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

Please feel free to read, share your thoughts, your stories and connect with others!
drw
Posts: 45
Joined: Sun Mar 30, 2014 4:43 am

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

Postby drw » Fri Mar 25, 2016 6:15 am

Good luck, Mary Ann :)
4/14 dx rectal cancer at 45 yoa
4/14 transanal excision
6/14 lar - 2 positive lymph nodes stage 3
8/14 started radiation and xeloda
1/15 completed chemo
2/15 Ned :)
3/15 reversal

MaryannW
Posts: 64
Joined: Thu Jun 04, 2015 7:32 am

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

Postby MaryannW » Fri Mar 25, 2016 7:10 am

Thank you drw. Fingers crossed.
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

Badass
Posts: 1156
Joined: Sun Jan 15, 2012 11:42 am

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

Postby Badass » Sat Mar 26, 2016 4:44 pm

JDMNYC wrote:
Thanks

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

Thanks again.

Jim

Hi Jim,
Once again, sorry for the delayed reply.
Yes, I am virtually always once a day. I have had the rare weird day where I have to go once or twice urgently during the day but I think that was due to antibiotics or a stomach bug. Also a few times, I have had to go a half hour after completing my enema but the norm really is one 20 minute session on the toilet after the enema.
I used to measure the water (2-3 cups) but now I just haphazardly fill the bag halfway to three quarters. I
Tammylayne was a wonderful source of information and has a long thread on this topic if you want a really detailed description of a transition to mighty enem-ite. I would also be happy to share my experience, thoughts on equipment etc.

Keep us posted!

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)

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 Mar 30, 2016 10:37 am

[/quote]
Hi Jim,
Once again, sorry for the delayed reply.
Yes, I am virtually always once a day. I have had the rare weird day where I have to go once or twice urgently during the day but I think that was due to antibiotics or a stomach bug. Also a few times, I have had to go a half hour after completing my enema but the norm really is one 20 minute session on the toilet after the enema.
I used to measure the water (2-3 cups) but now I just haphazardly fill the bag halfway to three quarters. I
Tammylayne was a wonderful source of information and has a long thread on this topic if you want a really detailed description of a transition to mighty enem-ite. I would also be happy to share my experience, thoughts on equipment etc. [/quote]

Thanks Jane! Very encouraging!
- 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: 695
Joined: Sun Apr 12, 2015 12:16 pm

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

Postby JudeD59 » Thu Mar 31, 2016 1:32 am

Hi, all. I'm at six weeks from reversal today. It's been a long, unpredictable six weeks. I'm using a bidet, alcohol free wipes, and creams, but there have still been plenty of aching butt days and nights. Lots of rectal spasming that feels like I'm back in the delivery room trying to give birth again only this time to a tiny poo baby. Frustrating to sit on the toilet for twenty minutes and not have anything come out after the first five minutes only to flush, walk to the sink, and immediately have to rush back to the toilet because NOW it's ready. I've really had a mixed bag so far--I've had some days when I've had substantial poos and have cleaned out in only a couple of quick visits and I've had lots of days where I am back and forth to the bathroom 15-20 times. I've only had diarrhea once and that was in the first week. I haven't had any accidents or smears yet (knock on wood) but I've definitely had urgency. I have had plenty of hours sitting on the toilet crying and pounding my fist on my knee because of the pain, but those times seem to be happening less often.

The spot where my intestines were rejoined still gets painful. I can feel a hard lump through my skin at that spot often and I think gas and stool gets trapped there. The oncologist who examined me today could feel the lump, too. I'm still sticking with a pretty bland diet, eating mostly white fish, plain pasta, rice, canned fruit, potatoes, oatmeal, etc. I'm trying to test drive a new food now and then, but even while on the bland diet, some days were good and others were miserable, so it's hard to know if it's what I ate or if it just would have been a bad day anyway. The surgeon gave me the go ahead to use Immodium when I'm going to travel or be out for the day and need to know I won't need to sit in a strange bathroom for hours. I have always tended toward constipation, so I've found that 1/2 to 1 Immodium slows things until I get home, but doesn't stop me up so bad that I'm miserable. If I take more than that, I'll have painful clustering all day the next day. I'm allowed to use Metamucil but all the choking warnings on the label freak me out. I'll get past it and probably try it beginning next week.

Creams do help the sore butt as does the bidet and a warm soak in the bath, but what helps me most seems to be sitting on a heating pad. Changing position on the toilet also is very helpful. I still use my Squatty Potty, but find that leaning forward almost completely with my chest on my knees gets things going and then leaning back with my spine arched against the back of the toilet finishes the job most times. Since I have hemorrhoids and a prolapsed bladder, I try very hard not to strain, but sometimes my body just spasms so violently on its own and I expect to see my insides hanging outside from the force of it. It's actually scary how strong it is sometimes and produces either nothing or a very small poo.

Anyway, I'm still hanging in there. I've had my share of "I can't do this" days and some "Things are getting a little better" days, but I don't have any predictability yet the way some members know they'll have to go an hour after eating or they'll be okay all day and spend hours in the bathroom every evening. I haven't reached that milestone yet.

Hope all is going smoothly for the rest of you.

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

justin case
Posts: 4135
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

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

Postby justin case » Fri Apr 15, 2016 5:20 pm

JudeD59 wrote:Hi, all. I'm at six weeks from reversal today. It's been a long, unpredictable six weeks. I'm using a bidet, alcohol free wipes, and creams, but there have still been plenty of aching butt days and nights. Lots of rectal spasming that feels like I'm back in the delivery room trying to give birth again only this time to a tiny poo baby. Frustrating to sit on the toilet for twenty minutes and not have anything come out after the first five minutes only to flush, walk to the sink, and immediately have to rush back to the toilet because NOW it's ready. I've really had a mixed bag so far--I've had some days when I've had substantial poos and have cleaned out in only a couple of quick visits and I've had lots of days where I am back and forth to the bathroom 15-20 times. I've only had diarrhea once and that was in the first week. I haven't had any accidents or smears yet (knock on wood) but I've definitely had urgency. I have had plenty of hours sitting on the toilet crying and pounding my fist on my knee because of the pain, but those times seem to be happening less often.

The spot where my intestines were rejoined still gets painful. I can feel a hard lump through my skin at that spot often and I think gas and stool gets trapped there. The oncologist who examined me today could feel the lump, too. I'm still sticking with a pretty bland diet, eating mostly white fish, plain pasta, rice, canned fruit, potatoes, oatmeal, etc. I'm trying to test drive a new food now and then, but even while on the bland diet, some days were good and others were miserable, so it's hard to know if it's what I ate or if it just would have been a bad day anyway. The surgeon gave me the go ahead to use Immodium when I'm going to travel or be out for the day and need to know I won't need to sit in a strange bathroom for hours. I have always tended toward constipation, so I've found that 1/2 to 1 Immodium slows things until I get home, but doesn't stop me up so bad that I'm miserable. If I take more than that, I'll have painful clustering all day the next day. I'm allowed to use Metamucil but all the choking warnings on the label freak me out. I'll get past it and probably try it beginning next week.

Creams do help the sore butt as does the bidet and a warm soak in the bath, but what helps me most seems to be sitting on a heating pad. Changing position on the toilet also is very helpful. I still use my Squatty Potty, but find that leaning forward almost completely with my chest on my knees gets things going and then leaning back with my spine arched against the back of the toilet finishes the job most times. Since I have hemorrhoids and a prolapsed bladder, I try very hard not to strain, but sometimes my body just spasms so violently on its own and I expect to see my insides hanging outside from the force of it. It's actually scary how strong it is sometimes and produces either nothing or a very small poo.

Anyway, I'm still hanging in there. I've had my share of "I can't do this" days and some "Things are getting a little better" days, but I don't have any predictability yet the way some members know they'll have to go an hour after eating or they'll be okay all day and spend hours in the bathroom every evening. I haven't reached that milestone yet.

Hope all is going smoothly for the rest of you.

Judy

Yes, 4 years out. At 2AM I had the do I fart, or head to the bathroom blues :roll: In my wisdom, as sheets became expensive during the early days, I arose from the best sleep I've had in days, ( Work Pressure), and started my 4 hour round trips to the restroom. As this used to be an every night indulgence, I am pleased to announce, I'm down to every 4 or 5 months, that I can fart most of the time with no displeasure to me. Again, I must admit, my co-workers , are not particularly available sometimes :shock:
Bro Nut
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

Tomod
Posts: 1
Joined: Fri Apr 22, 2016 2:33 pm

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

Postby Tomod » Tue Apr 26, 2016 6:36 pm

Hello All,

I had my reversal surgery on Feb 12th and have had the "perfect storm" of issues since then. Reversal went smooth, had it on a friday and was home on monday. Many trip to the bathroom starting on the saturday after surgery caused my bottom to become extremely sore and raw. I went to my family doctor and the CR doctor decided I could start Imodium for bulking reasons. At the 5 week mark I was diagonsed with CDiff even though I really didn't have any of the normal symptoms (no diahrea, blood, fever, stomach cramps and stool sample was formed). I did the round of Flagyl and Vancomicin. Two weeks later, second sample was still positive. I had an FMT done two weeks ago and I am waiting to be tested again to determine if the CDiff is gone. I was also diagonsed with a fissure which does not make the numerous trips to the bathroom any easier.

I have been dealing with a lot of the normal issues I have been reading about on this board. My most pressing issues include the following:
-- Cluster Movements - pre FMT would last upwards of 10+ hours at times and on a daily basis. Post FMT have generally been half or better but still daily. Only a "piece" of stool usually!!!
-- Urgency & Frequency - especially during cluster periods.
-- Sore Rectal Area - going too many times and fissure; have used all types of cream.
-- Never feeling like I empty - small "pieces" throughout cluster.

I have a CR appointment tomorrow and will be asking my doctor to possibly provide a good recommendation of a GI doctor to assist with the CDiff and FMT issues while still receiving input from my CR. He basically told me that "everything inside looks great" and that if the FMT did not work, he would recommend a 2nd opinion. I am currently taking 2-3 doses of Metamucil and an occassional Imodium to try and get some relief from the bathroom trips. The long cluster periods become very overwhelming (and sore) which I'm sure you all are aware of. I WOULD CERTAINLY APPRECIATE ANY INSIGHT ABOUT ANYONES SUCCESS WITH ELIMINATING THE CLUSTER MOVEMENTS, if there is any!!!

Continued good luck to all who have successfully completed this phase of their process. my thoughts and prayers go out to everyone dealing with issues regarding their reversal and those about to undergo the reversal.
THANKS,
Tom O'D.


April 2015 - Diagnosed with stage 3 low rectal tumor
May & June 2015 - Xeloda & Radiation
July 2015 - Surgery and Ileostomy
Aug thru Nov 2015 - 8 rounds of Folfox
Feb 2016 - Reversal

RichB
Posts: 5
Joined: Mon Mar 21, 2016 1:26 am

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

Postby RichB » Sat Apr 30, 2016 6:44 pm

Hi

I am not used to this forum. I have written 2 replies both of which have disappeared on me. This is v3.

I am like you - ULAR op in early Mar, symptoms you describe.

Surgeon said recently:

1 micolette enema every morning on wake up.
2 Take 2 loperimide tabs with every meal

Result is that no poo all day after enema. Makes me much happier and more confident. No more sore bum.

Will worry about long term effects later.

Cheers

lauragb
Posts: 890
Joined: Sun Aug 28, 2011 5:25 pm

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

Postby lauragb » Sat Apr 30, 2016 9:11 pm

Hi all! I just opened up this thread after responding to a couple of other posts about bowel issues. I just want to say I am still using the daily enema and am happy with my quality of life as a result. It is a choice that many of us make. I too, like to control when I go so I can go about my life without being fixated on the bathroom all day long.

I'm glad others are having good results. Not everyone feels the need or wants to do enemas. We each have to find what works for us individually.

Good luck to all on finding what works.
RC 3B 7/2011 @ 53
Chemoradiation 5 weeks 8/11
LAR-Hysterect-temp ileo
pCR, 0/23 nodes
Folfox 1/12, Xeloda 2/12 to 5/12
Reversal 5/12
SBO,lysis of adhesions 12/12
NED 11/12, 11/13, 6/16

MaryannW
Posts: 64
Joined: Thu Jun 04, 2015 7:32 am

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

Postby MaryannW » Sun May 15, 2016 10:46 pm

I'm five weeks out from the reversal and struggling a bit like everybody else has at one time or another. It is incremental improvement that I notice more in weeks and months rather than days. I'm one of those ones that falls somewhere in between really bad and possibly good. My urgency is getting better, I don't have diarreah and I've never been incontinent except in the first week. I'm also able to sleep through to about 5-6am each night without having to get up to toilet most nights. My biggest problem is clustering passing multiple (about 10 times) firmish 'milk duds' I think they are called, before getting to more formed stools. I'll have a day when I cluster these firm small movements and then have a couple of days of a good clean out of reasonably formed motions in the morning (about 6 motions) and then gradually building up to two or three lightish BMs in a day for two or three days followed by the dreaded cluster. I'm working on trying to loosen motions in the days when I'm only having two or three lightish BMs to even things out to make the clusters less traumatic. They are tiring and painful. I'm taking a dose of metamucil at night and in the morning and concentrating on soluble fibre - doing all the things that might work but it doesn't stop the clustering. I am trialling 1 ounce of prune juice with breakfast on those light days to see what happens, hopefully that will provide improvement. Is it worth trying Heather's Tummy Fibre as an alternative to Metamucil? I'm also being careful with diet porridge or wheatbix and pureed fruit for breakky, wholemeal avo and cheese sandwich for lunch, chicken or fish and soluble veg for dinner. I have lactose free light milk sparingly, and very little sugar. I take a probiotic each day and walk a couple of kms each day.

What else can I try that people have had success with? Or is this a question of it will get better in time? I just hate the intensity of the clusters and feel there must be a way for this to even out. Grateful for suggestions.
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

tarheelmom
Posts: 146
Joined: Mon Mar 07, 2016 5:55 pm

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

Postby tarheelmom » Mon May 16, 2016 9:52 am

Question for all who have had reversals - how long did it take for you to go back to work? My reversal is next month, and I have to start planning my work schedule (sedentary job). Since I am Stage 1, I have not had chemo or radiation either pre or post the ileostomy. I came back to work within two weeks of the ULAR, but if the recovery from the reversal is more difficult, I don't want to set the expectation that I will be back at work as quickly. Any input is appreciated?
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

Rebequita
Posts: 18
Joined: Fri Jul 10, 2015 6:54 pm

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

Postby Rebequita » Mon May 16, 2016 9:00 pm

Hi,
I am 3.5 weeks out from my reversal. I was able to return to work 1.5 weeks following my surgery. I took 3 weeks off following my LAR for a frame of reference. I've had two 'bad days' where the clustering became unbearable at work and l had to leave, but otherwise I've managed fine.

Best of luck with your upcoming reversal. It's another healing process but I am noticing incremental improvements and I do not miss the bag! My surgeon told me to be patient, and to expect improvements up to 12-18 months post-surgery.
6/15 Diagnosed RC Stage IIIb at age 38
7/15 Neoadjuvant Radiation and Xeloda
10/15 Lower Anterior Resection and temporary ileostomy; tumor shrunk to "in situ" and removed with clean margins; 0/19 nodes positive for cancer
11/15 Began 6 rounds of Oxaliplatin infusion/oral Xeloda
12/15 Negative for Lynch
3/16 NED
4/16 Ileostomy reversal
8/16 NED

Ilovemyboys
Posts: 5
Joined: Wed Apr 27, 2016 1:27 am

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

Postby Ilovemyboys » Tue May 17, 2016 1:27 am

I'm relatively new to this forum and have found a lot of useful information. More importantly I'm thankful to be able to read all the encouragement, support and hope that permeates through the posts. Thank you everyone for being so open about your experience. It's a huge help to the new people around here.

Mister Wu
Posts: 64
Joined: Sat Sep 27, 2014 6:08 pm

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

Postby Mister Wu » Sun May 22, 2016 10:17 am

This is one of many valuable threads on this message board.

Señora is 10 months out from her reversal. She is doing well and can eat most anything these days.

She does get reminded every now and then that she had most of her rectum and some of her colon removed.

Always good to keep this thread on the first page...
7/14 Mrs. Wu dx rectal cancer T3N0M0
completed CRT 10/29/14
Filter placed in vena cava for clot 1/18/15
Resection and temp ileostomy 1/22/15
2/4/15 path report T2N0M0
6/22/15 flex sig. Reversal 7/24/15 obstructed bowel 9/3/15
11/24/15, 2/23/16, 6/28/16, and 9/20/16 NED

tammylayne
Posts: 2143
Joined: Fri Jul 16, 2010 9:24 am

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

Postby tammylayne » Tue May 24, 2016 10:37 am

If I can add anything here, it is to be patient those first few months. Not days or weeks, but be kind to your self for two to three months. You will see a major difference by the end of month three. Too many new reversalites take their results from the first few weeks and panic that this is as good as it gets.....please don't let yourself do that. Justike very other part of this journey, you are doing a marathon not a sprint. By six months you will probably see the majority of your improvement, but most surgeons will tell you this 'can keep improving for at least a year. Whether the improvement is what you are hoping for...hard to say. Be prepared for a new normal, keep an open mind and be patient. Easier said then done, but look how far you have come!! You can do this!!!
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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