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

Please feel free to read, share your thoughts, your stories and connect with others!
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 12:30 pm

Hey Tammylayne -

First, it is good to know that the your bowels functioned (if sub optimally) after the long period of daily enema use. Some people have tried to dissuade me from the idea, claiming that I won't be able to go at all on my own if I start down that road. Didn't sound believable to me, but I thought I'd check.

Second, I think all reversalists need to own a DVR so that they can pause live TV - otherwise, why bother even starting a show in our condition? :)

So far, my Imodium experience has not been bad, with two caveats. The first is that I can only take it for a day or two, because it really shuts me down. Then the day after I stop (or the following day) I really pay the price for using it. In there like 25-35 times/day. It is useful for when you just have to have a break though. Second, I feel like it slows me down mentally. I have not taken more than 8 or 9 a day, but when I do, I feel a bit like I've been drugged. Don't get me wrong, it beats being in the bathroom 30 times a day, but I am a little concerned about what the effect of long term use on cognitive function might be.

Vis a vis surgeons and enemas, mine actually planted the idea with me. Early on, when there was some concern about whether I would be a permanent bag case (which frankly, I still haven't ruled out), I asked whether I would rather have an ileostomy or a colostomy. She told me that one advantage to a colostomy was that it could be irrigated, and that often, that kept bag maintenance to a once a day thing. I didn't really focus on that answer in her office, but when I got home I did some searching, and then occurred to me that if I could irrigate through the stoma (which seems entirely non-controversial), why couldn't I irrigate the old-fashioned way? That's when I really started searching these boards, and in pretty short order found myself to Queen of the Enema :)

Anyway, for now I am just slogging it out. Would be great if things improve sufficiently that none of this necessary, but it is nice to know that there is a back-up plan.

Hope your recovery keeps going well.

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."

Badass
Posts: 1157
Joined: Sun Jan 15, 2012 11:42 am

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

Postby Badass » Mon Feb 22, 2016 9:25 pm

I am so happy to be rid of imodum and lomotil! They are helpful in a pinch but I really feel they were not good for me on an ongoing basis. I felt fuzzy-brained and depressed and I have read recently that anti-cholinergics are associated with dementia. Yikes! :shock:
I have renewed energy since kicking them and doing the daily enema-- started about three weeks ago and never looking back. Colorectal surgeon-approved!


Jane
R.C. 12/23/11 at age 52 T3N0M0
3/1/12 completed Xeloda and radiation
5/4/12 LAR & Ileostomy
6/7/12-10/4/12 6 rounds Xelox
11/27/12 Reversal
7/13/13 1 liver met
8/13 Met resection /hai pump
4/14 Chemo completed (Irinotecan/5fu/fudr in pump)

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

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

Postby tammylayne » Tue Feb 23, 2016 11:59 am

Wooooo Hooooo Jane!!!!!!!!!!!!

Awesome news.....so happy for you!!!!!! To me, there are several ways to have a successful reversal, and adapting the daily enema is just one of them!!! Sounds lik you have found it to be yours as well!!!!!
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."

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

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

Postby JudeD59 » Tue Feb 23, 2016 5:09 pm

Guess it's time for me to join this thread as a member of the reversal warriors. Had my surgery last Wednesday. Problems with bladder waking up, but it finally came through just before discharge from hospital Friday night. Had liquid diet Wednesday and Thursday, moved to transitional diet Friday morning. Had first bowel movement Friday. No problems with it, just pasty output. No accidents. Was spending most of day on toilet trying to get bladder working anyway.

More pasty movements on Saturday, but still no accidents. Good control. Pain in side was a problem and level stayed between 8 and 9 even with the percocet. Called surgeon on Sunday, was told to either go to ER or see surgeon Monday morning at 9. Waited to see surgeon, who switched painkiller to dilaudid. Said intense pain was from cutting and stitching through muscle. Said he had to do my reversal in a way he hadn't done before because of my adhesions and that involved a lot of sewing into muscle. Dilaudid has helped bring pain down a bit. Still sharp, but bearable. I think a lot of the pain was trapped gas because last night was awful night spent mostly on toilet with explosive diarrhea and much passing of gas and I felt the painful knot ease a bit.

Because of the anesthesia, I have the normal "everything tastes horrible" stage to get through and that's making it hard to keep hydration up. Surgeon gave me no instruction on taking or not taking Immodium or Lomotil, so even though I was worried about getting dehydrated, I didn't take anything. Visiting nurse came today and she has a call in to surgeon for instructions on what to take and when. Have had several loose movements today, but not nearly as bad as all last night. Still good control and no accidents or leaks. Bidet seat bought especially for this very helpful when things started getting very sore last night. Exhausted today, but expected to be.

Am sticking to instant oatmeal, applesauce, bananas, rice, and boiled white potatoes for diet. Tried a bit of peanut butter toast to try for protein, but tasted just awful. Can get Ensure down, so having a couple of them a day. Can't wait for taste buds to straighten out so I can enjoy my Smart Water again.

All in all, encouraged by control I've had, but spent some time cursing my doctor and the world last night after my fifteenth time on the toilet. The noises that come out of my stomach are incredible like they are echoing out of a large quarry or cavern instead of just my abdomen. I've never heard anything quite like it. I know it's early and I have a long road ahead of hit and miss and trial and error, but it's great having this log to come to for ideas and tips.

Thanks all,

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

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 » Wed Feb 24, 2016 10:46 am

Badass wrote:I am so happy to be rid of imodum and lomotil! They are helpful in a pinch but I really feel they were not good for me on an ongoing basis. I felt fuzzy-brained and depressed and I have read recently that anti-cholinergics are associated with dementia. Yikes! :shock:
I have renewed energy since kicking them and doing the daily enema-- started about three weeks ago and never looking back. Colorectal surgeon-approved!


Hi Jane -

Very encouraging to hear. Did I miss a post or two? :) What made you decide to try the enema? Any issues with transition? I have a little less than two months until I am able to try, so I'd be very interested to hear when you have a moment.

No Imodium for me for a week, but now going several times a day instead of the brutal every other day pattern with Imodium. I like the mental clarity of not taking 8 Imodium a day, but I also like not being in the bathroom constantly. If only there were some other solution . . . :D

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."

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

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

Postby JudeD59 » Sun Feb 28, 2016 12:38 am

Wasn't sure if I was going to continue posting updates on my reversal journey here because as usual, my journey has been a bit different. But then as I was reading through some of the other journals, I kept seeing people who were happy to read success stories and were scared by all the major issues some members were having, so I decided to post an update to encourage those who might worry that everyone has a really hard time after reversal.

Not to say that my time since my surgery 10 days ago has been all lollipops and rainbows, but it hasn't been as bad as I worried it would be. First of all, even though I have very little rectum left, I haven't had any accidents or even minor smears. Since even the first days, I could tell when it was going to be a fart and when it was going to be more, so I fart at will with no leakage or surprises. I had a great surgeon and I've been doing kegels for months, so maybe that is why I have good control. I don't know for sure. I know when I have to go and I have plenty of time to get to the bathroom. Haven't had to sprint yet. I have also read quite a bit about having your first fully formed stool being an accomplishment and I've been having regular formed logs since about day 4 or 5.

I had pasty stools for the first few days along with some gas and explosive loose stools. Then I started having several formed stools a day, but not as clustering. They weren't difficult to pass and I had the ability to push them out. And they weren't milk duds, but as large as my middle finger. This past Saturday and all day Sunday, I passed nothing and could feel the cramping from the build up of gas and stool. Sunday night was my worst night so far as I spent hours running back and forth to the toilet with diarrhea. That was unpleasant to say the least and left my butt sore and my abs aching and tender the next day. I had an open surgery with an incision about eight or nine inches long and I still have the staples in. When the gas and stool builds up, it always hurts in the exact same spot, so I'm assuming that's where my colon was reattached and there is still some swelling and narrowness there.

Monday, Tuesday, and Wednesday were back to normal stools several times a day. Easily handled, knew I had to go, went in and out in one, then several hours later emptied some more. Thursday and Friday I went back to no output with crampy, gassy stomach until last night when I was in the bathroom on and off for about two hours. No diarrhea this time, just lots of fully formed stool that wasn't hard but just waited to all come out at once. Or in one two hour session, that is. But it still wasn't clustering and I didn't have that feeling of still having to go that I remember so well from pre-diagnosis. And so far today, just two visits with formed stool that was easily passed.

I'm still on a very bland, low residue diet. I'm not sure how much my painkillers are affecting my output, but I've taken stool softener twice since leaving the hospital and I'm careful about foods I know constipated me in the past. I have always tended toward constipation instead of diarrhea, even during radiation, so I'm not surprised that I've only had the one bad diarrhea session so far and several stopped up experiences.

My father-in-law was recently placed on hospice care and we got the call today that things weren't looking good. My husband took me to see him so I could say goodbye. Between travel time and time spent with my father-in-law, we were away from home for a good five hours and I didn't have any issues. I never thought I would be able to be away from the toilet for that long this early and maybe I just got really lucky in the timing, but I'm thankful I was able to say my goodbyes without stressing about finding a free bathroom.

I have no idea what the next few weeks hold as I introduce more foods into my diet, but so far I am more than happy with the way my body is adjusting to the new system. I'm using no laxatives or fiber additives or Immodium or anything like that yet. I plan to talk to my surgeon about what I can and can't use when I go in to have my staples removed.

Hope you are all having a great weekend!

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

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

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

Postby ozziej » Sun Feb 28, 2016 2:24 am

Hey Judy
That is wonderful news. So happy that for once Murphy is off in a corner sulking and you've had the last laugh. As I write this I'm trying to down my last 2 glasses of glycoprep in preparation for my colonoscopy tomorrow. I'm so hoping it will be clear so I don't have to drink that rubbish for another year.
Wishing you continued success in avoiding the dreaded "shart". :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!! : )

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

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

Postby JudeD59 » Sun Feb 28, 2016 4:13 am

ozziej wrote:Hey Judy
That is wonderful news. So happy that for once Murphy is off in a corner sulking and you've had the last laugh. As I write this I'm trying to down my last 2 glasses of glycoprep in preparation for my colonoscopy tomorrow. I'm so hoping it will be clear so I don't have to drink that rubbish for another year.
Wishing you continued success in avoiding the dreaded "shart". :mrgreen:
Jan :)


Thanks, Jan. Unfortunately, we got the call a couple of hours ago that my father-in-law passed away. We went to the house to be with my mother-in-law and again, except for massive incision pain from standing and sitting for hours, I didn't have any problems. But now I have a four hour viewing on Friday and then a funeral mass, burial, and luncheon to get through on Saturday. How am I ever going to make it? I mean what are the chances that I'll get lucky enough not to have my busy toilet time on either Friday night or Saturday day? Not good, I imagine.

Best of luck with your colonoscopy tomorrow. I'm praying for blue skies and clear scans for you. Oh, yeah, the dreaded prep. Ugh.

By the way, I only trust the fart when in the safety of my own home. I would never trust it while out in public. That's just a recipe for disaster!

I'll be thinking of you tomorrow (Oh, I guess it's today actually.)

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

Lordswood77
Posts: 37
Joined: Tue Mar 08, 2016 1:30 pm

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

Postby Lordswood77 » Wed Mar 09, 2016 3:58 pm

Hi all,

I'm in between surgery for lung mets and for the past few weeks my BM's have really taken a turn for the worse. I just cant seem to put my finger on the cause and have been over my old notes from my reversal just over 2 years ago, I have introduced more veg and fruit over the past six months with no ill effect. I'm struggling with a larger stool followed by a smaller stool and then really loose. So kind of clustering. Sometimes I have to use Loperamide/immodium. Ive also had the odd nightime leak.

Should I try something new maybe the daily enema (need to find out more on this). Or maybe I'm missing a trick with food, anyone got any advice dietary advice.

Lordswood
4/2013 - Diagnosed with Colon cancer aged 35 (no family history) T1N0M0
8/2013 - LAR with temp Ileostomy
12/2013 - Ileostomy Reversal
09/2014 - Clear CT Scan
01/2016 - PET Scan high probability of reoccurance
01/2016 - VATS right lung
03/2016 - VATS left lug
05/2016 - Start CAPOX regime for 6 months
07/2016 - Clean CT scan next scan October
08/2016 - Clear MRI scan following migraines
10/2016 - Finished Chemo & Clear scan, next scan Jan

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

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

Postby tammylayne » Wed Mar 09, 2016 9:53 pm

Hello Lordswood....

Is it possible that you are suffering from constipation being followed by the Big D?? That was most likely my issue back before I started the daily enema, although in my case I could not seem to find a solution. Are you drinking enough water? Eating enough fiber? Many people get relief to this issue by adding in a fiber supplement. My doctor told me he felt that for many of us struggling it was a constipation issue that was the culprit,,,which sounds odd,,,but makes sense at the same time :wink:

Have you spoken to your doctor about your issues? I know that they don't always have real suggestions for us that help....but my surgeon encouragd me to try the daily enema before I committed to a perm colostomy and I was glad I did as it changed my life. I would be happy to share what I do, but perhaps you could try some other things first - ie...drinking more water, eating more fiber, supplments...you just might need a few tweeks to get things back on track...plus I am sure others will offer some great suggestions!!!
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."

Lordswood77
Posts: 37
Joined: Tue Mar 08, 2016 1:30 pm

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

Postby Lordswood77 » Thu Mar 10, 2016 2:37 am

Hi Tammy,

Thanks for the reply your post makes sense. Looking back I would say that my frequency has reduced to maybe a couple of BMs a day, this seems to be the issue.

I'll focus on more water and increase my psyllium intake and perhaps things will improve
4/2013 - Diagnosed with Colon cancer aged 35 (no family history) T1N0M0
8/2013 - LAR with temp Ileostomy
12/2013 - Ileostomy Reversal
09/2014 - Clear CT Scan
01/2016 - PET Scan high probability of reoccurance
01/2016 - VATS right lung
03/2016 - VATS left lug
05/2016 - Start CAPOX regime for 6 months
07/2016 - Clean CT scan next scan October
08/2016 - Clear MRI scan following migraines
10/2016 - Finished Chemo & Clear scan, next scan Jan

Badass
Posts: 1157
Joined: Sun Jan 15, 2012 11:42 am

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

Postby Badass » Fri Mar 11, 2016 8:44 pm

JDMNYC wrote:Hi Jane -

Very encouraging to hear. Did I miss a post or two? :) What made you decide to try the enema? Any issues with transition? I have a little less than two months until I am able to try, so I'd be very interested to hear when you have a moment.

No Imodium for me for a week, but now going several times a day instead of the brutal every other day pattern with Imodium. I like the mental clarity of not taking 8 Imodium a day, but I also like not being in the bathroom constantly. If only there were some other solution . . . :D

Jim

Hi Jim,
Sorry for the delayed response. I decided to try the enema because I did not want to take lomotil and imodium anymore and I wanted absolute predictability with bathroom activity and no urgency. I was also sick of being obsessed with bm's, thinking about what I was eating, worrying about gas and always having that "need to go" feeling. No issues at all with transition. For me it seemed like such a radical move that I had to gear myself up for and then when I actually did it the first couple of times, I wondered why I hadn't been doing it all along. Washing myself out with tap water seems to be a lot more "natural" than taking pills, monitoring my bowels and my food, and all the nonsense I had been putting up with. It has become a new transition to bedtime, the whole thing takes less than half hour start to finish and gets me to have some quiet time at the end of the day. I have no thoughts about the bathroom at all during the day, eat whatever I want with abandon just like I did before cancer. I feel so normal again.

Jane
R.C. 12/23/11 at age 52 T3N0M0
3/1/12 completed Xeloda and radiation
5/4/12 LAR & Ileostomy
6/7/12-10/4/12 6 rounds Xelox
11/27/12 Reversal
7/13/13 1 liver met
8/13 Met resection /hai pump
4/14 Chemo completed (Irinotecan/5fu/fudr in pump)

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

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

Postby tammylayne » Sat Mar 12, 2016 11:35 am

Thanks Jane for.posting your update. I think people hear the word enema and get freaked out. When more of us Enema-ites post success stories i think we can help take the freakiness out of it. It is not for everyone, and many, if not most people that have had a reversal will not need it, but for some, this is a way to get your life back. If this post interests you, maybe gives you a glimmer of a chance of a better quality of life, PLEASE reach out to myself, or anyone that you have read about th
at is doing the daily enema. It could become your life changer too.
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."

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 » Sat Mar 12, 2016 7:31 pm

Badass wrote:I wanted absolute predictability with bathroom activity and no urgency. I was also sick of being obsessed with bm's, thinking about what I was eating, worrying about gas and always having that "need to go" feeling. No issues at all with transition. For me it seemed like such a radical move that I had to gear myself up for and then when I actually did it the first couple of times, I wondered why I hadn't been doing it all along. Washing myself out with tap water seems to be a lot more "natural" than taking pills, monitoring my bowels and my food, and all the nonsense I had been putting up with. It has become a new transition to bedtime, the whole thing takes less than half hour start to finish and gets me to have some quiet time at the end of the day. I have no thoughts about the bathroom at all during the day, eat whatever I want with abandon just like I did before cancer. I feel so normal again.


Thanks Jane -

That pretty much sums it up I think; can't wait to try it. Surgeon still has me waiting, but I feel like my system has been a mess for 15 months now. I want back to normal; I have to be able to leave the house with some confidence.

Does the enema pretty much get you to once a day? How much water are you using?

Thanks again.

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."

MaryannW
Posts: 65
Joined: Thu Jun 04, 2015 7:32 am

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

Postby MaryannW » Thu Mar 24, 2016 9:58 pm

Hi all, I'm wanting to join this thread as I have my ileostomy reversal coming up on 7 April 2016. Excited and nervous. My tumor was 5.5cm in so I'm expecting a rough couple of weeks and then progressive improvement to a new normal, whatever that is for me. I've got all the good stuff to take into hospital with me calmoseptrine, travellers bidet bottle, wipes and Depends. Hoping my surgery goes well and the ride is not too tough.
Dx Feb 2015 RC Stage 2a
Pathology stage 1 (post surgery)
5.5 weeks Xelolda + Radiation
ULAR 25.6.2015
6 Rounds mop up Xeloda
Reversal 7 April 2016


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Google Feedfetcher and 40 guests