Help with bowels

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TinaFish
Posts: 178
Joined: Sun Jul 21, 2019 10:11 am

Re: Help with bowels

Postby TinaFish » Fri Sep 20, 2019 10:25 pm

wife2jeff wrote:Ok thanks, I don't think he would be able to finish the glass either at least in an adequate amount of time. He could but over hours, that's why capsules is the route we took. Ordered them. Hoping and praying this will help him get his bowels moving more regular without all the clustering. He had a very rough night last night. He was up several times with clustering.


Definitely ask the dr for a Bentyl prescription too! Bentyl has made a night-and-day difference with my tenesmus!!
F 45, single mother to son, 7 and daughter, 3
DX: stage 4 Rectal Cancer June 2019
Tumor Location: ? cm above anal verge
Tumor type: Adenocarcinoma
Tumor size: 5 cm
Tumor grade: ?
TNM code: ?
Stage : Stage IV-B
# of cancerous lymph nodes: ?
Mets: Numerous mets to liver, lungs
CEA: 22 in July; 11 as of August 15, 7 as of Sept 20
MSI status: MSS
KRAS/BRAF status: KRAS mutation
surgery: TBD
Ostomy surgery: TBD
Radiation therapy: TBD
Chemotherapy : CAPEOX+Avastin, 6 cycles, with CT scans after 3rd and 6th cycle.

wife2jeff
Posts: 65
Joined: Thu Sep 12, 2019 11:21 pm

Re: Help with bowels

Postby wife2jeff » Sat Sep 21, 2019 8:47 pm

Bentyl is no longer available, but there is levsin. We went to his surgeon a few days ago and he said he is not too familiar with bentyl of levsin for tenesmus, he knows of them but said he never prescribes them. He said he was willing to if he wanted. I guess i want to be sure if he tried this he is doing it for the right symptoms.
My husband does not have diarrhea, he has lack of bowel movements then will have a lot of clustering which is when he gets the painful tenesmus, I thought I read it was more if you have diarrhea is that true or for either? Also did taking it affect your digestive tract in any other way? like slowing it down?

Still trying to get him more regular, it is a struggle. We did buy the Napolina but read that a lot of people struggled with bloating so we decided to try the metamucil per how the surgeon said to take it. So far he was good during the day and had a fairly normal bowel movement in the evening, BUT next day he had went a couple of times but then a lot of clustering for about 3 hours during the night, he didn't sleep at all. So I think we need to increase fiber??? Ugh this is so frustrating I feel so bad for him

wife2jeff
Posts: 65
Joined: Thu Sep 12, 2019 11:21 pm

Re: Help with bowels

Postby wife2jeff » Tue Sep 24, 2019 6:04 pm

Hey another question on this awful tenesmus, do you have the pain even passing gas?

Rikimaroo
Posts: 297
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Location: Florida

Re: Help with bowels

Postby Rikimaroo » Thu Sep 26, 2019 6:36 pm

Sounds like he is having major clustering. It means you go drop a few and not much at all, maybe small piece leave and then go again multiple times. And then it sounds like he is constipated, but not the constipation we are use to when we have everything intact. I have my entire colon, but they took my rectum and its been up and down, good and bad, frustrating the most and I feel like the toilet has held me hostage numerous times. I have decided to get my bag back, colostomy so I can have control over my life.

Good Luck and that is an option for your husband. There is quite a few folks who went back to colostomy and never looked back. They got there life back.
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

wife2jeff
Posts: 65
Joined: Thu Sep 12, 2019 11:21 pm

Re: Help with bowels

Postby wife2jeff » Sun Sep 29, 2019 11:33 am

Yes exactly but he only seems to get it when he has to take something after not having a bm for 3 days. The pain and cramping from this tenesmus is horrible when he starts finally going and it's not hard, so I don't understand that. He is going to ask about that bentyl (dicyclomine) for it but there are some side effects that he may not be able to take it.

I was curious about the enemas for those who have used them like the water ones. So yesterday he ended up using an enema because in a couple weeks his doctor needs him to use one for a procedure he is doing, so since he hadn't gone in a few days and he didn't want to do m & m again or dulcolax because it really causes him stomach upset and cramping so he decided to do the fleet enema so he knew what to expect for the procedure. Well it took about 5 min for him to go very little then after about 30 he went a little more and then it increased but he went all day long and had a lot of stomach cramping and upset. This went on from 11 am - midnight. It started to slow down some early evening but still I thought with an enema you empty pretty quickly. Does that mean that maybe he had maybe an fecal impaction and it just really got it out?

Rikimaroo
Posts: 297
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Location: Florida

Re: Help with bowels

Postby Rikimaroo » Sun Sep 29, 2019 11:44 am

It's sounds just like what I go through. It's sounds normal. The discomfort and pain is normal. It doesn't happen all the time and then there are days your perfectly fine. I was on the toilet last night from 12-3 am, it was frustrating, but mainly me pushing to get the poop out. No diarrhea typically. Does he consider getting a colostomy?
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

wife2jeff
Posts: 65
Joined: Thu Sep 12, 2019 11:21 pm

Re: Help with bowels

Postby wife2jeff » Sun Sep 29, 2019 4:23 pm

No I don't think he would do well with that. He didn't need one after his low anterior resection. He is so ready to give up and is so frustrated it's hard to watch him and hear him. It breaks my heart to see him struggling. I think if he had to have a colostomy he would give up. I wish I knew other people who have been with their loved one through these times. It's so hard. His attitude towards it all isn't the best all the time either. thanks for sharing with me

Rikimaroo
Posts: 297
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Location: Florida

Re: Help with bowels

Postby Rikimaroo » Mon Sep 30, 2019 9:47 pm

wife2jeff wrote:No I don't think he would do well with that. He didn't need one after his low anterior resection. He is so ready to give up and is so frustrated it's hard to watch him and hear him. It breaks my heart to see him struggling. I think if he had to have a colostomy he would give up. I wish I knew other people who have been with their loved one through these times. It's so hard. His attitude towards it all isn't the best all the time either. thanks for sharing with me


Honestly I was super nervous when I went in for my LAR because I was getting an Ileostomy (bag). Once I got it within 2 weeks, I was super happy with it. It's really easy to manage once you get over the quirks and honestly there is not much. I might be downplaying it a little because I was so use to it after 2-4 weeks. I had it for 6 months and managed it perfectly. It sounds like for him to get control of his life back and relieve himself of this stress and pain is to get a colostomy bag. It doesn't smell, its easy to managed and you will not feel like your being held hostage by the toilet or pain. Please have him consider it, because it sounds like he is at his wits end.

Don't be scared of getting a bag. I am also married and my wife was ok with me having a bag and as a matter fact I called my surgeon and getting it back now. I can't live like this no more.
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

wife2jeff
Posts: 65
Joined: Thu Sep 12, 2019 11:21 pm

Re: Help with bowels

Postby wife2jeff » Tue Oct 01, 2019 11:17 am

Thanks for the information on that. I read it to him. He asked a few questions and and we looked up those on line. I don't think he is ready yet to consider it I think since he is only 2 months out from surgery he will give it more time.. I will probably ask you more questions if we ever get to that point.

Gravelyguy
Posts: 308
Joined: Thu Jul 05, 2018 6:03 pm

Re: Help with bowels

Postby Gravelyguy » Tue Oct 01, 2019 11:56 am

I didn't realize he is only a couple months out. I was significantly better at 3-4 months then again around the year mark was another bump up. I teach and last spring I had days I wasn't sure I could make it from the parking lot into the school without having to go. Those days are long gone.

I just hope his pain will ease up. I used a memory foam seat cushion which helped quite a lot. I still use it while driving as for some reason the driving position in one of cars makes me have to go without it.
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
12/19/19 clear scans CEA 1.0 still NED!
6/17/20 clear scans CEA 1.1 still NED!

wife2jeff
Posts: 65
Joined: Thu Sep 12, 2019 11:21 pm

Re: Help with bowels

Postby wife2jeff » Thu Oct 17, 2019 8:56 pm

Ok update, I know it's weird to talk about bowels so sorry. So upon reading all the advise on here my husband started with metamucil only because that's what his surgeon told him to try. We did this for a few weeks with really no success whatsoever, so we switched to Nopalina, we started slow and gradually increased and we definitely notice it making a difference, he has had at least 1-2 bm per day but they are still not like firm they are more messy not always, and the clustering seems to have gotten less so that is good.We haven't needed to use dulcolax or miralax anymore. We are up to 4 capsules of nopalinas per day, I know the bottle says 4 in the am and 4 pm, my question is would you keep increasing to that amount or do you think that it will cause more bms? The days he ends up with the clustering it hasn't been as bad as it was before with 15 plus bathroom trips but its 5-10 and it always seems to be in the evening but it really makes the tenesmus act up but he ends up taking lopramide to help slow down and stop the bms which helps. I think we are getting some where in some ways but I was wondering for those of you using nopalinas would you try for more in hopes it will be only 1 or 2 firm bms per day? He's afraid if he increases it will cause more bms but they will be the messy ones.
Sorry about another "pooping" post

Pyro
Posts: 305
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Help with bowels

Postby Pyro » Thu Oct 17, 2019 11:13 pm

Lactulose, wish I would have known about it in my teens.
Aug 2015- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!

wife2jeff
Posts: 65
Joined: Thu Sep 12, 2019 11:21 pm

Re: Help with bowels

Postby wife2jeff » Fri Oct 18, 2019 1:02 pm

Thanks, I could be incorrect but I think that is for constipation, he definitely is not constipated anymore thank goodness.

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dianetavegia
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Re: Help with bowels

Postby dianetavegia » Fri Oct 18, 2019 6:11 pm

Gastro told me to take 1 full cap of Miralax daily until I had a large BM and then lower dosage to 1/2 cap to see if that would keep me regular. Studies of long term use of Miralax shows no concerns. I've been doing it for about 2 years now and haven't had any more concerns. I put it in my first cup of coffee.
Stage III cc surgery 1/7/09. 12 tx FOLFOX
Stage IV PET = 1.5cm liver met. HR 4/11/12

11 years since dx and 7 3/4 years post liver resection.
Pronounced CURED and discharged by onc

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2

NHMike
Posts: 2425
Joined: Fri Jul 21, 2017 3:43 am

Re: Help with bowels

Postby NHMike » Fri Oct 18, 2019 6:46 pm

dianetavegia wrote:Gastro told me to take 1 full cap of Miralax daily until I had a large BM and then lower dosage to 1/2 cap to see if that would keep me regular. Studies of long term use of Miralax shows no concerns. I've been doing it for about 2 years now and haven't had any more concerns. I put it in my first cup of coffee.


I do regular Miralax too but didn't think of putting it in coffee.
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
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