Update from Rikimaroo

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Rikimaroo
Posts: 222
Joined: Tue Dec 20, 2016 8:48 pm

Re: Update from Rikimaroo

Postby Rikimaroo » Wed Oct 24, 2018 5:48 pm

Today has been crazy. I think I went to the bathroom at least 15 times or more. The poop is coming out but its like droplets of semi formed mushy stuff. My anus is sore and the butt burn is there. I use the calmoseptine then right after I walk back to my desk or sofa, 3-5 minutes and back to the bathroom to poop out one little piece.
RC T3N1M0
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
Blood Clot in Neck 1/2018, stop avastin, continue FolFox
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA - 12/16 26.1, 1/17 32.2, 3/17 6.6, 11/17 500.5, 12/17 638.5, 1/3/18 424.8, 1/16/18 163.5, 1/31/18 62.2, 2/18 21.1, 3/18 14, 4/18 .8, 10/18 1.2, 12/18 3.2, 2/8 11.4, 3/6 22

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CRguy
Posts: 9929
Joined: Sun Feb 10, 2008 6:00 pm

Re: Update from Rikimaroo

Postby CRguy » Wed Oct 24, 2018 7:11 pm

textbook clustering homie ... as in
CLUSTER %#*k = fustercluck

NOT NICE = leading to "clustration" = the immense FRUSTRATION from clustering :twisted:
from this totally irreverent topic by some BUTT head here a few years ago ... oh wait :shock: :oops:
that may have been me
Silly Sayings & Slang thread

IMO / IME I needed a good protectant for the back door, along the lines of Proctosone / Proctosedyl
which have heavy duty topical agents to heal and seal the BUTT skin
( antibiotic/antifungal/cortisone/demulcent/local anesthetic )
check out this prior post search for more info http://coloncancersupport.colonclub.com ... or_id=1025

There is NO fun with " fire in the hole ... "

sorry ... BUTT you may need to get used to my version of "sense of ...humor ? "

BTDT

Best wishes
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
12 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

NHMike
Posts: 2009
Joined: Fri Jul 21, 2017 3:43 am

Re: Update from Rikimaroo

Postby NHMike » Wed Oct 24, 2018 8:21 pm

Rikimaroo wrote:Today has been crazy. I think I went to the bathroom at least 15 times or more. The poop is coming out but its like droplets of semi formed mushy stuff. My anus is sore and the butt burn is there. I use the calmoseptine then right after I walk back to my desk or sofa, 3-5 minutes and back to the bathroom to poop out one little piece.


Yeah, it's early days. Your body will get better at removing water so that you'll get better-formed stuff.

I have a stool in the bathroom. If I think I'm going to be on the toilet for a while, I'll put a laptop on it and work or watch a movie there. I woke up today at 2:30 AM and was on the toilet for 3.5 hours. Things can be challenging for a while.
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

Phillypatient
Posts: 29
Joined: Sun Aug 05, 2018 11:28 am

Re: Update from Rikimaroo

Postby Phillypatient » Wed Oct 24, 2018 8:56 pm

My suggestion is to get a bidet attachment to your toilet. The wiping will take it’s toll on you fast!
Male 48, dx 10/16 rectal cancer t3n1m0
Chemorad Dec 16
Xelox Mar 17-Jul 17
Lar Sept 17
Reversal Dec 17

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CRguy
Posts: 9929
Joined: Sun Feb 10, 2008 6:00 pm

Re: Update from Rikimaroo

Postby CRguy » Wed Oct 24, 2018 11:42 pm

YUP
wholeheartedly support bio-bidet type toilet seats or a bidet !!

WORD !!!

YES .... BTDT

Best wishes
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
12 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

NHMike
Posts: 2009
Joined: Fri Jul 21, 2017 3:43 am

Re: Update from Rikimaroo

Postby NHMike » Thu Oct 25, 2018 5:16 am

An alternative to a bidet is a set of peri bottles which you can carry with you.

https://www.amazon.com/Perineal-Lavette ... ref=sr_1_4

I see that you can get these with extension attachments too. I carry three of these in my Coloplast sample bag along with two pads and a travel pack of wipes. I leave a few in one of the bathrooms at home.
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: 222
Joined: Tue Dec 20, 2016 8:48 pm

Re: Update from Rikimaroo

Postby Rikimaroo » Thu Oct 25, 2018 7:19 pm

CRguy thanks so much for the post, that was hilarious. I figured it was clustering and thought perhaps there is a way around it but since I am only 1 week out I guess all this heartaches makes sense

NHMike thanks for the insight, i know you just got yours done about 3.5 months ago I hope things are getting better for you

I pooped a lot again today, but sometimes it came out quick and mushy into my depend, couldn’t make it to the bathroom in time. Just when I thought the clustering was done, it was still around. It is coming more liquidity again

I am going to email my doctor to see if I can take anything now so I can do something I like to go out and drive Uber/Lyft and cant with this unpredictability.
RC T3N1M0
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
Blood Clot in Neck 1/2018, stop avastin, continue FolFox
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA - 12/16 26.1, 1/17 32.2, 3/17 6.6, 11/17 500.5, 12/17 638.5, 1/3/18 424.8, 1/16/18 163.5, 1/31/18 62.2, 2/18 21.1, 3/18 14, 4/18 .8, 10/18 1.2, 12/18 3.2, 2/8 11.4, 3/6 22

NHMike
Posts: 2009
Joined: Fri Jul 21, 2017 3:43 am

Re: Update from Rikimaroo

Postby NHMike » Thu Oct 25, 2018 7:52 pm

Rikimaroo wrote:CRguy thanks so much for the post, that was hilarious. I figured it was clustering and thought perhaps there is a way around it but since I am only 1 week out I guess all this heartaches makes sense

NHMike thanks for the insight, i know you just got yours done about 3.5 months ago I hope things are getting better for you

I pooped a lot again today, but sometimes it came out quick and mushy into my depend, couldn’t make it to the bathroom in time. Just when I thought the clustering was done, it was still around. It is coming more liquidity again

I am going to email my doctor to see if I can take anything now so I can do something I like to go out and drive Uber/Lyft and cant with this unpredictability.


At the post-op, my surgeon told me that I could take Imodium an hour before I had to do something and that would provide hours of control. The appointment was an hour away though so I needed control getting to the hospital and for the ride back. I didn't eat anything for 24 hours prior to the appointment. The Imodium does help a lot but it takes time and effort to get the dose that works for you. I've heard of people saying that they take over ten of them a day. 1/2 a tablet a day can do a number on me and taking one for two or three days in a row can get me quite constipated.

I have Imodium to slow things down and Slippery Elm to speed things up. As always, don't take anything without checking with your surgeon first.
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

AppleTree
Posts: 267
Joined: Fri Mar 18, 2016 8:16 am

Re: Update from Rikimaroo

Postby AppleTree » Thu Oct 25, 2018 9:32 pm

Rickimaroo, I hope you are feeling better. You have received alot of good advice, so I will not repeat that, but add on to it.

After my clustering went away, I transitioned into a pretty constant state of diarrhea and/or fecal incontinence. Bananas! Protein drinks with hemp milk and bananas. Low fiber diet. No salad. No uncooked veggies. No fruits unless they are canned. Potato bread. Break my meals up so I end up having 6-7 small snacks a day. If I eat 1 big meal it seems like my system goes on overload and dumps it all. When it gets bad, I go to the BRAT diet (bananas. Rice, applesauce. Toast..
And no coffee!). All of the above is from meeting with the dietitian in the oncology unit. I would highly recommend an appointment and follow up with a dietitian. I had my rectum removed and sphincter muscles were cut to meet margins. I realize everyone is different. I also get a monthly sandostatin shot (which incidentally shows up on my PET scan...I then had the nurses switch sides and the next PET showed it had moved to my other side, so the spot was definitely from the shot!). I also take 4-6 Lomotol a day, which is down from the 8 I used to take. I keep experimenting with my diet, eating times, etc. Of course, then if I do not go for 2 days I panic and will cut back on my Lomotol. have a cup of coffee or some salad and the problem is fixed.

Going through Depends like wild fire is expensive. Like Mike suggested, you can line them with feminine panty liners or ultra thin pads. If the poo has some semblance of form and stays on the pad, it is cheaper to change the pad and keep the supporting Depends. Of course, this is not always feasible! I even carry an extra pair of socks in my supply bag because sometimes I have needed them!

At home I try to wear just underwear if I feel pretty good do my skin can get air. I have a waterproof pad under my sheets.

And lastly, there are many good creams for the bum. I use Nystatin and cover it with a clear cream (can not remember name off the top of my head, but it is Rx) as a barrier. If I am going alot my bum bleeds and I have Rx hemorrhoid cream for that, which pretty much instantly takes the pain away. Try to avoid sitting on the toilet and straining. As frustrating as it is for me, gravity works. Often times, I get off the toilet and walk around in the bathroom and sure enough, I have to go again in 4 minutes. Seems like my body does this until it is done.

Last thing...I have found the little round pads for removing eye make-up very effective for apply cream down there.

And despite sounding like an expert on how yo control all this...I am 5'8" and my weight goes between 103-106 despite my best efforts. Then again, chemo stopped only 6 months ago. Maybe I just need to give it more time.

Best of luck and keep us posted on how you are making out.
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper R lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July/Oct PETs...CLEAR!

Rikimaroo
Posts: 222
Joined: Tue Dec 20, 2016 8:48 pm

Re: Update from Rikimaroo

Postby Rikimaroo » Fri Oct 26, 2018 9:47 am

Thanks Appletree very informative. My doctor prescribed Questran. Anyone ever tried it? I am going to give it a shot, although today I have not had a bowel movement yet, woke up at 9:50AM and its 10:47AM makes me a bit nervous of constipation, but who knows maybe my body is adjusting, will let you know. I have been working from home since I am an IT Director.
RC T3N1M0
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
Blood Clot in Neck 1/2018, stop avastin, continue FolFox
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA - 12/16 26.1, 1/17 32.2, 3/17 6.6, 11/17 500.5, 12/17 638.5, 1/3/18 424.8, 1/16/18 163.5, 1/31/18 62.2, 2/18 21.1, 3/18 14, 4/18 .8, 10/18 1.2, 12/18 3.2, 2/8 11.4, 3/6 22

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susie0915
Posts: 933
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Update from Rikimaroo

Postby susie0915 » Sat Oct 27, 2018 9:24 am

I used questran during chemo for diarrhea. My ileo was reversed 5 weeks after surgery due to a bowel blockage and surgery to remove scar tissue. So I didn't have it for chemo. The questran worked well for me. I have stopped all meds as I currently use daily enemas. I takes me about 30 minutes and lasts until the next morning when I do again. You are early in recovery from reversal, so you will see many changes in your bowel habits. Before enemas, I did fiber and alternated lomotil and Imodium pretty much. Also, a low residue diet. My issue was clustering, many small bowel movements a day. I went to the bowel control clinic at the University of Michigan, and enemas were recommended by the GI. He also referred me to pelvic floor therapy and meeting a dietician. These were also both helpful. This was 15 months after my reversal. Doing daily enemas have allowed me to eat again and gain some weight back, not worry about bathroom issues all day, stop all the fiber and medications, and just allowed me to participate in life.
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 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change
11/18 CEA .6
5/19 CT NED, CEA <.5

Rikimaroo
Posts: 222
Joined: Tue Dec 20, 2016 8:48 pm

Re: Update from Rikimaroo

Postby Rikimaroo » Mon Nov 12, 2018 9:55 pm

Things have been a little better still sporadic but more manageable.

Doctor asked me to start taking a fiber product. My wife already had Nopalina Flax Seed plus Fiber. Has anyone tried that, I wanted to try before buying Metamucil.

Ingredients include psyllium husk and senna leaves and a few more things.

Let me know
RC T3N1M0
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
Blood Clot in Neck 1/2018, stop avastin, continue FolFox
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA - 12/16 26.1, 1/17 32.2, 3/17 6.6, 11/17 500.5, 12/17 638.5, 1/3/18 424.8, 1/16/18 163.5, 1/31/18 62.2, 2/18 21.1, 3/18 14, 4/18 .8, 10/18 1.2, 12/18 3.2, 2/8 11.4, 3/6 22

Tupelo honey
Posts: 28
Joined: Tue Jul 19, 2016 7:57 pm

Re: Update from Rikimaroo

Postby Tupelo honey » Tue Nov 13, 2018 8:00 am

A regime of Nopalina, Miralax and Imodium, while seemingly counterintuitive, was the combination that finally gave me a normal life back after a distressing year of clustering, constipation and some bizarre urge to constantly "push".

I take a mixture of 1-2 tablespoons of Nopalina, and 1/2 capful Miralax (mixed together in water) along with a dose of Imodium every morning. Despite the fact this combo of meds seems counterintuitive, this routine and these doses are what work for me. I work, travel, walk, - can do everything with no problem and usually have normal sized / consistency bowel movements 2 or 3 times a day.

My docs say as long as it works for me, no problem with doing this long term. Every once in a while, I skip a day or two to see if this is all still necessary, just because I don't like feeling tied to a regime and sadly it is.

But at least it's an easy solution and I can live a regular life.
Rectal Cancer Stage 3A 10-22-2015 T2N1M0
Start Chemo radiation 11/2015
LAR TME w/ total hysterectomy 3/14/2016 pT2N1M0 No ileo, straight connect
Start Xelox 4/21/16 1 week on/1 week off
Switch to Xelox 2 weeks on/1 week off 6/1/2016
Supplements: Curcumin, PSK, Celixicob, Cimetidime, Glutamine, L-Acytel Carnitine, Vit D, Vit B6, Vit B12, magnesium, calcium, aspirin, metformin, modified citrus pectin
10/2016 NED
03/2017 NED
07/2017 NED
11/2017 NED
05/2018 NED
11/2018 NED

NHMike
Posts: 2009
Joined: Fri Jul 21, 2017 3:43 am

Re: Update from Rikimaroo

Postby NHMike » Tue Nov 13, 2018 9:38 am

It sounds like you have something that works - that's pretty nice from the perspective of those starting out. I added your post to my list of LARS things to look into.
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

prs
Posts: 155
Joined: Sat Dec 12, 2015 7:09 pm
Location: Central California

Re: Update from Rikimaroo

Postby prs » Tue Nov 13, 2018 5:41 pm

Original Fiber One breakfast cereal is an easy way to get some fiber, 14gms per half a cup. I take it every morning with blueberries and coconut milk, tastes really good once you get used to it.
Peter, age 65 at dx
DX 4 cm x 4 cm very low rectal adenocarcinoma into the sphincters 01/15
Stage III T3 N1 M0 with two suspicious lymph nodes
26 sessions IMRT radiation with 1,000 mg Xeloda twice per day 03/15 to 04/15
Complete clincal response to the chemoradiation...the tumor shrank completely away 06/15 :D
No surgery...Habr-Gama watch and wait protocol instead
Xelox chemotherapy 07/15-12/15
MRI and rectal exam every three months starting 07/15
MRI and rectal exam every six months starting 07/17
NED


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