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Does lots of meds with ileostomy = higher frequency with j pouch?

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Posted 10/14/2014 4:25 PM (GMT 0)
posted October 14, 2014 12:22 PM

Hi all,

Had my date with my surgeon yesterday and found out my pouchogram looked great. Now, it's decision time. My surgeon told me that the fact that I take Metamucil twice a day and Immodium 4-6x per day to get things to a pudding consistency means that I will likely have increased frequency after surgery - 8 or more times in the bathroom a day. (If I don't do meds, it is just like water). Is this true? I am only emptying my ileostomy 5x/day now and am worried now about trading for much higher frequency. I have had my ileostomy for a year. Did you all notice a correlation? Thanks so much for your help. Having trouble with this decision. Sorry to those of you on this board and www.jpouch.org. I have asked my questions in both places trying to catch all of you that may have information for me. Thanks.
Posted 10/14/2014 4:39 PM (GMT 0)
My loop ileo ran like a faucet 24/7....it was miserable. Three weeks after my takedown surgery I was only going 6x a day with my j pouch without taking any Imodium. (never have taken it) It was only watery in the very beginning but as my body adjusted my stool quickly thickened up. Now some days it's too formed and I would prefer it looser. The body is an amazing thing....it does adjust over time. But it can take some longer than others to adjust. I don't think it was accurate of your surgeon to make those statements to you. Everyone is different.

I'm amazed you have a loop ileo and only empty it 5x a day. That's great! No wonder you are thinking about keeping it. I couldn't live another day with mine so for me it was a no brainer to go forward with takedown. Good luck with your decision!
Posted 10/14/2014 4:55 PM (GMT 0)
From my experience my loop was miserable, they didn't want to let me out of the hospital and were thinking of doing the take-down 2 weeks after my j-pouch creation because of the high-output. I maxed out all the doses of Loperimide, Lomotil, Metamucil, and Tincture of Opium without it helping me very much.

I had the same question that you had, would my j-pouch output be high too. Since my reversal I've been as low as 2 bms per day and I've been able to sleep through the night without needing to empty (except for 2 nights). I've run into some c.diff and pouchitis issues that have increased my output but things are starting to slow back down to normal 2-5 times a day for me and getting solid again.
Posted 10/14/2014 5:03 PM (GMT 0)
Marianne - Did you take any meds when you had your loop ileo to try and slow things down? If so, then it sounds like although you needed meds with your ileo, you do not need them now... Thanks for the well wishes. I have been weighing options for a year and still don't have a clear picture of what I want to do. Tired of being in limbo. Wish I knew what the right decision was.

ks1905 - How long did you have your loop ileo? Are you taking any meds now, when healthy, to get the low number of BMs? It's encouraging to hear that there isn't necessarily a correlation.
Posted 10/14/2014 6:29 PM (GMT 0)

KeepMovinOn said...
Marianne - Did you take any meds when you had your loop ileo to try and slow things down?

I tried on a few different occasions and the Imodium turned my output into a glue like paste that I couldn't empty out of the bag. I would have to throw the bag out and snap on a new one. That wasn't practical. So I stopped taking it and waited patiently until takedown.

I hope you get some more responses because I think you'll see the majority of j pouchers will tell you the difference is night and day. Although I don't think to many of us are on this site.
Posted 10/14/2014 7:12 PM (GMT 0)

KeepMovinOn said...

ks1905 - How long did you have your loop ileo? Are you taking any meds now, when healthy, to get the low number of BMs? It's encouraging to hear that there isn't necessarily a correlation.

4 1/2 months and it really never got much better the entire time. My output was really never below 1.5 liters a day and usually closer to 2 liters after the surgery but as high as 6 liters in the hospital.

I am currently taking Flagyl for c.diff and pouchitis, it has worked better for me then the Vanco during my first course of meds to treat the c.diff. Other than the Flagyl for the next week I am on no other medications.

I went over 14 hours yesterday without a bm. After being on Flagyl for a week it has really helped me.

I think with all this stuff it varies person to person, like with my end ileo (step-1) I had very normal output and I was shocked how much my Loop Ileo put out with my 2nd step.
Posted 10/14/2014 10:21 PM (GMT 0)
I have experienced both end and loop ileo's (currently awaiting takedown and living with a loop). The difference in output is staggering and I have missed my end ileo. You have to consider that the pouch is using the entire small intestine again, so a loop ileo's output shouldn't correlate to pouch function. That's my take on it anyway, I should find out after Nov 5 if my surgery isn't postponed again!
Posted 10/14/2014 11:48 PM (GMT 0)
I'm trying to understand where your surgeon was coming from in telling you that. I'm curious to understand their line of thinking/reasoning.

Personally, neither of my ileos were really high output, however my loop was much more liquidy, as can be expected. Since takedown, as things have settled, I pretty much go to the bathroom the same times throughout the day that I did with my ileos.

I rarely take immodium (a few times a week on days I know I'll be out of the house all afternoon) and take metamucil once at night after dinner. My GI told me they could possibly increase frequency due to too much bulking but I haven't had any issue with that.

I've also noticed as things continue adjusting that I've had less amounts of output at a time. Immediately after takedown it seemed like EVERYTHING I put in my mouth came out, but now it really seems like I'm absorbing a lot more of what I eat (which could also be a result of things naturally getting thicker).
Posted 10/15/2014 3:07 AM (GMT 0)
Silent Lucidity - Yeah, that seems to make sense. I am hoping you are right for both of us. :) Good luck on your takedown. Keep us posted as to how things are going.

Ryan - I am not sure where my surgeon was coming from either, except for at one point in a previous conversation, he had mentioned that if you have to take a lot of Immodium, then you have high motility in your small intestine and a quick transit time; thus, more movements due to not being able to hold the stool as long because much of the water is not absorbed (going through the small intestine too fast). Since he is the most experienced surgeon in my region, (does the most J pouch surgeries in my area and has done them for 28+ years), I figured that he had a reason. I guess I was just hoping the information was not always accurate and there were some j pouchers out there who had found this to be false. It appears that sometimes the opposite is true or it stays about the same, from the responses so far. Makes sense as you have more intestine to absorb water and a place to store the stool. I don't want to give myself false hope, but it would be nice to go into the surgery still believing I may be one of the 4-6 x/day folks.

With your loop ileo, Ryan, did you take meds since it was so liquidity?
Posted 10/16/2014 5:13 AM (GMT 0)
I didn't take meds regularly with my loop ileo since they really didn't help with anything.

I'm still not sure why your surgeon told you that. Do you have a history of high motility (aside from the UC)? Ibs? Poor absorption? Idk, could your age be a concern?

The small bowel and jpouch will adapt some to make up for the lack of the colon. Of course everyone is different so amounts and experiences will vary. According to your sig you just had surgery about 6 weeks ago, with no prior end ileo. So not only has your body been healing from that, your small bowel really hasn't even had the chance to realize it's all you've got now, AND you've got a loop ileo which is a much smaller amount of bowel to begin with, with a naturally quick transit time. So really, unless there is some other past history or issue, I still don't see where your dr is coming from.

I will say that my surgeon stressed all throughout the process that 8-9 bms a day would be considered a "successful" pouch, however the overwhelming majority of his patients fell somewhere in the 4-8 range. Which also agrees with most of the studies and anecdotal evidence out there.

Also, there's no reason why you can't continue taking immodium and metamucil after takedown (except for immediately after of course - you should wait a few weeks so you don't risk any blockages or issues while things heal again and the swelling goes down).
Posted 10/16/2014 1:15 PM (GMT 0)
I actually had my surgery a year and 6 weeks ago...so plenty of time to adjust. I will have to look at my signature. :). I had read a lot of people waited 2 weeks after takedown to try anything, but my doctor said I could start meds after leaving hospital. He has me switch to solid foods before leaving.
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