CLUSTERINGGGGGGGGG!!!!!!!

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NHMike
Posts: 2506
Joined: Fri Jul 21, 2017 3:43 am

Re: CLUSTERINGGGGGGGGG!!!!!!!

Postby NHMike » Mon Jul 15, 2019 7:11 pm

Eleda wrote:
sadysue wrote:Clustering is miserable, painful and time consuming. My radiation onc told me to never wipe my bottom clean. He said always "pat, pat, pat" and get the same results without hurting yourself. He also gave me several peri-anal bottles (I think that is what they are called) to squirt myself clean and then "pat, pat, pat" myself again. Warm water is better than cold water! If you have hemorrhoids, cold water hitting them will be painful. The bottles I use are purchased on Amazon and they have helped me deal with this pain-in-the-ass issue.

https://www.amazon.com/Portable-Handhel ... pons&psc=1

I'm one month short of 9 years since my resection and still regularly have bouts of clustering. I have tried everything under the sun but guess that after nine years, it is what it is! :-)

Sadysue patting is not an option for cleaning for me ( shit everywhere lol)
If I don't clean 110% it burns because it's usually already bleeding :oops: ,,
Thanks Fir the link , will definitely be ordering them

I'll have to use the disabled toilet to fill it a ignore the stares of disapproval :mrgreen:

ADELE X


I carry a medical kit labeled CANCER KIT. It has 6 bottles so I can use a regular stall and have enough water. It also contains a brick of Kirkland wipes and this combination has taken care of the worst of my problems. It's a bit heavy to carry around though.

If someone wants to know why I'm using a disabled something or other, I just show them the kit.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

Rikimaroo
Posts: 324
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: CLUSTERINGGGGGGGGG!!!!!!!

Postby Rikimaroo » Mon Jul 15, 2019 7:38 pm

I been slacking on Metamucil every night before I go to bed. Has anyone taking it and things are better? Sometimes I think it makes me cluster, but I have not consistently taking it every night. I am going to try to take it every night to see if it keeps everything together. Today is another day of clustering. Been to the bathroom like 5-6 times already. But with time lapse between each cluster movement which is not bad, but still I don't want to go this much. I am still nervous about the enema, because of some things I read online, but if Susie is doing it with no problem, then I really think I should try it, however she did mention there are days she still has problems. I just don't know I think people without a rectum should just keep the bag.

Life just sucks without a rectum.
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
FolFiri 11/6 - 5 rounds
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
Maintenance Chemo begin 6/3/20 FolFiri

User avatar
susie0915
Posts: 945
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: CLUSTERINGGGGGGGGG!!!!!!!

Postby susie0915 » Tue Jul 16, 2019 10:29 am

Rikimaroo wrote:I been slacking on Metamucil every night before I go to bed. Has anyone taking it and things are better? Sometimes I think it makes me cluster, but I have not consistently taking it every night. I am going to try to take it every night to see if it keeps everything together. Today is another day of clustering. Been to the bathroom like 5-6 times already. But with time lapse between each cluster movement which is not bad, but still I don't want to go this much. I am still nervous about the enema, because of some things I read online, but if Susie is doing it with no problem, then I really think I should try it, however she did mention there are days she still has problems. I just don't know I think people without a rectum should just keep the bag.

Life just sucks without a rectum.


I have been doing them with great success for 2 1/2 years at the suggestion of my GI from the Bowel Control Clinic at the University of Michigan. My surgeon and oncologist both agree it is a good solution. I don't have many bad days but like anything it doesn't go perfectly all the time. But, a bad enema day is still so much better than any day before enemas. I never had a problem with fecal incontinence or diarrhea. Mine was frequent small bowel movements all day. I always felt like a had to go to the bathroom and never felt empty. The enemas provides me with the empty feeling with no pressure to have a bm. There are many more people that have been using enemas successfully for longer than I. There is much information on this forum about enemas as well. I know you are hesitant as I was in the beginning as well, and to be honest my first few attempts were a disaster. I am writing this after a round of golf which I am able to do without incident twice a week because of enemas. The only downside I have found with enemas is the fact that I have to do them. But, with planning it really is not all that inconvenient. I have traveled with no issues. Having a bag requires maintenance as well so for me the enemas are a better option. I have a friend who has had a colostomy for almost 40 years, and has had to have it revised a couple times. He also irrigates his stoma like an enema so he just wears a cap. I know enemas are not for everyone and I know it seems strange to some, but it was a game changer for me as well as many others. I don't want you to think I am pushing enemas on you, but I understand how frustrated your are. Also, since I have been doing enemas I have not needed to take Metamucil, fiber, or Imodium. I do keep lomotil on hand and will take a couple for peace of mind if I a going to be somewhere and want to avoid any issues. I don't really need it, but I have found it does help with any rectal spasms and just calms the area. I don't know if you have put enemas into the subject box here but this is where I learned alot about them in the beginning. The other good resource was the LARS facebook page and the staff at the bowel control clinic.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

Rikimaroo
Posts: 324
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: CLUSTERINGGGGGGGGG!!!!!!!

Postby Rikimaroo » Tue Jul 16, 2019 11:44 am

Thanks Susie I really appreciate your time and effort to help with this. I don't think your pushing enemas on everyone, you just found a solution that works or you. I am so nervous to try it lol...I need to give it a try though because I rather not get the bag back. I too felt the pressure of pooping even after pooping. Like I said though some days I go once for the whole day normal blowout type poop and then I am done for the day. Of course I do take a lomotil after the blowout just in case of diarrhea. But the last 3 days I been clustering, but not the typical clustering. I get more out, but I keep going back every 25-45 minutes. Which makes life miserable cause you can't do anything. If the enema can clear that out I can give it a try, but like you I think the first couple of times I am going to mess up. Like how does the water stay in your butt and not flow out. I guess that is my main concern. Also what if you want to have a bowel movement during the 3 to 4 cups of water going into your butthole lol :P......Can you answer those questions? Thanks
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
FolFiri 11/6 - 5 rounds
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
Maintenance Chemo begin 6/3/20 FolFiri

User avatar
susie0915
Posts: 945
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: CLUSTERINGGGGGGGGG!!!!!!!

Postby susie0915 » Wed Jul 17, 2019 7:34 am

Rikimaroo wrote:Thanks Susie I really appreciate your time and effort to help with this. I don't think your pushing enemas on everyone, you just found a solution that works or you. I am so nervous to try it lol...I need to give it a try though because I rather not get the bag back. I too felt the pressure of pooping even after pooping. Like I said though some days I go once for the whole day normal blowout type poop and then I am done for the day. Of course I do take a lomotil after the blowout just in case of diarrhea. But the last 3 days I been clustering, but not the typical clustering. I get more out, but I keep going back every 25-45 minutes. Which makes life miserable cause you can't do anything. If the enema can clear that out I can give it a try, but like you I think the first couple of times I am going to mess up. Like how does the water stay in your butt and not flow out. I guess that is my main concern. Also what if you want to have a bowel movement during the 3 to 4 cups of water going into your butthole lol :P......Can you answer those questions? Thanks


The first few times probably won't go smoothly. You may need to administer the water in stages. Maybe get in what you can, then sit on the toilet. When you feel you have expelled all you can can add more water again. In the beginning the stool is built up in the lower bowel so it does make it more difficult for the water to flow freely. I do them every morning, so my lower bowel is empty and the water flows with no problem. It pulls down the stool from higher up which is what allows for a bathroom free day. I suggested the facebook living with low anterior resection syndrome because there are many men on the page that use enemas. This may help you with the anxiety you have about doing them. There are also some that use a retention nozzle that has a balloon the inflates which prohibits the water from coming back out as it goes back in. The balloon is deflated as you sit on the toilet. Many of them actually administer the water while sitting on the toilet since the balloon blocks any water from coming out and they are not comfortable lying on the floor. Many on the page have been using enemas much longer than I with success and they are always so helpful for the new enema users as well as those that have a question who have been doing enemas for some time. I know when I started using them, even though they were working well I was a little anxious about the safety. I have been told by my doctors that plain water is safe to use daily.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

Eleda
Posts: 328
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: CLUSTERINGGGGGGGGG!!!!!!!

Postby Eleda » Wed Jul 17, 2019 9:53 am

Rikimaroo wrote:I been slacking on Metamucil every night before I go to bed. Has anyone taking it and things are better? Sometimes I think it makes me cluster, but I have not consistently taking it every night. I am going to try to take it every night to see if it keeps everything together. Today is another day of clustering. Been to the bathroom like 5-6 times already. But with time lapse between each cluster movement which is not bad, but still I don't want to go this much. I am still nervous about the enema, because of some things I read online, but if Susie is doing it with no problem, then I really think I should try it, however she did mention there are days she still has problems. I just don't know I think people without a rectum should just keep the bag.

Life just sucks without a rectum.



Rikimaroo
I've no rectum either, and I totally get ur frustration and PAIN ( IN THE ASS)
I would have tried sussi option but unfortunately with Small kid's and work just didn't have the time ( and I'm a single parent ) so thats why the sodium bicarbonate works for me because it's predictable and allows me to get them off to school while it's working,,,
I'm 3 months out and my rectum is very narrow ( allowing only small poo at a time)
I have to have general anesthesia for my colonoscopy
( I wasn't even sedated for the ones prior)
So thats how narrow it is,,, my poo goes from the size of a pencil to my small finger
I'm Spain atm with my kids and have been n malaga London and going to Spain again in September,,,,

I'm not going to let this make me a prisoner to my body
Its taken enough from me already,

Try the bicarbe ( nothing to loose ) then the enema
Before you choose to reverse the reversal m

ADELE X
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

Gravelyguy
Posts: 330
Joined: Thu Jul 05, 2018 6:03 pm

Re: CLUSTERINGGGGGGGGG!!!!!!!

Postby Gravelyguy » Fri Jul 19, 2019 7:30 am

Hi Guys,

I have to share my success story and hope it can help someone else!

So I was doing pretty well. I was eating oatmeal for breakfast and taking 3x the maintenance dosage of the probiotics I took during chemo. With this regime I would usually go a couple times in the morning and then have some clustering in the evening. I was able to work and live pretty normally but had some reservations about being out in the evening. I did it but often spent some time going back and forth to the bathroom.

This summer I have been helping out at a summer camp with some long 12+ hour days with only port a potties.
So I started to do some experimenting. I stopped eating oatmeal in the morning. I think the fiber contributed to the clustering. I started really upping my water because am outside all day long. But the big thing, I think is I restarted taking a product called BioCleanse (a magnesium based supplement) at around 10 pm with my probiotics. I had taken this before and during chemo but stopped after reversal because I thought I wouldn’t have any control of my BM’s on it.

Guys for 3 weeks now. I get up go to the bathroom within 20 minutes of moving about and that is it, for the day!! No clustering, very little gas, it is awesome. I feel like the old me again!

I don’t think this would be the best if you are dealing with diarrhea but for those of us with lots of clustering it certainly has helped me!!!!

Back to the campers,

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!

Eleda
Posts: 328
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: CLUSTERINGGGGGGGGG!!!!!!!

Postby Eleda » Fri Jul 19, 2019 7:55 am

Dave that's great to hear,,,
I found the same with the fiber, (worse)
I'm taking sodium bicarbonate in the morning for a quick clear out , but would gladly try anything else...

Which brand do you use Dave???
I'll b on Amazon straight away

Thanks for info deffo trying it when I get home
ADELE X
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

Gravelyguy
Posts: 330
Joined: Thu Jul 05, 2018 6:03 pm

Re: CLUSTERINGGGGGGGGG!!!!!!!

Postby Gravelyguy » Fri Jul 19, 2019 8:00 am

Hi Adele,

I am on duty with kids in a few minutes but have a short (6hoir day) today.

The probiotics I use and BioCleanse are both Plexus products. If you are in the US or Canada it is much less expensive to buy from someone who sells it than Amazon. If you are in the US or Canada and don’t know anyone who sells it, let me know.

Dave
Last edited by Gravelyguy on Wed Jul 24, 2019 7:17 pm, edited 1 time in total.
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!

Eleda
Posts: 328
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: CLUSTERINGGGGGGGGG!!!!!!!

Postby Eleda » Fri Jul 19, 2019 8:06 am

Thanks a bunch Dave,
I'm n Ireland, But I'll get them somhow
Thanks Adele X
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

NHMike
Posts: 2506
Joined: Fri Jul 21, 2017 3:43 am

Re: CLUSTERINGGGGGGGGG!!!!!!!

Postby NHMike » Fri Jul 19, 2019 9:36 am

Rikimaroo wrote:I been slacking on Metamucil every night before I go to bed. Has anyone taking it and things are better? Sometimes I think it makes me cluster, but I have not consistently taking it every night. I am going to try to take it every night to see if it keeps everything together. Today is another day of clustering. Been to the bathroom like 5-6 times already. But with time lapse between each cluster movement which is not bad, but still I don't want to go this much. I am still nervous about the enema, because of some things I read online, but if Susie is doing it with no problem, then I really think I should try it, however she did mention there are days she still has problems. I just don't know I think people without a rectum should just keep the bag.

Life just sucks without a rectum.


I find that Nopalina is far more effective than Metamucil. I could see no visible difference with Metamucil or the CVS equivalent. Nopalina has different types of fiber and I suspect that some kinds of fiber work for some people and not for others.

BTW, I consider 5-6 times normal. Clustering for me is more like 10-30 times a day and more than two hours of time.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

NHMike
Posts: 2506
Joined: Fri Jul 21, 2017 3:43 am

Re: CLUSTERINGGGGGGGGG!!!!!!!

Postby NHMike » Fri Jul 19, 2019 9:44 am

Gravelyguy wrote:Hi Guys,

I have to share my success story and hope it can help someone else!

So I was doing pretty well. I was eating oatmeal for breakfast and taking 3x the maintenance dosage of the probiotics I took during chemo. With this regime I would usually go a couple times in the morning and then have some clustering in the evening. I was able to work and live pretty normally but had some reservations about being out in the evening. I did it but often spent some time going back and forth to the bathroom.

This summer I have been helping out at a summer camp with some long 12+ hour days with only port a potties.
So I started to do some experimenting. I stopped eating oatmeal in the morning. I think the fiber contributed to the clustering. I started really upping my water because am outside all day long. But the big thing, I think is I restarted taking a product called BioCleanse (a magnesium based supplement) at around 10 pm with my probiotics. I had taken this before and during chemo but stopped after reversal because I thought I wouldn’t have any control of my BM’s on it.

Guys for 3 weeks now. I get up go to the bathroom within 20 minutes of moving about and that is it, for the day!! No clustering, very little gas, it is awesome. I feel like the old me again!

I don’t think this would be the best if you are dealing with diarrhea but for those of us with lots of clustering it certainly has helped me!!!!

Back to the campers,

Dave


I added this to my wishlist at Amazon. The ingredients are:

Vitamin C
Magnesium (380 mg)
Sodium
Orange Peel
Lemon Peel
Quince
Rice Flour

It's interesting as the ingredients in Nopalina are:

Canadian Flax Seed
Wheat Bran
Oat Bran
Senna Leaves
Psyllium Husk
Edible Cactus
Orange Fruit Extract
Pineapple Fruit Extract
Apple Fruit Extract
Grapefruit Fruit Extract

I thought that the fruit extracts were just for flavor but maybe they help the digestive system. The Bioclense is pretty expensive. I'm guessing that the fruit parts may be comparable with these two though I will look up to see if Quince has digestive benefits. I think that it would be preferable to just eat the fruit.

I take 400 mg (or more) Mg per day. I also usually get additional sodium, potassium and calcium from Nuun tablets.

I do appreciate hearing what works for others.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

Gravelyguy
Posts: 330
Joined: Thu Jul 05, 2018 6:03 pm

Re: CLUSTERINGGGGGGGGG!!!!!!!

Postby Gravelyguy » Fri Jul 19, 2019 3:52 pm

Mike,

If you decide to try BioCleanse it is 1/2 to 2/3 the cost on Amazon if you order from a Plexus “Ambassador”. If you don’t know anyone who is an ambassador let me know. My wife is one.

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!

Rikimaroo
Posts: 324
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: CLUSTERINGGGGGGGGG!!!!!!!

Postby Rikimaroo » Sun Jul 21, 2019 12:32 am

So I started taking the Metamucil in the morning and night before going to bed and it has helped significantly with the clustering. I go 2-4 times a day now sometimes less. My surgeon called me and told me to take it twice a day.
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
FolFiri 11/6 - 5 rounds
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
Maintenance Chemo begin 6/3/20 FolFiri

Rikimaroo
Posts: 324
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: CLUSTERINGGGGGGGGG!!!!!!!

Postby Rikimaroo » Sun Jul 21, 2019 12:46 am

NHMike wrote:
Rikimaroo wrote:I been slacking on Metamucil every night before I go to bed. Has anyone taking it and things are better? Sometimes I think it makes me cluster, but I have not consistently taking it every night. I am going to try to take it every night to see if it keeps everything together. Today is another day of clustering. Been to the bathroom like 5-6 times already. But with time lapse between each cluster movement which is not bad, but still I don't want to go this much. I am still nervous about the enema, because of some things I read online, but if Susie is doing it with no problem, then I really think I should try it, however she did mention there are days she still has problems. I just don't know I think people without a rectum should just keep the bag.

Life just sucks without a rectum.


I find that Nopalina is far more effective than Metamucil. I could see no visible difference with Metamucil or the CVS equivalent. Nopalina has different types of fiber and I suspect that some kinds of fiber work for some people and not for others.

BTW, I consider 5-6 times normal. Clustering for me is more like 10-30 times a day and more than two hours of time.


Mike I found that I got diarrhea from the nopalina when I tried it. My wife had a bag of it here.
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
FolFiri 11/6 - 5 rounds
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
Maintenance Chemo begin 6/3/20 FolFiri


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