Reversal Surgery 3 weeks out- Struggling- please help

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StupidAssCancer
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Reversal Surgery 3 weeks out- Struggling- please help

Postby StupidAssCancer » Fri Feb 07, 2014 11:38 pm

I had my ileostomy reversed Jan 15th. I am stage 3c and my original surgery created a Jpouch. I had my surgery 25 days ago and am still really struggling. Using the toilet 3 x an hour with urgency, however at night I am able to sleep without interuption. I'm taking benefiber, lomotil, and probiotics.
The things I'm struggling with are-
*The acid level in my output is so string it burns like crazy
* my output each bowel movement is very small. The constancy is like toothpaste but flat and ribbon like
* my cancer was very low in my rectum, I experience pain with gas and every BM at the surgery site

Any help you can give would be a god send! I have read every other thread on reversal but am struggling still finding anything that gives me answers. My diet is very bland, no fiber fresh fruits or veggies.
I don't know that I fully understand what to do to improve a little each day? I also am a bit unclear on the Jpouch storage area.
Anyone that has gone through this I would truly appreciate suggestions and help on how to make things better!
Thank you very much!!!
xo,
Alys
Stage 3c Colorectal Cancer
Surgery March 2013 Jpouch Temp Iliostomy
May 2013Chemo Infusions 5-FU Oxi Lev-Allergic
Radiation w/Xeloda Chemo-Allergic
Oct 2013 Reversal of Ostomy Nov 2013 Perm Ileostomy
Feb 2016 Ostomy collapsed moved to other side
Jun 2016 colon removed permanent ileostomy

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CRguy
Posts: 10287
Joined: Sun Feb 10, 2008 6:00 pm

Re: Reversal Surgery 3 weeks out- Struggling- please help

Postby CRguy » Sat Feb 08, 2014 2:01 am

For the " fire in the hole " feeling I used Proctosone / Proctosedyl type meds from the Onc and my GP.
They are available as suppositories .... :shock:
OR topical creams ..... :mrgreen: :mrgreen: :mrgreen:
OR ...... with the convenient and truly enjoyable internal " APPlicator ! " .......... not.... :twisted:

By the time I was in takedown recovery I had already had so many things up my ass I was good to go with ......
just the gentle application of a TOPICAL !!!!! Other folks I know liked the Calmoseptine experience :P

ALSO : just FYI I already had a bidet in the house and use it, used it, will use it ...... will likely renew my vows with it :D

...OR there are "biobidet" toilet sets which will soon become your best friend, to your other end ? :shock:

search here for bio bidet ... or nicola smith.... she BE the bioBidet honcho of da' CClub !
( not really sure that is how she will want me to post this ... BUTT ... she IS !!! )

Bottom's up, Cheers and ... smoooothe sailing my friend
This all gets better with time.

Harmony
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
14 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

jean60
Posts: 427
Joined: Sun Sep 02, 2012 3:47 pm

Re: Reversal Surgery 3 weeks out- Struggling- please help

Postby jean60 » Sat Feb 08, 2014 9:39 am

StupidAssCancer wrote:I had my ileostomy reversed Jan 15th. I am stage 3c and my original surgery created a Jpouch. I had my surgery 25 days ago and am still really struggling. Using the toilet 3 x an hour with urgency, however at night I am able to sleep without interuption. I'm taking benefiber, lomotil, and probiotics.


Sorry to hear you are having a rough time of it, seems it is a different experience for everyone. You mentioned you are taking lomotil and I wanted to ask how much you are taking and if you can tell that it makes any difference at all when you take it? I had a rough patch early on and my surgeon told me to take more lomotil which ultimately made a real difference for me and eventually I was taking one a day. Honestly I thought that was how it would be permanently but now (9 months later) I rarely take one.

I am sure you will get other suggestions and, as I said, the reversal process seems to be different for each of us. You are early in the process and I am glad to read you get to sleep through the night! My own chose the night time as the right time if you get my drift. The sore butt is rough with the frequency you are having....I' had good success with something called Triple Paste.

I really hope this is going to start getting better for you soon.

Jean
Dx Rectal Cncr 5/12
Stage III
5 weeks Chemo (5FU) & Radiation completed
LAR with temporary ileostomy 9/12, complete response
Began FOLFOX 10/12. oxil reduced after tx 1, eliminated after tx 2. Now 5FU.
Finished 1/13
Ileostomy reversal 5/13

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Rob in PA
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Location: Pennsylvania

Re: Reversal Surgery 3 weeks out- Struggling- please help

Postby Rob in PA » Sat Feb 08, 2014 10:28 am

Well, if there is a bright spot it is that you sleep through the night! Lots of folks on here cluster through the night as well.

You've gotten good advice on creams and bidets. You don't want to hear this, but the time frame you speak of seems about normal for when I had my reversal. It just takes time, time, and more time, and the best you can do is learn to control/bear with the side effects of going so much.

Eventually I got into a pattern to where i go in the morning and pretty much let gravity do its thing. It takes me an hour or two each morning to get things going to the point where I can then pop an imodium and leave for the day. Occasionally I'll have to go in the evening but not if i commit the time in the morning till i have emptiness feeling. I know some say its not good to sit on toilet too long, but that is what I have to do. If i got off toilet and wiped every time I THOUGHT i was done, my ass would be bleeding because I'd be back on the toilet crapping again in ten minutes! So I just sit and wait till i have several movements and then clean up at the end. I know sometimes that is hard to sit on toilet when you have stinging going on down there and you feel you need to clean up, but if it isn't burning I just wait and play WOrds with Friends!

I will get better, but prepare for the worst and hope for the best. I am not where i hoped i would be three years out from reversal, but i deal with it and live on.

Best,
Rob
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED

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Rob in PA
Posts: 2005
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: Reversal Surgery 3 weeks out- Struggling- please help

Postby Rob in PA » Sat Feb 08, 2014 10:30 am

Rob in PA wrote:
I will get better, but prepare for the worst and hope for the best. I am not where i hoped i would be three years out from reversal, but i deal with it and live on.

Best,
Rob



Meant to say "it" will get better. .....and it will :)
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED

NWgirl
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Facebook Username: Belle Piazza
Location: Battle Ground, Washington

Re: Reversal Surgery 3 weeks out- Struggling- please help

Postby NWgirl » Sat Feb 08, 2014 11:22 am

For me the first 3 weeks were the worst. I did notice an improvement after that and I hope you do too. I tried lots of things to make my reversal work. One thing I tried was to give up ALL dairy - even if it was an ingredient in something. That helped most with the burning. Giving up dairy wasn't easy but I was disparate so I did it. After awhile you get used to the new way of eating.
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model

ams5796
Posts: 2298
Joined: Fri Feb 06, 2009 10:07 am

Re: Reversal Surgery 3 weeks out- Struggling- please help

Postby ams5796 » Sat Feb 08, 2014 12:22 pm

I think I'd give up the Benefiber too. Fiber supplements seem to make things worse for me even to this day. The concept just never worked for me. It does get better.



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

gtownguy
Posts: 151
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Location: Washington, DC

Re: Reversal Surgery 3 weeks out- Struggling- please help

Postby gtownguy » Sat Feb 08, 2014 12:29 pm

You're about the same place I was one month post-reversal, except that most of my clustering happened at night. I was always exhausted from spending half the night in the bathroom. The soft, ribbon-like output is normal and mine is still like that 4 months later. My surgeon explained that 1) the consistency is due to your body's not being able to extract as much water from the stool as before and 2) the shape is due to the removal of the rectum leaving a much more narrow passageway. I never had a J-pouch so not sure how that affects things.

As for the burning output, that will get better although I still have it from time to time. Unfortunately I really haven't been able to attribute it to anything specific in my diet. I'm taking Benefiber at night and eating oatmeal most mornings - and both have helped somewhat. Definitely get some over-the-counter Calmoseptine ointment - it's the only thing I've found that helps "butt burn." Also, only wash "down there" with the most mild of soaps or shower gel. I found that most soaps with any perfume just irritate the area even more. I still have lots of gas - again mostly at night - and have been popping GasX pills for that.

It will improve and you will eventually get back into some sort of pattern/routine. Things won't ever be quite the same as before, but so far, my "new normal" isn't too bad. Good luck to you!
Sep 12 - dx rectal cancer - stage 3B - T3N1M0
Oct/Nov 12 - 6 wks daily radiation & Xeloda
4 Feb 13 - LAR w/ temp ileostomy
18 Mar 13 - install port
19 Mar - 02 Jul 13- FOLFOX chemo
23 Jul 13 - clean CT scans
26 Sep 13 - reverse ileo & remove port

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StupidAssCancer
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Facebook Username: Alys.Geertsen
Location: Utah

Re: Reversal Surgery 3 weeks out- Struggling- please help

Postby StupidAssCancer » Sat Feb 08, 2014 1:26 pm

Everyone thank you for taking the time to write me and give me suggestions! I know this topic has been covered before however I felt like I had some specific questions and I'm happy now that I dared to post them.
What is the butt burn from is it that the stool is very acidic? If so does anyone know what to do to lower the acidic level? I read somewhere that taking calcium Carbonate with no magnesium helps with that. Does anyone have any experience? How many weeks does the acidic poop last?
I just started the lomotil yesterday so I'm not sure I have anything to say about that yet. How many should I be taking a day? My doctor didn't give me any guidance on this. I did speak with another gal who is going through the same thing and she says she takes six per day.
Currently I am trying to train my bowels to go in the morning. So I am drinking a large glass of water and was drinking 4 ounces of prune juice until today. I felt like the prune juice just kept me going and going and going yesterday so today I am just going to try the hot water and see how things below. I'm also going to be taking the loMotil.
This damn cancer sure has taught me patience. And I wasn't a patient person. I still struggle with us so I'm hoping things will hurry along getting better quickly for me. "Wishful thinking"
Thank you again for all your comments- my mind can run away with me with worry and your answers have all helped!
Stage 3c Colorectal Cancer
Surgery March 2013 Jpouch Temp Iliostomy
May 2013Chemo Infusions 5-FU Oxi Lev-Allergic
Radiation w/Xeloda Chemo-Allergic
Oct 2013 Reversal of Ostomy Nov 2013 Perm Ileostomy
Feb 2016 Ostomy collapsed moved to other side
Jun 2016 colon removed permanent ileostomy

NWgirl
Posts: 6659
Joined: Sat Feb 02, 2008 3:24 am
Facebook Username: Belle Piazza
Location: Battle Ground, Washington

Re: Reversal Surgery 3 weeks out- Struggling- please help

Postby NWgirl » Sat Feb 08, 2014 2:24 pm

For me giving up dairy helped with what you call acidic - I call burning. I know what you're talking about. I also avoided anything spicy, anything with vinegar (no pickles) and sometimes even tomato based sauces which can be quite acidic.
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model

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StupidAssCancer
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Facebook Username: Alys.Geertsen
Location: Utah

Re: Reversal Surgery 3 weeks out- Struggling- please help

Postby StupidAssCancer » Sat Feb 08, 2014 2:32 pm

Yes I learned day 7 tomatoes cooked are a no no, hell no for me!
I'm hoping the burning/ acidic does eventually to away!
I don't want to go around screaming " Fire in the hole" the rest of my life!
xo,
Alys
Stage 3c Colorectal Cancer
Surgery March 2013 Jpouch Temp Iliostomy
May 2013Chemo Infusions 5-FU Oxi Lev-Allergic
Radiation w/Xeloda Chemo-Allergic
Oct 2013 Reversal of Ostomy Nov 2013 Perm Ileostomy
Feb 2016 Ostomy collapsed moved to other side
Jun 2016 colon removed permanent ileostomy

pog451
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Facebook Username: andrew.morgan

Re: Reversal Surgery 3 weeks out- Struggling- please help

Postby pog451 » Mon Feb 10, 2014 5:34 am

StupidAssCancer wrote:I had my ileostomy reversed Jan 15th. I am stage 3c and my original surgery created a Jpouch. I had my surgery 25 days ago and am still really struggling. Using the toilet 3 x an hour with urgency, however at night I am able to sleep without interuption. I'm taking benefiber, lomotil, and probiotics.
The things I'm struggling with are-
*The acid level in my output is so string it burns like crazy
* my output each bowel movement is very small. The constancy is like toothpaste but flat and ribbon like
* my cancer was very low in my rectum, I experience pain with gas and every BM at the surgery site

Three weeks out? Its sounds like you're bang on track to me.

The bad news - You probably have a way to go. The good news - It gets better. It really does.

The first two symptoms are, in my experience, par for the course. they come and go. They are nasty but they get better. You need the softest, most sensitive moist wipes you can find Expensive moist TP is good, but try a few different ones to find the best, they really are VERY different. The best of the best are sensitive baby wipes, but they can cause blockages when flushed in large numbers. You need a good, heavy, ideally zinc-based barrier cream and you need it in volume. I use a European one called "Mirfulan" but youll find lots of tips on suitable brands names in posts elsewhere here. A bidet is heaven, but don't be afraid of hanging your butt over the bath and rinsing with the shower head and some ph-neutral wash lotion.

As far as the pain goes - if you suffer burning that is clearly "further up" your system, have it looked at if it perseveres. I had an ulcer develop at the anastomosis site that was very painful. It also developed into a recurrence, so don't take that lightly.

If you really don't find things getting better (but you sound exactly like me, and mine did get better) there is a bowel training procedure on the web (from Andersomn? someone else will link it probably) that many people have found to be very useful.
09.11 Dx @ 46, uT3uN1M0 G2
11.11 radio+Xeloda
01.12 LAR
03.12 Xeloda
09.12 Liver mets, 2 LN
09.12 Folfox+Avastin
02.13 Resection
04.13 Folfox & Avastin
11.13 Local recurrence
02-07.14 FOLFIRINOX
08.14 Re-rediation
Left us 28.05.2015

davidfarmen
Posts: 3
Joined: Mon Feb 10, 2014 8:25 am

Re: Reversal Surgery 3 weeks out- Struggling- please help

Postby davidfarmen » Mon Feb 10, 2014 8:56 am

I had horrible but burn due to excessive bile acids it went away once I started taking a 4 gram pack of cholestyramine with each meal (3) it binds with bile acids it also causes constipation which helped me with the loose stools most the time no need to wipe it was a real life saver for me I went to 2 packs a day and just today went to 1 a day don't know the out come of one pack a day yet. it is by prescription and used to lower cholesterol. I read that bile acids are reabsorbed in the lower part of the small intestine right where my ileostomy was, once it heals hopefully no more excessive bile acids.

Ehut
Posts: 230
Joined: Wed Sep 26, 2012 4:24 pm
Location: Algonquin, IL

Re: Reversal Surgery 3 weeks out- Struggling- please help

Postby Ehut » Mon Feb 10, 2014 9:39 am

My first week post reversal was basically hell. Not to be too graphic, but it felt like someone stuck a red-hot knife in my backside with every bowel movement. My life did a 180 when I started taking Metamucil. It soaks up the excess bile as well as made the stools more normal. It was like training wheels for my system. Not sure how it compares to Benefiber, but it worked a miracle for me. Using Calmoseptine was also key to helping the process.
Dx 12/11 rectal stage IV w/ 6 mets to liver, age 35
4 cycles FOLFOX 12/11 to 2/12
short course radiation 2/12
rectal/liver resection 3/12, temp ileostomy
8 cycles FOLFOX/FOLFIRI 4/12 to 8/12
ileostomy reversal 10/12
port out 10/13
NED for 8+ years and counting!

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StupidAssCancer
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Facebook Username: Alys.Geertsen
Location: Utah

Re: Reversal Surgery 3 weeks out- Struggling- please help

Postby StupidAssCancer » Mon Feb 10, 2014 10:55 am

Three days ago I had a fellow colorrectal cancer mate message me. She told me about lomotil. Said the urgency and rush toget to the pot would simply go away if I took it. I had some here that I never used with my bag as I liked my Consistency runny so I never used it. I took the Lomotil two days ago and OMG this woman I could kiss her face!!!! She was right those cramping spasm urgency feelings I was having that led me racing to the toilet as if I was running for gold are completely gone. I feel like instantly I have far more control over my bowels and my life then I did pre-lomotil! :D
As for thebut burn I read somewhere that calcium carbonate helps To cut down on the bio which results in less burn. :evil: Has anybody tried using the calcium carbonate? I just bought me some last night and will give it a go today. Thank you thank you again for all of your tips and confidence and sharing your experiences. I know others browse these boards and don't post so not only are you helping me, But I'm sure several others that are browsing for information. You all are awesome thank you!!!
xo,
Alys
Stage 3c Colorectal Cancer
Surgery March 2013 Jpouch Temp Iliostomy
May 2013Chemo Infusions 5-FU Oxi Lev-Allergic
Radiation w/Xeloda Chemo-Allergic
Oct 2013 Reversal of Ostomy Nov 2013 Perm Ileostomy
Feb 2016 Ostomy collapsed moved to other side
Jun 2016 colon removed permanent ileostomy


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