Had my surgery...ended up with colostomy bag

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Cmarie03
Posts: 29
Joined: Sat Feb 16, 2019 6:35 pm

Had my surgery...ended up with colostomy bag

Postby Cmarie03 » Thu Aug 22, 2019 3:29 pm

Had my surgery here at md Anderson in Houston on Tuesday. Lower anterior resection, vaginal reconstruction and hysterectomy. My surgeon explained to me I needed to be mentally prepared to have either permanent colostomy or temporary illeostomy. She wouldn’t know until she got in there. Apparently when she got in there to get good margins she had to cut lower into rectum and I have permanent colostomy. Idk why but I’m still shocked. They said surgery went really well, the margins were negative and we’ll get pathology report next week.

I’m still dealing with healing big time and haven’t thought much about colostomy but the nurse just came in to help me change it. It was the first time I saw it. Feeling grateful for a good surgery but still a little shocked I will have this for the rest of my life. I’m only 34.

She did explain there were a lot of different bags and underwear and stuff like that. Just feeling kind of down about it.
Last edited by Cmarie03 on Sat Aug 24, 2019 6:10 pm, edited 1 time in total.
Diagnosed stage IIIC rectal cancer 12/20/18 in ER
4 rounds FOLFOX January 2019-February 2019
Xeloda/Radiation March 2019-April 2019
4 more rounds FOLFOX 6/5-7/17
Surgery sched 8/20/19

MistyBlu
Posts: 13
Joined: Wed Aug 21, 2019 7:26 am

Re: Had my surgery...

Postby MistyBlu » Thu Aug 22, 2019 7:34 pm

Happy to hear you had a great surgery and sorry things didn't turn out as you planned. When I thought I might have a bag I started binging youtubers and there's quite a few that are very, young like yourself and they gave me hope that I could do it too.

I'm new here and I don't know much but I'm happy for you all the same. And I look forward to reading about your recovery as I have my first surgery coming up in a little over a week.
F 49
Right Hemi Colectomy 9/4/19

Rock_Robster
Posts: 282
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Had my surgery...

Postby Rock_Robster » Thu Aug 22, 2019 9:03 pm

Hi cmarie, congrats and very glad to hear the surgery went well. Sorry about the stoma - indeed it’s a shock when you’re young.

I’m 37 and have had an ileostomy for about a month now. By most views, colostomies are easier to manage. It was almost a part-time job for about 2-3 weeks, then it all just became routine and now I mostly don’t even think about it. The stoma nurses are generally amazing - ask lots of questions and don’t settle with an outcome until you’re satisfied with it!

There’s LOTS of products out there, and the manufacturers would love to have you as a customer. Keep it simple at first but don’t be afraid to experiment if things are bothering you.

One thing I would check out is the Stealth Belt at http://www.stealthbelt.com - the difference for me before and after this is like night and day.

Good luck, this will all be behind you (or as the case may be, in front you) soon...

Cheers
Rob
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets, resectable
pT3pN1apM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response, TRG 3
07/19 - ULAR (robot), temp ileo, 1/27 LN+
08/19 - Missed liver spot
08/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 2
10/19 - Planned liver resection #2 & ileo reversal

Soccermom2boys
Posts: 212
Joined: Tue Nov 10, 2015 10:29 pm

Re: Had my surgery...

Postby Soccermom2boys » Thu Aug 22, 2019 10:26 pm

Hi Cmarie—glad to hear your surgery came with clear margins—words you definitely want to hear! I am responding as someone who also had to have a permanent colostomy, although I was told in advance of the surgery I would need one as the tumor was butting up against my anal sphincters so it all had to go if I wanted best chance. While it isn’t what one hopes for, I know it is my best option and I guess going in knowing it was a certainty was more helpful—I am sorry you are dealing with the shock of the permanency of it on top of everything else.

Be easy on yourself mentally, it’s ok to not be initially enthusiastic about it, you are human. I would say it took me probably close to two years after the surgery to truly come to terms with the fact that this was never going away and that it is what it is and it’s not really all that horrible. I would encourage you to go on to the UOAA website (United Ostomates Association of America) and look around and read up or ask questions—wonderful, wonderful people all willing to help out. I actually just went to their national conference a few weeks ago which was nice to be able to connect with so many people living with ostomies and their unique situations they present. I realize I am older than you (45 at time of my surgery), but there are many others just as young as you, and for sure younger, that go on to have perfectly normal lives. Many of the younger ostomates tend to have theirs due to Crohn’s disease or other bowel diseases and they end up loving having an ostomy vs the life they were living previous to the surgery and so I try to remember that, it helps me to remind myself that an ostomy can be a true lifesaver in many regards even when it’s not what you really want.

It would definitely seem that a colostomy is preferable over an ileostomy for a variety of reasons if that helps to make you feel any better. It will be a while before your body is regulated to the whole process and I am not sure if you also have to do chemo as that will also impact your bowel movements initially. I ended up using the Coloplast Sensura Mio after maybe a year of experimenting with other products. You are always welcome to send me a PM with any questions or concerns and I will do my best to help you out/point you in the right direction. And as MistyBlu mentioned, there are YouTube videos out there to help show you stuff as well.

Welcome to the club—it gets better, just give it time, and I mean actual genuine time, not just like in a few weeks you should be good to go. I say with 100% honesty that I do everything that I did before the surgery—don’t think you have to give anything up.

Xoxoxo
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox

Punky44
Posts: 349
Joined: Mon Oct 01, 2018 4:29 pm

Re: Had my surgery...

Postby Punky44 » Thu Aug 22, 2019 10:41 pm

I am glad you had clear margins! I know the colostomy will take some getting used to but you got this!
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
MRI/CT/PET puts staging at T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 4/23: 2.1; 7/24: 1.9
6/28/19 Reversal and port out

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

DarknessEmbraced
Posts: 3327
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Had my surgery...ended up with colostomy bag

Postby DarknessEmbraced » Tue Aug 27, 2019 12:40 pm

I'm glad your surgery went well but sorry it didn't go as you had hoped!*hugs* I hope your recovery goes well!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18

Pyro
Posts: 289
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Had my surgery...ended up with colostomy bag

Postby Pyro » Mon Sep 02, 2019 9:20 am

Cmarie03 wrote:Had my surgery here at md Anderson in Houston on Tuesday. Lower anterior resection, vaginal reconstruction and hysterectomy. My surgeon explained to me I needed to be mentally prepared to have either permanent colostomy or temporary illeostomy. She wouldn’t know until she got in there. Apparently when she got in there to get good margins she had to cut lower into rectum and I have permanent colostomy. Idk why but I’m still shocked. They said surgery went really well, the margins were negative and we’ll get pathology report next week.

I’m still dealing with healing big time and haven’t thought much about colostomy but the nurse just came in to help me change it. It was the first time I saw it. Feeling grateful for a good surgery but still a little shocked I will have this for the rest of my life. I’m only 34.

She did explain there were a lot of different bags and underwear and stuff like that. Just feeling kind of down about it.


I had mine done in Houston at MDA as well, cancer never came back to my bowels at least. I’m going to be honest, it took me a year to be OK with the bag. We are all different so your acceptance might be quicker, you do get used to it. I was 40 when I got mine. I just wish the lung and liver Mets would have gone away.
Aug 2015- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!


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