im 19 days post takedown and im so sick of feeling the urge to go only to sit and strain to release a little stool then go back in a short time to repeat the same. can anyone please give me tips on what to do or eat to empty without straining. im only eating crackers and toast for fear of worse symptoms. this "recovery" has got me scared and crying a lot...
Replies sorted oldest to newest
It's scary at first because I think we all feel that we are going to be "fixed" and for me the surgery has allowed me to have as normal of a life as possible, but it does take getting used to. I actually had pouchitis for the first six months after take down. I didn't know it for three of those months because I didn't know what I was suppose to feel like.
Everyone is different so who knows what will work for you. It will take some time to figure it out, but the one thing that I know I HAVE to take several times daily is psyllium fiber. I take it loose, mixed witl water and if I don't take it, I don't go. Once I started going, I stopped getting pouchitis and now I only have short bursts of that "having to go, but can't" feeling. This is all the advice I have in this area, other than the typical foods such as prunes, etc. I know most people have the opposite problem. My doctor told me that I can't be constipated without a colon. Whatever. Call it what you want. I couldn't empty my pouch without taking a lot of fiber. Good Luck. Hang in there. It is really early for you. It will get easier, but it takes time.
Everyone is different so who knows what will work for you. It will take some time to figure it out, but the one thing that I know I HAVE to take several times daily is psyllium fiber. I take it loose, mixed witl water and if I don't take it, I don't go. Once I started going, I stopped getting pouchitis and now I only have short bursts of that "having to go, but can't" feeling. This is all the advice I have in this area, other than the typical foods such as prunes, etc. I know most people have the opposite problem. My doctor told me that I can't be constipated without a colon. Whatever. Call it what you want. I couldn't empty my pouch without taking a lot of fiber. Good Luck. Hang in there. It is really early for you. It will get easier, but it takes time.
Have you tried any fiber supplements at all?
I'm having the same problem Chasingtime. Once I get that little bit out, I stand for about ten seconds and then sit again and I'm able to go again. But like you I have never felt like I was completely empty except for once. I had a formed BM which would be the first in years! I would like to say it was because I ate two Metamucil wafers that day but I haven't had that experience since.
Maybe you should try introducing oatmeal, bananas, applesauce, etc (the brats diet) to see how you adjust?
I just got done eating honey roasted chicken breast, green beans, and mashed potatoes. I think it's time to move passed your fears. It certainly can't be worse than it is right now. Well except for the molten hot lava ant bite butt burn! LOL
I wouldn't mind having a butt buddy to share experiences with if you are interested since we are both very close in takedown dates.
Maybe you should try introducing oatmeal, bananas, applesauce, etc (the brats diet) to see how you adjust?
I just got done eating honey roasted chicken breast, green beans, and mashed potatoes. I think it's time to move passed your fears. It certainly can't be worse than it is right now. Well except for the molten hot lava ant bite butt burn! LOL
I wouldn't mind having a butt buddy to share experiences with if you are interested since we are both very close in takedown dates.
my surgeon called me today and suggested i start citrucel in whatever form works for me so i just started the caplets. im stopping the imodium while im feeling constipated to see what happens. i did have some single grain baby food oatmeal today so we'll see. i was living on toast and crackers so thats probably why im stopped up but i drink tons of water. rice beat my ass yesterday. it was like passing cement. gleam, why dont you do more Metamucil wafers? anyone else notice that fiber gives you gas then fire ass?
I tried the capsules of fiber as well as the wafers. I think the loose form of fiber works well because you are forced to drink a lot of water with it. It saved me from constipation, pouchitis, and butt burn. Give it a try if the forms you are taking fiber in now don't help. I also could never be on imodium or anything like it even from day one. I just kept taking the fiber every few hours until it started working and now I have semi-formed stools.
what about oatmeal instead of fiber supplements?
Have you tried water enemas to help empty out? I was just like you after my surgery and have had to resort to the use of medena catheters to empty my pouch. It takes a little bit to get used to, but becomes second nature after a while. A catheter may not sound like much fun, but it is much better than the misery you are going thru now.
Oatmeal and an apple a day do the trick for me. However, after a year with a temp ileostomy I seemed to have a bashful sphincter. It just wouldn't relax enough to let the stool out. So, I discovered that if I cough hard a few times while sitting on the toilet, the stool came out easily. I'd keep coughing until I felt empty. Also, while standing in the shower, I'd aim the stream of warm water from the hand held water wand right up the "you know where" and out flowed stool. Easy to clean up but wouldn't be much use when out and about. Some ten years later, I still use the coughing strategy.
i think im expecting too much just 20 days out but the nights bring me to my knees and tears. i feel like such crap that i fear adding food for fear it will hurt worse. oatmeal killed me last night. jeez...
I'm not having troubles releasing the gates any longer. I had a really rough strain 3 days ago. It must have dilated my pouch because there was blood for a whole day. But things are shaping up here nicely. I will say farting is out of the question without being in the bathroom, I am still having spasms which are gas induced. Usually I can control it, but I have had two small mishaps in the last couple of days. Nothing like having UC though.
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.