Please help! ileostomy reversed Dr now wants Perm Colostomy

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StupidAssCancer
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Please help! ileostomy reversed Dr now wants Perm Colostomy

Postby StupidAssCancer » Mon Mar 03, 2014 10:00 pm

So I'm in between that rock and a hard spot decision. I had anal cancer, diagnosed one year ago. I had a ileostomy with a jpouch created for 10 months while i went through chemo and radiation. I was recently reversed on Jan 15th. I've been having major complications with my reversal and today met with my surgeon. He confirmed I have "low anterior reversal syndrome" and he doesn't feel it will improve. He said he went lower than he should have with my original surgery as he didn't realize my cancer was as low as it was.
So my question for you or anyone is considering a permanent colostomy bag. Would you mind sharing with me any info, the good bad and ugly as I want to be fully educated before making the decision. I've read the word "irrigation" is this something that is safe to do daily? I got the hang of my ileostomy and was able to handle it with no problems by the end. Is a colostomy the same, different, better? Is there anything to consider negative prior to making this life decision?
Thank you all for any help you can give me. I'm really struggling here. I'm in so much pain. Having bm's 40+ times a day, control only sometimes. But the pain is unbearable. :(
xo, Alys
Last edited by StupidAssCancer on Mon Mar 03, 2014 10:39 pm, edited 1 time in total.
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

Peloton
Posts: 42
Joined: Mon Feb 10, 2014 11:13 pm

Re: Please help! ileostomy reversed Dr now wants Perm Colost

Postby Peloton » Mon Mar 03, 2014 10:35 pm

I'm sorry to hear about your reversal problems. I don't have a permanent colostomy, but many people here do and I'm sure they can provide insight. There's also the United Ostomy Association of America, which I found very helpful when I had my temp ileo.

http://www.ostomy.org

I'm certainly not a doctor, but if you had your reversal on January 15th, it seems a bit early to consider "reversing the reversal." I was still having a lot of issues two months post my reversal (my tumor was 4 cm above the anal verge).

Things eventually got better for me, but I was still having issues about a year out. Mostly, I would have a big cluster event 3-4 times a week, which usually wouldn't start until 11 p.m. at night and would typically last 2+ hours. I tried changing my diet and eating routine, and nothing worked.

Finally, I started doing a daily enema, and it changed my life. I spend 30-60 minutes each morning doing an enema and can go about my day without having to worry about running to the bathroom. It's certainly not a pretty solution, but it gave me my life back.

I'm not suggesting it's the right solution for everyone, or for you in particular. Just want to make sure that you're aware of all options before making a decision.

Best of luck.
Diagnosed Stage 3 rc; 30 y/o M - 8/10
Chemo Rad - 8/10 through 10/10
FOFLOX 4 rounds - 10/10 through 12/10
LAR - 1/11; 12 out of 13 nodes positive, stage 3c; T4N2M0; temp ileo
FOXFOX 8 rounds, 6 w/ Avastin - 2/11 through 5/11
Ileo reversed - 7/11
NED

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StupidAssCancer
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Location: Utah

Re: Please help! ileostomy reversed Dr now wants Perm Colost

Postby StupidAssCancer » Mon Mar 03, 2014 10:44 pm

I agree I am very early into this, only 6 weeks. My doctor did say time could be on my side, however he did confirm he went lower than he probably should have. He said he's never gone so low before. I have tried an enema 3 times," i enima'd daily prior to getting cancer." Because my anastamosis is so low, I can't get a enimas to go in. I can get the tip in but when I squeeze it I get 1/8th of the enima in and then it stops. Nothing else will go in? Any tips? It must be because of my surgery location is all I could think?
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

Lee
Posts: 6200
Joined: Sun Apr 16, 2006 4:09 pm

Re: Please help! ileostomy reversed Dr now wants Perm Colost

Postby Lee » Mon Mar 03, 2014 10:58 pm

StupidAssCancer wrote:
So my question for you or anyone is considering a permanent colostomy bag. Would you mind sharing with me any info, the good bad and ugly as I want to be fully educated before making the decision. I've read the word "irrigation" is this something that is safe to do daily? I got the hang of my ileostomy and was able to handle it with no problems by the end. Is a colostomy the same, different, better? Is there anything to consider negative prior to making this life decision?
s


I gave my surgeon carte blanc in the beginning, so I knew I was getting a permanent colostomy. Best decision I ever made!!! Radiation was the worst for me, made surgery & chemo a breeze!!! Please remember this was 10 yrs ago. Radiation destroyed 2/3 of my rectal muscles and anytime I ate, I had 1 hr to finish my chores, get home and spend the next 3-4 hrs on the toilet without rectal control. There were many days, my first meal of the day was at 3:00 or 4:00 pm when I knew I was home for the day. Don't even ask about morning problems and the ## of times I DID NOT MAKE IT TO THE TOILET!!!!

Getting the colostomy GAVE ME MY LIFE BACK!!! I now can eat what I want and not worry how it could effect my bowels. I can go on all day trips and not worry about what I eat (ie plane travel plans or kids all day field trips). I can play in the ocean, spend a day on a horse back and not worry about accidents!! I don't have to worry about what I eat and how certain foods can effect me. . When I'm on vacation, I want to enjoy the local food with out accidents or spending the next day on the toilet. . I always make sure I have ostomy supplies with me.

Again, for me "the best decision". I also feel it is a big reason I am alive today, I gave my surgeon carte blanc, just get all the cancer, & I feel she succeeded in that deptartment!!

Hope this helps,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

Peloton
Posts: 42
Joined: Mon Feb 10, 2014 11:13 pm

Re: Please help! ileostomy reversed Dr now wants Perm Colost

Postby Peloton » Mon Mar 03, 2014 11:02 pm

StupidAssCancer wrote:I can get the tip in but when I squeeze it I get 1/8th of the enima in and then it stops. Nothing else will go in? Any tips? It must be because of my surgery location is all I could think?


It could be because of the surgery location. My anecdotal experience from lurking this board for 4+ years is that, the lower the tumor, the more likely someone is to have post-reversal problems.

With that said, I needed some practice before I was able to effectively and efficiently administer an enema. You'd think it would be easy. I literally watched videos online on how to administer an enema (yes, they do exist, and yes, I made sure to erase my browsing history).

It took me about 4 weeks to get into a good daily enema routine. I use fleet bottles and it takes about 10 to get me completely cleaned out. I started off using the solution that came with the fleet bottle, but that made things worse. I quickly learned to just use tab water.

I've been doing this for a year and a half, and some days it just doesn't seem to work as well. Not sure why that is, but those days are now few and far between. My biggest piece of advice is to try and relax while you're administering the enema. I think I was tensing up (which is natural) and that was preventing water from getting where it needed to go.

If you do a search for "daily enema," you should come across a thread with people discussing various routines and tips.
Diagnosed Stage 3 rc; 30 y/o M - 8/10
Chemo Rad - 8/10 through 10/10
FOFLOX 4 rounds - 10/10 through 12/10
LAR - 1/11; 12 out of 13 nodes positive, stage 3c; T4N2M0; temp ileo
FOXFOX 8 rounds, 6 w/ Avastin - 2/11 through 5/11
Ileo reversed - 7/11
NED

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

Re: Please help! ileostomy reversed Dr now wants Perm Colost

Postby NWgirl » Mon Mar 03, 2014 11:08 pm

A couple of years ago I wrote a 3 part blog called 'The Colostomy Conundrum'. If you go to the Blog section of this site and search on 'colostomy' you'll see it. Staci also did a blog on irrigation that will pop up.

I lived with a less than successful reversal for almost two years before opting for a permanent colostomy. Best decision I ever made. Life is too short to spend that much time house bound and in pain.
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: Please help! ileostomy reversed Dr now wants Perm Colost

Postby StupidAssCancer » Mon Mar 03, 2014 11:48 pm

Thank you!!! "Taking a big breathand wrapping my little arms around each one of you" :) just knowing your here and sharing your story helps! I will go visit the blog. Yes, I agree getting my life back is my number 1 goal. I have children and I don't want to be in pain and checked out for the next 1,2 3+ years of their lives.
It won't hurt for me to give the enima route another try. I'll give it a go tomorrow. I fid like you and dumped the fleet, water only. made the same mistake on the first try and cramped like crazy!I'm unsure why the water won't go "in" I will make it a point to ask my surgeon if there is a reason "blocking" a enima from working.
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

User avatar
StupidAssCancer
Posts: 69
Joined: Sun Sep 29, 2013 9:24 pm
Facebook Username: Alys.Geertsen
Location: Utah

Re: Please help! ileostomy reversed Dr now wants Perm Colost

Postby StupidAssCancer » Tue Mar 04, 2014 1:30 am

Nwgirl- I just read the blogs- oh my gosh!!! Thank you, thank you for sharing your darkest moments and your brightest! Thank you for helping me feel human! Thank you for helping me make a decision. And thank you for sharing your courage!
I'm so happy you found me tonight, you have truly been an answer to my prayers.
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

Staci's team
Posts: 386
Joined: Fri Sep 25, 2009 9:43 am
Location: Canfield, Ohio
Contact:

Re: Please help! ileostomy reversed Dr now wants Perm Colost

Postby Staci's team » Tue Mar 04, 2014 8:21 am

Glad you gave Belle a shout out for the blogs....she has a knack for helping break through the hard stuff and helping others get their heads around difficult situations.

So to give you some more encouragement, my wife was diagnosed at 32 and has now had a permanent ostomy for almost 5 years -- she's the Staci who Belle mentioned in, I think, the third blog post. A couple of summers ago, she said "hey, this is me - if I want to wear a bikini, dammit I'm going to!" So take a look....even ostomates can get away with a stoma cap and a bikini.

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=43363#p307922

And then you get to have even more fun around here in NE Ohio when the weather turns to snow....after I posted this last fall, Rob in PA came up with the perfect name of "Osty the Snowman."

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=44606

Hope this helps with what is certainly a difficult decision to consider.


Chris
Husband to Staci, diagnosed at age 32
Clinical dx Stage II/III rectal cancer, 7/2009
APR surgery 11/09 leading to...
Pathological dx Stage IIIB, ypT3N1M0, 11/2009
http://www.caringbridge.org/visit/staciwills
Member of The Colon Club's Board of Directors

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

Re: Please help! ileostomy reversed Dr now wants Perm Colost

Postby lauragb » Tue Mar 04, 2014 9:23 am

I just wanted to share with you some enema information in case you want to try that route again. I use them almost daily as my situation following my reversal was also unacceptable. I was never able to use the fleet bottles either, could not get enough water in and even when using them a few times, still ended up with gas and needing to go later in the day. So I now use the traditional bag type enema with a tip, tubing and a clamp. The water flow is controlled with the clamp, slow steady flow working best but can be stopped when there is cramping and restarted when it subsides. I actually ordered a pediatric tip since the area is so tender still from radiation.

Anyway, this is just another option. It's not perfect but I am able to do pretty much what I want. I do the enema in the evening and then go about my day without issues on most days.
My tumor was very low but it sounds like yours was even lower so maybe the enema isn't your best bet.

The good news is there are things you can do for better quality of life, whether it be daily enemas or getting a colostomy.

Goodluck.
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

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

Re: Please help! ileostomy reversed Dr now wants Perm Colost

Postby NWgirl » Tue Mar 04, 2014 10:21 am

You are so welcome - I'm glad you found some value in the reading. :D

Fast forward to today - NO regrets about getting my colostomy. My life is SO NORMAL. I can do anything I want, whenever I want to do it. I have my freedom. It takes me about 5 minutes to change my bag. I've never tried irrigating because I'm just too lazy - but people who do irrigate tell me it is very empowering and gives them even more freedom. The nice thing about the colostomy is that I'm much less likely to get that terrible burning sensation on my skin when poo gets on it (next to the seal). With the ileostomy that was a much bigger problem. The output with the colostomy is usually thicker - so easier to manage. Sometimes when I get diarrhea from the Irinotecan it gets to liquid diarrhea, but it's still not as difficult to manage as it was with the ileostomy - so overall I think a colostomy is much easier to live with. I have no restrictions on what I eat either.
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

debbiedel
Posts: 12
Joined: Tue Mar 04, 2014 8:08 pm

Re: Please help! ileostomy reversed Dr now wants Perm Colost

Postby debbiedel » Tue Mar 04, 2014 8:55 pm

Belle, thank you for your blog. I enjoyed reading about your journey. My temp ileostomy will probably be permanent and will be a part of me forever. I am grateful for the freedom it has given me.

Alys, I wish you only the best. For me, a stoma is better then the alternative.
Deb
Stage 1 rectal cancer 8/2013
LAR surgery
Temp Ileo

jeanette57
Posts: 1004
Joined: Sun Mar 04, 2012 11:40 am

Re: Please help! ileostomy reversed Dr now wants Perm Colost

Postby jeanette57 » Wed Mar 05, 2014 2:27 am

Love my ostomy bag (George is stoma and bag). It made my life so easy and added to all the things I can do without living in the restroom. I can do most things with bag and life is good. Don't play with this - get it done before u run out of options.
T3 N0 M0 -1-4-12 to 3-2013- NOW stage 4 terminal
mets Lungs & bone - halo on head (not to many can see unicorn horn)
chemo for life or until I quit

JJ2212
Posts: 268
Joined: Mon Oct 14, 2013 3:54 pm
Location: Montréal, QC

Re: Please help! ileostomy reversed Dr now wants Perm Colost

Postby JJ2212 » Wed Mar 05, 2014 10:07 am

I was getting ready to respond to you but after reading Belle's posts, i don't have much to add. Ditto to everything she said about the colostomy.

I'm actually relieved that I was never given a choice regarding a permanent colostomy, because my tumors were so low. Had I had the choice, i probably would have struggled to decide and perhaps gone the temporary route, cause the thought of a bag for the rest of my life was a bit daunting, to say the least. But my colostomy did exactly what you're hoping for, it gave me my life back! Gone are the 25+ trips to the bathroom day and night! I can eat what I want and haven't had any issues so far. Having the colostomy during chemo has also been a blessing. No running to the bathroom with unexpected bouts of diarrhea, although it is a bit odd sometimes to be pooping in public when you're out and about...

I use disposable bags and it takes me less than 5 minutes per day. I've never tried irrigation, but things are going so well that I don't see the point for me personally.

I know everyone is different and results can vary, but My wish for you is to find relief in whichever route you take. Good luck!
Rectal cancer dx 04/13 @ 42, MSS, KRAS positive
T3N2M1 (1 lung met)
5 weeks xeloda+radiation finished 07/13
APR 9/13 (permanent colostomy), 27/31 nodes positive :-(
12 rounds of FOLFOX 04/14
Lung met growth 11/14
26 cycles Regorafenib (Stivarga) from 11/15 to 01/17
New lung met and chest/neck lymph nodes 01/17
1 cycle Folfiri

tammylayne
Posts: 2177
Joined: Fri Jul 16, 2010 9:24 am

Re: Please help! ileostomy reversed Dr now wants Perm Colost

Postby tammylayne » Wed Mar 05, 2014 9:55 pm

Like so many others...I have been where you are. I met with my surgeon to discuss my options after a year of 20 - 30 times a day running to the washroom, being trapped in public bathrooms...no getting enough sleep...etc...etc...He suggested trying the daily enema before making the choioce of a colostomy. I figured I had nothing to lose, although I didn't hold out much hope that it would work. I'm glad I tried,,,almost a year now and things are pretty darn good.

I am a big believer that it doesn't matter how you go,,,you go because you have to....it doesn't deserve to be an issue, a stress or a problem. If you do a daily enema and it gets the job done - great. Irrigation is the answer- awesome. Perm colostomy gives you your freedom - terrific.

It is a big decision. Hopefully you are able to look at all of your options, try them all if you can - then decide what works for YOU. Life is too short to spend our days in pain, locked in our homes or unhappy because of POOP! :shock: It does seem early in the process to rush back into surgery...I was told your first 6 months can/will be filled with huge improvements, but your doctor knows your situation best.

Good luck with your decision, but above all, be kind to yourself....
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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