Reversal surgery

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O Stoma Mia
Posts: 1421
Joined: Sat Jun 22, 2013 6:29 am
Location: Traveling abroad: Glasgow

Re: Reversal surgery

Postby O Stoma Mia » Thu Mar 15, 2018 12:15 am

Caat55 wrote:... Do you have a special diet or any limitations? ...

There are some websites out there that have free documents on eating well after bowel cancer surgery, and on regaining bowel control -- for example:

https://www.beatingbowelcancer.org/how-we-can-help/booklets-factsheets/

There are also some factsheets on peripheral neuropathy and on stoma reversal:

https://www.beatingbowelcancer.org/how-we-can-help/booklets-factsheets/#tabs-2

heiders33
Posts: 275
Joined: Sat Nov 04, 2017 11:08 am

Re: Reversal surgery

Postby heiders33 » Thu Mar 15, 2018 6:38 am

Caat55 wrote:Welcome home. I bet it feels good. Do you have a special diet or any limitations? How long are you out from work? Pain?
The thought of the reversal is pretty scary, I worry about urgency, frequency but your system is still just a little sleepy yet.
S


I am following a low-residue diet. So far I've eaten toast, a little fish, sweet potato, pasta with tomato sauce, and eggs. My SIL is going to get me some Colate today because I think my system has slowed down. I have passed some more gas but I still feel a little constipated. Hopefully that will get things moving, along with the coffee I'm drinking this morning. Once things are moving more I am sure they will be moving quickly! I'm not yet at that urgent, frequent stage, but I am prepared for that eventuality.

I am off from work all this week and plan to work from home next week. I do still have some soreness in my abdomen but it has gone down every day. I'm a little anxious about changing the dressing on my wound, but I'm sure it will be fine. Don't be nervous about the reversal - just be prepared and you will be fine. Do your pelvic exercises and be ready to introduce things slowly into your diet. Refer to OSM's links above.

Today I plan to do a lot of walking outside so I'm sure that will help too.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR surgery with loop ileostomy
October 2017 - February 2018: XELOX six rounds
March 2018: reversal
April 2018: CEA 2.1, all blood counts normal
May 2018: CT scan showed liver spot
August 2018: Abnormal PET, CEA 2.4
September 2018: liver resection with HAI pump

heiders33
Posts: 275
Joined: Sat Nov 04, 2017 11:08 am

Re: Reversal surgery

Postby heiders33 » Fri Mar 16, 2018 10:10 am

I didn’t do as much walking yesterday as I wanted to. I still have soreness in my abdomen and some gas, so today I am out and about more. I realize I am only five days out from surgery, but I’m ready for this pain to go away. So far I have had intermittent bowel movements, all liquidy. I can feel stuff moving through my system so I can tell it’s waking up. So far no accidents, but I do get to the bathroom pretty quickly when I feel the urge.

I was weirded out by my stoma wound the first time I changed the dressing, so I called my surgeon. He assured me that it would heal in about a month and that everything I’m experiencing is normal (bleeding, etc.). I’ll see him again in a couple weeks. I knew this wound healing process would be strange, but I wasn’t totally prepared for having such a deep hole in my abdomen. To me it’s weirder than the stoma itself, but I’ll get used to it.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR surgery with loop ileostomy
October 2017 - February 2018: XELOX six rounds
March 2018: reversal
April 2018: CEA 2.1, all blood counts normal
May 2018: CT scan showed liver spot
August 2018: Abnormal PET, CEA 2.4
September 2018: liver resection with HAI pump

Caat55
Posts: 511
Joined: Sat Dec 23, 2017 6:01 pm

Re: Reversal surgery

Postby Caat55 » Thu Mar 22, 2018 7:33 pm

Hope you are doing better, stoma healing? No part of this makes sense does it?

Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds

heiders33
Posts: 275
Joined: Sat Nov 04, 2017 11:08 am

Re: Reversal surgery

Postby heiders33 » Thu Mar 22, 2018 8:26 pm

My stoma seems to be healing, however slowly. I continue to have pain and tenderness in that area. I went to see my surgeon on Tuesday to get it checked out. There is no problem with infection or anything, it's just a musculo-skeletal problem. This surgery is actually a deeper cut than the LAR and I am just having a prolonged reaction to it. So I'm taking it easy until the pain dies down. I have Percocet and Valium on hand, but actually ibuprofen works just as well. I've also graduated from liquid to stool to pellets, which means an aggravated bum! I'm using wet wipes and cream and I started taking Lomotil to slow down my bowel movements, which works very well. So far it seems that my system is tolerating different foods very well, although I've mostly been on a low-residue diet. I'm hoping the pain goes away soon so I can focus on the bowel movements exclusively and can start doing more things. I hate being inactive!
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR surgery with loop ileostomy
October 2017 - February 2018: XELOX six rounds
March 2018: reversal
April 2018: CEA 2.1, all blood counts normal
May 2018: CT scan showed liver spot
August 2018: Abnormal PET, CEA 2.4
September 2018: liver resection with HAI pump

heiders33
Posts: 275
Joined: Sat Nov 04, 2017 11:08 am

Re: Reversal surgery

Postby heiders33 » Sat Mar 24, 2018 1:41 pm

I can tell my pain is gradually lessening each day. It's going to be a while before it's completely gone. But I'm managing it by not doing too much each day. This morning I did some chores and shopping and it wasn't too bad. However, if I find myself bending too much the pain increases and I have to lie down. One day at a time.

My body feels very roly poly and weak right now, and I can't wait to start running again to get back into shape. I also can't wait to do abdominal exercises again. Feeling very flabby at the moment.

Today I ate nuts for the first time since surgery - a handful of walnuts, which I plan to do every day for a good long time to reduce my chance of recurrence. I also ate a little salsa. Hopefully my system will tolerate it well, which I believe it will. My stools have gotten more solid and more frequent, so I've slowed them down with Lomotil for now. Hopefully I won't have to take Lomotil/Immodium forever, but in this initial period they help a lot. The reduction in frequency has meant a less irritated bum, among other things.

The sun is shining, the weather is gradually warming up, and overall I have energy and am feeling good except for the pain. I'm looking forward to Easter as a sort of milestone for new beginnings. Trying not to think about my first scan coming up in May.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR surgery with loop ileostomy
October 2017 - February 2018: XELOX six rounds
March 2018: reversal
April 2018: CEA 2.1, all blood counts normal
May 2018: CT scan showed liver spot
August 2018: Abnormal PET, CEA 2.4
September 2018: liver resection with HAI pump

Caat55
Posts: 511
Joined: Sat Dec 23, 2017 6:01 pm

Re: Reversal surgery

Postby Caat55 » Mon Mar 26, 2018 9:59 am

Hope you got outside a little this weekend. My daughter lives in Harlem and said it was nice. How is it to eat? Timing between food and bathroom trips? Did you do pelvic PT prior to reversal? Thank you for you encouraging words about side effects. I feel Iike a wimp.
S
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds

heiders33
Posts: 275
Joined: Sat Nov 04, 2017 11:08 am

Re: Reversal surgery

Postby heiders33 » Mon Mar 26, 2018 2:23 pm

It was nice on Saturday, not so much on Sunday. I got out to do some errands but mostly just stayed inside. Eating is fine and nothing has really bothered me so far. I can tell I go more in the mornings, but I take a Lomotil every morning so the days could look quite different if I didn’t. I haven’t really been timing my bathroom trips, just noting that they have been quite regular and about 6-8 times per day. I’ve only had to get up in the middle of the night a couple times. I haven’t had any accidents since the first week and feel very much in control. I have eaten nuts and a few veggies here and there with no problems. I feel pretty grateful and am sure I don’t have LARS. I did do lots of my own pelvic floor exercises prior to reversal based on YouTube videos and links. I think those have helped a lot.

Susan you are not a wimp! This is not the time to be a hero. Make sure to take care of yourself, which it seems you are doing. Focus on yourself during this time; it will pass.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR surgery with loop ileostomy
October 2017 - February 2018: XELOX six rounds
March 2018: reversal
April 2018: CEA 2.1, all blood counts normal
May 2018: CT scan showed liver spot
August 2018: Abnormal PET, CEA 2.4
September 2018: liver resection with HAI pump

heiders33
Posts: 275
Joined: Sat Nov 04, 2017 11:08 am

Re: Reversal surgery

Postby heiders33 » Tue Mar 27, 2018 10:58 am

I’m still experiencing abdominal pain and am so ready for it to go away. It’s not as intense as it was before. But I did some singing this morning and it exacerbated the pain. I feel like it will be weeks before it is gone. I know I shouldn’t complain, since it’s not chronic, but it’s hard not to be annoyed by it. I would like to start trying the massage technique for my bowels, but right now my abdomen is too sensitive. I also want to get out and walk and run, but it’s too challenging right now. Sigh.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR surgery with loop ileostomy
October 2017 - February 2018: XELOX six rounds
March 2018: reversal
April 2018: CEA 2.1, all blood counts normal
May 2018: CT scan showed liver spot
August 2018: Abnormal PET, CEA 2.4
September 2018: liver resection with HAI pump

heiders33
Posts: 275
Joined: Sat Nov 04, 2017 11:08 am

Re: Reversal surgery

Postby heiders33 » Sat Mar 31, 2018 4:15 pm

I’m pretty pleased that I have been able to eat a variety of foods. The only thing that seems to affect me is anything spicy, which has given me very slight heartburn. Otherwise I have had no diarrhea or adverse effects from eating vegetables, nuts, popcorn, or anything high in fiber. I do have multiple bowel movements throughout the day, but they are controllable and I’m pleased at the strength of my rectal muscles. I only had a few minor accidents in the two weeks post-surgery, and those have gone away. Also the painful gas and bloating seems to have gone away, except when I eat too much! :) The other thing that has gone away is anal irritation. So pleased!

I still have muscle soreness from the surgery, but I understand it will take a while to go away completely. The surgery is still fairly fresh.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR surgery with loop ileostomy
October 2017 - February 2018: XELOX six rounds
March 2018: reversal
April 2018: CEA 2.1, all blood counts normal
May 2018: CT scan showed liver spot
August 2018: Abnormal PET, CEA 2.4
September 2018: liver resection with HAI pump

User avatar
Atoq
Posts: 300
Joined: Wed Oct 25, 2017 9:31 am

Re: Reversal surgery

Postby Atoq » Sun Apr 01, 2018 3:26 am

So nice to hear your positive experience! :D

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
CEA 1.8
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 wedge VATS surgery
24.08.18 CAT scan, clear
12.09.18 scope, ok. CEA 1.6

heiders33
Posts: 275
Joined: Sat Nov 04, 2017 11:08 am

Re: Reversal surgery

Postby heiders33 » Sat Apr 07, 2018 8:23 pm

The other day I ate too much roughage and it ended up causing some diarrhea-like symptoms - some painful waves and frequency, although it didn’t come out as diarrhea per se. Earlier that day I had been going more frequently than normal, although I’m not sure why since I hadn’t changed anything in my diet. It could have been all the coffee I drank. Then for dinner for some reason I decided to eat a homemade burrito with ground chicken, kidney beans, cooked red pepper and onions, and raw spinach. I was up for the next few hours going to the bathroom, until I finally took a Lomotil which calmed things down. I think it will be a while before I eat whole raw spinach again!

I randomly get cramping that I think is diet-related, but it’s not too bad. Today I ate some popcorn which I think caused it. Historically, high-fiber foods have been the culprit, whereas dairy hardly has any effect.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR surgery with loop ileostomy
October 2017 - February 2018: XELOX six rounds
March 2018: reversal
April 2018: CEA 2.1, all blood counts normal
May 2018: CT scan showed liver spot
August 2018: Abnormal PET, CEA 2.4
September 2018: liver resection with HAI pump

User avatar
O Stoma Mia
Posts: 1421
Joined: Sat Jun 22, 2013 6:29 am
Location: Traveling abroad: Glasgow

Re: Reversal surgery

Postby O Stoma Mia » Sun Apr 08, 2018 12:53 am

heiders33 wrote:The other day I ate too much roughage and it ended up causing some diarrhea-like symptoms - some painful waves and frequency, although it didn’t come out as diarrhea per se. Earlier that day I had been going more frequently than normal, although I’m not sure why since I hadn’t changed anything in my diet. It could have been all the coffee I drank. Then for dinner for some reason I decided to eat a homemade burrito with ground chicken, kidney beans, cooked red pepper and onions, and raw spinach. I was up for the next few hours going to the bathroom, until I finally took a Lomotil which calmed things down. I think it will be a while before I eat whole raw spinach again!

I randomly get cramping that I think is diet-related, but it’s not too bad. Today I ate some popcorn which I think caused it. Historically, high-fiber foods have been the culprit, whereas dairy hardly has any effect.

In view of the fact that you will soon be taking a plane trip for your vacation, I think that you should start, in advance, to follow a very strict diet, avoiding roughage and other troublesome items. And I think you should probably follow a strict diet until you return from vacation so that you avoid any emergencies while you are away from home.

Whenever I went on overseas trips after my reversal. I always started on a special diet about one week before departure.

There are certain things (foods, beverages, etc) that you absolutely must avoid if you want to have a trouble-free vacation.

heiders33
Posts: 275
Joined: Sat Nov 04, 2017 11:08 am

Re: Reversal surgery

Postby heiders33 » Wed Apr 11, 2018 11:34 am

Yes, I have definitely discovered that raw spinach is my enemy, which I will certainly avoid for a while. My trip isn't really that big of a deal, though - only two hours away. And I'm actually taking another trip on Friday down south. I'm not worried at all about my bowel control, just know to avoid raw greens as they seem to cause diarrhea.

I had my final appointment with my surgeon today, which was strangely emotional. It was surreal to sit in the very chair in the waiting room where I sat almost a year ago only a couple hours after I found out I had cancer. And then to say goodbye to my surgeon, hopefully for good, was a milestone that I never thought I would get to. I'll be getting my annual follow-up colonoscopies from my GI doc who originally discovered the tumor. My surgeon recommended getting them once a year for five years, starting in July. He said I've been through a lot lately and waiting until July is fine.

My scar is healing up, although there is an indentation there that is rather unsightly and probably won't go away completely. Oh well. The pain is gone, except when I sneeze.

He said he is probably not going to attend the young adult onset colorectal cancer summit at the end of the month because he doesn't think the speakers are at the top of their field, and he as an experienced colon and rectal surgeon probably won't learn much. He would rather attend conferences and panels at MSK where they are at the cutting edge. I told him I saw an integrative care doctor at MSK who recommended all sorts of supplements, and he said that was great and that he is a big believer in those things as long as they are accompanied by standard treatments. He had a woman, not much older than me, come and see him who ended up dying because she went the alternative route only.

I'm going to miss my surgeon, as he has probably been my favorite doc through this whole process. He is hilarious and incredibly skilled and kind and direct. But of course I am very glad that I don't have to see him anymore! Mixed emotions here. Cancer does weird things to your brain.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR surgery with loop ileostomy
October 2017 - February 2018: XELOX six rounds
March 2018: reversal
April 2018: CEA 2.1, all blood counts normal
May 2018: CT scan showed liver spot
August 2018: Abnormal PET, CEA 2.4
September 2018: liver resection with HAI pump

Caat55
Posts: 511
Joined: Sat Dec 23, 2017 6:01 pm

Re: Reversal surgery

Postby Caat55 » Wed Apr 11, 2018 7:18 pm

Congrats on your milestone appointments. It is very emotional the relationships we make with people in this process. I am glad to hear you are healing.
I have found that spinach, chard and raisins are not my friends.

Do whatever it takes to enjoy your vacation and keep it up. You inspire those behind you.
S
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds


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