.

duck11 posted:

I second Scott’s suggestion of Metamucil. Seriously it can work wonders. post surgery it took me from 14 bm’s Per day to 6 formed ones with no urgency or leakage. Think of it like jello powder-it just soaks up and forms all the liquid to make it easier to contain and feel when it needs to pass, I had lots of the issues you are describing initially and Metamucil and eliminating dairy helped a ton. Have you met with a dietician? I would take their advice/suggestions over a nurse. Nothing against nurses who are wonderful human beings and professionals of course, it’s just not their area of expertise. 

wow, that's an amazing improvement, from 14 bms to 6. I haven't met with a dietician, but it is something I can look into.

Thanks for your comment!

Nick8 posted:

Scott F posted:

I don’t think the nodule is likely to be contributing to the problem. Have you tried psyllium? Good luck with the Flagyl, Nick!

I wonder if my sphincter muscles were cut too short or something. Not sure how long the sphincter should be?

Thanks for your comments.

The anal sphincter (a circular muscle right near the anal opening) isn’t cut at all during normal J-pouch surgery, though it can get overstretched. Cutting the sphincter leads to terrible problems.

Thanks Scott for that.

That sets my mind at rest. I was just thinking that the 'nodule' was the point at which the anal canal and sphincter which surrounds it was cut and it seemed a bit short, i.e. not much more than an inch.

Now I can continue with the Kegel exercises and hope that the sphincter muscles will eventually be strong enough to hold it all in, whether the stool is well formed or runny. I read somewhere that diarrhoea does not have to mean incontinence. 

It’s true that a well functioning pouch and sphincter can hold watery stool, though not as easily as firmer stuff. Watery stool generally is associated with greater frequency, though. The solid matter still has to be eliminated, and the lost water has to be replaced.

Your pouch is still relatively young - it needs stretching/acclimating to reach its optimal performance. Delaying bathroom trips was an effective strategy for me, but it can be challenging and occasionally messy.

Are you having leakage of small amounts, or full-blown unintended bowel movements? The word “incontinence” suggests the latter to me.

Hi Scott,

you say my bowel needs stretching/acclimating. Thanks for your suggestion about delaying bathroom trips to stretch it. I am trying to do that but whenever I feel it seeping through, I feel I have to go and clean up. There isn't much to come out usually at those times. Maybe I should just ignore the irritation and continue holding on (?) or just clean up and not have another bm (?) Regarding acclimating, I once read that the bowel's 'architecture' changes eventually and begins absorbing more fluid.

How is incontinence defined? No, I am just having leakage of small amounts. It seeps through and irritates. I don't have large amounts coming through now by accident. I tend to be able hold it in.

Finally, I would appreciate your comment on this: does the fact that I had a bag for 5 years mean that my sphincter muscles are still not strong enough to hold in the stool?

Thanks again.

Nick, I’m not suggesting that you leave leakage in place - of course you have to clean up. Since it sounds like it’s happening when your pouch isn’t full, it might be worth not trying to empty your pouch at those times, and just clean up the leakage. Too-frequent attempts to empty your pouch (when it isn’t full) probably do more harm than good. I do suggest that you call what you’ve described “leakage” rather than “incontinence.” 

There are plenty of folks here who’ve been successful after long periods with ostomies. Nevertheless, your sphincter might need much more time and attention than usual to regain its full function. How long can you hold a Kegel? How many are you doing per day?

Have you noticed any benefit from the Flagyl yet?

Scott,

thanks for your reply and advice. Leakage sounds less serious than incontinence.

I can hold a Kegel for over 100 seconds. I used to hold them for that amount but now do 10 sets of 10 and after that single sets of 20, aiming to do all at maximum squeeze. Not sure what is the best way to do them or how long to hold them (???)

I have been taking the Flagyl since Monday. My bowel does seem quite calm at the moment.

I am still a bit worried about the length of my sphincter. It seems to be only an inch (2.5 cms.) or even less long. Do you know how long it should be?

You may wish to try tucking some cotton packing back there to absorb any leakage and keep it from spreading.  Plus of course apply barrier cream every time after you clean & dry well.  I find drying well to be essential - you can try a cool blow dryer or just blot well with tissue with no wiping.  

Nick, I’m not sure why you are measuring your sphincter length, or why an inch concerns you. I’m not aware of any too-short-sphincter issues that arise. The pouch doesn’t attach to the sphincter, it generally attaches to a rectal cuff, and the length of that cuff (not readily measurable without tools) can sometimes be an issue. I’m glad the Flagyl may be helping - has it stopped or reduced the leakage?

Scott, thanks for your comment. My sphincter just  seems a bit short but if it hasn't been cut, as you say, it is the one I have always had so should be OK.

I had a good day between midnight and midnight yesterday, going 8 times, but then from midnight to getting up I went quite a few times as it was burning and there was plenty there. It was like the stool that wasn't passed in the day remained in my bowel and was passed in the night. I can't understand why my bowel speeded up in the night though.

Maybe I need to space the tablets out more. I took one at 6am yesterday and the other just after midday, only 6 hours apart. I can't understand though why having them too close together would have such an effect as all they are doing is killing bad bacteria which wouldn't grow back in the space of a few hours (when there is a gap in taking the tablets), surely? Or would it?

There wasn't that much leaking in the day as not much was pushing out, but at night, sometimes the stool leaked out sometimes not. It burned even when there was no leaking.

Do you think I am doing enough Kegel exercises?

girlunky posted:

You may wish to try tucking some cotton packing back there to absorb any leakage and keep it from spreading.  Plus of course apply barrier cream every time after you clean & dry well.  I find drying well to be essential - you can try a cool blow dryer or just blot well with tissue with no wiping.  

thanks girlunky for the advice. I tend to just use tissues to absorb leaking. Maybe cotton packing would absorb it more and cause less burning (?)

I do use barrier cream (Sudocrem) and try and keep the area dry. I read that this is important. Thanks for the reminder.

Nick, can you tell if the burning is internal (within the anal canal) or external?

I take a Lomotil or two at bedtime to help slow things down during the night. I find it works a bit better for me than loperamide (and I never tried codeine or other serious opiates for this purpose).

Something is irritating your innards, and it’s not the spacing of your antibiotic doses. You might just be in a cycle where frequent poops irritate things, causing leakage and frequent poops. Breaking that cycle can be tricky. It’s possible that this is cuffitis rather than pouchitis, and that would be treated with some form of mesalamine rather than antibiotics. It’s also possible you’re still adjusting, since it’s only been four months, but it sounds like a difficult adjustment. I still think you need a trial of psyllium soon (I’ve used it every day since my surgery, and it really helps in my case). You’re probably doing enough kegels. Maybe you can ask for that pouchoscopy sooner rather than later?

Scott, I think the burning occurs inside the anal canal at times but also externally. On a night I can feel it burning inside sometimes as I said but without any leakage. Often I think it is to do with the food I have eaten. It used to be worse. I am not feeling burning all the time. I hardly feel it at all during the day.

Lomotil is something for me to look into, thanks.

I can ask my nurse about cuffitis.

I said to my nurse that I thought I would have had a date for the scope and the manometry tests by now, but she said that the waiting lists are very long and she has lots of people waiting.

I am tired of it all.

I too have minor leakage and I am 3 years out from my redo with Dr Remzi. I too had the manometry test and my sphincter muscles are normal. My anus is always irritated and I tuck a pad up there just in case I leak bad.  I see Dr Shen and scopes show no pouchitis or cuffitis. He told me when you get a redo the pouch is sewn very close to the anus and that irritation is normal unfortunately. And Remzi told me before the redo some people will experience leakage after.. its not horrible but its a nuisance.. I have tried Metamucil, and the wafers do help to form my stool, but I find I still leak a bit somehow.

Thanks Pouchomarx for your comment.

Sorry you are still experiencing leakage after 3 years. Do you also have loose stool? This makes it worse. Night times for me are bad and I don't sleep enough because of it. If things don't improve, I would rather go back to the bag.

Pouchomarx posted:

I too have minor leakage and I am 3 years out from my redo with Dr Remzi. I too had the manometry test and my sphincter muscles are normal. My anus is always irritated and I tuck a pad up there just in case I leak bad.  I see Dr Shen and scopes show no pouchitis or cuffitis. He told me when you get a redo the pouch is sewn very close to the anus and that irritation is normal unfortunately. And Remzi told me before the redo some people will experience leakage after.. its not horrible but its a nuisance.. I have tried Metamucil, and the wafers do help to form my stool, but I find I still leak a bit somehow.

Hi again Pouchomarx,

I was wondering if your leaking was worse in the first few months and whether it improved and continues to do so. Also, how bad is your leaking now? How is it at night?

Thanks again.

I have finished the metronidazole (Flagyl) and there wasn't much of an improvement in the end. I am now trying an antispasmodic drug called Mebeverine as from a couple of days ago. My bowel is quite calm with this although last night the stool was pushing through because my bowel was quite full. I am still not able to hold the stool in on a night until my bowel is empty, which is from around 2am.

My bowel is calmer now because it is in the morning when it isn't full. I feel my muscles may be getting a little stronger as I can hold the stool in a bit on an afternoon although there is still a bit of leaking.

I aim to try psyllium husk or an alternative like Fybogel soon. Depends what's available. Is Fybogel a good substitute for psyllium husk?

Hi, Nick. Your pouch is still very young. After my takedown, it was eight months before things started to settled down. I experienced leakage, frequency, urgency, burning and raw skin. I feared my whole life would be this way. But it wasn't. I hope the same for you. My pouch needed time to mature and to learn how to live and act like a colon. I am able to eat whatever I want, but I limit carbs, no sugar or nuts or seeds. What do you eat in an average day?  What time is your last meal of the day?  When I had issues I stopped eating around 6pm.

Hi Winterberry, thanks for your reply. I am so glad your pouch settled down and I hope mine does too.

On an average day, I eat breakfast which consists of: 5 slices of white bread with peanut butter and marmite, and a banana and about half a cup of water; I occasionally have cereal with soya milk and a little Candarel sweetener. For lunch I have: potatoes or pasta, tinned fish, a little veg or salad, 2 slices of white bread, a banana, sometimes a pro-biotic yoghurt, half a cup of water. I also have a pro-biotic capsule and a multivitamin with iron tablet each day. I avoid sugar and milk and cheese.

My last meal is actually lunch at 12.30pm. I sometimes have a slice of white bread and peanut butter at around 5pm. I take 5 loperamide a day which may be why the food takes so long to exit my bowel.

Hi,

I had a pouch scan yesterday and there is mild inflammation on the anastomotic line, or rectal cuff. My nurse says the inflammation on the join explains why stool has been pushed through even when the pouch is not full.

I asked the Endoscopy nurse to check the sphincter tone and she said it was looser than most peoples. I was wondering if this was due to over-exercising the sphincter muscles by doing too many Kegels (?) I have been squeezing as hard as I can and have often felt fatigue in my muscles (I have read that this can happen). I say this because when they were tested in June the consultant said the tone was good whereas now they are 'looser' than average which suggests that they are weaker now. I am giving them a rest as a result and just squeezing when I need to. I hope to return to a more gentle routine and build up from there.

Nick, will your cuff inflammation be treated?