Help with bowels

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Amarie123
Posts: 47
Joined: Wed Nov 14, 2018 6:46 am

Re: Help with bowels

Postby Amarie123 » Sun Sep 15, 2019 5:19 pm

I had my sigmoid colon removed last November and understand this feeling completely. I remember how frustrating it was. Initially I took miralax and colace but found they didn’t help much. I ended up using milk of magnesia on a regular basis for a few months which helped but it didn’t help me regulate my bowels. My doctor suggested I stop and add a little more fiber to my diet in the form of Citrucel, which I didnin small amounts daily. I also drank lots of water daily and walked regularly if possible. It took a while to find the right balance as I found that too much fiber left me feeling very, very gassy and needing to use the bathroom on the hour. With that I stopped the Citrucel after about 7 months and eventually increased fruits and vegetables and other slightly higher fiber foods into my diet. It’s been about 10 months since my surgery and I feel relatively “normal” now, although I still can’t eat as much fiber as I used to. The severe constipation and constant urge to go, however, happens much less often.

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

Re: Help with bowels

Postby wife2jeff » Sun Sep 15, 2019 6:05 pm

Thank you that is exactly how we feel with the m of mag it just gets everything out and it's back to the same cycle. We want to find the right amount of fiber, seems impossible at this point because my husband has had a hard time eating and drinking due to feeling nauseated a lot so it's hard to get him to do it. Supplements may be better for the time being. I appreciate your response.
I was wondering if there is any other spouse on here that is going through this with their spouse?

NHMike
Posts: 2422
Joined: Fri Jul 21, 2017 3:43 am

Re: Help with bowels

Postby NHMike » Sun Sep 15, 2019 6:19 pm

wife2jeff wrote: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


I use Nopalina and Slippery Elm and that helps to bunch things but it can be two hours in the bathroom. Other times it's just clustering. I am not that good about always taking those. I suspect that things would be better if I did and if I added Miralax daily. I usually take one to two doses of Miralax if I want a partial or full cleanout over the next 24 hours.

One thing that definitely works is fasting for 48 hours. But it's not pleasant to do.

I've logged 14 trips today, 2 yesterday, 22 on Friday. I am 13 months out from reversal. I generally do not have constipation.

I do go to the office daily and wear CVS Adult Diapers and have a Cancer Kit which contains two diapers, a brick of Kirkland wipes, six water bottles for cleaning, Always or Equate #4 and #5 pads, Hypafix tape pieces, and small plastic disposal bags. This is definitely overkill for any cleanup problem but it gives me confidence that I'll be able to handle any situation. I have taken it on plane flights and trips. I have another bag which holds four bottles, a few pads, and bags and it's good for a quick trip to the bathroom. It may not be for everyone but it helps to maintain my sanity and the ability to go out of the house.

I believe that nutritional training would be helpful but it's time-consuming and I don't have time to do it nor, currently, directions. I think that nutritional counseling to find out which foods do what would be a great exercise and I've seen people do it with good results. It's just a lot of effort trying foods and seeing their effects in the absence of other foods.

I know the feeling that there's a lot there, you go to the toilet, and there's a tiny bit. You leave and it signals again and then over and over. There's nothing better than a cleanout where you sit for a while and everything or a good chunk of it comes out. I've yet to find the magic formula. If I can get everything out in two hours or less in the morning - I consider it a major victory - as I will have peace for at least 36 hours.
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

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

Re: Help with bowels

Postby wife2jeff » Sun Sep 15, 2019 8:25 pm

I feel you are where my husband is at. We are the same that we have no guidance from a doctor at all about how much fiber ect. We still have 2 1/2 weeks before we see his gastro. I'm really hoping he can help. This constant "urge" (tenesme) has been really bothering him. He seems to have an almost constant pain there but gets that urge when he feels like he needs to go and sometimes very little comes out or false alarm. He is getting so frustrated and I can't say I blame him but I feel alone as a wife, I feel helpless, I never know what to say when he just gets mad about all of this.I appreciate everyone's input thought.

Should we contact his surgeon about any of this or just the gastro?

Gravelyguy
Posts: 300
Joined: Thu Jul 05, 2018 6:03 pm

Re: Help with bowels

Postby Gravelyguy » Sun Sep 15, 2019 9:41 pm

It is strange how our bodies react to this surgery so differently. I think there is a lot of trial and error as we go. I take three BioCleanse at bedtime and usually have a good bm 6-7 hours later. As long as I drink enough water and don’t go too crazy eating wise (little dairy other than cheese and little sugar), I usually go just that once or sometimes I may have to go again in the evening but that is about it.

If I forget to drink enough or I eat too many sweets, I have clustering issues.

The key is to get something that will flush you out but in a controlled way. Like I wrote earlier I think that this may vary from person to person.

What I do appreciate is that through this forum, I know I am not alone dealing with this and that really helps!

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
12/19/19 clear scans CEA 1.0 still NED!

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

Re: Help with bowels

Postby wife2jeff » Sun Sep 15, 2019 11:33 pm

Thank you, It is nice to know that there is advise here for sure. How did everyone that has found their thing to help them with their bowels, did your doctor guide you?
With the biocleanse does this produce soft to diarrhea or a more normal stool?

Gravelyguy
Posts: 300
Joined: Thu Jul 05, 2018 6:03 pm

Re: Help with bowels

Postby Gravelyguy » Mon Sep 16, 2019 5:58 am

wife2jeff wrote:Thank you, It is nice to know that there is advise here for sure. How did everyone that has found their thing to help them with their bowels, did your doctor guide you?
With the biocleanse does this produce soft to diarrhea or a more normal stool?


For me, BioCleanse seems to get everything moving together. No diarrhea, it is more like all those little pieces that come out when I am clustering come out all at one time. So I guess closer to more normal but what is normal anymore has changed quite a bit!

If your husband does want to try the BioCleanse find someone who sells Plexus products, it is much cheaper from them than on Amazon. I also use their probiotic which may be helping me too.

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
12/19/19 clear scans CEA 1.0 still NED!

NHMike
Posts: 2422
Joined: Fri Jul 21, 2017 3:43 am

Re: Help with bowels

Postby NHMike » Mon Sep 16, 2019 6:48 am

Two people posted that they use a combination of Miralax, Nopalina and Imodium. Imodium slows things down while the other two speed things up. I can't take Imodium because I also have a small bowel obstruction. The percentage of people that get the GI problems is small as is the percentage that get SBOs. So the odds of getting both are very small but I won the lottery.

I'm going to take my stuff now so I don't forget today.

My surgeon and oncologist have pushed fiber and they are interested to know what I do and what the results are. The surgeon has offered a permanent colostomy to solve the issues but that's a last resort for me.

Other people don't experience what you're going through so they don't know. The best that they can do is read the research and make suggestions. It is an emerging area of research as more and more people wind up this way. So there is hope for better answers.
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

Gravelyguy
Posts: 300
Joined: Thu Jul 05, 2018 6:03 pm

Re: Help with bowels

Postby Gravelyguy » Mon Sep 16, 2019 7:02 am

NHMike wrote:Other people don't experience what you're going through so they don't know. The best that they can do is read the research and make suggestions. It is an emerging area of research as more and more people wind up this way. So there is hope for better answers.



Mike, it is interesting that you posted this. Just last week I got a survey from a research group at Mayo. They are surveying people who have had LAR surgery to help prepare those in the future for what they can expect. It was a pretty generic survey and based on the questions asked I don’t know how much help it would be so I asked to meet with someone on the research team during my next round of scans in December.

I am encouraged that they are at least starting to try to look at quality of life but like I wrote I am not sure they are even asking the right questions.

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
12/19/19 clear scans CEA 1.0 still NED!

NHMike
Posts: 2422
Joined: Fri Jul 21, 2017 3:43 am

Re: Help with bowels

Postby NHMike » Mon Sep 16, 2019 8:18 am

Gravelyguy wrote:
NHMike wrote:Other people don't experience what you're going through so they don't know. The best that they can do is read the research and make suggestions. It is an emerging area of research as more and more people wind up this way. So there is hope for better answers.



Mike, it is interesting that you posted this. Just last week I got a survey from a research group at Mayo. They are surveying people who have had LAR surgery to help prepare those in the future for what they can expect. It was a pretty generic survey and based on the questions asked I don’t know how much help it would be so I asked to meet with someone on the research team during my next round of scans in December.

I am encouraged that they are at least starting to try to look at quality of life but like I wrote I am not sure they are even asking the right questions.

People that don’t have the problem are going to look at things a lot differently than people who do have it.

That kind of ramp up learning curve is normal for a wide variety of things.

Dave
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

Tupelo honey
Posts: 42
Joined: Tue Jul 19, 2016 7:57 pm

Re: Help with bowels

Postby Tupelo honey » Mon Sep 16, 2019 11:54 am

NHMike wrote:Two people posted that they use a combination of Miralax, Nopalina and Imodium. Imodium slows things down while the other two speed things up. I can't take Imodium because I also have a small bowel obstruction. The percentage of people that get the GI problems is small as is the percentage that get SBOs. So the odds of getting both are very small but I won the lottery.

I'm going to take my stuff now so I don't forget today.

My surgeon and oncologist have pushed fiber and they are interested to know what I do and what the results are. The surgeon has offered a permanent colostomy to solve the issues but that's a last resort for me.

Other people don't experience what you're going through so they don't know. The best that they can do is read the research and make suggestions. It is an emerging area of research as more and more people wind up this way. So there is hope for better answers.

I'm one of the ones who use this combination, and my take on it is the Miralax keeps things soft, the fiber (Nopalina) helps bunch the small amounts into one larger amount, and Imodium gives me the six to eight hour break I need each day to be able to go to work, travel and have a relatively normal life.

Here's my post from the thread I linked above, wife2jeff, since you are still asking about fiber amounts, I suspect you have not gone there, but there's real life practical advice from several other people in there working on their own solutions.

....I struggled with this for a year or more, constantly using Colace / Senna / Immodium and never found an answer till I added 1-2 tablespoons of Nopalina (fiber that contains senna) every morning.

With fiber for bulk, I'm able to control consistency (Extrusion vs. nugget) with a daily Miralax dose - for me, the magic amount is half a dose daily. If I skip it for a day or two, I'm struggling with multiple protracted toilet trips to squeeze out hard, milkdud-sized poops. If I take a full dose of Miralax, I have soft, sticky extrusions for a day or two.

I still use immodium once daily in the am to control urges as well, but I believe adding fiber was the answer to a lot of my bowel issues. And it probably helps that the Nopalina fiber I use has prebiotics and senna as well as insoluble fiber. I'm sure the effective amounts of each (fiber, Miralax, Immodium) vary from person to person but I can say, I rarely have to think about my bowel habits at all. I usually go in the morning and then again around 6 pm, and have normal size/shape/consistency.

I'm also a believer in probiotics, mainly for immune system function, and take one daily. I don't think that affect the bowel function but I'm throwing it in there in case it does.......
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

NHMike
Posts: 2422
Joined: Fri Jul 21, 2017 3:43 am

Re: Help with bowels

Postby NHMike » Mon Sep 16, 2019 12:13 pm

I really like that Nopalina has several different kinds of fiber. I have a big container of Psyllium Fiber on my windowsill at the office. I tried it for a while and it did nothing for me. I tried the Nopalina mix and it didn't work well for me (stuff came out too fast and inconsistently). The tablets do work for me though. They should theoretically be the same but they aren't. So I do think that solutions are often individual solutions. And it can take a long time finding the thing that works the best.
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

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

Re: Help with bowels

Postby wife2jeff » Mon Sep 16, 2019 4:34 pm

I looked up Nopalina but there seems to be several out there, are there capsules as well? Can you send a link on which one you use? That would be great. I think he would try this. When you say it helped with the "urge" to need to go frequently was that the fiber or immodium? And did you have pain with this urge? Sorry hope not to personal, I don't know if yours was a low anterior resection like his.
One more thing when he starts this does he need to introduce it slowly? I know increasing fiber too fast can have some side effects in itself.

NHMike
Posts: 2422
Joined: Fri Jul 21, 2017 3:43 am

Re: Help with bowels

Postby NHMike » Mon Sep 16, 2019 4:48 pm

wife2jeff wrote:I looked up Nopalina but there seems to be several out there, are there capsules as well? Can you send a link on which one you use? That would be great. I think he would try this. When you say it helped with the "urge" to need to go frequently was that the fiber or immodium? And did you have pain with this urge? Sorry hope not to personal, I don't know if yours was a low anterior resection like his.
One more thing when he starts this does he need to introduce it slowly? I know increasing fiber too fast can have some side effects in itself.


I use the capsules. I tried the bag but it didn't work for me. Others use the bag and it works for them.

Imodium slows things down so you take it before an event if you need peace for 6-8 hours.
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

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

Re: Help with bowels

Postby wife2jeff » Mon Sep 16, 2019 7:26 pm

I think he might like trying the capsules can you put a link to the ones you take? there seems to be a lot of different napolinas. Also when you do this are you taking the miralax, napolina and the immodium all at the same time or the napolina and immodium at the same time??


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