Is bowel regularity possible after reversal?

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JudeD59
Posts: 706
Joined: Sun Apr 12, 2015 12:16 pm

Is bowel regularity possible after reversal?

Postby JudeD59 » Wed Apr 05, 2017 3:46 pm

I've read enough on here to know that a lot of members have made bathroom visits manageable after ileostomy reversal by using Metamucil, Citrucel, Benefiber, Heather's Tummy, Lomotil, Immodium, or some combination of the above along with diet. And I know some use enemas to clean out once a day and be done with it. But for those of you using supplements and meds, have you been able to adjust and experiment enough to make your timing of bowel movements fairly predictable?

Predictability is the biggest problem with me. I do have days when I don't poop all day long and just go a bunch of times in the evening or overnight, but I don't know it's going to be that kind of day until it's over so I can't take advantage of it to run errands or go see a movie. No matter what I eat or when, and I keep a spreadsheet, my "bad" times seem to be all over the place--middle of the night, morning, afternoon, evening---nothing is predictable. I'm just starting to add more natural fiber and supplements to my diet and was wondering if that just made you have less movements that were bulkier but still unpredictable or if you were able to take the supplements at a certain time to have a reasonable idea of when you would need to be near the bathroom.

In other words, I've seen lots of posts saying, "I take Metamucil (or Citrucel or Heathers or whatever) three times a day and that works for me" but I've never seen anyone say that doing that lets them go a couple times in the morning and be done until the next day. For me, that would be the dream goal---a couple of visits after I wake up and then free to go places and do things and not worry about it as much. Of course I know there will always be days when I eat too much of something or have a reaction to a food item and all bets are off, but people who haven't had a ileostomy reversal have those kind of days, too.

I know we are all different and will need different solutions for our individual systems, but I think having some guidelines from people who have conquered the reversal beast and tamed it would be really helpful to those of us still trying to figure it out. So if anyone would be willing to share what they take, how many times a day, when they take it, and what the resulting average poopage experience is, I would be undyingly grateful and I'm sure others would be as well. It would be great to be able to come to a thread and just see a list of what supplements and meds are used in what dosages at what time = approximately this many poops at this time of day.

Thanks in advance to those of you willing to share your poop tales!
Judy
56 yrs old, wife, mother to 4 daughters
RC Stage II T3N0M0 DX April 2, 2015
6 cm. mid-rectum-CEA 121
Xeloda and radiation finished 06/15/15- CEA 242
CEA right before surgery 81
LAR performed 8/12/15 Temporary ileostomy
CEA 10-21-15 1.6
PET scan 11-4-15 All clear
Port installed 11/11/15
Folfox started 11/18/15
Folfox stopped due to bad reaction
Reversal 2/17/16
CEA 2/3/16 1.7
CEA 3/31/16 1.3
CT Scan 4/12/16 All Clear
Port removed 4/21/16
CEA 5/24/17 1.4

tarheelmom
Posts: 148
Joined: Mon Mar 07, 2016 5:55 pm

Re: Is bowel regularity possible after reversal?

Postby tarheelmom » Wed Apr 05, 2017 4:22 pm

Hi Judy,

I'm ~10 months out from my reversal. I no longer have a rectum so I have certainly had some challenging post-reversal issues, but things are somewhat more manageable lately.

My regime:

1 heaping Tbsp Metamucil (w/sugar) at 7 AM
Activia yogurt with fresh berries at 9 AM
Normal lunch/dinner
Snack on oatmeal or mini wheats

I typically poop/cluster every other day in the late afternoon or evening. Sometimes the schedule shifts, and I am up at night. I have been doing pelvic floor PT since January. I think that has helped a lot. I have an occasional accident, but it's tolerable. Approximately once a week, I have a dumping day where everything comes out. It starts out as well formed stool and within ~an hour, it is liquid. My BMs are either small (breakfast sausage) or about 12" long braids. Nothing remotely similar to pre-surgery (I was SUPER regular before with no digestive issues) I can no longer eat green beans, brussel sprouts, or jelly beans. Everything else including chili (in moderation) and Indian/Thai food seems ok. I do an exaggerated yoga tree pose to help with gas which is infrequent. Hope the info helps.
52 y at dx, mom to 4
DX: RC on 2/22/2016
Stage I, T2N0M0, 0/32 LN
23 mm x 7 mm moderately differentiated invasive adenocarcinoma
3 cm from anal verge
4/12/16: ULAR, TME, & temp ileostomy
6/14/16: ileo reversal

ams5796
Posts: 2239
Joined: Fri Feb 06, 2009 10:07 am

Re: Is bowel regularity possible after reversal?

Postby ams5796 » Wed Apr 05, 2017 6:16 pm

Hi Judy,

This is a great idea for a thread. I hope folks participate. I often ponder this question myself. I am over ten years out from diagnosis and over nine years out from my reversal and it has not been an easy road at all. Most of the time I perform daily enemas, but have never had total success with those for whatever reason. I feel great right after I do an enema, but a few hours later I start experiencing severe gas pain. So after a few days of that I take a break and try to go without an enema only to be up ALL night clustering. I never know if that is from the enemas or if that's how I would be without them. After a few nights of being up I go back to the enemas and start the process all over again. Over the nine years I have tried everything, and I mean everything twice or three times and have not been successful with any of it. I'm hoping to gain some insight from this thread. Thanks for getting it rolling.


Ann
Stage 3C (or 4?) Rectal Cancer 01/07
2/10 lung mets
3/11 VATS
6/11 VATS
7/13 lung met
2/14 SBRT
NED 8/14
5/17 scan and MRI found spine met that had been treated
7/17 breast biopsy

teachpdx
Posts: 581
Joined: Wed Jan 16, 2013 12:29 am
Location: Portland, OR

Re: Is bowel regularity possible after reversal?

Postby teachpdx » Wed Apr 05, 2017 7:53 pm

I'm four years post reversal & still have problems on occasion. The biggest culprits are coffee and snacking. I just had a week off for spring break and got messed up with drinking too much coffee and snacking instead of eating meals.

I eat more carbs than I used to and try to remember to take two Immodium per day. I also started baking my own sourdough which has helped immensely.

You're still young to the process and good luck with your process!
4/24/12 RC T3N1M0 age 53
5/23-7/2 - 26 chemorad - Xeloda
7/16 Lynch- MSH2
8/28 LAR w/ temp ileo, CR, 0/11,M0, hysterectomy
10/13 6 cycles Xeloda - completed only 1 1/2 due to HFS
3/12/13 - reversal
8/13 NED
6/15 - HFS gone!

Tupelo honey
Posts: 11
Joined: Tue Jul 19, 2016 7:57 pm

Re: Is bowel regularity possible after reversal?

Postby Tupelo honey » Wed Apr 05, 2017 8:51 pm

Just over a year out from surgery and although I do have a routine, I can lead a pretty normal life: work full time, travel, shop, etc.

I take two immodium and 1 Tylenol with codeine 300-30 every morning around 8:45 am. (The codeine is for the radiation proctitis- I have discomfort without it but the immodium alone will work if I run out of Tylenol) This takes about an (uncomfortable) hour to kick in and then I'm usually good,feel pretty normal (like before-normal) all day until I get home as long as I've eaten reasonably. I feel "cleaned out better" when I eat oatmeal or cereal but don't go out of my way to do so. I usually have at least one bm in the pm and I've been known to take an extra immodium in the afternoon if I have to do something in the evening to put that off. Everything wears off around 4 or 5 am and I can go anywhere from 3 to 7 times before I take the morning meds and wait for them to kick in.

At night I take 400 mg magnesium, and 2 stool softeners every evening and I use senekot if I get slow down. If I don't get results with senekot, I move on to miralax. With the proctitis, constipation is extremely uncomfortable and a real problem in that hard stool feels like sharp rocks inside which can bring on bouts of sitting and straining throughout the day, so I work very hard to avoid it. Otherwise, I feel fortunate that I'm able to lead a semi normal life where no one but my closest family is aware I still have ongoing issues. I do carry a can of bath and body works concentrated room spray for those occasional public poops and tend to seek out Starbucks for such occasions since they almost always have a private room rather than a row of stalls.
Rectal Cancer 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, aspirin, metformin, modified citrus pectin
10/2016 NED
03/2017 NED
07/2017 NED

brownnurse
Posts: 3
Joined: Sun Mar 19, 2017 7:30 am

Re: Is bowel regularity possible after reversal?

Postby brownnurse » Thu Apr 06, 2017 9:52 am

I am almost 10 months from LAR Stage 3 reversal. I have tried everything too. So frustrating with unpredictable bms too. My stools are so thin too that it takes forever to empty and then the soreness. I have tried warm tap enemas to empty every couple days. It's the only way I feel like I get a good evacuation. You aren't alone.

JudeD59
Posts: 706
Joined: Sun Apr 12, 2015 12:16 pm

Re: Is bowel regularity possible after reversal?

Postby JudeD59 » Fri Apr 07, 2017 1:59 pm

Thanks for the replies. I'm sad to hear that some of you are still having major problems and happy that some have found a way to make things manageable.

I hope more members will come on to share their routine and what works for them.

Judy
56 yrs old, wife, mother to 4 daughters
RC Stage II T3N0M0 DX April 2, 2015
6 cm. mid-rectum-CEA 121
Xeloda and radiation finished 06/15/15- CEA 242
CEA right before surgery 81
LAR performed 8/12/15 Temporary ileostomy
CEA 10-21-15 1.6
PET scan 11-4-15 All clear
Port installed 11/11/15
Folfox started 11/18/15
Folfox stopped due to bad reaction
Reversal 2/17/16
CEA 2/3/16 1.7
CEA 3/31/16 1.3
CT Scan 4/12/16 All Clear
Port removed 4/21/16
CEA 5/24/17 1.4

sadysue
Posts: 966
Joined: Tue Aug 02, 2011 6:59 pm
Location: Charleston, TN

Re: Is bowel regularity possible after reversal?

Postby sadysue » Sun Apr 09, 2017 11:51 am

I was five years post reversal in March of this year. My entire rectum was removed. I am not that much closer to normal now than I was back then. The good thing is that I have learned when to expect problems. I get some low, strong cramping a few times a week - like two or three times - which is my alert!!!! to get to a bathroom fast. It will be a total blow out and last anywhere from 10 to 30 minutes and I feel wonderful afterwards. On the non-blow out days, I am usually constipated and my bathroom time is not predictable but it is also much less urgent. I've tried lots of different stool softener products but they make me leak and I can't feel the leakage. So I keep away from those types of products. I take Align probiotic, drink lots of water, take fiber caps and make a slight :roll: attempt to eat healthy. Timing is never predictable for me and my blow outs are all over the place. There are days that I don't leave the house but fortunately, most days are pretty normal for me. I am no longer working, so very lucky to be able to stay home when I need to do so, which is not too often. Good luck to you and I truly hope post reversal life gets easier!
Rectal dx 4/2011 (Stage 3B - T3N1M0)
5FU/Rad - daily/6 wks ending 6/2011
Surgery 8/19/2011
Finished 8 rounds Folfox 2/2012
Ileo reverse and port out 3/2012
NED

JudeD59
Posts: 706
Joined: Sun Apr 12, 2015 12:16 pm

Re: Is bowel regularity possible after reversal?

Postby JudeD59 » Wed May 10, 2017 1:03 am

Just an update--I decided to try Benefiber since it isn't gritty and doesn't thicken. And it has helped somewhat. I started by drinking it with my morning coffee, but found that made me spend part of my afternoon or early evening in the bathroom. I've now moved to drinking it before I go to bed and along with the other meds I'm taking (1/2 Percocet for another issue, Ativan, and iron supplements) I can usually count on a morning visit or two that almost clears me out. But unfortunately, I still have the unpredictability of several smaller movements later in the day. I've been thinking about making two adjustments, but I'd like advice. I was thinking about switching my evening supplement to Citracel or Metamucil since I've heard they are more effective. And if that isn't enough, I thought about taking Lomotil after going in the morning to see if that can give me the afternoon/evening free to have a life.

I have four grown daughters and between careers and marriages and schedules, it's hard to even get all of us together for a weekend. Now they tell me they want to do a major family vacation this summer, perhaps in Ireland and England. I'm not going to lie--it's a dream come true and a nightmare at the same time. I would love to spend ten days with my husband and children and their spouses exploring a new place, but even thinking about it gives me a panic attack. I need to get my shi* together before then, literally. The flights, the time spent in a rental car exploring, even dinners out, all something I can't do now and want desperately to be able to do then. I suppose I could just book the trip and then if things haven't improved dramatically by a few weeks before we leave, I could try enemas.

Some of my concern doesn't involve bowel movements (believe it or not). I also haven't recovered from the bad reaction I had to the Folfox even though it's been a year and a half. My blood counts, especially my iron levels, just won't bounce back to normal. I'm going to talk to my oncologist later this month and flat-out ask him if this is as good as it's going to get. I've always bounced back quickly from previous surgeries, but a year and a half after my infusion, I am still weak, tire easily, and generally feel like crap most of the time. My oncologist keeps saying there is something else going on with my body but he can't figure out what it is. Lovely. I exercise, try to eat healthy, I take vitamins, drink Smart Water, and I take an iron supplement every day, but I'm not feeling any improvement. So that's also a worry when considering a trip that would exhaust healthy people.

Any advice or suggestions anyone has for surviving a trip while dealing with reversal issues would be appreciated.

Thanks,
Judy
56 yrs old, wife, mother to 4 daughters
RC Stage II T3N0M0 DX April 2, 2015
6 cm. mid-rectum-CEA 121
Xeloda and radiation finished 06/15/15- CEA 242
CEA right before surgery 81
LAR performed 8/12/15 Temporary ileostomy
CEA 10-21-15 1.6
PET scan 11-4-15 All clear
Port installed 11/11/15
Folfox started 11/18/15
Folfox stopped due to bad reaction
Reversal 2/17/16
CEA 2/3/16 1.7
CEA 3/31/16 1.3
CT Scan 4/12/16 All Clear
Port removed 4/21/16
CEA 5/24/17 1.4

Swirdfish
Posts: 237
Joined: Sun Jun 19, 2016 3:57 am

Re: Is bowel regularity possible after reversal?

Postby Swirdfish » Thu May 11, 2017 4:05 am

Well I think I'm 4 weeks post reversal and usually I can have a couple of days feeling fine. My biggest issue is urgency when the time does come and it usually takes quite a few trips to the bathroom to get it all out. Same as everyone else small and long and skinny. Then the process repeats until another couple of days.

Really annoying when your at work or a clients business .

But in total I can live with this.

Any ideas to get this any better. At the moment I take no medication.
06/2016 Went in for colonoscopy came out with a tumor. Age 35
12cm from verge at junction. Rectal cancer.
Clinical stage T3 NO MO
Temp illestomy
Completed 5FU and Radiation
LAR surgery planned 13 Oct 2016
Completed ULAR surgery 11-10-2016.
0/22 nodes
pT3 N0 M0 R1
Stage 2A

Pathology reviewed and changed
ypT3 N0 M0 R0

Started folfox 21-11-2016
5-4-17 NED
Reversal 12-4-17

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kellywin
Posts: 472
Joined: Wed Jan 23, 2013 4:46 pm
Location: Northern CA

Re: Is bowel regularity possible after reversal?

Postby kellywin » Thu May 11, 2017 12:01 pm

Hi Judy,

You're still really early since your surgery, and it does take time to find the right routine. I will preface that I didn't have a reversal, as I didn't have a temp ileo - but I can tell you it was some rough times after surgery. Part of it is just time. I'm 4 years out and I think I do pretty well. There's never going to be perfection, but it doesn't run my life. I am a loyal Metamucil (sugar free) user, I use the largest scoop I can plus a little bit more in my spoon, I mix it with only 8 or 9 oz of water (I always use the same coffee mug, I have a set of 4 and that's all I use so the measurement will always be consistent). I do it just before bed and my bowels are somewhat consistent each night, many times it's 2 trips, but it's typically the same time each day. I also take Norco for pain in my feet from chemo and in my hips/gluts from radiation. The Norco helps slow the system down. I also always carry Lotomil (I have no use for Immodium - personally I think it sucks and it can back me up rather than help), lotomil never causes me a problem and usually 1 will do. The one thing guaranteed to wreak havoc is a few beers :? Try the lotomil if you haven't before, it's helped me many times.

Like I said, it's never perfect and there are some wicked nights that I curse everyone under the sun - but they really aren't all that often and it doesn't run my life.

Give it some time.
Kelly, mom 12 yo girl
Dx 11/15/12 Rectal Cancer @ age 40
Stage IIIC
5.5 weeks Xeloda & Radiation - complete 2/5/13
Colectomy 3/12/13, 7 of 14 nodes positive - no ileo
4/24/13-8/20/13 - 5 rounds Xelox, 1 Xeloda only
7/2015 Clear colonoscopy!
4/2017 Clear CT!

JudeD59
Posts: 706
Joined: Sun Apr 12, 2015 12:16 pm

Re: Is bowel regularity possible after reversal?

Postby JudeD59 » Thu May 11, 2017 2:04 pm

kellywin wrote:Hi Judy,

You're still really early since your surgery, and it does take time to find the right routine. I will preface that I didn't have a reversal, as I didn't have a temp ileo - but I can tell you it was some rough times after surgery. Part of it is just time. I'm 4 years out and I think I do pretty well. There's never going to be perfection, but it doesn't run my life. I am a loyal Metamucil (sugar free) user, I use the largest scoop I can plus a little bit more in my spoon, I mix it with only 8 or 9 oz of water (I always use the same coffee mug, I have a set of 4 and that's all I use so the measurement will always be consistent). I do it just before bed and my bowels are somewhat consistent each night, many times it's 2 trips, but it's typically the same time each day. I also take Norco for pain in my feet from chemo and in my hips/gluts from radiation. The Norco helps slow the system down. I also always carry Lotomil (I have no use for Immodium - personally I think it sucks and it can back me up rather than help), lotomil never causes me a problem and usually 1 will do. The one thing guaranteed to wreak havoc is a few beers :? Try the lotomil if you haven't before, it's helped me many times.

Like I said, it's never perfect and there are some wicked nights that I curse everyone under the sun - but they really aren't all that often and it doesn't run my life.

Give it some time.


Thanks, Kelly. It feels strange to have you say I'm still really early since my surgery. My surgery to reverse the ileostomy was fifteen months ago. Most of the progress you're going to make is supposed to happen in the first year. I've seen people on here who were able to get a manageable system down in the first few months so they could go back to work. I'm still pretty housebound so it doesn't feel early.

I'm going to try switching to the Metamucil and try taking the Lomotil this weekend to see if it helps. Although I've had the prescription for Lomotil since chemo/radiation, I've never tried it, relying on Immodium instead. But I'm not a big fan of the Immodium so I'll give the Lomotil a try.

Can I ask you some specifics? You say you take the Metamucil right before bedtime and then you have bowel movements pretty much the same time every day. Is it the next morning or during the night or what? I've been taking the Benefiber at bedtime, hoping it will clean me out in the morning, but the last couple of nights, it's woken me up several hours later for several trips to the bathroom. I'm trying to figure out generally how long it takes for the fiber supplement to work through the digestive system. I know it won't be the same for everyone, but just generally.

The problem for me is not only does it run my life, it is running my family's life, since there are so many places we would normally go together that I just can't go to since my reversal. I went out places and traveled a lot more during chemo/radiation and with my ileostomy bag than I have since I was reversed. But I'm actively seeking a manageable solution to get at least part of my life back.

Thanks for your input.

Judy
56 yrs old, wife, mother to 4 daughters
RC Stage II T3N0M0 DX April 2, 2015
6 cm. mid-rectum-CEA 121
Xeloda and radiation finished 06/15/15- CEA 242
CEA right before surgery 81
LAR performed 8/12/15 Temporary ileostomy
CEA 10-21-15 1.6
PET scan 11-4-15 All clear
Port installed 11/11/15
Folfox started 11/18/15
Folfox stopped due to bad reaction
Reversal 2/17/16
CEA 2/3/16 1.7
CEA 3/31/16 1.3
CT Scan 4/12/16 All Clear
Port removed 4/21/16
CEA 5/24/17 1.4

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peanut_8
Posts: 2077
Joined: Sun May 25, 2014 1:31 pm
Location: Capital of Texas

Re: Is bowel regularity possible after reversal?

Postby peanut_8 » Thu May 11, 2017 2:43 pm

Hi Judy,
I've tried many different fiber supplements, and have found that metamucil works best for me. I know others may have different preferences. I've also tried the metamucil capsules, and they just don't do the trick like the messy spoonful does. If I take it reasonably early in the morning, I usually get a bowel movement sometime after dinner, butt before bedtime. Many times I get an additional urge after my morning coffee. Is it 100% predictable, no, butt in general it works for me.

Hope you get some relief. A trip to the United Kingdon with all your family sounds delightful.

Best Wishes,
peanut
Terri aka peanut
diagnosed Jan 14, RC stage 2a, age 56
permanent colostomy
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

User avatar
kellywin
Posts: 472
Joined: Wed Jan 23, 2013 4:46 pm
Location: Northern CA

Re: Is bowel regularity possible after reversal?

Postby kellywin » Thu May 11, 2017 5:39 pm

Hi Judy,

The key is using a small amount of water with the Metamucil (the other products just don't work for me, I know it tastes like shit, but I just chug the 8 oz of it quick). The smaller the amount of water, the more it will slow down your bowels. There used to be a section or download on the MD Anderson website for Bowel Management (or Training?) Program - the link I had didn't work and the place that I found when I Googled it wasn't what I was thinking of. But my surgeon also told me the same thing. He said start with only a few tablespoons of water with a teaspoon (or more) of Metamucil. Then try not to drink too much water for a little while - this will slow things down. Also, during my first year, I used a lot of Lotomil - if only I had tried it during radiation! OMG, I was kicking myself - it's great and very fast acting. You should try it, even if you have to take one a day or every other day until you form some type of routine and get the Metamucil worked out. I was on Norco for 'roid pain (thank you radiation!), and quickly realized it could be a lifesaver as it slows down the bowels pretty well.

I'd say that the Metamucil works the next day, I can't remember exactly once I got my system on track, but I usually end up in the bathroom sometime between 9pm & 10pm, and usually I'm taking the Metamucil after that. The first year or two can be rough, the unpredictability, the pain from the rawness of wiping a trillion times a day, and sometimes accidents, it's tough, I know. But now, I rarely have to go in the middle of the day. It's usually all at night.

I'm so sorry that you're still tied down, and don't have the freedom you'd like. It does sound like you shouldn't be that tied down to a bathroom after 15 months, try the few tablespoons of water with the Metamucil and definitely use the lotomil!
Kelly, mom 12 yo girl
Dx 11/15/12 Rectal Cancer @ age 40
Stage IIIC
5.5 weeks Xeloda & Radiation - complete 2/5/13
Colectomy 3/12/13, 7 of 14 nodes positive - no ileo
4/24/13-8/20/13 - 5 rounds Xelox, 1 Xeloda only
7/2015 Clear colonoscopy!
4/2017 Clear CT!

Jacques
Posts: 405
Joined: Sun Dec 28, 2014 10:38 am

Re: Is bowel regularity possible after reversal?

Postby Jacques » Fri May 12, 2017 12:41 pm

You mentioned that you might be going to Ireland or England for your trip. If so, there are two things that you should look into. Both of them have effects on the bowel system.

First, you will have to deal with a 5 hour jet lag. This can disrupt your daily bowel movement schedule. However, there are things that you can do to minimize the effect of jet lag:

Jet lag prevention
http://www.mayoclinic.org/diseases-conditions/jet-lag/basics/prevention/con-20032662

Second, the standard cuisine that you get in a new country may not be very compatible with your current eating standards, and you have only your 10 day trip to try to make adjustments. The restaurants you visit may not have anything like what you are used to eating,
Irish cuisine
https://en.m.wikipedia.org/wiki/Irish_cuisine
DX(2012): RC
Stage IIc,T4b N0 M0 L0 PN1 H0 D0 P0 I1
LAR
MSI: not tested
Chimio-radiothérapie
Chimiothérapie adjuvante : capécitabine + oxaliplatine
CEA < 1.0,
5 years NED,
End of 6-month follow-ups: 7/2017
----
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