APR TOMORROW FISTULA REPAIR - SO SCARED

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MDK
Posts: 46
Joined: Sun Nov 29, 2015 1:43 pm

APR TOMORROW FISTULA REPAIR - SO SCARED

Postby MDK » Thu Jun 23, 2016 12:49 pm

This has been a long journey. I know we have all been on very long journeys but now, when I am committed to hopefully one of the final steps I would like to get in my car and run.

I wish I was brave I am scared. Since I was diagnosed last November my life has gone into a tailspin. Who has had an APR? Has anyone had it with fistula repair? The fistula is between rectum and vagina and will be completed by a plastic surgeon. I keep feeling as if I am going to die during this operation although it is being performed at the James in Columbus, OH by a seasoned colorectal surgeon - this doesn't seem to help.

Any messages will be appreciated very much.

Marianne
Diagnosed 11/9/2015
Stage III Rectal Cancer
Began Chemoradiation 01/04/2016
Completed Chemoradiation 2/17/16
Local Excision
Developed Rectovaginal Fistula
06/24/16 APR / Flap Repair Fistula
Permanent Colostomy
09/20/2016 Liver Mets, possible Lung Mets
9/16 - 11/17 Xeloda and Avastin to progression
12/17 - 01/18 Folfox 6 sessions liver tumor shrank considerably - severe allergic reaction
01/18 - 04/18 Xeloda and Avastin - Progression
06/18 Avastin and Irinotecan

Philippians 4:6-7

DarknessEmbraced
Posts: 3548
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: APR TOMORROW FISTULA REPAIR - SO SCARED

Postby DarknessEmbraced » Thu Jun 23, 2016 12:55 pm

I hope your surgery and recovery go well!*hugs* I can offer no advice. We are here for you!*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
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

MDK
Posts: 46
Joined: Sun Nov 29, 2015 1:43 pm

Re: APR TOMORROW FISTULA REPAIR - SO SCARED

Postby MDK » Thu Jun 23, 2016 1:21 pm

I thank you DarknessEmbraced.

Marianne
Diagnosed 11/9/2015
Stage III Rectal Cancer
Began Chemoradiation 01/04/2016
Completed Chemoradiation 2/17/16
Local Excision
Developed Rectovaginal Fistula
06/24/16 APR / Flap Repair Fistula
Permanent Colostomy
09/20/2016 Liver Mets, possible Lung Mets
9/16 - 11/17 Xeloda and Avastin to progression
12/17 - 01/18 Folfox 6 sessions liver tumor shrank considerably - severe allergic reaction
01/18 - 04/18 Xeloda and Avastin - Progression
06/18 Avastin and Irinotecan

Philippians 4:6-7

mike1965
Posts: 118
Joined: Mon Jan 25, 2016 11:07 pm

Re: APR TOMORROW FISTULA REPAIR - SO SCARED

Postby mike1965 » Thu Jun 23, 2016 1:39 pm

MDk

I pray all goes well tomorrow. It is very stressful to have surgery but it sounds like you have a skilled surgeon and you want to get that evil out your body. I was scared of surgery myself and did not have it for awhile. Waiting was not a good move. The cancer in my body was trying to travel. I did not have an APR surgery. I had a LAR with the scope. The surgery went very well and I am thankfully I have a chance to live cancer free. Stay strong.
Colonoscopy 09/06/15 Doctor removed polyp
DX - Rectal cancer 09/10/2015 T1M0N0
Surgeon recommended wait and see approach 09/2015
Tumor board recommended LARs Surgery 10/2015
Oncologist and PCP recommended LARs Surgery 11/2015
Seeking 2nd opinion from another Surgeon 01/2016
Having Sigmoidscopy on 02/01/16.
Figured out treatment 02/2016
LARS Surgery 03/2016
Stage 3A T1 N1C M0
Chemo Folfox to begin 04/18/16

jhocno197
Posts: 817
Joined: Mon May 11, 2015 9:33 pm

Re: APR TOMORROW FISTULA REPAIR - SO SCARED

Postby jhocno197 » Thu Jun 23, 2016 1:47 pm

Marianne, being brave doesn't mean that you are not afraid - being brave is doing what needs to be done even though you are afraid.


Praying it goes fantastically well.
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
Colostomy
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

Pita
Posts: 637
Joined: Wed Feb 10, 2016 3:48 pm
Location: So Calif

Re: APR TOMORROW FISTULA REPAIR - SO SCARED

Postby Pita » Thu Jun 23, 2016 3:20 pm

"Reality is never as dark as the places your brain visits in anticipation"
Easier said then done but please try and think positive thoughts not negative thoughts. Negativity sends toxins into your body.
It's a tough walk to succeed at prolonging our lives but being scared is ok, think we all are at one time or another.
My best to you for your surgery and recovery!
70yo Fem DX: 1/21/2016 RC Stage IV-Nodules lungs
MSS-Kras Wild-Lynch Synd Neg-Lung Biopsy 1/27/16-Port 2/19/16
MRI 7/7/16 Endometrial polyp found, watching LAR 7/19/16, No Ileostomy, Stage ypT3 N1
CT 11/7/16: Most mets stable,1 shrunk,1 new??
CEA Tests: 1/21/16=20, 12/22/16=5.3, 1/20/17=4.8, 2/15/17=6.2
9/20/16-1/24/17 Folfuri & Avastin
#10/10 Done
PET/CT 2/10/16-1/31/17=Some shrunk & growth to 2, Avastin failing ??? :evil:
2/21/17 Folfuri & Avastin

aja1121
Posts: 214
Joined: Sat Jun 28, 2014 5:12 pm

Re: APR TOMORROW FISTULA REPAIR - SO SCARED

Postby aja1121 » Thu Jun 23, 2016 3:29 pm

Marianne, my husband had an APR in February and he's doing just fine. Be sure to take your pain meds on schedule for the first few weeks... and if you can manage a high-protein diet, my husband's plastic surgeon feels this has helped his wound heal more rapidly. You will be in my thoughts tomorrow.
05/23/14 DH dx Stage 3B rectal ca (age 41)
6/2014 chemorad | 10/2014 LAR, all nodes clean
FOLFOX x 10 | VATS/lung met | ileo reversal
09/15 local recurrence
10/15 colostomy
11/15 FOLFIRI x 4, major growth
02/16 tumor debulked
Stable ten months on Xeloda/Avastin
Growth on clinical trials NCT02024607 (BBI608 + FOLFIRI), NCT02817633 (anti-PD-1 + anti-TIM-3), NCT03175224 (c-Met inhibitor)
09/27/2018 started hospice
02/07/19 died

User avatar
juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: APR TOMORROW FISTULA REPAIR - SO SCARED

Postby juliej » Thu Jun 23, 2016 3:49 pm

Marianne, it's natural to feel some fear before surgery, but don't like fear control you. Try not to worry about the things you can't control. It's true there are risks with any surgery, but you've reached the point where this is how you get the tumor removed and the fistula repaired.

You have a good, experienced colorectal surgeon and he and his team will go to great lengths to ensure your safety. Worrying about the 'what ifs' is not going to do you any good. And though it is very difficult to chose not to be nervous, try your very best to be excited instead. You can be excited about having the cancer removed from your body. This is how you get your life back. Marianne 1, Cancer 0. Game over!

Sending good thoughts and many prayers your way for a successful surgery and a fast recovery!

Julie
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

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

Re: APR TOMORROW FISTULA REPAIR - SO SCARED

Postby JJ2212 » Thu Jun 23, 2016 4:54 pm

I'll be thinking of you tomorrow Marianne.

I had an APR almost 3 years ago. I was also very scared, thinking I might die and I didn't want to deal with the fact that I would have a permanent colostomy when I woke up from surgery. My nerves were so raw that I was crying in the hallway waiting to be brought in the operating room. But I promise you that for me, the fear was worse than the reality. Recovering from the surgery takes time but is no worse than dealing with cancer related pain and side effects like a fistula, imo.

Having gone through what you have already, you're more than strong enough to get through this too. Try to take deep breaths and visualize your happy place when the anxiety gets too much.

Take care,

Janie
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

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Cowgirl918
Posts: 319
Joined: Sun Jan 17, 2016 12:55 am
Location: Indiana

Re: APR TOMORROW FISTULA REPAIR - SO SCARED

Postby Cowgirl918 » Thu Jun 23, 2016 5:50 pm

"Courage is being scared to death and still climbing into the saddle".
John Wayne
We have all been so terrified during our journeys. Focus and pray for strength and peace. I use my iPod music to help. Rehearse your happy place trip and go there when the fear over takes you. We are praying with you and for you. You are always stronger than you think.
Take Care
HX Colon Polyps Villious and Tubillovillous
12/29/15 Colonoscopy/Endoscopy - Ascending Colon Mass- Hemicolectomy Scheduled
1/17/2016 Right Hemicolectomy Cancelled
1/25/2016 CT No evidence of other disease
2/12/2016 EMR-ascending colon mass 80% removed
5/29/2016 Compressed lumbar spinal fracture (riding accident)
8/12/2016 EMR #2 ascending colon mass curative
8/13/16 NED
10/18/16 Autoimmune Diseases confirmed

Soccermom2boys
Posts: 218
Joined: Tue Nov 10, 2015 10:29 pm

Re: APR TOMORROW FISTULA REPAIR - SO SCARED

Postby Soccermom2boys » Thu Jun 23, 2016 8:31 pm

Count me in the APR club! Yeah, it's by no means what anyone wants to have, but I am six months out and doing fairly well. Just went to the pool for the first time yesterday with the colostomy pouch--was a big mental milestone for me that no one else would know about. Every time you hit a milestone like that it helps build your confidence that life with a permanent colostomy can be fairly close to what it was before f-ing cancer showed up. As for the APR surgery, I would say it was really not so bad as far as pain goes. I only needed the narcotic (delauded?) for about 48 hrs after the surgery and by the time I went home (5 night stay at hospital) I only used extra strength Tylenol and I barely even used that. I was just more relieved to get the surgery behind me and to get the tumor out of me that I honestly wasn't even thinking about what could happen during the surgery. I will say they dope you up good and that really helps you as they wheel you down to the operating room. If you feel good about your surgeon going in to it then keep that faith and you will be fine. I am sure you did all that you could going in to the surgery to be healthy and strong so just let the doctor do the rest and you will be surprised with how much "easier" it is than what you are probably envisioning I am guessing. Two things I was clueless about regarding after the surgery-you will have an NG tube down through your nose into your esophagus which is majorly annoying, but bearable. You can't eat or drink (not even water) until they take the tube out and the tube comes out once they know gas is passing through your colon-for me that was about 48 hrs after surgery. The other piece I was clueless about was that I had two JP drains (bulbs with tubing) to the right of my incision that were not painful, but I went home with one in for another week or two to help drain out any extra fluid/blood and help with the overall healing. Annoying, but you will be at home recovering so not like you'll be dealing with a drain while you are out on the dance floor! As for the recovery, by six weeks you feel somewhat back to normal and by 8 weeks definitely notice a difference. If you work, try to take off a full eight weeks for recovery--you won't want or really be able to sit like normal for at least six weeks afterwards. I literally would crawl out of bed each morning and measure up how I felt from one day to the next and fortunately each day was ever so slightly better than the one before it.

I did not have a fistula so I can't help you with that as far as what to expect. The days will feel long for sure during recovery as you will be limited to what you can do, but walking was a great way for me to get out of the house and work on my recovery and feel better about myself. By a month out I was easily getting six to eight miles of walking in a day--not all at once, but I would make walking dates with friends and my husband when he came home from work and that was such a great way for me to start getting back my life piece by piece.

By all means, you can send me a PM if you have any questions and/or want to know some nitty gritty details-I am more than happy to help out a fellow ostomate! Also, definitely check out the United Ostomate Association of America's forum as well at UOAA.org. Such an amazing group of kind and helpful ostomates who are able to help you with issues that will arise as you deal with life with an Ostomy. Best of luck with the surgery--truly, you will be fine and most likely surprised at how well you weather it! You will be in my thoughts!
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

MDK
Posts: 46
Joined: Sun Nov 29, 2015 1:43 pm

Re: APR TOMORROW FISTULA REPAIR - SO SCARED

Postby MDK » Sat Jul 02, 2016 3:57 pm

Hello everyone - I am one week and one day out from surgery. So far all is going well physically, mentally struggling just to accept the ostomy, my new life, etc.

Soccermom2boys - you mentioned walking. How far did you walk in the beginning. Today was my first day outside - just went for a little ride. Was very nice. Being outside seems to help my depression.
Diagnosed 11/9/2015
Stage III Rectal Cancer
Began Chemoradiation 01/04/2016
Completed Chemoradiation 2/17/16
Local Excision
Developed Rectovaginal Fistula
06/24/16 APR / Flap Repair Fistula
Permanent Colostomy
09/20/2016 Liver Mets, possible Lung Mets
9/16 - 11/17 Xeloda and Avastin to progression
12/17 - 01/18 Folfox 6 sessions liver tumor shrank considerably - severe allergic reaction
01/18 - 04/18 Xeloda and Avastin - Progression
06/18 Avastin and Irinotecan

Philippians 4:6-7

Soccermom2boys
Posts: 218
Joined: Tue Nov 10, 2015 10:29 pm

Re: APR TOMORROW FISTULA REPAIR - SO SCARED

Postby Soccermom2boys » Sat Jul 02, 2016 8:01 pm

Yay for you MDK--you made it to the other side of surgery! Glad to hear you are recovering well physically and the mental adjustment to an Ostomy takes some time so you sound about normal on that front! I am six months out and I feel better about it, but not going to say I love it--I still need a lot more time to get to an overall level of acceptance, but I am trying.

So I was a big, big walker going in to surgery so while at the hospital I was walking at least five times a day and trying to lengthen my route through the corridors there as much as possible. When I got home I couldn't wait to go out and walk just to get out and get fresh air plus my behind wanted no parts of sitting in a car so walking was my only chance of getting out and about for the first month or so post-surgery. I would do two to three walks a day and probably overall I was getting in maybe two miles a day or so, but in pieces. I live in a very hilly area so I just took it slow and steady, but I really had no pain from walking and just went with what my body could handle. And yes, getting outside absolutely helps to lighten up the dark thoughts that so easily accompany life after surgery and cancer. Any other questions I will do my best to answer--I am not going to profess to be an expert, but I am six months ahead of you with the APR and I will gladly do my best to help you out if needed.

PS Hardest part to walking was bending to tie the shoes. LOL
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


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