Reversal Log: Experience,Problems, Q & A's

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JudeD59
Posts: 726
Joined: Sun Apr 12, 2015 12:16 pm

Re: Reversal Log: Experience,Problems, Q & A's

Postby JudeD59 » Mon Feb 15, 2016 12:27 am

Just finished reading this for the kazillionth time in preparation for my reversal Wednesday, so I'm bumping it up for others who may need the wise words contained in these pages.

Thanks to all who contributed to this log and I hope you are all recovering well and adjusted to a manageable new normal.

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

JudeD59
Posts: 726
Joined: Sun Apr 12, 2015 12:16 pm

Re: Reversal Log: Experience,Problems, Q & A's

Postby JudeD59 » Mon Feb 15, 2016 2:02 am

I actually did think of a question that I haven't seen addressed on here or in any of the reversal threads I've read. I know some people have problems after reversal and choose to go with a scheduled daily enema to relieve the situation. But did any of your doctors mention when it was okay to do an enema if you are doing it as just a one time solution to severe constipation and clustering?

The reason I ask is because I had a large ulcerated rectal tumor that caused clustering and I spent a lot of time in the bathroom. When I started Xeloda/radiation, instead of diarrhea, I got constipation, big time, which meant spending even more hours in the bathroom. At one point during all of this, I had a wedding that I really wanted to attend, but knew it would be a nightmare and I would spend the whole reception in the ladies' room stall. I had bought some Fleet enemas because I had to use them before a couple of tests and procedures the doctor wanted done, so I decided to try one and see if there was enough relief that I could enjoy the wedding. I tested it out a few days before and was able to clean out enough that I had a bathroom-free evening for the first time in months. So the day of the wedding, I did one before showering and getting ready and I was good to go. No bowel pressure or clustering or even feeling like I had to go for the whole night. It was all back the next morning, of course, but it was enough to get me through that one evening when I needed a break.

So . . . I was wondering if any of your doctors had ever mentioned an at home enema as a solution if things got really bad and you needed immediate relief or as a solution to a special evening or day out? And if so, does anyone remember if there was a certain time frame before enemas were allowed to be used? I will certainly ask my surgeon before attempting to use one no matter what info I get on here, but I was curious to hear if any of you had information or had considered using one as a one time solution.

Thanks to anyone who replies.

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

User avatar
O Stoma Mia
Posts: 820
Joined: Sat Jun 22, 2013 6:29 am

Re: Reversal Log: Experience,Problems, Q & A's

Postby O Stoma Mia » Mon Feb 15, 2016 3:34 am

JudeD59 wrote: So . . . I was wondering if any of your doctors had ever mentioned an at home enema as a solution if things got really bad and you needed immediate relief or as a solution to a special evening or day out? ...
Thanks to anyone who replies.
Judy

Well, you said "thanks to anyone who replies", so I'll post a reply, though it probably isn't what you want to hear:

In my experience, surgeons and oncologists do not have much advice to give when it comes to bowel management problems. Their specialties are surgery and chemo/radiation, respectively. They are not particularly interested in post-treatment bowel problems or anything having to do with poo, and if they do give any advice it is probably something that is common knowledge or something that you already know. One book I recently read actually made such a statement, saying that such doctors do not receive much or any bowel-management training in med school, and they are not really prepared to advise patients in these matters.

I think if you want to get some good advice you would have to talk to a gastroenterologist who specializes in bowel problems, fecal incontinence, etc. That's just my personal opinion.

JudeD59
Posts: 726
Joined: Sun Apr 12, 2015 12:16 pm

Re: Reversal Log: Experience,Problems, Q & A's

Postby JudeD59 » Mon Feb 15, 2016 4:27 am

O Stoma Mia wrote:
JudeD59 wrote: So . . . I was wondering if any of your doctors had ever mentioned an at home enema as a solution if things got really bad and you needed immediate relief or as a solution to a special evening or day out? ...
Thanks to anyone who replies.
Judy

Well, you said "thanks to anyone who replies", so I'll post a reply, though it probably isn't what you want to hear:

In my experience, surgeons and oncologists do not have much advice to give when it comes to bowel management problems. Their specialties are surgery and chemo/radiation, respectively. They are not particularly interested in post-treatment bowel problems or anything having to do with poo, and if they do give any advice it is probably something that is common knowledge or something that you already know. One book I recently read actually made such a statement, saying that such doctors do not receive much or any bowel-management training in med school, and they are not really prepared to advise patients in these matters.

I think if you want to get some good advice you would have to talk to a gastroenterologist who specializes in bowel problems, fecal incontinence, etc. That's just my personal opinion.


Thanks, OSM. I wasn't particularly looking to hear anything, just curious. So I appreciate you taking the time to answer.

I agree that surgeons aren't very good with followup diets. I remember after my ileostomy, my surgeon told me to just eat a normal diet. He didn't tell me to avoid nuts, popcorn, seeds, fruits and vegetables with peels, etc. I knew all those could be problematic from reading on here and other research. I'll be trying to follow a low residue diet for the first couple of weeks and then slowly adding in one new food at a time.

The reason I thought a surgeon might have an opinion on enemas is because that is more of a physical, what's safe for the area that has been operated on type question. I know many of them have strong instructions on when it is safe to add fiber, laxatives, and Immodium, so I just thought enemas might have also been mentioned.

Again, thanks for your answer. It's always good to hear from you since you have so much knowledge to share and take the time to share interesting links.

Have a great week!

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

ams5796
Posts: 2268
Joined: Fri Feb 06, 2009 10:07 am

Re: Reversal Log: Experience,Problems, Q & A's

Postby ams5796 » Mon Feb 15, 2016 7:53 am

I completely agree with OSM. I have been dealing with these problems for nine years and I've never had any of of my doctors (oncologist, colorectal surgeon, etc) give me any practical advice. Every time I have asked I always get the same old "try some Metamucil."

The daily enema is really the perfect solution. I'm not sure how soon you may begin that. It might be a good idea to pose this question on the daily enema thread.



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 treated spine met

JDMNYC
Posts: 133
Joined: Wed Apr 15, 2015 5:12 pm
Location: Morris County, New Jersey

Re: Reversal Log: Experience,Problems, Q & A's

Postby JDMNYC » Mon Feb 15, 2016 10:39 am

Waiting for approval to try enema (was reversed two months ago).

In the meantime, anyone have any theories on the integration of Imodium and Dulcolax (or the like) to control timing? Thanks.
- Dx Stage IIIc rectal cancer: January 2015 (CEA 20)
- Chemo (Folfox): January - April 2015
- Chemo-Radiation (Xeloda): May - June 2015
- Surgery (LAR/temporary ileostomy): September 2015; 4/20 lymph nodes – no adjuvant chemo
- Reversal: December 2015
- Stage IV: August 2016 - Lung Mets
- Chemo (Xeloda) Started October 2016.
- CEA down; lung mets shrinking.

"There are more things in heaven and earth, Horatio, Than are dreamt of in your philosophy."

ozziej
Posts: 213
Joined: Thu May 21, 2015 8:35 pm

Re: Reversal Log: Experience,Problems, Q & A's

Postby ozziej » Wed Feb 17, 2016 12:53 am

JDMNYC wrote:
oozier wrote: In fact I've found laxatives better for improving consistency and predictability.


Thanks Jan - when you have a moment I'd be interested in hearing about this. I'm doing 4-6 Imodium/day on the theory it slows the bowel, but would be interested to know what you meant about laxatives vis a vis consistency and predictability.

Thanks,

Jim

Hi Jim and fellow reversalists.
I'll preface my response by saying that I'm on long term pain medication so my 'normal' pre-dx was severe constipation treated with dulcolax and sennekot. Post-reversal, I only had loose stools for the first few days. These were quickly replaced by firm stools, but I still had frequency, urgency, clustering, and tenesmus. Despite knowing about my pre-dx constipation, at my 4 week check-up my surgeon recommended I use loperamide to address the frequency and clustering. I only took one loperamide once...on the plane trip home after reversal...and I paid the price. Clustering is bad enough with loose stools but with hard stools it's the pits. I was advised not to take any laxatives until my bowel settled into its 'new' routine, and to try to manage things via diet. So, I kept a food/BM diary for several months, but could never really find any significant patterns. Sure, if I kept to my 'safe' foods things were better, but at best all I could say was that I 'might' have a few BM's after breakfast, followed by a break, then things started again late afternoon and I generally had 8 to 10 BM's in the evening.
As time went on the frequency and clustering did reduce however I noticed that I was getting more and more constipated (making the clustering more painful) and the tenesmus was increasing. The constipation continued despite having rolled oats for breakfast, a high fibre lunch and dinner, heaps of water, and walking/swimming three times a day. About this time I read Tammylayne's post about her surgeon suggesting clustering might be more to do with constipation. So I started experimenting with laxatives and hey presto, the clustering and tenesmus dramatically decreased. Then I read about others using enemas or prune juice to have a 'clean out' in order to provide a safe window in which to have a life, so I continued to experiment with laxatives to get some predictability back into my life.
Now, it's certainly not perfect, but at 9 months' post-reversal, if I take my laxatives about 11am and stick to my 'safe' foods, I can be fairly sure that I'll have 2 or 3 loose BM's in the late evening that completely evacuate my bowel. This gives me some certainty that I have all day to do the things I need to, without worrying about multiple trips to the loo. However, this regime may only work if you're like me and prone to constipation.
I tend to agree that often the advice given post-reversal is a 'one size fits all' kind of response. I think this is because there really hasn't been enough research done on us reversalists. The main focus has been on avoiding a permanent colostomy, and research is only now focusing on the trade-off that sphincter-sparing surgery brings. Perhaps we should start to develop our own data set....
Hang in there Jim. I know only too well how frustrating this journey is, but time really does bring some improvement. So much so that my partner and I have taken the plunge :roll: and booked ourselves on a cruise from Oz that calls into NYC in July. My first ever time to NY so I expect you to have those bowels under control so that you can show us around :mrgreen:
Jan
F 56 dx 11/14 Stage 1 RC (post EMR)
No neo-adjuvant or adjuvant chemo/RD
3/15 ULAR (open) temp loop ileo
5/15 ileo reversal
NED and hoping to stay that way!! : )

ams5796
Posts: 2268
Joined: Fri Feb 06, 2009 10:07 am

Re: Reversal Log: Experience,Problems, Q & A's

Postby ams5796 » Wed Feb 17, 2016 9:29 am

Jan,

Can I ask what laxative you're using?


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 treated spine met

tammylayne
Posts: 2157
Joined: Fri Jul 16, 2010 9:24 am

Re: Reversal Log: Experience,Problems, Q & A's

Postby tammylayne » Wed Feb 17, 2016 6:58 pm

I enjoy reading different ways we learn to deal with our new "normals". What works for one person might not work for the next person, and someone might share something that becomes a game changer for someone else....that is certainly one of the coolest parts of this club...

Having said that...I want to ask a question not to stir the pot....but rather to make us think, and reply with answers that further make us think :D

As everyone knows, I have great success with doing the daily enema. 30 - 40 minutes every 24 hours and my life is not run by my bowels. So my question is why would someone prefer to control their bowels with drugs, medications etc rather then trying the enema that only involves tap water and a little time? Before I did the enema I often wondered and worried about what effects all of the immodium etc would have on me over the long term. Please...I am not saying my way is the only way, or the better way....just wanting dialogue so those of us living in a world where the reversal did not give the desired result can add more points of view and knowledge to allow us to always be making the best possible choice for our particular situation...
51 F
'06 Stage 1 CC,
'10 Stage 3 Rectal

"You never know how strong you are until you have to become your own hero."

ozziej
Posts: 213
Joined: Thu May 21, 2015 8:35 pm

Re: Reversal Log: Experience,Problems, Q & A's

Postby ozziej » Wed Feb 17, 2016 8:19 pm

Hi TL
I think you make a really good point. I certainly wonder about the long term impact of taking the laxatives. However, for me, after having a particularly traumatic experience with a barium enema, I just can't bring myself to even think about doing them myself. I'm currently using relaxation exercises to help me reduce tension in the anal area that is now causing ongoing sciatic pain. My physio and I think what's happened is that with the multiple exams over the past 18 months I have tensed the muscles into spasm. Therefore, any attempt at an enema at this stage is likely to end in tears. Having said that, I would never rule out trying to use enemas sometime in the future. As you said, horses for courses.
cheers
Jan :)
F 56 dx 11/14 Stage 1 RC (post EMR)
No neo-adjuvant or adjuvant chemo/RD
3/15 ULAR (open) temp loop ileo
5/15 ileo reversal
NED and hoping to stay that way!! : )

ams5796
Posts: 2268
Joined: Fri Feb 06, 2009 10:07 am

Re: Reversal Log: Experience,Problems, Q & A's

Postby ams5796 » Wed Feb 17, 2016 8:43 pm

My top preference would be to do a daily enema. I love the freedom that it gives me. I can do an enema daily for about a week and then I hit a wall...of pain. I don't know why that happens, what I may be doing wrong etc. I get so discouraged when it happens that I decide it's not for me until I have a few sleepless nights of clustering. Then, I try it again. I'm just looking for a solution.


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 treated spine met

JDMNYC
Posts: 133
Joined: Wed Apr 15, 2015 5:12 pm
Location: Morris County, New Jersey

Re: Reversal Log: Experience,Problems, Q & A's

Postby JDMNYC » Mon Feb 22, 2016 11:21 am

ozziej wrote:Hang in there Jim. I know only too well how frustrating this journey is, but time really does bring some improvement. So much so that my partner and I have taken the plunge :roll: and booked ourselves on a cruise from Oz that calls into NYC in July. My first ever time to NY so I expect you to have those bowels under control so that you can show us around :mrgreen:
Jan


Hey Jan -

Thanks very much for this. Saw my surgeon and her team on Wednesday. I told them that I am pretty much able to stop the system with Imodium, and now wanted to concentrate on a predictable, controllable output mechanism. They told me a few things. First, they told me I could try enemas, but not for another two months, i.e., April 17. My LAR was 9/20 (my reversal 12/17), so that would be 7 months after LAR. Second, no laxatives for now. They want me to continue to try to see how the system works without regulatory medication (although they acknowledge that this a little artificial given that I am taking Imodium).

In the meantime, they prescribed Colestipol, which ostensibly will serve to further bulk the stool. Also did a digital rectal exam to assess whether scarring might be part of the pain issue, but it appears not. The exam was not terrible (I thought it would hurt worse) but did make me a little sore for a day or two. After the visit, I laid off the Imodium to see what happens. For two days, not much, and then it was like the levy broke. Trying to not resort to Imodium right now so that I can get a baseline on things.

Anyway, to make a long story short, the answer was more time, and come back in a month. I'm keeping my fingers crossed for some real progress by July - I'd be delighted to meet you.

Thanks again Jan.

Jim
- Dx Stage IIIc rectal cancer: January 2015 (CEA 20)
- Chemo (Folfox): January - April 2015
- Chemo-Radiation (Xeloda): May - June 2015
- Surgery (LAR/temporary ileostomy): September 2015; 4/20 lymph nodes – no adjuvant chemo
- Reversal: December 2015
- Stage IV: August 2016 - Lung Mets
- Chemo (Xeloda) Started October 2016.
- CEA down; lung mets shrinking.

"There are more things in heaven and earth, Horatio, Than are dreamt of in your philosophy."

JDMNYC
Posts: 133
Joined: Wed Apr 15, 2015 5:12 pm
Location: Morris County, New Jersey

Re: Reversal Log: Experience,Problems, Q & A's

Postby JDMNYC » Mon Feb 22, 2016 11:26 am

tammylayne wrote: So my question is why would someone prefer to control their bowels with drugs, medications etc rather then trying the enema that only involves tap water and a little time? Before I did the enema I often wondered and worried about what effects all of the immodium etc would have on me over the long term.


Hey TL - glad to see you back! Hope you are recovering tolerably from the hernia surgery and able to put tougher some pain-free time. I'd be curious to know how you made out during the no enema period associated with your recent surgery - how did your bowels behave? Was it a rough adjustment? I saw my surgeon on Wednesday; she agreed that I could try enemas in two months, so I will be looking forward to some detailed instruction :)

You know my feeling - if I can get a predictable, reliable way to manage this issue, that's where I'm headed.

Jim
- Dx Stage IIIc rectal cancer: January 2015 (CEA 20)
- Chemo (Folfox): January - April 2015
- Chemo-Radiation (Xeloda): May - June 2015
- Surgery (LAR/temporary ileostomy): September 2015; 4/20 lymph nodes – no adjuvant chemo
- Reversal: December 2015
- Stage IV: August 2016 - Lung Mets
- Chemo (Xeloda) Started October 2016.
- CEA down; lung mets shrinking.

"There are more things in heaven and earth, Horatio, Than are dreamt of in your philosophy."

JDMNYC
Posts: 133
Joined: Wed Apr 15, 2015 5:12 pm
Location: Morris County, New Jersey

Re: Reversal Log: Experience,Problems, Q & A's

Postby JDMNYC » Mon Feb 22, 2016 11:29 am

JudeD59 wrote:And if so, does anyone remember if there was a certain time frame before enemas were allowed to be used? I will certainly ask my surgeon before attempting to use one no matter what info I get on here, but I was curious to hear if any of you had information or had considered using one as a one time solution.


Hey Judy -

My LAR was 9/20/15; reversed on 12/17/15. Surgeon wants me to wait another two months (4/17/16) before trying enema. She cited the newness of the connections as the reason.

Jim
- Dx Stage IIIc rectal cancer: January 2015 (CEA 20)
- Chemo (Folfox): January - April 2015
- Chemo-Radiation (Xeloda): May - June 2015
- Surgery (LAR/temporary ileostomy): September 2015; 4/20 lymph nodes – no adjuvant chemo
- Reversal: December 2015
- Stage IV: August 2016 - Lung Mets
- Chemo (Xeloda) Started October 2016.
- CEA down; lung mets shrinking.

"There are more things in heaven and earth, Horatio, Than are dreamt of in your philosophy."

tammylayne
Posts: 2157
Joined: Fri Jul 16, 2010 9:24 am

Re: Reversal Log: Experience,Problems, Q & A's

Postby tammylayne » Mon Feb 22, 2016 12:02 pm

Hey Jim...
For the first week after my surgery I had no BMs...not surprising as I really did not eat anything. I pretty much started back on the enemas when I got home. DId skip a few days when I just could not bring myself to do it due to pain and nausea from the hernia surgery, and on those days I paid the price....clustering. Not terrible...going 4 or 5 times in an hour, but I found myself missing ends to movies I was watching...or not visiting with pople that came to see me because I was in the washroom - basically it reminded me that my bowels were controlling ME. With my daily enema...I control my bowels. I go WHEN and WHERE I choose to. For me...it just works. For me,,,,immodium MIGHT slow things down, but I still had no idea when or where it might let me down, plus I was taking 10 - 12 a day just to get some control and that did not usually happen....that could not possibly have been good for me.

I am glad your doc is open to you trying enemas, and because you have not even hit the 6 month mark - there def could still be improvement for you. My surgeon said a year. Most improvements by 6 months, but still a good chance for additional improvements up to a year. It might be that we learn how to better control things - ie what we eat....but at the end of the day if we can find ways to give ourslves QUALITY of life...that is what truley matters.

You know I am here for you the minute you need help with th enema routine...they don't call me the Queen of the Enemas for nothing LOL :shock:
51 F
'06 Stage 1 CC,
'10 Stage 3 Rectal

"You never know how strong you are until you have to become your own hero."


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