Please help! ileostomy reversed Dr now wants Perm Colostomy

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jeanette57
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Re: Please help! ileostomy reversed Dr now wants Perm Colost

Postby jeanette57 » Thu Mar 27, 2014 9:54 am

Alys

I am not sure why??? They (wound nurse) had all of us name our stoma. Mine is George! It made the transition 100 possible and my self image is better. Yes, I had to start wearing layers as George hangs out of my normal shirts so I do the "teen" thing and have a long undershirt. All my family and friends refer to George - so I don't have to say "oh I have to empty my sh*t bag" I say George needs my attention. They all know what that means.
Good Luck!
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

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 » Thu Mar 27, 2014 10:15 am

I know how much you have struggled with this decision. I know some may think it's too early - but even though I had a lot of pain early on - and things did get better; I wouldn't have described the pain as excruciating as what you have. Your situation seems different (of course every situation is unique); but you just shouldn't have had THAT MUCH PAIN - even in the beginning. Something is just not working - as you clearly understand.

As for how others will view you, trust me - they will look to you for guidance - you set the standard for how you are viewed and treated. If you show acceptance, confidence and strength; if you show that this is just something you had to do in order to live a happy life; if you show that you are happy with your decision - people will follow along accordingly. Not saying that people are sheep - but okay, sometimes they are - lol! But seriously - most people won't know how to react - it is up to you to show them that you are happy and confident in your decision. It's okay to let them know how much you struggled and how difficult this decision was to make. People need to be educated about ostomies. Most people just don't understand because they've never (knowingly) met anyone with an ostomy or really understand what brings people to this place in life.

In any event, I'm really proud of you. I hope that your surgeon can do this laproscopically - simply because it's so much easier as far as healing. But in any event, you can know one thing for sure - healing from the surgery WILL get better every day. Something that unfortunately hasn't happened with your reversal.
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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Location: Utah

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

Postby StupidAssCancer » Fri Mar 28, 2014 12:11 pm

Ok I'm back one last time :)
I made the final decision yesterday with my surgeon to go with a permanent Ostomy! Whew! Now that I've made that decision I feel 100% confident in it and I know it's the best decision for me. Funny enough my surgeon even agrees. He said he doubts with as low as he had to go to get clean margins that I would ever have any improvement or quality of life.
So without further to do I'm scheduled April 16th for the big day.
:?: Now my question- :?:
My surgeon is leaving it up to me whether I want a colostomy or ileostomy? I have no idea which to choose! I got along just fine with my ileostomy however knowing this is going to be long term as in forever would I be smarter to elect a colostomy?
Can anyone chime in? Let me know your thoughts and share your knowledge with me?
Thank you!!! :D
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

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 » Fri Mar 28, 2014 12:24 pm

If it's possible, I'd definitely opt for the colostomy. It makes for a thicker output (less liquid); which has two advantages. #1 - much less chance of it leaking onto your skin and burning the area around your stoma. Even if it does get on your skin, it's going to itch a little - but it's nothing like that battery acid feeling when my ileostomy used to get onto my skin. And #2 - less emptying of the pouch. When I had my ileostomy I basically had to empty it every time I peed - which was okay; but with the colostomy I generally only empty 1-2 times a day. It's much easier to deal with.

Make sure you have a good WOCN Nurse mark one if not two possible options for the stoma placement. When I opted for my permanent colostomy, I'd had 2 hernia repairs done since my initial surgeries - with mesh; so options were a little more limited - not to mention scar tissue to contend with. My nurse marked two spots and told me which one would be best - and which was the second choice. As it worked out, everything went fine and I got my "first choice" for placement of the stoma.
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

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

Postby lorrainem » Fri Mar 28, 2014 5:27 pm

Alys,
I am crying as I read this. Tears of happiness for you because you've made the decision I can't. Living in some pain and schedule reshuffling is my new normal and has been since 2008. The pain only "changes" when you wait as long as I.
There are some days when I just want to do it, then a decent day will come along and my mind puts the pain away.
It is true that there is no one but you to make this decision, I bet I will be reading in a few months how pleased you are that you made the decision.
Looking forward to it!
Good luck and thank you for sharing your story and your strength.
Lorraine
Chemorad/Surgery/Chemo
Stage II, no mets, no nodes NED 05/08 again 08/08 again 11/08
Ileostomy reversal 10/16/08

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

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

Postby tammylayne » Fri Mar 28, 2014 6:33 pm

So So SOOOOOOOO happy for you. The tone of your email totally shows that this is the right decision for YOU!!!!! I can only imagine how much better you must feel knowing that you have made a decision.

Looking forward to reading updates after the surgery. I know from Belle's posts...she has NEVER looked back...it gave her a life again, and I hope you have the same result!!!

Go you!!!!!!!! :D :D :D
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."

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

Postby Jachut » Fri Mar 28, 2014 8:16 pm

So glad for you that you've made the decision - I've found an ostomy to be sooooooooooo much easier to live with than pain and bad bowel function.

You know, I've never ever thought about myself and my image in terms of my colostomy. I've got terrible body dysmorphia, I'm really stuffed in the head over food, weight, how I look. I got scary thin during treatment and have never liked how I looked better than when I was emaciated. I did stupid things to stay that way. I've regained a lot of weight now and its plunged me into depression, anxiety, thoughts of hurting myself and very disordered restrictive/binging eating patterns but never, not once, ever have I looked at my colostomy and felt disgusted.

I've not even had to change what I wear other than to hide what I now think are enormous thighs.

It has really been such a non issue for me in terms of self image. I was always so anxious about being caught trying to have a painful, impossible bm outside the house. I wouldn't go out at night (when my bowel tends to empty), I avoided school camp because I couldn't function without an enema. The loud, messy expulsion after an enema utterly disgusted me. This is so so much cleaner, easier, more predictable and more discreet.

Of course, that's only my opinion and experience, but I really hope you have just as easy time and feel as much relief as I do. The ONLY reason I'm glad I reversed my ileostomy (I didn't want to, I just knew it wasn't going to work out) is that I now have my colostomy. Because its much easier with more solid and less frequent expulsions.

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

Postby smudgesicle » Fri Mar 28, 2014 11:03 pm

I would lean towards the colostomy because as Belle says they are generally considered much easier to manage, although I believe they can be a little noisier and smellier than the ileostomy, according to my surgeon and WOC. The one advantage of a permanent ileostomy is that they could resect your entire colon and you'd never have to worry about another colon tumour again. I'm not sure how likely this is but it's something my surgeon flagged with me because he thinks HNPCC is likely in my case. Best of luck with the decision-making!

I'm so excited you've made this decision and I really think I'm getting closer to making the same decision. Every time I think about something I can't do now, I think but if I had the bad I could so be doing that right now!
dx May '13 @ 29
RC T2N1bM0, Stage IIIA
7/13 chemoradiation
9/13 ULAR (pCR) & right hemi due to large "precancerous" appendiceal tumour, temp. ileo
11/13-5/14 5FU, 24 rounds
1/14 SBO & takedown
8/14 NED
9/14 perm. colostomy

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Rob in PA
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Location: Pennsylvania

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

Postby Rob in PA » Sat Mar 29, 2014 12:36 pm

Well, i've had one colostomy and two ileostomies, and I can say with all certainty that I preferred the colostomy over the ileostomy hands down. Like others said, not as much burning from liquid stool with a colostomy as opposed to ileostomy. Easier to maintain, less accidents.

If I had to pick a con for colostomy it would probably be that sometimes bowel movements can be quite large and heavy (not to sound too disgusting, but hey) and if you don't have a place to empty it can certainly pop the seal off. The other thing that i preferred ileo over colo was that the ileo was quick and easy to empty and not much mess to clean up. I used the roll up closuree. The colostomy (if you are reusing the bag via roll up) is a little messier to clean up when you empty it because of the thickness. Some prefer to just use the "one and done" colostomy bags and throw them away. Since you have less bm during the day, this is more feasible than with ileo bags because you have many more bms throughout the day and most times they just need a quick dump for a little bit of bm.

But to me, the burning and maintenance of the ileo was harder and more painful.

Best with whatever decision you make.

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

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

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

Postby Lee » Sat Mar 29, 2014 12:52 pm

NWgirl wrote:If it's possible, I'd definitely opt for the colostomy. It makes for a thicker output (less liquid); which has two advantages. #1 - much less chance of it leaking onto your skin and burning the area around your stoma. Even if it does get on your skin, it's going to itch a little - but it's nothing like that battery acid feeling when my ileostomy used to get onto my skin. And #2 - less emptying of the pouch. When I had my ileostomy I basically had to empty it every time I peed - which was okay; but with the colostomy I generally only empty 1-2 times a day. It's much easier to deal with.

Make sure you have a good WOCN Nurse mark one if not two possible options for the stoma placement.


Ditto to what Belle said.

I have a permanent colostomy, best decision I ever made. I can eat what I want with out worry how it could effect my bowels. I can be gone all day with out worry of accidents.

Good luck on your up coming surgery, I will be heading into surgery about a week before you, April 8.

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!

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

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

Postby jeanette57 » Sat Mar 29, 2014 9:40 pm

Jachut

I would invite you to a nudist camp. It is wonderful for self image. :D No perfect people, no false perceptions. Now I have only done spas with other cancer survivors - so see all the breast - colon - leg cancers. Scars and such as we help each other get in that darn hot spring soak. They banded together for "ME" because the others "normal such" wouldn't let me in the giant pool with my ostomy bag. I see their point so we rented a separate area. I get 10 minutes in and 20 out. I paid for this trip and had to cancel because of the hole in my foot.

I guess I am not to great with mixed company but then been going to gym classes and group showers are easy. If I feel watched, I have a lot of mouthy things. You do not want to piss me off in those times. young kids are another thing as they really are interested why I have a balloon attached to my belly. :o

Ziplock bags - are our best friend when your pouch is to full and no place to go. I can do it in the back seat or standing next to car or out back at friends house - Great for long trips with some baby wipes and all is great! When I get to trash can take out of sealed container and toss bags. Also a little mouth wash is great for stoma (same tissue as inside your mouth). I do NOT use full strength very weak. I also use barrier wipes and tape remover so always have healthy skin. :D
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

PainInTheAss
Posts: 668
Joined: Tue Jul 02, 2013 3:08 am

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

Postby PainInTheAss » Sun Mar 30, 2014 2:17 am

Rob in PA wrote:Well, i've had one colostomy and two ileostomies, and I can say with all certainty that I preferred the colostomy over the ileostomy hands down. Like others said, not as much burning from liquid stool with a colostomy as opposed to ileostomy. Easier to maintain, less accidents.

If I had to pick a con for colostomy it would probably be that sometimes bowel movements can be quite large and heavy (not to sound too disgusting, but hey) and if you don't have a place to empty it can certainly pop the seal off. The other thing that i preferred ileo over colo was that the ileo was quick and easy to empty and not much mess to clean up. I used the roll up closuree. The colostomy (if you are reusing the bag via roll up) is a little messier to clean up when you empty it because of the thickness. Some prefer to just use the "one and done" colostomy bags and throw them away. Since you have less bm during the day, this is more feasible than with ileo bags because you have many more bms throughout the day and most times they just need a quick dump for a little bit of bm.

But to me, the burning and maintenance of the ileo was harder and more painful.

Best with whatever decision you make.

Rob


Boy, you are quite the pooper! That would suck. I think bags are unisex but output can be different for the sexes. I've never had my bag fill so fast that the end would pop off and I think that's probably true for most female ostimates. We tend to eat less, so...

My biggest problem is too thick a stool causing pancaking and then the wafer is pushed off the skin. My biggest accident was pancaking followed by diarrhea. But I've had few accidents overall. Diarrhea sucks when it comes out of nowhere. I use a wax seal during chemo and that seems to help keep the bag attached if it fills really fast from diarrhea while I'm asleep. Otherwise, the weight of the output can compromise the seal with a full bag. Non diarrhea days usually mean a half full bag at most. Sometimes I don't even empty it and just take the whole bag off if the output is slow for a few days.

Other than that, so glad that pooping doesn't mean clawing the walls! I'd take the bag over that any day.
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

smudgesicle
Posts: 125
Joined: Fri Mar 07, 2014 3:23 am
Facebook Username: prue.robson
Location: Australia

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

Postby smudgesicle » Fri Apr 11, 2014 5:39 am

Just popping in to say good luck for your surgery next week Alys. I so can't wait to hear how it all goes for you. I'm more and more leaning towards opting for the permanent colostomy so I have my fingers crossed for a really good experience for you!
dx May '13 @ 29
RC T2N1bM0, Stage IIIA
7/13 chemoradiation
9/13 ULAR (pCR) & right hemi due to large "precancerous" appendiceal tumour, temp. ileo
11/13-5/14 5FU, 24 rounds
1/14 SBO & takedown
8/14 NED
9/14 perm. colostomy

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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 » Mon Apr 14, 2014 9:17 pm

Thank you all for your time advice and replys!
My surgeon moved my surgery date back to April 30th from the 16th so that I would be able to get in 30 Hyperbaric treatments. I have been going two times daily and he is in hopes that it will diminish all of the scar tissue caused by radiation so that he can do a colostomy on me without problem. I have read all of your comments and went back to him requesting a colostomy.
Now his question to me is do I want a total end colostomy or the other type. One is where they remove everything and actually sew you shut and the other one they leave your person however it is a colostomy not an ileostomy. Again I am stumped. How do I know which type of colostomy I want? Can anyone help me with this decision or give me some more advice? I have read all over the Internet in regards to the two different types, however I do not know which one to select. I would like the end result to be easier to manage, and with no pain being the key. Has anyone here had a total end colostomy? Are you experiencing problems and pain? What about the other type? Any pain with that? Anyone that can type in please do thank you very much!!! I believe there are Actually three different types of colostomy. Descending, I transverse, and a sigmoid. I should have gone to medical school!
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

RickMurtagh
Posts: 89
Joined: Fri Feb 26, 2010 1:32 pm
Location: Randolph, NJ

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

Postby RickMurtagh » Mon Apr 14, 2014 9:49 pm

i had an ileo after a total colectomy. jpouch - failed reversal and a permanent ileo. my ileo is loop and now i have to deal with butt leak. i can't even stand and take a pee. my wife says that makes me a better person any ways. the intestines (jpouch, etc) make a mucus that will drain out via the anus. mine was not working so well, which is why i ended up with the perm ileo. NOW i wish i had elected to have the jpouch/anus removed. much less to deal with. just a thought. besides i thought of a bunch of ways to bring up barbie butt in normal conversations.

good luck with your procedure - just be happy with your decision.
Rick, 54
DX III two tumors Feb 09
Chemo/rad March 09
Ileo June 09
FOLFOX July 09
Takedown April 10
Mets to the sacrum and presacral area March 11 - NOT
Chronic infection of sacrum that looked like cancer (including a blockage)!
Permanent ileo April 11


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