My surgeon told me not to take Imodium until two weeks after surgery. By the time two weeks rolled around, I didn't need to take it. He said you want to keep things free flowing right after surgery because things are swollen inside and your bowels are waking up so you don't want things to be sluggish. It makes sense but just like other things, all doctors have their way of doing things.

I was in the hospital for two weeks , but when I got out I started on 1 pkg of VSL#3DS Probiotics once a day, I started my imodium about a week after I got home (doc said I could take up to 8) and I also started citrucel tablets about the same time. I am starting to not need as much imodium on some days and others I take about 6 a day. I hope this helps. I know everyone's system is different.
ps someone sent me an article saying the sooner you start probiotics the better chance you have of not getting pouchitis.

You'll probably find responses here vary considerably!

Fibre I started shortly after the my takedown, as per my surgeon's recommendations, but Metamucil gave me increased gas so I eventually stopped it and switched to Benefibre. I took that for a while, but after time I decided it really made no difference either way so I no longer take a fibre supplement regularly.

Immodium I have never used on a regular basis. Like mgmt10, I was told not to use them at first (my surgeon said not in the first 4 weeks, partly because I had been prone to obstructions), though after that my surgeon told me I could take up to 6-8 per day. I find I don't really need it. That's not to say I never take imodium. I do use it when I need it (i.e. if I'm having very liquid bms), but mostly I use it prophylactically, such as before a long car ride, once when I was a bridesmaid, etc. At most I've probably taken 4 in a 24 hour period.

Probiotics I didn't start using until a year post takedown, when I got my first (and so far) and only bout of pouchitis, because up to that point, no one had ever recommended them to me. I now swear by them and would never skip a day. I wish I had known about them sooner.

As Spooky said, you'll get a whole gamut of responses. Some surgeons start their patients out on meds and supplements while they're still in the hospital and others don't want their patients taking anything - preferring to 'let' the pouch learn to function on its own. Personally, I think any surgeon who states that the pouch should learn to function on its own should be given a really good dose of flaming butt burn that lasts at least a week. I'll wager that surgeon would then change her/his tune.

If you think you need something then you should try one thing at a time and start with lower doses. If you're not getting the desired effect than up the dosage, change the medication or add fiber. If you launch right into all of them at the same time and you find that you're having problems you won't know which thing is causing it.

I don't think anyone has problems with probiotics other than gas. This can sometimes be alleviated by cutting back the dosage or just hanging in their for a while. Sometimes it take the gut a little time to get used to probiotics.

kathy

Yes--what kathy said about probiotics. They can often be frustrating at first because they can cause a lot of the symptoms you are trying to prevent. But there is usually an adjustment period and generally that is 2-4 weeks on the lower end of the scale. I haven't decided if the increase in intestinal issues is an effect of the probiotic itself, or rather the balance of the good and bad bacteria "fighting it out" and the flora in the gut stabilizing, like the storm before the calm. Either way, you have to stick with them for a few weeks to gain any sort of benefit. Gradually increasing to the desired dosage is good. You can try rotating when you take them (generally you'll have better luck if you take them with food), but depending on what kind you're taking, taking them before bed with a glass of water helps as well. Also, just because you don't have luck with one type of probiotic doesn't mean you can't try another. These days there are a multitude on the market so there is bound to be one you tolerate. That said, be wary of all these new foods springing up with claims of "PROBIOTICS!" With the exception of the Danactive drink and a few brands of yogurt, most of the time, these foods have such a low count of probiotics that you're not really getting any real benefit. That's not to say it isn't fine to eat them otherwise, but you shouldn't rely on them as a sole source.

My recollection is that I was started on metamucil fairly quickly after takedown - probably 1 week like you. My surgeon believed that I should be striving for bulk as much as possible because, as it was explained to me, the pouch expands over the course of time. I remember also being told to resist the urge to go to the bathroom AS LONG AS POSSIBLE, which I assume was both to condition the pouch and the anal sphincter muscles.

I am surprised by many posts like this thread, by posters who have questions on issues of fiber, meds and diet and often with no solid idea of what to do, as if they have been left to their own devices. My surgeon, now deceased but at the time considered one of the best colorectal surgeons in the USA, had very strong opinions on everything from how the stoma wound should be allowed to heal, to diet, to fiber, to use of anti-spasmodics. I was given a diet plan which I was asked to follow and did follow with military-like discipline and frankly, it was implemented with military-like oversight. This is how things should be for everyone, but I guess they are not, and we see these posts from people clearly left to their own devices or else not having the benefit of good communication from their providers.

I agree that doctors have different views on these things but my surgeon's recommendations were similar or the same as yours, and just because you had a partial obstruction does not mean he/she was wrong. Don't fall into playing the blame game when something goes wrong, it isn't necessarily someone else's fault when a complication arises. Indeed, I had obstructions in the weeks after takedown. 2 or 3, and none in the 20 years since. So I would not get too crazy over it. It is an expected complication and should not deter you from adhering to an overall regimen designed to make you better, although whether it should be adapted for a period of time is something to discuss with your doctor.

quote:

I am surprised by many posts like this thread, by posters who have questions on issues of fiber, meds and diet and often with no solid idea of what to do, as if they have been left to their own devices.

I'm not sure that is exactly the case. Having this surgery is pretty overwhelming for some people. Add to that complications and anesthesia and sometimes the memory doesn't aid us like it should. People come here to ask questions or get advice from people who may sometimes know more than their surgeons about certain things - because we live it daily.

There is nothing wrong with asking questions here about what is going on. For instance, you recently asked j-pouchers about your symptoms after smoking a cigar rather than asking your fellow cigar smokers. People have reasons for asking questions here.

kathy

I don't think Husky was saying people didn't get questions answered on here, he's just saying it seems people are let out after their surgeries without a GI/surgeon telling them anything other than medication schedules and take it slow.

I wasn't told anything in particular, just to learn what foods my pouch liked and what to stay away from. Currently I'm taking 2-3 imodium a day, and emptying my j-pouch only 2-3 times throughout the day, even without getting up for 8 hours of sleep. This down from 10+ painful times a day only 3 weeks ago. I've never been happier.

minnie:

I'd say it's safe to start taking probiotics now, the sooner the better I hear. Start off with a low dose, then work your way up to a full dose daily. Imodium you can start taking whenever you feel you want/need it. I use it mostly because I have way more water absorption with it, plus it slows down how often I need to empty my pouch. Take it slow and you shouldn't have a hard time getting back to 100% diet.

Thanks everyone, this is all very helpful. I do feel that my very well-respected team of surgeons is kind of leaving me to my own devices. And to be honest, I'd rather get some more specific instructions because I am nervous and scared and uncertain. And I do better with specifics

They did tell me I can try eating whatever I like, but to me it doesn't make sense that I can eat everything this close to surgery. Another example is with the fiber/lomotil. They told me I could take up to 8 lomotil a day. I wonder if it's too soon though. The last thing I want to do is negatively impact or upset my pouch, or wind up in the hospital for something that I could have prevented. Maybe I am being overly paranoid, but since I'm incontinent (currently), have butt soreness and hemorrhoids, got re-admitted for an obstruction, I want to be extra extra safe. Ok, so I am paranoid

So happy I can come here and learn from your experiences. Lots of trial and error, I'm hoping to reduce the error part

Hugs, J-Pouch friends!

Yeah when it comes to imodium/lomotil, I wouldn't take anymore than you need. Even if the doctor tells you your max, you may find that only a few a day are needed to slow down your pouch to your liking. I only tried lomotil once, and it did slow me down, but not anymore than imodium. Plus with imodium I see a noticeable increase in water absorption, unlike lomitil which only slows peristalsis. You may not need them, or eventually you may only take them if your having a bad day or something.

quote:

I don't think Husky was saying people didn't get questions answered on here, he's just saying it seems people are let out after their surgeries without a GI/surgeon telling them anything other than medication schedules and take it slow.

That's exactly what I was saying and as you surmised, the other poster was spouting her usual mumbo jumbo nonsense about my posts which are really beyond irritating at this point. Frankly most people who are intelligent enough and post with a clear head get exactly what I was trying to say without some silly, spinned misinterpretation being offered. I never said anyone did not get their questions answered from this board as opposed to their doctors and have no idea where that came from. I also never said people should not ask these questions here.

Just so everyone knows this is a poster with some absurd agenda, like Fred Bird. Please read my posts and draw your own conclusions and ignore her responses to my posts which have run the gamut from nonsense to beyond nonsense. Subsky, thank you for being able to do that and correct that complete nonsense post.

quote:

For instance, you recently asked j-pouchers about your symptoms after smoking a cigar rather than asking your fellow cigar smokers.

I hate to again have to respond to your nonsense but if you bothered to read the thread I started: (1) I mentioned I was with an important client to my firm and I am certainly not going to act like it was the 1st cigar I smoked in my life in his presence. DUH!!! If you worked in my business you would not have any clients, asking questions like this; (2) I believed the Cigar had interacted with my meds and particularly an anti-spasmodic I had taken so why would I have discussed that with my client who does not know I have a J Pouch and does not need to know, as opposed to fellow J Pouchers?

Please put me on IGNORE so I don't have to further respond to your continual barrage of nonsense in regards to my posts!!!!!!!!!!!!!!!!!!!

I'm an active user on a paintball forum for a few years now, this is the only other forum I have participated in. Obviously the other one is a hobbie, and I want to take part in this forum to help other's who are going what I have already gone through, and to learn new things myself as well.

The issues your having with some members not getting what you're saying or thinking you mean something else when you don't is definitely frustrating. Some people don't really "get" the tone of online forums, and some constantly take things the wrong way or don't get the tone it was meant. Basically I'm saying they might not even know they're doing it, but it'll still piss you off. I don't know what the case is with your situation specifically, but I know how you feel.

That's why I hate text messaging! Someone always thinks your "tone" is that you are mad at them or something else gets misunderstood in the text. It's just not like talking face to face.

Subsky, it's been going on for 5 years now. I have had dozens of posters here send me PMs and such thanking me for my posts and helping them, and yet there is one person who always has some negative spin on something I say. It is beyond frustrating. Regardless of tone or anything I went back and re-read my post several times and I simply do not get the response. I never said anything other than that people are not getting good guidance from their doctors and I see posts suggesting people feel like they have been left to their own devices. All I said was it surprised me because I got very clear military like structured guidance from my surgeon and his office.

Hater's gunna hate.

If it's this ongoing then you've probably gotten used to it. Like you said, people are thanking you for your advice and comments, that's enough to know you're doing a good job on here! Keep it up, and don't react to comments you find negative, and they might go away, hopefully :P

quote:

I don't think Husky was saying people didn't get questions answered on here, he's just saying it seems people are let out after their surgeries without a GI/surgeon telling them anything other than medication schedules and take it slow.

Maybe my response was unclear. I wasn't saying that Husky said people didn't or shouldn't get answers here. I was trying to let Minnie know that it's perfectly fine to ask questions even if she has gotten information from her medical team. Sometimes new members - especially those who have just had surgery and aren't having the desired effect - come for reassurance. I was trying to be reassuring. If you reread my post without attaching any negativity (because I certainly didn't mean to be negative) to it, I think you might see it in a different light. What Marianne said is so true - it's sometimes very difficult to understand what tone people have in a written post.

quote:

I never said anyone did not get their questions answered from this board as opposed to their doctors and have no idea where that came from.

I never said that either. I've reread my post and I'm not sure what I wrote that indicates that. Could you please point that out so that I can correct it? Thank you. I really have no agenda - absurd or otherwise. As has been pointed out repeatedly by longtime members here, Fredbird is not an agenda. He's a real live troll. And he's a very unbalanced mentally disturbed troll. That has been mentioned by numerous people other than myself.

quote:

I have had dozens of posters here send me PMs and such thanking me for my posts and helping them

I have been one of those people who have thanked you for the advice you give. I have also referred people to you when they're having difficulty with something that you've experienced. I've mentioned that before and you accused me of lying. I provided a link to posts yet you never acknowledged that nor apologized for harsh words.

quote:

Hater's gunna hate.

No hate going on here from this side. I apparently have said something that Husky is taking the wrong way. But I always try to be respectful with my responses. I always try not to resort to name-calling or labeling. That's not always the case when Husky responds to me.

To get back on track - Minnie has had and continues to have more complications than most. Again, I think it's very important to treat the newly pouched with as much kindness and care as we can. In the past there have been new pouchers who've gotten responses from other posters in which they haven't been as empathetic as they could have been (or so it seemed in the responses). This caused distress to some of the more fragile posters. Some even left because they felt that some of the people responding were upset with their questions or demeanor. This surgery can knock the wind out of even the strongest person. And some get to also 'have' a nice case of PTSD. Sometimes we don't know the whole back-story of a person's hospitalization or state of mind.

Minnie - hopefully all of this will not dissuade you from posting and asking questions. The people here are fantastic and there's always someone to lend a helping ear....

kathy

That's what I thought I was going on Kathy, people are taking things the wrong way. I'm sure everyone on this site tries their best to help others, without stepping on anyone's toes in the process. Misunderstandings happen, and now we gotta do our best to minimize them, if for anything not to confuse new members.

Everybody love everybody?!

Thank you Subsky.

kathy

For the sake of the rest of us, Kathy and DJBHusky, please stop this. I know I'm not the only one that feels this way, not by far. The back and forth adds nothing to the discussions and just brings down the whole group. As DJBHusky said, it's been going on for years. Enough already. Enough.

I am truly sorry if I did anything that offended you Breezie.

quote:

Enough already. Enough.

I don't respond to her posts unless she starts posting nonsense about mine. Go back and read her response to my post and ask yourself whether it was called for. Subsky saw it for exactly what it was, and called it immediately in the next post. Then KathySmith tells us that she was really posting for the benefit of Minnie. Oh really? Then why are you quoting my post and spinning it and offering a purported opinion which is contrarian to nothing that I actually wrote?

She could simply take the high road of ignoring my posts, but she cannot. It irritates you, it irritates me, and it irritates many others who have PM'd me to ask what is her problem. Her problem appears to be that she thinks my posts are somehow dangerous for people to read and accept, because they are not framed in a way that is acceptable TO HER. Yet nobody else on the board, not one person, has the same issues with my posts. She is a self styled moderator-censor of my posts and comments on them when no comment is called for or needed (as Subsky noted already by pointing out what was the obvious meaning of my post).

It will stop, when she learns to ignore my posts as I do hers.

quote:

It will stop, when she learns to ignore my posts as I do hers.

I think that's the only solution here, for you both to respect eachother's comments, but don't quote each other or add your own opinion to their statement. If you two do that then I don't think anyone will feel alienated, and we can all still got both of your opinions...just seperately!:P