Help with bowels

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wife2jeff
Posts: 44
Joined: Thu Sep 12, 2019 11:21 pm

Help with bowels

Postby wife2jeff » Fri Sep 13, 2019 4:21 pm

My husband had his lower anterior resection July of this year, they removed 18 in of colon. Ever since he has come home he has had issues with bowel movements. As I read, most people really seem to deal with diarrhea but he is dealing with more lack of. For one, he has this constant "urge" to feel like he has to go, usually either it is a false alarm or he will go very little. This seems to be what happens, he will go multiple time very very little, then he will not have one for 3 days, this is even doing miralax and stool softener every day. After the 3 or 4th day with no bowel movement he has to do like 2-3 doses of milk of magnesia then he will just feel very rumbley in his stomach then he will have diarrhea for the next several hours. Whenever he doesn't have a bowel movement for a few days he just feels nauseated and queasy. We have tried trying to figure out how to use fiber capsules to keep him regular. What is the trick to have one or 2 normal bowel movements instead of so many small ones or none. We can't seem to find a balance. He is getting so frustrated and feels like he can't go anywhere because of this.

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Jacques
Posts: 534
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Help with bowels

Postby Jacques » Fri Sep 13, 2019 11:27 pm

I have two suggestions

  • First, read the article in the link below. It is mainly about diarrhea but it also explains very clearly what is going on in the diarrhea/constipation cycle, and what can be done about it.

    https://www.mdanderson.org/transcripts/POE-Treating-Diarrhea-Bisanz.htm
    .
  • Second, could you provide more detail about your husband's surgery, particularly where was the tumor located with respect to the sphincter and the anal verge? Where was the lower cut of the 18 inch section of removed bowel? In the upper rectum? In the mid- rectum? In the lower rectum? It would help to have this information.
Thank you.

Tupelo honey
Posts: 40
Joined: Tue Jul 19, 2016 7:57 pm

Re: Help with bowels

Postby Tupelo honey » Sat Sep 14, 2019 8:52 am

That’s an excellent article linked above. I wish I’d had access to that information when I was struggling with tenesmus and clustering the first year after surgery, since the docs weren’t familiar with the issues and thus not able to help much.

Many of us forged our own solutions over time based on what was available to us. There’s also some good discussion in this post:
viewtopic.php?f=1&t=61217&p=484559#p484559
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
11/2019 NED

wife2jeff
Posts: 44
Joined: Thu Sep 12, 2019 11:21 pm

Re: Help with bowels

Postby wife2jeff » Sat Sep 14, 2019 11:05 am

He had 18 in removed with a reconnect about 2 in from anal verge. The tumor was located between the rectum and the sigmoid colon, it was in a gray area of being either rectal or colon cancer.
Thank you for the link I will check it out.

wife2jeff
Posts: 44
Joined: Thu Sep 12, 2019 11:21 pm

Re: Help with bowels

Postby wife2jeff » Sat Sep 14, 2019 1:57 pm

I also wanted to ask if that constant "urge" to need to go ever gets better?

Tupelo honey
Posts: 40
Joined: Tue Jul 19, 2016 7:57 pm

Re: Help with bowels

Postby Tupelo honey » Sat Sep 14, 2019 4:02 pm

wife2jeff wrote:I also wanted to ask if that constant "urge" to need to go ever gets better?


That’s tenesmus, and yes, it does but slowly and prob not nearly as soon as he’d like it to! It’s a gradual improvement. The article linked above suggests there’s a medication called Bentyl that helps. Wish I’d known that then and I hope it does for your husband. Its a terrible and compelling sensation and I would take multiple Imodium and/or Tylenol w codeine to tamp it down. My surgery was in March, my chemo wrapped in Sept and I remember dealing with it to some extent thru at least Jan or maybe February.
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
11/2019 NED

zephyr
Posts: 258
Joined: Thu Aug 18, 2016 7:31 am

Re: Help with bowels

Postby zephyr » Sat Sep 14, 2019 5:49 pm

wife2jeff wrote:I also wanted to ask if that constant "urge" to need to go ever gets better?


As someone else wrote, it will get better but probably not as quickly as you hope. There doesn't seem to be a one-size-fits-all solution. Even after the clustering stops, your husband will need to adjust to a new normal.

For what it's worth (file this under: you get what you pay for and this is free), when he's constipated for more than 24 hours, you might consider using a glycerin suppository. That was a suggestion from my GI doc and it helped me. You can buy them over the counter at probably any drugstore. I've purchased them at Walgreens and CVS. One issue I had with the clustering/constipation combo was severe hemorrhoids. If that happens, and if you're lucky enough to live in a medical marijuana state, marijuana suppositories saved my sanity and did a better job healing my insides than anything else I tried over a period of two years. Like WAY better. You can easily make them at home. They're a bit pricey because of the Rick Simpson oil but worth the cost, IMO. For THE best recipe I've found, here's a video by Backdoor Medicine with directions in case you want to try them:

https://www.youtube.com/watch?v=ee9-CNLQrcU&feature=youtu.be
Nov-2009 Early stage CRC found during routine colonoscopy
2010, 2011, 2014 Follow up colonoscopies, all clear
Jun-2016 CRC found during routine follow up colonoscopy, surgery, Stage 4, KRAS, MSS, inoperable lung mets
Aug-2016-May-2018 Folfox, 5FU & Avastin, 5FU, Folfiri & Cyramza
Aug/Sep-2018 YAG laser surgeries (Germany) on both lungs, 11 nodules (9 mets) removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr/Jul-2019 Xeloda/Avastin, SBRT
Sept-2019 Stable! Continue Xeloda/Avastin

wife2jeff
Posts: 44
Joined: Thu Sep 12, 2019 11:21 pm

Re: Help with bowels

Postby wife2jeff » Sat Sep 14, 2019 6:34 pm

Thank you, my husband said it's nice to know the name of the constant "urge" to go. It is relieving to know that there is hope because right now he is feeling pretty hopeless about the whole situation. I looked up the bentyl, not sure that is for his actual issue. He seems to just not have bowel movements, he needs to force them by taking a butt load of milk of magnesia and miralax which ends up with an uncomfortable outcome. Before it gets to that point for a day he will have the very small bowel movements, several a day. It's like a cycle. We have talked to his surgeon at his follow up appointment and his actual words were, I'm surprised your not back to normal, we don't know where to get help with this, his gastrointerologist? go back to his surgeon?? we are at a loss with my husband getting so down.

zephyr
Posts: 258
Joined: Thu Aug 18, 2016 7:31 am

Re: Help with bowels

Postby zephyr » Sat Sep 14, 2019 8:22 pm

wife2jeff wrote:Thank you, my husband said it's nice to know the name of the constant "urge" to go. It is relieving to know that there is hope because right now he is feeling pretty hopeless about the whole situation. I looked up the bentyl, not sure that is for his actual issue. He seems to just not have bowel movements, he needs to force them by taking a butt load of milk of magnesia and miralax which ends up with an uncomfortable outcome. Before it gets to that point for a day he will have the very small bowel movements, several a day. It's like a cycle. We have talked to his surgeon at his follow up appointment and his actual words were, I'm surprised your not back to normal, we don't know where to get help with this, his gastrointerologist? go back to his surgeon?? we are at a loss with my husband getting so down.


I know - many of us know - how discouraging it is. Sadly, most surgeons don't seem to know much about what happens after surgery and how to fix it. At least that's been my experience based on my own situation and hearing from others. It WILL get better but it will take time. If you want to get more help, start with your gastroenterologist. But maybe try the glycerin suppositories first. I only say that because that's what my gastroenterologist suggested during periods when I was alternating through constipation land. He also said that Miralax was safe to take every day but it never did much for me.
Nov-2009 Early stage CRC found during routine colonoscopy
2010, 2011, 2014 Follow up colonoscopies, all clear
Jun-2016 CRC found during routine follow up colonoscopy, surgery, Stage 4, KRAS, MSS, inoperable lung mets
Aug-2016-May-2018 Folfox, 5FU & Avastin, 5FU, Folfiri & Cyramza
Aug/Sep-2018 YAG laser surgeries (Germany) on both lungs, 11 nodules (9 mets) removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr/Jul-2019 Xeloda/Avastin, SBRT
Sept-2019 Stable! Continue Xeloda/Avastin

wife2jeff
Posts: 44
Joined: Thu Sep 12, 2019 11:21 pm

Re: Help with bowels

Postby wife2jeff » Sat Sep 14, 2019 9:30 pm

Thank you, I'll maybe have him try a suppository. It just seems that he is going such small amounts and its no where near enough for what he is eating and it's causing him a lot of stomach upset and nausea when this happens. What about fiber capsules have you experienced with those at all?

Tupelo honey
Posts: 40
Joined: Tue Jul 19, 2016 7:57 pm

Re: Help with bowels

Postby Tupelo honey » Sat Sep 14, 2019 10:29 pm

wife2jeff wrote:Thank you, I'll maybe have him try a suppository. It just seems that he is going such small amounts and its no where near enough for what he is eating and it's causing him a lot of stomach upset and nausea when this happens. What about fiber capsules have you experienced with those at all?


I had a suppository called Anucort at the height of my discomfort. While I don’t think it helped much with the horrible tenensmus, it did help considerably with passing the small hard milk duds I was prone to before I started using fiber and miralax regularly.
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
11/2019 NED

wife2jeff
Posts: 44
Joined: Thu Sep 12, 2019 11:21 pm

Re: Help with bowels

Postby wife2jeff » Sun Sep 15, 2019 1:22 pm

Does fiber and miralax help with not going so many times a day? This clustering (is what I think it is) where he is just going very small amounts like 20 times per day has really been getting him discouraged. He wont go anywhere and feels like he just wants to give up like nothing will help.
Is there anything he can do to help with this tenesmus? I appreciate all the help

wife2jeff
Posts: 44
Joined: Thu Sep 12, 2019 11:21 pm

Re: Help with bowels

Postby wife2jeff » Sun Sep 15, 2019 1:23 pm

I should add that his stool when he is going the 20 times per day usually is not hard, he's just not relieving much at one time. That's what I"m trying to find out if fiber will help going more less often.

Gravelyguy
Posts: 245
Joined: Thu Jul 05, 2018 6:03 pm

Re: Help with bowels

Postby Gravelyguy » Sun Sep 15, 2019 2:18 pm

I have gained a fairly normal bowl habit by taking a product called BioCleanse which has magnesium in it and drinking a lot of water like 80-100 ounces.

Might be something for you husband to try!

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

wife2jeff
Posts: 44
Joined: Thu Sep 12, 2019 11:21 pm

Re: Help with bowels

Postby wife2jeff » Sun Sep 15, 2019 3:50 pm

Thank you I will look into that.


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