CRC Veteran Check-In! LAR Syndrome question

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Rob in PA
Posts: 1995
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: CRC Veteran Check-In! LAR Syndrome question

Postby Rob in PA » Thu Sep 26, 2019 3:16 pm

I certainly remember the feeling of dealing with chemo AND the tenesmus on top of that. I won't tell you to hang in there because you already know that. All I can say is the clustering has definitely eased up from the early days, but i still get my share of it.

Hang in there! Oops, crap, I promised not to say that :shock:

Best to you and husband, and seriously....and I don't need to tell you this, keep supporting him because without my wife being my support "rock", I doubt I would be here today.

Rob
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED

Rikimaroo
Posts: 257
Joined: Tue Dec 20, 2016 8:48 pm

Re: CRC Veteran Check-In! LAR Syndrome question

Postby Rikimaroo » Thu Sep 26, 2019 6:24 pm

I have the same pain, dull intermittent pain and all around frustration and aggravating type pain. It's not painful, its more of a sensation of uncomfortable feeling of a dull pain. It's tolerable but miserable. I am going back for surgery on the 7th to remove a pelvic recurrence and I told the doctor give me back my bag. I will be getting a colostomy. I don't want to deal with the pooping anymore. Yes, some days are great and I go once, but then the days its like being held hostage by the toilet, no thanks.

I can't live like this. I know folks mentioned enema, I just don't want to deal with that either. The bag is going to be alot easier. Two Piece bag system, snap the one full of poop throw it away, put a new piece on. Change bag every 5-7 days and pooping is like normal, usually one bowel movement with a colostomy, or two.

I am looking forward to it, do hate not being able to sleep on stomach anymore, but I think sleeping in that position is the worst anyways and back sleeping is better for your body.
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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Rob in PA
Posts: 1995
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: CRC Veteran Check-In! LAR Syndrome question

Postby Rob in PA » Fri Sep 27, 2019 3:43 pm

I hear ya Rickimaroo, there are days that i'm ready to go back to the pouch but I have so much scar tissue from my 3 previous ostomies and numerous other surgeries that it would be quite risky and have potential for failure. Ugh.
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED

NHMike
Posts: 2272
Joined: Fri Jul 21, 2017 3:43 am

Re: CRC Veteran Check-In! LAR Syndrome question

Postby NHMike » Fri Sep 27, 2019 5:44 pm

Today was one of those days for me. 27 trips. But I won't need to go for another day and a half. Or two and a half if I don't eat anything until tomorrow night.

At home I have a stool in the bathroom and I can place my laptop on it and work from the bathroom if I expect to be there for a long time. I've used it mainly for Colonoscopy Preps.
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

User avatar
Rob in PA
Posts: 1995
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: CRC Veteran Check-In! LAR Syndrome question

Postby Rob in PA » Sat Sep 28, 2019 4:26 am

At home I have a stool in the bathroom and I can place my laptop on it and work from the bathroom if I expect to be there for a long time. I've used it mainly for Colonoscopy Preps.


Oh yes, been there. I refer to the bathroom as my 2nd office!

Rob
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED

Lee
Posts: 5971
Joined: Sun Apr 16, 2006 4:09 pm

Re: CRC Veteran Check-In! LAR Syndrome question

Postby Lee » Sat Sep 28, 2019 2:14 pm

NHMike wrote:I had the pain for a few months - I believe that it was severed nerve that quieted down over time. I don't have any pain today.


I too had butt pain back there for about 3-4 months. Felt like my tail bone was broken. I have no pain today and can sit on a hard surface.

Rob so sorry you are dealing with this pain. Guess for some people it can be bad. This was many years ago, one guy lived in constant pain back there all the time.

(((Rob)))

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

Rikimaroo
Posts: 257
Joined: Tue Dec 20, 2016 8:48 pm

Re: CRC Veteran Check-In! LAR Syndrome question

Postby Rikimaroo » Sat Sep 28, 2019 2:58 pm

Mike,

Your comment alone makes me even want the bag more. For you to even have 27 bowel movements at this timeframe of your journey really makes me wonder if it will get better. The most bowel movements I have now is probably 12 max one bad days. 27 just doesn't seem right, perhaps food? I know you have been on top of this, so I am at a loss at what could of caused it. eating beans?

Either way getting the bag back, should be a major relief in my life. I know Lee had her for 10+ years and she has been happy, so I am looking forward to it. I am getting a colostomy which is less maintenance then an iLeostomy. I will keep you posted.

Riki
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: 2272
Joined: Fri Jul 21, 2017 3:43 am

Re: CRC Veteran Check-In! LAR Syndrome question

Postby NHMike » Sat Sep 28, 2019 3:04 pm

Rikimaroo wrote:Mike,

Your comment alone makes me even want the bag more. For you to even have 27 bowel movements at this timeframe of your journey really makes me wonder if it will get better. The most bowel movements I have now is probably 12 max one bad days. 27 just doesn't seem right, perhaps food? I know you have been on top of this, so I am at a loss at what could of caused it. eating beans?

Either way getting the bag back, should be a major relief in my life. I know Lee had her for 10+ years and she has been happy, so I am looking forward to it. I am getting a colostomy which is less maintenance then an iLeostomy. I will keep you posted.

Riki


It could be beans. I had beans on Monday and Wednesday. But I haven't eaten for 43 hours and have not had to go to the bathroom in 24 and I won't have to go for quite some time if I want. I'm going to go back to fasting, maybe two to three days a week instead of three to four. That will better keep things under control. I am considering dropping thirty pounds as then I wouldn't need as much food for maintenance. That would be teenage weight for me.
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

Lee
Posts: 5971
Joined: Sun Apr 16, 2006 4:09 pm

Re: CRC Veteran Check-In! LAR Syndrome question

Postby Lee » Sat Sep 28, 2019 3:57 pm

Rikimaroo wrote:Mike,

Your comment alone makes me even want the bag more. For you to even have 27 bowel movements at this timeframe of your journey really makes me wonder if it will get better. The most bowel movements I have now is probably 12 max one bad days. 27 just doesn't seem right, perhaps food? I know you have been on top of this, so I am at a loss at what could of caused it. eating beans?

Either way getting the bag back, should be a major relief in my life. I know Lee had her for 10+ years and she has been happy, so I am looking forward to it. I am getting a colostomy which is less maintenance then an iLeostomy. I will keep you posted.

Riki


Getting the bag was the best decision I made. It was my decision prior to my surgery. Due to radiation most of my rectal muscles were destroyed. I was tied to the toilet for hours anytime I ate. My only solution was not to eat anything until I was home for the day. My surgeon was talking about taking muscles from some other part of my body and I would "train" them to act like rectal muscles. Goal was to get to 3 BM a day, butt I could be left with 10 or more on a daily bases, gee I was already there :shock: . Surgeon wanted my husband and I see an Ostomy nurse. That is when I /we learned what a colostomy bag was. Both my husband and I walked out of that meeting with the same decision. Called my surgeon the next day.

Yesterday I was helping a friend put a garage sale together. We had salad for lunch. Greens give me the runs. No problems. I was in control, not my bowels.

Riki, I think you are making the right decision. Have you checked out the UOAA website yet.


Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

Rikimaroo
Posts: 257
Joined: Tue Dec 20, 2016 8:48 pm

Re: CRC Veteran Check-In! LAR Syndrome question

Postby Rikimaroo » Sun Sep 29, 2019 12:26 pm

Hi Lee,

Yes I have been on it a few times. I had an ileostomy before so I am aware of how this works. The ostomy nurse told me that it will be less active then the ileostomy. She also mentioned something called a 2 piece system, which I actually heard of, but with the ileo, I would just open the bottom squeeze the stuff out and then wrap it back up. She said with the colostomy it might be a bit more difficult to squeeze out since its more formed like normal poop since its going through the entire colon and said I should try a 2 piece which also for you to just snap off the bag and throw away and put another one one. What do you use, one piece or two piece? I am comfortable with my one piece, but will have to see how it works out.

The bag that worked great for me on Ileo was Item # 5089511 - https://www.edgepark.com/ostomy/pouchin ... /p/5089511

For the colostomy do you use barrier ring?

Any advice would be helpful since you have been with it for 10 years.

Riki
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

Lee
Posts: 5971
Joined: Sun Apr 16, 2006 4:09 pm

Re: CRC Veteran Check-In! LAR Syndrome question

Postby Lee » Sun Sep 29, 2019 2:37 pm

Hi Riki,

I prefer the 2 piece system, even with the drainable bags. Works like a tupperware lid. I prefer the disposal bags, (ie separate used bag from wafer, throw into a zip lock bag, put on new bag. Ready to go). I keep drainable on hand. I used them when on chemo, if I'm prepping for a scope or if I'm sick and have a lot of liquid out put. I always bring one along if I'm traveling by plane. I keep a three days supply of disposal bags with me when ever I get on a plane, along with a drainable bag just in case my luggage does not make it. I have a special blue zip lock bag that has everything I need in case I need to change a wafer on the plane.

The nurse is correct, it can be a bit of a challenge to drain out formed output with a colostomy vs an ileostomy. It can be messy and it take longer than just take off old disposable bag and put on new one.

When I'm out and about, I keep 3 disposable bag near me, either in my purse or in the car. I keep a disposal new bag inside a sandwich zip lock bag, tucked inside a small brown paper bag. If I'm out and about and need to change bag, I take new bag out of zip lock, take off old bag, put in zip lock, put new bag on me and then put zip lock into brown paper bag and toss into near by trash can. No one has to see my used bag.

I used Hollister for many years, butt last year they stopped making them. Our Miss Molly, Karen, told me about Coloplast SenSura Mio, so at the current moment, I alternate between the two different systems.

Yes I use Hollister adapt Barrier Rings. Right now I prefer #7805. They are thicker, butt I also have #8805 which are Adapt CeraRing. They are thinner and I think I will like them more during the winter month. I live in Phoenix, during the summer months when it is super hot around here, I change my wafer 2-3 times a week. During the winter months, I can go week before I need to change my wafer, I want to try using the thinner barrier rings then.

After your surgery when you know how big your stoma will be, call up the various manufactures and ask for samples. That is how I found my Hollister that I LOVED for so many years. For me in the beginning it was a learning curve, made a few mistakes, had a few accident, and I learned. I don't have accidents anymore unless I did something wrong.

Best advice, stay ahead of any skin issues under your wafer. Over time, the skin under that wafer guess will become fragile. If you do develop a skin problem, seek out advice with an ostomy nurse of go to that UOAA website. I was a few months out from my surgery when I started itching under my wafer. Surgeon referred me to an ostomy nurse. Recommended an oil based product. Onc told me that Jock Itch, Athlete's Foot, and yeast infection are all caused by the same fungus. When I got to see the Ostomy nurse, she gave me a bottle of Coloplast "Antifungal Powder with Miconazole Nitrate 2%". It is powder based vs oil based and clear up the fungus issue.

I don't go cheap on the products that I use under my wafer. There is a store front medical devise store that I used every so often. When they recommend something I tend to listen. When you are changing your wafer, used ConvaTec (ref # 413500) Sensi Care Sting Free Adhesive Remover. It's alcohol free. To clean up any reside left behind by the wafer. I'm very gentle with the skin under the wafer. Just before putting on a new wafer, I spray on Smith & Nephew (ref # 66800709) No Sting Skin Prep.

I had to see an ostomy nurse last fall, she told me my skin was perfect under my wafer, what ever I was doing, keep it up. Always glad to hear.

Like I said earlier, there might be a learning curve in the beginning. Be patience with yourself, follow your instincts, and learn from your mistakes.

You can do this.

Lee

P.S. I go by Nickolas under the UOAA. One of my cats who passed away last yrs after 18 yrs. He had a paw in raising our son.
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

Rikimaroo
Posts: 257
Joined: Tue Dec 20, 2016 8:48 pm

Re: CRC Veteran Check-In! LAR Syndrome question

Postby Rikimaroo » Sun Sep 29, 2019 7:31 pm

For my ileo I mainly used 8805 - Hollister Adapt CeraRing™ Barrier Ring, Standard, 4.5mm Thick, 2" OD and I use 507760 - Hollister Universal Remover Wipe For Adhesive and Barrier and they worked great. I have the powder that you sprinkle after cleaning the adhesive. You sprinkle it first then you apply the barrier ring, then the pouch. I was practically a pro with the ileostomy, so I am sure I will kick butt with the 2 piece for colostomy. I guess carrying extra snap on bags going forward will be what I do since I won't do drainable.

The coloplast is it this one 6211472 - Coloplast SenSura® Mio Click Two-Piece Drainable Pouch, Wide Outlet, 50mm Coupling, Maxi, Integrated Closure, Neutral Gray with Clear Inspection Window. Box says it comes with 10 pieces. Does that mean is comes with bag that sticks to stomach and snap on bag that snaps on the stomach bag? LOL...still learning about two 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

NHMike
Posts: 2272
Joined: Fri Jul 21, 2017 3:43 am

Re: CRC Veteran Check-In! LAR Syndrome question

Postby NHMike » Sun Sep 29, 2019 7:47 pm

Rikimaroo wrote:For my ileo I mainly used 8805 - Hollister Adapt CeraRing™ Barrier Ring, Standard, 4.5mm Thick, 2" OD and I use 507760 - Hollister Universal Remover Wipe For Adhesive and Barrier and they worked great. I have the powder that you sprinkle after cleaning the adhesive. You sprinkle it first then you apply the barrier ring, then the pouch. I was practically a pro with the ileostomy, so I am sure I will kick butt with the 2 piece for colostomy. I guess carrying extra snap on bags going forward will be what I do since I won't do drainable.


That brings back memories.

I used Cavilon Spray instead of the Wipes because I found it faster and easier to do. The downside is that insurance doesn't cover the spray but they gave me tons of wipes. I used the powder too.
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

Lee
Posts: 5971
Joined: Sun Apr 16, 2006 4:09 pm

Re: CRC Veteran Check-In! LAR Syndrome question

Postby Lee » Mon Sep 30, 2019 9:45 am

Rikimaroo wrote:The coloplast is it this one 6211472 - Coloplast SenSura® Mio Click Two-Piece Drainable Pouch, Wide Outlet, 50mm Coupling, Maxi, Integrated Closure, Neutral Gray with Clear Inspection Window. Box says it comes with 10 pieces. Does that mean is comes with bag that sticks to stomach and snap on bag that snaps on the stomach bag? LOL...still learning about two piece.


The Coloplast that I use are wafer SenSura Mio (ref # 10512), 45mm. 5 per box. Bag is SenSura Mio (ref # 11413) Click Ostomy Pouch. 2 piece closed, with inspection window opaque, circle filter. 30 pouches in a box.

I cut my wafers to fix my over my stoma, about 35mm. I put the barrier ring on the wafer, then apply to my skin. I than apply the pouch, think tupperware, over the ring on wafer. These bags (pouch) have also additional ring that you snap together for added security around the tupperware ring. That bag is not coming off unless you want it to. With the new Hollister samples that were sent to me, the ring was flemsy and yes, I had to make sure on more than one occasion that the 2 pieces were totally secure together. Yes they did separate on a few occasions. This was not a problem I had with my old Hollister products. They were stiffer and taller. Guess some people like the new Hollister, I don't.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

Rikimaroo
Posts: 257
Joined: Tue Dec 20, 2016 8:48 pm

Re: CRC Veteran Check-In! LAR Syndrome question

Postby Rikimaroo » Wed Oct 02, 2019 9:39 am

Cool Lee. Thanks so much for the information. How often did you change the bag itself?
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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