Fistula Questions

Please feel free to read, share your thoughts, your stories and connect with others!
tater
Posts: 133
Joined: Wed Jul 19, 2017 5:53 pm

Fistula Questions

Postby tater » Tue Nov 27, 2018 3:35 pm

Yes my wife had her first colonoscopy two weeks ago since diagnosis. Good news things went well no pulps or signs of cancer. Yahoo. The not so good news is that they had to use a pediatric scope as her connection point is narrow, everyone suspects that it is from the radiation. A week after she noticed some changes and without going into details she has a fistula. We have a doctors appointment mid december to have her looked at. Of course this is very upsetting to both of us and my wife is heart broke at the thoughts at the minimum having a second temp diversion or worse a perm. colostomy. Have any of the women on this forum had this type of issue, a post surgery fistula? If so what was your treatment plan, what can we expect? Was it successfully repaired?
DH to 38 wife w/kids
Stage 3C DX 3/3/17 CEA 29
5-fu and radiation ended May 17, 2017
Stage 4 External iliac node July 17, 2017
FOLFOX + Avistan July 18 2017 CEA 2.3
Nov 9, 2017 Coloanal Anastomosis, Hysterectomy & External Nodes Removed W/ileostomy
Clear Margins NED
CEA 1.5 12/17, 2.1 2/18, 2.3 6/18, 1.1 9/18, 1.3 12/18, 1.8 3/19, 2.5 6/19
Clear CT and MRI on 2/5/2018, 9/18 Clear Scans
Reversal Surgery 6/26/18
Small Spot on right ureter surgery 10/30/19 adhered to artery
Dec. 2 start 12 rounds FOLFIRI

Doubletrouble
Posts: 4
Joined: Wed Sep 07, 2016 8:22 pm

Re: Fistula Questions

Postby Doubletrouble » Tue Nov 27, 2018 10:52 pm

I am sorry to read about your wife's fistula. I had a recto vaginal fistula caused by delayed radiation damage. Mine developed after ileostomy takedown. It was horrific to deal with. A few weeks after the fistula occured, I had surgery to attempt a repair, as well as an colostomy placed.

I had a great surgeon who suggested Hyperbaric Oxygen Treatment to help heal the radiated tissue. I completed 60 days (m-f) in the oxygen chamber (2hrs daily). The HBO treatment was successful in helping to heal the damaged tissue. I then had Gracious Flap surgery which was successful. 8 months later I had colostomy takedown surgery. It is now 1 year later and I am doing well re: the reversal, I really think the HBO treatment is part of my good results from my 2nd takedown.

After my first ostomy reversal I had all of the common issues to deal with post takedown, not fun! When the 2nd one was done it was so much better. I believe it's because the radiated tissue was healed(?) Who knows if that's true, I'm just happy to be some what back to normal.

I wish your wife all the best with her fistula repair.
45 F @ diagnosis 2/2015 stage 3 RC
3/2015 chemo/radiation
6/2015 LAR /Ileostomy
7/2015- 1/2016 Folfox 12 rounds
5/2016 Ileostomy takedown
7/2016 colostomy due to rv Fistula
7/2016 - 3/2017 fistula repairs (3)
11/2017- colostomy takedown

tater
Posts: 133
Joined: Wed Jul 19, 2017 5:53 pm

Re: Fistula Questions

Postby tater » Wed Nov 28, 2018 12:40 am

Doubletrouble wrote:I am sorry to read about your wife's fistula. I had a recto vaginal fistula caused by delayed radiation damage. Mine developed after ileostomy takedown. It was horrific to deal with. A few weeks after the fistula occured, I had surgery to attempt a repair, as well as an colostomy placed.

I had a great surgeon who suggested Hyperbaric Oxygen Treatment to help heal the radiated tissue. I completed 60 days (m-f) in the oxygen chamber (2hrs daily). The HBO treatment was successful in helping to heal the damaged tissue. I then had Gracious Flap surgery which was successful. 8 months later I had colostomy takedown surgery. It is now 1 year later and I am doing well re: the reversal, I really think the HBO treatment is part of my good results from my 2nd takedown.

After my first ostomy reversal I had all of the common issues to deal with post takedown, not fun! When the 2nd one was done it was so much better. I believe it's because the radiated tissue was healed(?) Who knows if that's true, I'm just happy to be some what back to normal.

I wish your wife all the best with her fistula repair.


thank you for the update and information it is helpful. If you don;t mind what is the idea behind the Gracious Flap surgery?
DH to 38 wife w/kids
Stage 3C DX 3/3/17 CEA 29
5-fu and radiation ended May 17, 2017
Stage 4 External iliac node July 17, 2017
FOLFOX + Avistan July 18 2017 CEA 2.3
Nov 9, 2017 Coloanal Anastomosis, Hysterectomy & External Nodes Removed W/ileostomy
Clear Margins NED
CEA 1.5 12/17, 2.1 2/18, 2.3 6/18, 1.1 9/18, 1.3 12/18, 1.8 3/19, 2.5 6/19
Clear CT and MRI on 2/5/2018, 9/18 Clear Scans
Reversal Surgery 6/26/18
Small Spot on right ureter surgery 10/30/19 adhered to artery
Dec. 2 start 12 rounds FOLFIRI

Punky44
Posts: 498
Joined: Mon Oct 01, 2018 4:29 pm

Re: Fistula Questions

Postby Punky44 » Wed Nov 28, 2018 1:25 am

I don’t have any advice on this subject and sorry about this challenge , but happy to hear her colonoscopy was clear!
Caregiver to my amazing mom (68 at dx)
10/1/18 DX with rectal cancer; CEA 17
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
6/28/19 Reversal and port out
CEA 2.1; 1.9; 2.6; 2.8; 2.3; 2.4; 3.0; 3.4; 3.1; 3.4; 3.0; 3.1; 2.6
Latest update: 8/21/23 Clear CT with CEA 2.6!

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

User avatar
CRguy
Posts: 10473
Joined: Sun Feb 10, 2008 6:00 pm

Re: Fistula Questions

Postby CRguy » Wed Nov 28, 2018 1:50 am

tater wrote:thank you for the update and information it is helpful. If you don;t mind what is the idea behind the Gracious Flap surgery?

I believe you may wish to refer to ...
GRACILIS flap surgery .... :shock:

Capercrohnieileo
Posts: 25
Joined: Wed Apr 11, 2018 12:42 pm
Facebook Username: Jayne Olson
Location: NS, Canada

Re: Fistula Questions

Postby Capercrohnieileo » Wed Nov 28, 2018 8:44 pm

I didn't have post surgical fistulas but I did have multiple rectovaginal fistulas caused by Crohn's which resulted in my permanent ostomy. She has my sympathy. Fistulas are horrible and I dread getting them again. My ileostomy is way better than fistulas any day.
Severe Crohn's colitis jan 2015
Developed fistulas feb 2015
Open total proctocolectomy with end ileostomy (bye bye colon and rectum hello barbie butt) because of fistulas, Crohn's and crc risk May 5, 2017
Gastroduodenal Crohn's Nov 1, 2017
Severe Gastroparesis (delayed gastric emptying) Nov 9, 2017 GES showed 70 % remaining in stomach at 4 hrs. Normal is <10%
Jejunostomy (J tube) surgery Oct 17, 2018.
Didn't go so well. Small bowel obstruction found Oct 26, 2018.

heiders33
Posts: 363
Joined: Sat Nov 04, 2017 11:08 am

Re: Fistula Questions

Postby heiders33 » Thu Nov 29, 2018 8:11 am

This is good to know about, because I will need to use a pediatric scope or virtual colonoscopy in the future because of the post-radiation/surgery shape of my colon. My colonoscopy in October didn’t go past the recto-sigmoid junction. I will definitely ask about the risks of a fistula in the future. So sorry that your wife is going through this.
40 year-old female
May 2017: Dx rectal cancer T3N2M0
MSS, KRAS G12D
6/17: 28 days chemorad
9/17: LAR/loop ileostomy, CAPOX six rounds
3/18: reversal
9/18: liver met, resection/HAI pump, 11 rounds 5FU, 1 round FUDR
11/19 - local recurrence, brachytherapy, 3 weeks targeted radiation
12/21 - end colostomy

tater
Posts: 133
Joined: Wed Jul 19, 2017 5:53 pm

Re: Fistula Questions

Postby tater » Thu Nov 29, 2018 6:57 pm

heiders33 wrote:This is good to know about, because I will need to use a pediatric scope or virtual colonoscopy in the future because of the post-radiation/surgery shape of my colon. My colonoscopy in October didn’t go past the recto-sigmoid junction. I will definitely ask about the risks of a fistula in the future. So sorry that your wife is going through this.



Have them be careful so you don;t have an issue like my wife.
DH to 38 wife w/kids
Stage 3C DX 3/3/17 CEA 29
5-fu and radiation ended May 17, 2017
Stage 4 External iliac node July 17, 2017
FOLFOX + Avistan July 18 2017 CEA 2.3
Nov 9, 2017 Coloanal Anastomosis, Hysterectomy & External Nodes Removed W/ileostomy
Clear Margins NED
CEA 1.5 12/17, 2.1 2/18, 2.3 6/18, 1.1 9/18, 1.3 12/18, 1.8 3/19, 2.5 6/19
Clear CT and MRI on 2/5/2018, 9/18 Clear Scans
Reversal Surgery 6/26/18
Small Spot on right ureter surgery 10/30/19 adhered to artery
Dec. 2 start 12 rounds FOLFIRI


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 104 guests