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Hi all, I was chasingtime but I'm now pouchington and now 4 years later I'm still straining to empty anything but ensure. I'm at my wits end. I dilate daily and have tried every food and fiber known to man and still I cannot empty. I even had physical therapy for paradoxical sphincter contractions. Anymore ideas guys?
Pouchington, I'm sorry you're still struggling to empty after all this time. I have a few questions that might help clarify what's going on:
1) What's the consistency of the stool you're able to produce? Is it consistent? Does the consistency affect your ability to empty?
2) Are you well hydrated? How many times daily do you pee, and is it light or dark?
3) What fiber regimens have you tried? What kinds, what doses, what frequency, how much water, etc. Has the fiber had any effect?
4) What happens if you ignore the urges? Have you tried delaying a toilet visit for an hour or two?
5) Daily seems surprisingly frequent for dilations. Do you know the status of your stricture, and how long it actually takes to tighten up again?
6) Are you ever able to empty completely? If so, what seems to be different then?
If it's watery it empties easier, if it gets like thin oatmeal I can't empty it, I drink about 80 to 100 ounces of fluid a day and pee every time I empty (incomplete of course) which can be every 2 hours and it's light color, I've tried Citrucel Benefiber Metamucil wafers capsules and powder among others from once a day to every meal in varying quantities with approx 16 to 24 ounces of water at a time, I've tried my best to hold it as long as possible and it doesn't help, I was told to dilate daily and if I don't I bleed, I have at times emptied well squatting and arching back in the shower but a squatty potty doesn't work, I have to arch my back very extreme to even empty partially on the toilet, my belief is that my puborectalis simply will not relax which has made my pouch a living hell.
This sounds pretty miserable. I'm slightly suspicious of the combination of persistent stricture plus dysfunctional sphincter. They both can occur, of course, but it's likely that just one of them is the main source of your trouble. Was the sphincter PT completely worthless? I wonder if some creatively applied biofeedback might be worth a try, enabling you to *see* the state of your sphincter. The trick would be finding a biofeedback practitioner who isn't put off by the location of the issue.
You have some options to make your life better, assuming the biofeedback idea is a non-starter. You could start irrigating your pouch to empty it, which some folks find to be a life-saver. Heck, the frequent catheter insertions might even persuade your sphincter to stop fighting with you. I don't like it as a first choice, but you've already tried lots of other choices. Another option would be surgery for a K-pouch or BCIR, which would bypass your sphincter but give you control (as a J-pouch should) over when and where you poop.
Good luck!
Had my reversal last Thursday (7 days ago), i just came to this forum to ask a similar question to Chasing Time and Gleam. I dont get many false alarms, in fact at present im only going 3 or 4 times a day, but the gas pains and spasms are intense, especially in the evening, and they dont seem to be easing at all. Like the other guys this is impacting on my eating, i eat small to avoid additional pain. (that probably also explains the reduced bathroom visits)
I wonder if thats just interpretation? I see gas pains as a reason to lie still, and maybe on my left side, but others dash to the loo asap? I literally wait until i need to go before visiting the bathroom, rather than visiting with a view of easing the pain (which leads to lots of false alarms)
I know its early days, after colon removal and J-Pouch creation it took 3 weeks before the pain started to ease, but i had thought this operation was easier to recover from.
Am i allowed to take windeze as beano at this stage? I asked the doc but he was quite obscure about it, saying he would let it heal first before taking buscopan (i didnt ask about buscopan!!) I clarifed again but he was still keen to talk about buscopan.....no idea....
Chasing Time and Gleam, are you guys on any painkillers? I got discharged without any at all, at times i sure feel it would be helpful to have something...
Scott, I had biofeedback which showed normal resting pressure so I just don't understand. I had very little relief from pt. Not enough to notice or continue after a dozen times. Bobish, I'm 4 years out and have no need for pain killers but incomplete emptying is enough to drive you mad and keep you homebound. It's a very difficult existence and impossible to gain or even maintain weight. I'm 5'6" and 115 pounds and losing. My surgeries (likely extensive anesthesia) caused ongoing substantial physiological problems like panic anxiety and severe depression so further surgery isn't an option. I just now went to empty a very obvious full pouch after 6 hours and emptied a tiny dribble. It's infuriating...
POUCHINGTON sorry to hear of your problems, to be honest you have far more experience than me, so i wasnt really replying to you. Everything i can suggest im sure you have tried.
The 2 things that have helped me durnig my time with UC and now this is
1) Warm water, bathe the backend in a warm sitz bath to prompt the bowels to open. I have good results with this
2) stretching, ie standing with you back agaisnt a wall like military straight, then dropping on your knees, face on the floor and your bum in the air, then lying on your left side, that should shake something lose
Im very new to this, but could it be that inflammation is causing your problems? it seems to be the answer to everything on here, but pouchitis?
I say this with total respect. im sure you know more than me and im not offering you anything new here at all, but wanted to reply. i remember with uc hard annoying it was to always feel the need to go
I've had chronic mild pouchitis from day one and nothing helps. Antibiotics work while on them then returns instantly and rotating isn't possible because I'm very sensitive to the the commonly used antibiotics. Your suggestions are very welcome my friend.
