Clustering

[Lordswood77]

Hi all,

I'm struggling at the moment with clustering of my bowel movements.

I had an LAR three years ago and whilst it's not been an easy ride I have managed to get by.

I have a very small amount of rectum left which doesn't help but I'm currently going to the toilet about 5 or 6 times in 15 minutes. My stools are formed, softish and of a medium size but I just can seem to completely empty my bowel fully. Once I leave the bathroom I'm quickly rushing back to produce another stool of a similar size. I just wish it would all come out together.

I'm currently taking psyllium as a supplement to increase my fibre intake.

Any thoughts or suggestions welcomed.

[BrownBagger]

I call having bowel movement a "process." I totally relate to the frustration at never feeling that you're done.

You might try Imodium or better yet, Lomotil, which needs a script. Those two meds can buy you some downtime so you can, for example, get a good night's sleep or get through the afternoon at work.

My only caution is that you pay attention to the "status" of your colon and don't allow your colon to get jammed up. Sometimes, you might need Metamucil or other laxative to clean out.

Sucks, but it is what it is.

Good luck.

[Rstarrg]

Same issues here. I think the storage capacity is just too small. It's all weird now. I get scared to attend work meetings or really any functions cause when I have to go, I need a bathroom and some time for all that.

I have no answers really. Just know you are def not alone.

[Nik Colon]

I have my full rectum, but my storage area (my thoughts and conclusion) sigmoid is gone, so I have similar issues. To go more or less, depending, use something to clean you out, or to hold it in longer, alternate maybe. If just at home let it go, if you need to hold it in, use somethin to slow it down. That's all I can suggest, sorry

[Pita]

To go more or less, depending, use something to clean you out, or to hold it in longer, alternate maybe. If just at home let it go, if you need to hold it in, use somethin to slow it down.

What Nik says is perfect... I have the same problem, but I haven't quite learned the formula yet, working on it daily.
Good Luck LW!!!

[Lordswood77]

Hi all,

Thanks for the responses.

Having spoken to the colorectal support nurse we decided to give irrigation a try using the qufora system although I'm going to have to wait for my chemo to finish first.

I them meantime I'll focus on diet and try a bit more experimentation to find a balance that works

[LaciK]

I recently went to the gastroenterologist and he prescribed Dicyclomine to reduce the spasms and slow things down a bit (without causing the constipation I experienced with Immodium). He also told me to add some fiber to my diet. It's been working well for me (although it has only been 11 days since I saw him). I haven't had an accident in over a week and I had pretty loose diarrhea today and was able to hold it long enough to get to the bathroom. I still have the "oops, I'm not done yet) issues, but I am making progress. This all seems like trial and error. Good luck!

[teachpdx]

I'm a bit OCD when it comes to figuring out my bowels. I take daily notes and continue to tweek my diet and meds to help things along. This is what is working for me so far:

1) Try to eat full meals and not snack.
Your gut is making a bolus after you eat and since many of us no longer have good storage to accumulate our boluses - many in many out.

2) Increased carbohydrate intake
Since we have less storage, drying things up along the way can help. I've started making my own sourdough bread with my own starter. I eat the bread any time a meal has a high moisture or acid content. My bread has usually only AT MOST 1/3 white flour.

3) When eating a salad or similar types foods I take two Immodium immediately after I eat
It seems a better place than after the problem is already there. I also try and eat bread with these meals

These things don't always work, but they do seem to make a difference. I tried psyllium but it didn't seem to work so well and I had to gag it down. I find the bread does a better job for me. Fat is my biggest problem that can cause accidents. Everyone is different but these are some things that have worked well for me.

Peace,

Kristi

[Bob_Weiss]

After a few years of clustering, I finally found what seems to be a reasonable solution. Instead if taking Metamucil once a day which I had tried periodically with limited success; I now use a small amount of Metamucil with EVERY meal. It probably equals a total of about 1 tablespoon per day. No longer 5-6 days of constipation; no longer urgent watery diarrhea which requires a rush to the bathroom. The only minor problem is that Metamucil leads to an increase in gas, but that is a small problem compared to my prior situation. Also, I avoid eating large meals, which doesn't cause hunger pangs for me.

[zephyr]

I had horrible clustering. It wasn't unusual for me to make over 30 trips in a day. Annette Bisanz's bowel training program I learned about here really made all the difference. The original MD Anderson link that was listed doesn't work anymore but after some research I found a copy of the article on page 2 of this newsletter:

http://www.redliongroup.org/roar/news014.pdf

Hope it helps you.

[Pita]

page 2 of this newsletter:
http://www.redliongroup.org/roar/news014.pdf

Thank you zephyr for that link...

[RichB]

Hi

My input is that you gotta keep the stool firm. I have no rectum left and the sphincter aint what it was when it comes to holding loose stuff inside. Agree that a spoon of metamucil with every meal is good. Agree bread and rice and eggs are good. I try not to eat lunch. maybe a banana but thats it. Breakfast is eggs on toast. This gets me through work. Evening meal is normally chicken and rice. Coffee and chocolate makes me loose as does most fruit and veg in any quantity. I do go off piste of course but normally regret it. I take Loperimide and this helps a lot. All this tends to make for bigger stools less often, but still too often really, just not those 2 hour on and off affairs. I have been trying the water enema at night and its not that pleasant but does clean me out for 24 hours, so I can run and go to work fine next day no anxiety. Even then if I dont keep to the regimen above, then I start needing to go earlier in the following afternoon before work is over. I still cant have a coffee.

[sadysue]

I wish I had some helpful advice but unfortunately I do not. I am a little over five years since my surgery and I still experience clustering. Not every day but maybe once or twice a week. I've tried everything under the sun but nothing has helped. I also have no idea what brings it on - for about two years, I wrote down every morsel I put in my mouth. It didn't matter. I could eat something one day and be fine; a week later would eat the same and it would be not so fine. One thing I can say is that when I start clustering, it keeps up until I have a big blow out and I feel fantastic afterwards and I probably weigh a few pounds lighter....for a couple of days. Then the build up begins again. Good luck to you and I hope you find something that works! If you find it, please post here
Mary Ann

[BrownBagger]

I've clustered since getting reversed back in '09, but these days I mostly attribute it to chemo. The time or two that I've been off chemo for extended periods (months), the clustering stopped and my bowel situation returned to something resembling normal. I have noticed however, that it's a lot worse to cluster when you're constipated than when you're loosened up. At least in the latter case, you eventually empty out and you get a few days of relief. When you're constipated, however, it's just miserable--all that work and discomfort for very little to show for it. That can go on for weeks if you let it. I went from constipation on Irinotecan to near-incontinence on Oxilpatin. Not that I like Oxy one bit, but at least it allowed me to have productive sessions on the toilet, the occasional night-time incontinence aside.

So I guess I'd suggest taking something like magnesium and/or Metamucil to get your bowels moving and hope that you can empty out on a more regular basis.