Clustering & marshmallows

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teachpdx
Posts: 634
Joined: Wed Jan 16, 2013 12:29 am
Location: Portland, OR

Clustering & marshmallows

Postby teachpdx » Tue Nov 26, 2019 10:39 pm

Hi All,

I've been fighting clustering from the get go & was really starting to get annoyed on how it kept infringing on my life. Did a bit of research and came upon comments of people with ileostomies using marshmallows to slow down output so they could change their bags. I remembered that from early on and figured - why not?

So I got a bag of SMALL marshmallows and pop four before and after a meal (or a cup of coffee) and I have not had a clustering episode since. I don't particularly like marshmallows, so the small ones are easy to eat. Also, 18 small marshmallows is 100 calories and when I think of all the extra carbs I've eaten over the past few years to absorb problem foods (veggies) 100 calories is nothing.

Hope this helps someone - better than meds.

Peace and Happy Thanksgiving

Kristi
4/24/12 RC T3N1M0 age 53
5/23-7/2 - 26 chemorad - Xeloda
7/16 Lynch- MSH2
8/28 LAR w/ temp ileo, CR, 0/11,M0, hysterectomy
10/13 6 cycles Xeloda - completed only 1 1/2 due to HFS
3/12/13 - reversal
8/13 NED
6/15 - HFS gone!

Gravelyguy
Posts: 308
Joined: Thu Jul 05, 2018 6:03 pm

Re: Clustering & marshmallows

Postby Gravelyguy » Wed Nov 27, 2019 10:55 am

Thanks teachpdx!

That is interesting info. I am doing pretty well but do get some late afternoon/evening clustering on occasion. Nice to have another thing to try!

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0
12/19/19 clear scans CEA 1.0 still NED!
6/17/20 clear scans CEA 1.1 still NED!

Phillypatient
Posts: 32
Joined: Sun Aug 05, 2018 11:28 am

Re: Clustering & marshmallows

Postby Phillypatient » Thu Nov 28, 2019 6:43 pm

Good to know. I recently went to my GI doc after a couple of years of clustering and he mentioned that I might be somewhat constipated. After doing an X-ray he confirmed it. I started to drink Smooth Move tea every evening and it moved things along much faster. He mentioned that the force to evacuate the bowels actually comes from the large intestine and not the rectum as I had previously assumed. That explained why many times you feel a forceful movement even with no rectum. ( I had an LAR with coloanal anastomosis ) I suppose the theory is that the ileostomy makes the large intestine dormant and so it needs to relearn how to move things along.

I hope this helps anyone frustrated like I was.
Male 48, dx 10/16 rectal cancer t3n1m0
Chemorad Dec 16
Xelox Mar 17-Jul 17
Lar Sept 17
Reversal Dec 17

Gravelyguy
Posts: 308
Joined: Thu Jul 05, 2018 6:03 pm

Re: Clustering & marshmallows

Postby Gravelyguy » Mon Dec 16, 2019 2:00 pm

I just wanted to add an update. I have been trying to take a full size marshmallow, because that is what we had on hand, with each meal. I had not had terrible clustering before this, but this seems to have helped with the little that I have had. There have still been a few days that I will have to go a little bit within an hour's time frame but there is not as much of a sense of urgency. It also seems to have helped some with gas!

This is all very unscientific. It could very well be diet related too. I have been roped into coaching 75 middle school nordic skiers for the first time in 20 years so I am eating supper later in the evening and tend to be eating less as it is later.

I did spend 6 hours in 1 degree weather on Saturday and did not have go the entire time. It spanned the late afternoon which is usually my clustering time and I had no issues!

So if you are having issues with clustering an/or gas give it a try and let us know if it works for you!

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0
12/19/19 clear scans CEA 1.0 still NED!
6/17/20 clear scans CEA 1.1 still NED!

teachpdx
Posts: 634
Joined: Wed Jan 16, 2013 12:29 am
Location: Portland, OR

Re: Clustering & marshmallows

Postby teachpdx » Wed Dec 18, 2019 11:18 pm

Hey Dave,

I also do much better when I don't snack and get consistent exercise. I find myself using the marshmallows most for eating foods that go through too fast - like lots of vegetables, soups and tomato based foods. I've also have been able to eat oatmeal again. Would definitely cause some clustering. So 'mallows before and after. Happy to have my oatmeal back.
4/24/12 RC T3N1M0 age 53
5/23-7/2 - 26 chemorad - Xeloda
7/16 Lynch- MSH2
8/28 LAR w/ temp ileo, CR, 0/11,M0, hysterectomy
10/13 6 cycles Xeloda - completed only 1 1/2 due to HFS
3/12/13 - reversal
8/13 NED
6/15 - HFS gone!


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