Meet & talk to fellow OstoMates Support | Friendship | Relationships

Perianal area removal surgery soon

Sat Jul 18, 2020 12:22 pm
This is a great community. Consider joining.

I'm having to have my rectum and muscle/tissue around it that radiation ruined removed and the hole left being closed up by pulling the skin and muscle strip from my right rib cage through my body and out the hole, flip it and sew it in place closing up the hole forever. 

Has anyone else here had this surgery?  How was recovery? 

I'm totally terrified but the pain I live with now is becoming too much to bare anymore.  I was diagnosed with a rare cancer that had no how to treat ideas 4/19 ', so the Dr.s went with the anal and rectal treatments.  No cancer on last MRI last month but now I have a been left with a growing wound around the anus they tell me may never heal.  I've been  dealing with this growing sore for months. and had my ostomy this past 3/17 (happy St Patty's day to me!!)

So any comments welcome!

Shy Missy

These are the top 5 issues ostomates face:

1. Dating and relationships
2. Concealing the pouch
3. Foods to eat and avoid
4. Losing or gaining weight
5. Pouch ballooning

Check out this video from MeetAnOstoMate.
Past Member
Sat Jul 18, 2020 1:06 pm

  Hi Shybutsweet,

I had stage 3 rectal cancer with a big growth right at my anus. I did five and a half weeks (m-f) of chemo and radiation, then surgery. They removed my anus sewed it shut. I tore some stitches, it was infected from the radiation. It wasn't healing so they cut it open (6 or 7 inches) to drain and heal. Well that wasn't happening because of the radiation frying my tissue so badly. After months of changing dressings 2-3 times a day they decided to use a wound vacuum to draw it out. I had to carry that around and taped up tight for the suction to work for months. Eventually back to a dressing several months later it healed. The tissue had to grow until it filled the gap. I had to lay on my side during most of that time. 

Talk about cabin fever I was fit to be tied! Hopefully you will have a much easier process. 

During that time I found an air waffle cushion worked the best when I started sitting.  

Let us know how it goes.  mtnman 

Past Member
Sat Jul 18, 2020 3:46 pm

Hi SBS,

 I also had problems with the healing of my surgical wound because of radiation. I had my anus removed, and nothing - no wound management technique would get it to heal. Finally, I was referred to one of the best colorectal surgeons in the country, and one of the first things he said to me was that I might be a candidate for Hyperbaric Oxygen Therapy. I had never heard of it, and none of the 7 other doctors I had consulted mentioned it. Long story short, after 6 weeks of daily HBOT treatments, my wound had begun to show signs of healing for the first time in 2 years. It did take another 5 months to finally close, but I remain convinced that it never would have if I hadn't gone for HBOT. 

I was also offered a flap surgery much like yours, although mine would have used the gracilis muscle in my thigh. I decided that I would pursue every option that was less invasive first, and I'm so glad I did! Because of the HBOT, my wound healed without surgery. 

SBS, please click on my name (Padfoot) on the left side of this post. That will take you to my profile, and the forum topics I have initiated. One of them is about HBOT. Please read it, and then find out more about it - there is lots on the internet about it, on reputable sites like the Mayo Clinic. I hate to sound cynical, but sometimes surgeons only think in terms of surgery as a solution. You owe it to yourself to at least know about, and consider all the options. This may or may not be an option for you, but how will you know if you don't know about it? I had pretty much given up hope that my wound would ever heal, and HBOT was a Hail Mary. But it worked.🙂

Feel free to send me a private message if you want.

 

Laurie

Sat Jul 18, 2020 5:25 pm

 

Mtnman wrote:

  Hi Shybutsweet,

I had stage 3 rectal cancer with a big growth right at my anus. I did five and a half weeks (m-f) of chemo and radiation, then surgery. They removed my anus sewed it shut. I tore some stitches, it was infected from the radiation. It wasn't healing so they cut it open (6 or 7 inches) to drain and heal. Well that wasn't happening because of the radiation frying my tissue so badly. After months of changing dressings 2-3 times a day they decided to use a wound vacuum to draw it out. I had to carry that around and taped up tight for the suction to work for months. Eventually back to a dressing several months later it healed. The tissue had to grow until it filled the gap. I had to lay on my side during most of that time. 

Talk about cabin fever I was fit to be tied! Hopefully you will have a much easier process. 

During that time I found an air waffle cushion worked the best when I started sitting.  

Let us know how it goes.  mtnman 

Thank you Mtnman. i have been pretty much bed ridden the last few months,  laying on my sides  like you said.  We did the Hyperbaric chamber but I ended up worse then when I started.  Chemo was not an option,  I have been on Keytruda infusions every 3 weeks since last May.

Sat Jul 18, 2020 5:30 pm
Padfoot wrote:

Hi SBS,

 I also had problems with the healing of my surgical wound because of radiation. I had my anus removed, and nothing - no wound management technique would get it to heal. Finally, I was referred to one of the best colorectal surgeons in the country, and one of the first things he said to me was that I might be a candidate for Hyperbaric Oxygen Therapy. I had never heard of it, and none of the 7 other doctors I had consulted mentioned it. Long story short, after 6 weeks of daily HBOT treatments, my wound had begun to show signs of healing for the first time in 2 years. It did take another 5 months to finally close, but I remain convinced that it never would have if I hadn't gone for HBOT. 

I was also offered a flap surgery much like yours, although mine would have used the gracilis muscle in my thigh. I decided that I would pursue every option that was less invasive first, and I'm so glad I did! Because of the HBOT, my wound healed without surgery. 

SBS, please click on my name (Padfoot) on the left side of this post. That will take you to my profile, and the forum topics I have initiated. One of them is about HBOT. Please read it, and then find out more about it - there is lots on the internet about it, on reputable sites like the Mayo Clinic. I hate to sound cynical, but sometimes surgeons only think in terms of surgery as a solution. You owe it to yourself to at least know about, and consider all the options. This may or may not be an option for you, but how will you know if you don't know about it? I had pretty much given up hope that my wound would ever heal, and HBOT was a Hail Mary. But it worked.🙂

Feel free to send me a private message if you want.

 

Laurie

I thank you so much for the reply, yes we did try it and I'm still getting worse.  I was soooo hoping it was going to be my miracle cure. 

Past Member
Sat Jul 18, 2020 7:52 pm

Shy Missy,

 I am so sorry that HBOT didn't work for you. The flap surgery has a good chance of working, because the flap is still attached to you at one end, and therefore, oxygenated. It sounds like you have had a pretty rough time in the past several months. I hope the surgery will bring you the relief you need. All the best.

Laurie

Past Member
Sat Jul 18, 2020 8:54 pm
Shybutsweet wrote:

 

Thank you Mtnman. i have been pretty much bed ridden the last few months,  laying on my sides  like you said.  We did the Hyperbaric chamber but I ended up worse then when I started.  Chemo was not an option,  I have been on Keytruda infusions every 3 weeks since last May.

   Hi you have had it rough, just know you are amongst some caring people here, some have experienced a lot as well. I hope you'll get some relief soon. We are here for support and answers.  mtnman 

Past Member
Sat Jul 18, 2020 9:12 pm
Mtnman wrote:

   Hi you have had it rough, just know you are amongst some caring people here, some have experienced a lot as well. I hope you'll get some relief soon. We are here for support and answers.  mtnman 

  One more thing: my wound was quite deep but the Negative wound vac made a big difference in the healing process. They changed the dressing 3 times a week. Ask about it or Google negative wound pressure therapy. I hope this might help? I did the wound vacuum for about 3 months. Long process but it really helped the good tissue to grow back.  ..mtnman 

Sat Jul 18, 2020 11:34 pm
Mtnman wrote:

  One more thing: my wound was quite deep but the Negative wound vac made a big difference in the healing process. They changed the dressing 3 times a week. Ask about it or Google negative wound pressure therapy. I hope this might help? I did the wound vacuum for about 3 months. Long process but it really helped the good tissue to grow back.  ..mtnman 

Again I thank you very much.  It has been very rough,  every time they come up with something that is supposed to be the  'cure' I come out worse.  So I'm vey scared of this surgery but told it's my last hope.  Reading other people's profiles on here has been very helpful.  4 months and I'm still trying to get this bag changing figured out, lol.

Sun Jul 19, 2020 8:49 am

Hi Shy,

I too have had that surgery. I was diagnosed with a cancer that typically presents in the lungs but never in the rectum. It is in Nuro endocrine tumor that caused me to have my surgery. I had had cervical cancer 15 years ago and underwent radiation,HDR, and chemotherapy at that time. The collateral damage from all of that was pretty bad. When this tumor was found they could not do radiation because of the previous damage. I just had the chemotherapy and then the surgery. There was no tumor left after the chemotherapy but because they needed to make sure it was gone and get good margins they continue to do the surgery. It was a Big surgery because not only did I have my rectum sealed using the muscle from my chest. The six pack, I now have a three pack. Ha ha I also had the tumor removal and the ostomy done all at the same time. It was very sensitive for a long time. I stayed in bed for only about a week or so after the surgery. And I only took the pain pills about that long also. I'm not one to take pills so I wanted off of them as soon as possible. I think the worst part for me is they made me have a Foley catheter because they did not want any of that area getting wet. So I had a lot going on at one time but I'm glad I got it over all at the one time and didn't have to go back for additional surgeries. It's all worked out great. It did take a long time before I felt like that flap of skin was a part of my body. It always felt like your panties were in your butt. And sometimes it still does. But it feels more natural now. You just have to be very careful getting up and down, go  very slow and otherwise, I didn't have any other problems. It actually took me about a year before it completely felt like my own skin.

Good luck with your surgery. Keep us posted. 
Puppyluv

Sat Jul 25, 2020 8:15 pm

I actually had the same surgery back in may 2013, and amazingly it went great. So keep a positive attitude and as always hope for the best. Good luck!

* Please, do not post contact information, personal information or advertising.
All times are GMT - 5 Hours
Currently online: 24    
3 members & 21 visitors