Colostomy and Gas Pains

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Rikimaroo
Posts: 347
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Colostomy and Gas Pains

Postby Rikimaroo » Tue Dec 01, 2020 9:15 pm

For those with Colostomies, not iloeostomies, do you get recurrent once a week gas pains that are painful and just discomforting? I think what happens to me if I don't go for the whole day, the same day i get whirring noises in my stomach and I know its gas, because I feel like it farts or releases inside my body but stays in there and don't come out of the ostomy. Eventually it comes out and if I lie on my side it comes out, but not enough to release the pains. I want to know if there is a regular routine I should do it keep them gas pains away. I have avoided things that cause gas, but unfortunately can't avoid everything, but sometimes I don't know the cause.

I take tea oregano at night recently started, to see if it will help. I think its help a little as the pains are not incredible like they were. It just puts me in groggy mood.

Any recommendations?

Thanks
Riki
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
LAR/Liver Resect 4/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
CEA 40 right now, but was 57, so folfiri to beat it back down.
Lots of chemo for the past 4 years.

prayingforccr
Posts: 139
Joined: Sun Jun 28, 2020 4:44 pm

Re: Colostomy and Gas Pains

Postby prayingforccr » Fri Dec 04, 2020 3:03 am

Rikimaroo wrote:For those with Colostomies, not iloeostomies, do you get recurrent once a week gas pains that are painful and just discomforting? I think what happens to me if I don't go for the whole day, the same day i get whirring noises in my stomach and I know its gas, because I feel like it farts or releases inside my body but stays in there and don't come out of the ostomy. Eventually it comes out and if I lie on my side it comes out, but not enough to release the pains. I want to know if there is a regular routine I should do it keep them gas pains away. I have avoided things that cause gas, but unfortunately can't avoid everything, but sometimes I don't know the cause.

I take tea oregano at night recently started, to see if it will help. I think its help a little as the pains are not incredible like they were. It just puts me in groggy mood.

Any recommendations?

Thanks
Riki


This helps to solidify my position to end my life via an exit bag rather than have a surgery that leaves me with a colostomy.
Nov 2019: colonoscopy
Dec 2019: diagnosed with stage 3 rectal cancer 6+cm tumor
Jan-mar 2020: 20 sessions of radiation, mon-fri capecetibine, mon-fri clinical trial drug m3814
Apr 2020: tumor/scar 3.7cm
July 2020: began 8 treatmentsFOLFOX
August 2020: ct scan reveals scarbed reduced to 2.7cm CEA is 1.5
Nov 2020: Primary tumor had complete response. Possible tumor deposits on latest mri. Biopsy negative for cancer.
May 2021: Multiple lung nodules (3-6mm) on ct scan

boxhill
Posts: 730
Joined: Fri Apr 06, 2018 11:40 am

Re: Colostomy and Gas Pains

Postby boxhill » Fri Dec 04, 2020 9:20 am

prayingforccr, at this point I think that everyone knows how you feel, and it is less than helpful to tell someone bravely soldiering on that you would RATHER BE DEAD than be them! Could I kindly request that you put a sock in it?

Rickimaroo, I'm sorry that I have no experience to share with you. Would a medication like GasX possibly help?
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Stop Key
All MRIs NED

utahgal7
Posts: 51
Joined: Fri Sep 11, 2020 12:04 pm

Re: Colostomy and Gas Pains

Postby utahgal7 » Fri Dec 04, 2020 9:43 am

Rikimaroo - Oh, gosh...I know that gas is uncomfortable. Are you able to walk a little bit? Sometimes that can help. I agree with boxhill about GasX.

prayingforccr - Have you considered counseling? I am concerned about your mindset.
02/20 Rectal Cancer dx - 2 cm mass; located 9 cm from AV
03/20 CEA 2.7; 0.9; 1.4; 0.9; 0.9
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy
04/20 ypT3N1bM0; MSS; moderately differentiated adenocarcinoma
05/20 CAPEOX
08/20 Ileostomy reversal
09/20 CT scan; suspicious areas in liver; 10/20 MRI liver; dx hemangioma
12/20 CT scan; lung nodules (watch and wait)
03/21 CT scan; stable lung nodules (2)

Rikimaroo
Posts: 347
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: Colostomy and Gas Pains

Postby Rikimaroo » Fri Dec 04, 2020 1:13 pm

Honestly its not that bad. The colostomy has been amazing. I don't mind it at all, and the gas pains are getting better, just got to figure the new me better.

Praying not sure what's wrong, but I am remembering maybe your the fella that doesn't want a perm bag and rather die, its not bad at all. I am way different then you, I had 4 surgeries, some of them could contribute, but mostly my life is great. I wear a stealth belt to hide the bag, but honestly I don't always wear it. I have had the bag for 1.2 years now, and it is really better then pooping through butt have ileo reversal. You need to give it a chance and stop being a little beezatch (thats bitch in slang). We are all going through cancer and tough times, some of us still fighting for our lives, colostomy is the least of our worries.

I have never tried GasX, because I understand that is more for stomach gas, this gas seems to be in the intestines, lower tract, so it won't work, per phamacist. I have been drinking teas every night, and taking papaya digestive pills. I think a good probiotic would probably help too. and YES, walking and exercising would too, I am lazy....I need to start bicycle riding.

Stay up buddy, be strong and stop whining about colostomies. It's not as bad as you think.

Riki
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
LAR/Liver Resect 4/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
CEA 40 right now, but was 57, so folfiri to beat it back down.
Lots of chemo for the past 4 years.

User avatar
beach sunrise
Posts: 500
Joined: Thu Mar 05, 2020 7:14 pm

Re: Colostomy and Gas Pains

Postby beach sunrise » Fri Dec 04, 2020 1:36 pm

Hi Riki, I have in my notes from MissMolly and Vilca that beano is good for gas troubles. Also one of them talked about gently massaging to get it moving out.
As for probiotic, my surgeon recommended VSL #3, 112.5 billion bacteria, the refrigerated type. It really helps. He recommended once daily.
I hope you find what works and post here.
We are in this together!
Merry Christmas to you and family!
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

Rikimaroo
Posts: 347
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: Colostomy and Gas Pains

Postby Rikimaroo » Fri Dec 04, 2020 3:43 pm

Beach,

That is such valuable information and its funny you mentioned beano, cause my Onc did too. Beach, i been thinking about you, how are you doing overall? Still on the Xeloda? I am on break right now, start up again next week Wednesday. My biggest side effect has been hand and foot syndrome, like burning pain in hands and feet, followed by skin discoloring and now my body healing peeling LOL...

Merry Christmas to you and your family as well!!

Keep on trucking!

Riki
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
LAR/Liver Resect 4/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
CEA 40 right now, but was 57, so folfiri to beat it back down.
Lots of chemo for the past 4 years.

Gravelyguy
Posts: 363
Joined: Thu Jul 05, 2018 6:03 pm

Re: Colostomy and Gas Pains

Postby Gravelyguy » Fri Dec 04, 2020 3:56 pm

Hi Riki,

Not much to add but I am with the exercise probiotic crowd. Something isn’t digesting right and may need some help.

Glad it is getting a little better with the tea!

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 CEA .9 still NED!
6/11/19 CEA 1.0
12/19/19 CEA 1.0 still NED!
6/17/20 CEA 1.1 still NED!
12/15/20 CEA 1.1still NED!

User avatar
beach sunrise
Posts: 500
Joined: Thu Mar 05, 2020 7:14 pm

Re: Colostomy and Gas Pains

Postby beach sunrise » Fri Dec 04, 2020 6:24 pm

Hey Riki, I am really good overall. Just on the hunt for where this cancer is setting up camp. CEA had a slight increase the other day so hoping CT scan next Friday will reveal something. If not, then I will just continue on with xeloda, celebrex and supplements til next scan.
I don't have the HFS but hands are darker and lines on palms are darker. Maybe you should see a dermatologist for some really good moisturizing lotion for the peeling. Another forum member sees a derm for HFS. I've been using 100% vit E oil mixed with burts bees lotion for the carrier to better absorb the vit E. Don't know if that's why I don't have HFS but going to keep doing that.
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

Lee
Posts: 6205
Joined: Sun Apr 16, 2006 4:09 pm

Re: Colostomy and Gas Pains

Postby Lee » Fri Dec 04, 2020 7:03 pm

boxhill wrote:prayingforccr, at this point I think that everyone knows how you feel, and it is less than helpful to tell someone bravely soldiering on that you would RATHER BE DEAD than be them! Could I kindly request that you put a sock in it?

Rickimaroo, I'm sorry that I have no experience to share with you. Would a medication like GasX possibly help?



THANK YOU boxhill!, Could not have said it better!!

Riki no pain, sometimes gas, butt not pain. Could there be a bit of obstruction going on? Are you still on any kind of chemo? I too would recommend walking, nothing serious, light walk once around the block. Or inside your house depending on the weather. Can you see an ostomy nurse?

Also keep a food journal, maybe some food is causing this.

This was many years ago. I was about 2 weeks out from my 2004 surgery, my 11 yr old daughter had a friend sleeping over. I SUDDENLY passed the biggest fart/gas on the planet out my stoma :shock: . Daughter looks at me mortified, I'm sure see wanted to crawl into some hole. Her friend looked at me, what was that :shock: .

I reminded daughter's friend, I had surgery 2 weeks ago. guess passing gas is a good thing, part of my recovery. I followed up, to be honest, if my surgeon had heard that, she would have been proud of that one. I reminded her it could happen again. Daughter's friend was like that's okay, I remember my dad passing a lot of gas following his shoulder surgery. Doesn't bother me.

I looked at my daughter, order had been restored in her universe.

Have you checked out UOAA? United Ostomy Association of America. Here is there web site

https://www.uoaa.org/forum/viewforum.php?f=2

If not, you might want to check it out.

Good luck, 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 - 16 years and counting!

Koreysue
Posts: 207
Joined: Mon Apr 30, 2018 2:36 pm

Re: Colostomy and Gas Pains

Postby Koreysue » Fri Dec 04, 2020 7:29 pm

prayingforccr wrote:
Rikimaroo wrote:For those with Colostomies, not iloeostomies, do you get recurrent once a week gas pains that are painful and just discomforting? I think what happens to me if I don't go for the whole day, the same day i get whirring noises in my stomach and I know its gas, because I feel like it farts or releases inside my body but stays in there and don't come out of the ostomy. Eventually it comes out and if I lie on my side it comes out, but not enough to release the pains. I want to know if there is a regular routine I should do it keep them gas pains away. I have avoided things that cause gas, but unfortunately can't avoid everything, but sometimes I don't know the cause.

I take tea oregano at night recently started, to see if it will help. I think its help a little as the pains are not incredible like they were. It just puts me in groggy mood.

Any recommendations?

Thanks
Riki


This helps to solidify my position to end my life via an exit bag rather than have a surgery that leaves me with a colostomy.


prayingforcrr, your comments are not kind. I am sure they are stemming from stress and anxiety about your situation, along with fear of the unknown. But comments like that are not helpful here. You have your own decision to make in that regard, but please realize how damaging your words can be to those with ostomies or those who may be getting one soon because they want to live/ have a better quality of life.
I’m sure you just aren't realizing the effects of your comments. Thinking of you, though as you navigate this.
ksue
Diagnosed: June 2017 stage 3 colon cancer
Sigmoid colon, 2 nodes affected
CEA at diagnosis: 6.1
Sigmoid Colectomy and folfox (chemo complete January 31, 2018)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/2018 clean
PET scan 8/20/18 NED
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT NED 6/18/2019 / CEA : 3.4
CEA 10/21/19: 3.2
CEA 3/9/20: 3.8
CT NED /CEA 6/17/20: 3.8
CEA 11/4/20 4.6 <——— whyyyy? (will retest in a few weeks)
CT NED 12/1/20 CEA: 3.5 (happy to see a lower number)
CEA 5/17/21 4.2

Rikimaroo
Posts: 347
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: Colostomy and Gas Pains

Postby Rikimaroo » Fri Dec 04, 2020 8:01 pm

Lee wrote:
boxhill wrote:prayingforccr, at this point I think that everyone knows how you feel, and it is less than helpful to tell someone bravely soldiering on that you would RATHER BE DEAD than be them! Could I kindly request that you put a sock in it?

Rickimaroo, I'm sorry that I have no experience to share with you. Would a medication like GasX possibly help?



THANK YOU boxhill!, Could not have said it better!!

Riki no pain, sometimes gas, butt not pain. Could there be a bit of obstruction going on? Are you still on any kind of chemo? I too would recommend walking, nothing serious, light walk once around the block. Or inside your house depending on the weather. Can you see an ostomy nurse?

Also keep a food journal, maybe some food is causing this.

This was many years ago. I was about 2 weeks out from my 2004 surgery, my 11 yr old daughter had a friend sleeping over. I SUDDENLY passed the biggest fart/gas on the planet out my stoma :shock: . Daughter looks at me mortified, I'm sure see wanted to crawl into some hole. Her friend looked at me, what was that :shock: .

I reminded daughter's friend, I had surgery 2 weeks ago. guess passing gas is a good thing, part of my recovery. I followed up, to be honest, if my surgeon had heard that, she would have been proud of that one. I reminded her it could happen again. Daughter's friend was like that's okay, I remember my dad passing a lot of gas following his shoulder surgery. Doesn't bother me.

I looked at my daughter, order had been restored in her universe.

Have you checked out UOAA? United Ostomy Association of America. Here is there web site

https://www.uoaa.org/forum/viewforum.php?f=2

If not, you might want to check it out.

Good luck, Lee


I wouldn't doubt that there is possible obstruction for the pain to be there, i am not running to doc for obstructions, i have enough of the doctors to be honest LOL...I feel like a human guinea pig. The gas usually follows if I don't poo for a day. It's been better, I am going to look into beano. Believe me I love when my ostomy farts, it feels like relief that gas is passing and I won't worry about stuck gas. I have made massive farts too and my daughters look and me and like Daddy, same old Daddy LOL, only now I can't control it. haha

I have been on UOAA and hard to find gas related pain with ostomy, so I bet its obstruction and the pain of it going through my intestines. I just have to figure out the right remedy to relieve it before it gets to that, like the tea drinking, lots of water etc...I really appreciate everyone's feed back.

I worry about Prayingforccr, because life doesn't have to end because of an ostomy. I remember when I was first told about getting an ostomy because of surgery and it was so taboo to me, I was very scared and didn't do surgery, now I think I am in a worse position because of that thought process, i might of been done with all of this if I just listened to my doctors. Anyways, ileo or colo ostomy have been a real breeze to be honest. Once you get the swing of things, its not bad at all and very easily concealable.

I also agree food is the major factor in this. I now know I can't eat onions sadly, I love onions, but your typical gassy foods, cabbage, broccoli, onions, beans etc...I have to avoid. Carbonated beverages avoid, I don't usually drink it anyways, but once in a while I indulge and no gas pain sometimes, it really depends, but onions I notice is a trigger.

Thanks for all the advice. We are family here!!

Best
Riki
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
LAR/Liver Resect 4/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
CEA 40 right now, but was 57, so folfiri to beat it back down.
Lots of chemo for the past 4 years.

FightCRC
Posts: 55
Joined: Fri May 25, 2018 10:39 pm

Re: Colostomy and Gas Pains

Postby FightCRC » Sun Dec 06, 2020 10:26 pm

prayingforccr wrote:This helps to solidify my position to end my life via an exit bag rather than have a surgery that leaves me with a colostomy.


Yes. So rather than have a surgery that will leave you with a colostomy, you are currently incontinent. And to evacuate completely, you need to either lie in a bathtub or on your couch and manually extract waste from your rectum with your fingers.

Worst of all, rather than have a surgery that leaves you with a colostomy, you may have progressed from Stage III to Stage IV.

Your choices/priorities are your own, but I'm fairly certain everyone else here would trade where you're at for a bag.

I certainly don't wish Stage IV on anyone, but if that's where you are, you really only have yourself to blame.

prayingforccr
Posts: 139
Joined: Sun Jun 28, 2020 4:44 pm

Re: Colostomy and Gas Pains

Postby prayingforccr » Sun Dec 06, 2020 11:50 pm

FightCRC wrote:
prayingforccr wrote:This helps to solidify my position to end my life via an exit bag rather than have a surgery that leaves me with a colostomy.


Yes. So rather than have a surgery that will leave you with a colostomy, you are currently incontinent. And to evacuate completely, you need to either lie in a bathtub or on your couch and manually extract waste from your rectum with your fingers.

Worst of all, rather than have a surgery that leaves you with a colostomy, you may have progressed from Stage III to Stage IV.

Your choices/priorities are your own, but I'm fairly certain everyone else here would trade where you're at for a bag.

I certainly don't wish Stage IV on anyone, but if that's where you are, you really only have yourself to blame.


Hate to fisappoint you, but Ive had several biopsies, ct scans, and mri the paat month and all are currently negative for cancer.

I am beginning hbot tomorrow (2 hrs a day/5 days a week/3 months)which will hopefully help heal my treatment related issues.

I will have fresh scans and scopes in three months.

I decided long ago that i may die WITH cancer, but I won’t die FROM cancer having cared for my mother the last ten years of her life who suffered from bone cancer.

Same goes for colostomy. I’d rather huff a bag of nitrogen and ho to sleep than deal with a neutered life of suffering.

These are my decisions anx opinions. Every bit as considered and valid as yours.
Last edited by prayingforccr on Sun Dec 06, 2020 11:54 pm, edited 1 time in total.
Nov 2019: colonoscopy
Dec 2019: diagnosed with stage 3 rectal cancer 6+cm tumor
Jan-mar 2020: 20 sessions of radiation, mon-fri capecetibine, mon-fri clinical trial drug m3814
Apr 2020: tumor/scar 3.7cm
July 2020: began 8 treatmentsFOLFOX
August 2020: ct scan reveals scarbed reduced to 2.7cm CEA is 1.5
Nov 2020: Primary tumor had complete response. Possible tumor deposits on latest mri. Biopsy negative for cancer.
May 2021: Multiple lung nodules (3-6mm) on ct scan

prayingforccr
Posts: 139
Joined: Sun Jun 28, 2020 4:44 pm

Re: Colostomy and Gas Pains

Postby prayingforccr » Sun Dec 06, 2020 11:53 pm

Sorry for dupe
Nov 2019: colonoscopy
Dec 2019: diagnosed with stage 3 rectal cancer 6+cm tumor
Jan-mar 2020: 20 sessions of radiation, mon-fri capecetibine, mon-fri clinical trial drug m3814
Apr 2020: tumor/scar 3.7cm
July 2020: began 8 treatmentsFOLFOX
August 2020: ct scan reveals scarbed reduced to 2.7cm CEA is 1.5
Nov 2020: Primary tumor had complete response. Possible tumor deposits on latest mri. Biopsy negative for cancer.
May 2021: Multiple lung nodules (3-6mm) on ct scan


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