CLUSTERINGGGGGGGGG!!!!!!!

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

Re: CLUSTERINGGGGGGGGG!!!!!!!

Postby Eleda » Sat Jul 13, 2019 4:47 am

Rikimaroo wrote:Yesterday was worse then normal. I clustered and I don't know what caused it maybe it was the Jambalaya I made, My wife was craving it. I use the Zatarain's® Jambalaya Rice Mix - 8oz. Either way I hate Clustering, its burns the butt and It's annoying. Your day is pretty much shot. I miss my Ileostomy bag LOL...But It's so hard to turn back to it because who wants a bag/appliance on your body :(.....But I know I could do everything with it and never worry about the shits. Today however I didn't poop yet. That's because yesterday I took like 4 lomotil at least that's what I think. But I have been farting, and it stinks like hell LOL...usually my farts don't stink.

I don't know Mike but whenever I have beans I fart a lot the next day and cluster. And this has happen several times now :(. Do you notice any issues after eating beans? I love beans when I have Spanish food and my wife is Spanish....

Anyways, let's hope things get better for all of us.


Rikimaroo, I'm n Spain ATM so lots of fruit and salads, but it's definitely speeding up my insides,,,
Normally after my bicarbonate in the morning I don't poo anymore till next morning bit now I'm going again from 2 am to 4 am,
The concoction the continance nurse Gabe me was prunes dates rasins etc and I was nearly dead with gas,,,, I eat kidney beans in chilli and don't seem to have a problem,,,

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 » Sat Jul 13, 2019 2:54 pm

Eleda wrote:Mike if I'm stressed it won't work eg , yesterday had to catch a flight to Spain. Had to b at the airport at about 9 am ....
Awake all night worried,
Then got up at 7 am took my bicarbonate ( :twisted: :twisted: :twisted: :twisted: :twisted: still waiting at 8!45 !!!!!)
It always happens when I have something important,,,
Body not cooperating with mind
Please let me know if it helps u.....its my lifeline

Adele x


I've just recovered from the trip and yesterday was a clustering day. So I'm trying to get back into my routine. I took Nopalina last night and this morning was much better. About three hours but it was easy. Easy could be every 30-45 minutes. Hard could be every 10-15 minutes. I have a 30 minute presentation to our town Planning Board meeting on Tuesday (a business removed a bunch of trees from our property, built a parking lot on it and drainage structures and we're working on getting them to restore our property). So I will fast from Sunday night until Tuesday night so that I can execute.

I generally spend some time between doing experiments because they can be so costly. So I don't expect to try it for a while - when I have some time where I don't have tight time requirements. Which seems to be ..... never.
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 » Sat Jul 13, 2019 2:56 pm

Eleda wrote:
Rikimaroo wrote:Yesterday was worse then normal. I clustered and I don't know what caused it maybe it was the Jambalaya I made, My wife was craving it. I use the Zatarain's® Jambalaya Rice Mix - 8oz. Either way I hate Clustering, its burns the butt and It's annoying. Your day is pretty much shot. I miss my Ileostomy bag LOL...But It's so hard to turn back to it because who wants a bag/appliance on your body :(.....But I know I could do everything with it and never worry about the shits. Today however I didn't poop yet. That's because yesterday I took like 4 lomotil at least that's what I think. But I have been farting, and it stinks like hell LOL...usually my farts don't stink.

I don't know Mike but whenever I have beans I fart a lot the next day and cluster. And this has happen several times now :(. Do you notice any issues after eating beans? I love beans when I have Spanish food and my wife is Spanish....

Anyways, let's hope things get better for all of us.


Rikimaroo, I'm n Spain ATM so lots of fruit and salads, but it's definitely speeding up my insides,,,
Normally after my bicarbonate in the morning I don't poo anymore till next morning bit now I'm going again from 2 am to 4 am,
The concoction the continance nurse Gabe me was prunes dates rasins etc and I was nearly dead with gas,,,, I eat kidney beans in chilli and don't seem to have a problem,,,

Adele x


I had thought about Prune Juice during a random walk of the grocery store. I might add it to my list of things to try.

I had Black Beans and Rice last night with other vegetables. Just fabulous stuff.
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 » Sun Jul 14, 2019 1:13 am

I have seriously considered getting my bag back. This just suck without a rectum it is just a up and down roller coaster. Somem day your fine and other days its just a clustering burning nonsense
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

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

Re: CLUSTERINGGGGGGGGG!!!!!!!

Postby Eleda » Sun Jul 14, 2019 3:23 am

Hi Mike,
Don't know about the prune juice , ( worth a try)
The recipy the Continance nurse gave me was
Cup pitted prunes
Cup rasins
Cup currens
Cup dates
Cop of prune juice all in the blender
Take 1xTbs 2x day

I did this for 3 days ( stopped my bicarbonate)
Was demented from clustering 25times average
And nearly dead from gas.... So stopped after 3 days ( wanted me to continue for 2 x weeks)

Might work for others pictullarly if u get blockages 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

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

Re: CLUSTERINGGGGGGGGG!!!!!!!

Postby susie0915 » Sun Jul 14, 2019 7:21 am

Rikimaroo wrote:I have seriously considered getting my bag back. This just suck without a rectum it is just a up and down roller coaster. Somem day your fine and other days its just a clustering burning nonsense


I know I have mentioned this before, but enemas may just be what would work for you. Before going through another surgery it may be worth trying. It's just warm water and takes me 30-45 minutes in the morning. I know it sounds intimidating, but really is quite easy after a little practice and developing a routine. The enema kits are only about $25 on amazon. I had never done enemas before and the first few times were awkward, but I kept trying and everything clicked. I lie on my left side with top leg bent and administer the water. I use a thick yoga mat with a towel on it. I hang the bag on the towel rack of my shower door. I use 4 cups of water. Most people use anywhere between 3-8 cups of warm water. I lay there for a few minutes and then get on the toilet to empty. In the beginning I wasn't able to hold the water and would have to get on the toilet immediately. Now I can hold for quite some time. I have been doing enemas daily for 2 1/2 years. When my GI suggested them it never occurred to me to do an enema. You are basically emptying your lower bowel. I never go again until I do an enema the next morning. It allows me to eat without fear, my bottom is never sore, and I can go out and participate in activities I love. There is a facebook page group of people suffering from low anterior resection syndrome. The use of enemas is discussed on that page in length. There is alot of helpful information on the page even for people that do not use enemas and have developed other routines to control the clustering. I always warn that it may take a number of attempts before you realize the benefits, but it is so worth it if you do not get discouraged and keep trying. I understand the considering a colostomy. I did prior to enemas, and I used to envy a friend of mine that had a colostomy and irrigated his stoma. He only wears a cap with no bag. Enemas are the same concept, just going through the rear end vs. a stoma. I don't mean to push enemas on you, but it may be an easier solution than another surgery as colostomies also require alot of maintenance, and if surgery can be avoided it would be worth it. And,you should talk to your surgeon or doctor before doing enemas. My doctors are all onboard, as rectal irrigation is becoming more accepted as a solution to the problems those face after removal of most or all of their rectum.
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 » Sun Jul 14, 2019 9:49 am

Susie, thank you and I know you mentioned it several times before. I think I will try it before making any rash decisions. Can you provide links to what you buy from amazon?
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 » Sun Jul 14, 2019 11:24 am

Rikimaroo wrote:Susie, thank you and I know you mentioned it several times before. I think I will try it before making any rash decisions. Can you provide links to what you buy from amazon?


I'm having a hard time getting the link to post, but the Mikacare 13 pc enema kit on amazon for $25 is a good one. It is worth a try before having another surgery. I would speak to your doctors first to make sure there is no reason you should not try. Also, if you are on facebook, you may want to check out the Living with Low Anterior Resection Syndrome. It provides alot of information in addition to enemas as well.
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 » Sun Jul 14, 2019 11:49 am

I don't think I have LARS. My issue is that sometimes I have pooping 4-5 times a day, then someday its one time. The problem is it starts to burn sometimes when I go 4-5 times a day, also the unpredictability of it all makes it hard to do a job, or meet with clients, or do uber/lyft.etcc...I have my own IT business so I work from home which is great, but I can't go out and try to get new clients because I am worried while I am talking to them I have to poop and it has happened. That's my main issue the unpredictability of it.

If the enemas work I am going to try that. It's just weird as I am a male and I never done it and sticking something up my booty hole makes me a little intimidated LOL....not saying you were not intimidated Susie hahah!!
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

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

Re: CLUSTERINGGGGGGGGG!!!!!!!

Postby Eleda » Sun Jul 14, 2019 12:37 pm

Hi Suzie,
I totally would go for ur option but ATM my mornings with the kids don't allow,
In saying that, I've just giving up work so might b an option after summer,
My surgeons nurse mentioned enemas to me if Im desperate ,and she said shes experienced and would go throug it with me so,
obviously my surgeon is on board
I've a coloanal anastomosis so I can pretty much feel it if I put pressure on my anus,,,,,
I shit like he the thickness of a oencil...
I've a lot of bleeding atm :x
I'll do anything before I go back to the bag,,,
I
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

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

Re: CLUSTERINGGGGGGGGG!!!!!!!

Postby susie0915 » Sun Jul 14, 2019 2:35 pm

Eleda wrote:Hi Suzie,
I totally would go for ur option but ATM my mornings with the kids don't allow,
In saying that, I've just giving up work so might b an option after summer,
My surgeons nurse mentioned enemas to me if Im desperate ,and she said shes experienced and would go throug it with me so,
obviously my surgeon is on board
I've a coloanal anastomosis so I can pretty much feel it if I put pressure on my anus,,,,,
I shit like he the thickness of a oencil...
I've a lot of bleeding atm :x
I'll do anything before I go back to the bag,,,
I


It would be so worth trying, It really did change my life. I do in the morning, but many do them in the evenings. I have done them at different times of the day and don't really notice any difference. You can develop a routine that is convenient for you. If you're interested you should check out the facebook page Living with Low Anterior Resection Syndrome. So many good ideas from those that use enemas and others that have found other ways to function normally. It is private and only you can see the posts.
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

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

Re: CLUSTERINGGGGGGGGG!!!!!!!

Postby NHMike » Mon Jul 15, 2019 7:52 am

Rikimaroo wrote:I don't think I have LARS. My issue is that sometimes I have pooping 4-5 times a day, then someday its one time. The problem is it starts to burn sometimes when I go 4-5 times a day, also the unpredictability of it all makes it hard to do a job, or meet with clients, or do uber/lyft.etcc...I have my own IT business so I work from home which is great, but I can't go out and try to get new clients because I am worried while I am talking to them I have to poop and it has happened. That's my main issue the unpredictability of it.

If the enemas work I am going to try that. It's just weird as I am a male and I never done it and sticking something up my booty hole makes me a little intimidated LOL....not saying you were not intimidated Susie hahah!!


What is the area of the burning? I sometimes have to go 20 times in a day and sometimes things get sore and sometimes they don't. If it's because of caustic output, then you can use a skin protection product. It could be that output is too wet or acidic as well. I'm not sure how to change that. I think that the best approach is to get everything out quickly but getting that to work reliably is a challenge. I agree that an enema could provide that reliability.
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 10:36 am

Honestly my butthole. Thats about it. And the stool is not watery or diarrhea is just normal stool. Maybe its because I did chemo June 22nd. Sometimes it makes it harder to heal sooner so I get that burn when I am pooing. I hate this, I want to try the enema but I am so intimidated. susie one thing I read about the water enema is that it is not suppose to be used daily but you said you have been doing it for 2.5 years. They say it causes the good bacteria to die. Also your body naturally manages, but I know with our bodies its different since we went through all this cancer stuff. I also have a colo-anal anastomosis.
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

MetastaticEquilibria
Posts: 74
Joined: Wed Jul 10, 2019 4:42 am
Location: Japan

Re: CLUSTERINGGGGGGGGG!!!!!!!

Postby MetastaticEquilibria » Mon Jul 15, 2019 4:59 pm

Strongly second the suggestion for a bidet or washlet. Squirt bottle might sort of work as a poor man’s substitute, but nothing beats the real thing. I’m on the toilet so many times a day on average I shudder to think what life, and my bottom, would be like without. No need to suffer needlessly!
M55 Stage 4 Japan
12/16 Tumor rect/sig jct
1/17 Resect T3N0M0+LVI
2-6/17 UFT+UZEL
7/17 Recurr.+2 liver mets
7-10/17 FOLFOX+Vectibix
11-12/17 FOLFOX+pelvic rad 60 Gy
1-7/18 FOLFOX+Vectibix
8-9/18 Liver protons 73 GyE
10-12/18 Xeloda+Avastin
2/19 New liver met
3/19 Liver protons 66 GyE
4/19 3 Lung mets
4-6/19 Vectibix
7-9/19 FOLFIRI+Cyramza
9/19 Biliary stent
10-11/19 Lonsurf+Avastin, new liver met
12/19 HAI (via port not pump)
CEA 1.4-223 now 96
CA19-9 2.8-258 now 258
RAS wild MSS MET+ TP53-
UGT1A1*28 homo

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

Re: CLUSTERINGGGGGGGGG!!!!!!!

Postby Eleda » Mon Jul 15, 2019 6:31 pm

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
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


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