Don’t want to lose anus

Posted by jenmo @jenmo, Dec 23, 2022

New member. Just received diagnosis with tumor 1cm from sphincter. Has anyone had a tumor shrunk and removed without losing their anus/sphincter and ability to poop normally? Any hope at all?

The idea of losing my body parts and changing my life forever, colostomy bag and whatnot as a single mom in her 40s is excruciatingly scary and depressing. Afraid of how I will manage chemo as a single mom but even more how to feel whole.

Desperate to hear hope that I might not lose ability to poop normally.

Interested in more discussions like this? Go to the Colorectal Cancer Support Group.

Yes and stool softeners.

REPLY
@colleenyoung

@yssaf, please accept my belated welcome. I really appreciate your sharing your story along with @omardr's comment supporting @jenmo and decisio-making. It helps so much to hear from others who have been there.

I hope you'll also follow the Ostomy support group here: https://connect.mayoclinic.org/group/ostomy/

Yousif, you mention that you have returned to your active lifestyle with a stoma without feeling limited. Can you share an activity that you thought you'd have to adapt or give up and that you were able to continue after all?

Jump to this post

Hi Colleen ,
Sorry for the late feed back ,
see examples examples ,
I was worried that i will not be able to do cycling and thankfully i did .
I was also worried that i will not be able to take shower without carefully thinking about the stoma , it turns out it's totally ok .
Camping activities for longer hours , I doing as i was before .
Running , I am running with a belt on .

Hope this will help

thanks
Yousif

REPLY

Please do not let that %^&* even touch you. You are the patient and YOU make the decisions as to what you want to do with YOUR life. No body even doctors need to treat people that way Run from this jerky. I too am a anal cancer patient just starting chem & radiation with hopes to be done by Halloween. I started with a positive Cologuard to colonoscopy with an appointment with a rectal surgeon. But each test that they did they came back with the results a month later At the rectal surgeons appointment she asked if she could do a biopsy I said sure lets find out what this is Can back positive but then blamed me in her report that she went over her time allocation. But the cancer was contained at this point Surgery day set up get to the hospital & procedure was cancelled as time had been moved up. Never a call or nothing if such & such time would work. I left her hanging with this game of hers. And then they had the gall to call me & wanted to repeat all the tests I had just done. Hospital was just looking for money the heck with the patient After 5 months of being kept in the dark this poly now is cancer all because of the 1st hospital that kept dragging me along but never keep one informed
Then went to Milwaukee Wi oncologist & radiologist were great gave good % of beating this. Saw the surgeon there And she said go die or a bag. Tried to explain to her my life style would not work with a bag heavy equipment & large animals I work with Did talk to someone that had a bag & was just a piece of cake his life style was pretty quite to my work style And insisted once I had another MRI she could not tell me the results until 12 days later but her nurse could tell me the same results the next day. Boy that made sense
SO I said to heck with this group & went to Mayos What a difference in how a patient is treated. Their goal to help people to live not told to go die I know this is long but PLEASE get yourself to a real cancer center. Mayos in Minnesota ,Sloan Kettenring New York or MD Anderson in Houston
It's your life their can suggest but I made the decisions not some knife happy surgeon and you can do this too I was told I am cranky but I call it standing up for my rights. You are the patient you get to have the final say

REPLY

I think I am in the same situation.

I have finished radiation (feb 7th) and had a sigmoid only 2 weeks later as I developed an anal fissure from constipation, point being, my tumor was gone visually only an ulcer left and biopsy came back clear.

I start CAPox regimen on Thursday, as I have lymph node involvement but I am very confident in beating this cancer and putting off the surgery. I have come to terms with a possible ostomy though but I sounded just like your post right after diagnosis. I was most concerned with my marriage and our sexual relationship.. but my husband said we can make it through anything and I have heard they have bags now that filter any unexpected gas etc.
and they have bag covers…..

After going through constipation with an anal fissure, I was honestly wondering if I could make it through all treatment! I was in the ER screaming in pain while trying to have a BM. It was the most painful moments of my entire life thus far so let me tell you that a bag sounded like heaven!

Good luck and I will pray that you are able to feel more comfortable IF and only IF that becomes your only treatment option but I bet it’s not after rad and chemo

REPLY
@chinoomee

I think I am in the same situation.

I have finished radiation (feb 7th) and had a sigmoid only 2 weeks later as I developed an anal fissure from constipation, point being, my tumor was gone visually only an ulcer left and biopsy came back clear.

I start CAPox regimen on Thursday, as I have lymph node involvement but I am very confident in beating this cancer and putting off the surgery. I have come to terms with a possible ostomy though but I sounded just like your post right after diagnosis. I was most concerned with my marriage and our sexual relationship.. but my husband said we can make it through anything and I have heard they have bags now that filter any unexpected gas etc.
and they have bag covers…..

After going through constipation with an anal fissure, I was honestly wondering if I could make it through all treatment! I was in the ER screaming in pain while trying to have a BM. It was the most painful moments of my entire life thus far so let me tell you that a bag sounded like heaven!

Good luck and I will pray that you are able to feel more comfortable IF and only IF that becomes your only treatment option but I bet it’s not after rad and chemo

Jump to this post

I had my ostomy surgery this past October 2023. I feel like I have my life back. After almost 18 months of living in the bathroom or looking for one I feel great. It’s not as big a deal as some people make it out to be. Yes, there’s a lot to learn and it is life changing, but in a good way! My sphincter muscle was destroyed from the radiation treatment. I had anal cancer. It’s gone now. I just had my first MRI and it showed I am still clear of cancer. I will also have avPET scan for the upper body as this cancer can go to lungs and liver. If you’re not 100% satisfied with your doctors look for others. I am a patient at Mayo Clinic in Florida. Everyone and I mean everyone is top notch. Having an ostomy has given me back a good quality of life. Don’t be afraid of it!

REPLY

I also have a new diagnosis of anal cancer; mine in greater than 2cm and in the sphincter muscle. I will have radiation and chemo for 6 weeks. This is one of the questions I asked my radiation oncologist because of comments I read on here. He told me that if my muscle is working now, it should continue to work after radiation is finished. I hope he is correct. I will see my other oncologist on Tuesday to get my plan of care for chemo. It will be concurrent with the radiation and my radiation oncologist said it is normally at first and last treatment of radiation. I was expecting weekly treatments so this make me feel better about what is coming. I try to remember that everyone has different experiences, but I still appreciate reading their comments. Even if I don't go through the same side effects, I feel that I can learn more from everyone. Ask lots of questions with your care providers and research as much as you can so that you are prepared and can make choices that are right for you. By the way, I am a critical care nurse whose brother died from colon cancer. He had a colostomy and dealt well with it. He was able to continue all activities until just before he died. Good luck and prayers for you.

REPLY
@chinoomee

I think I am in the same situation.

I have finished radiation (feb 7th) and had a sigmoid only 2 weeks later as I developed an anal fissure from constipation, point being, my tumor was gone visually only an ulcer left and biopsy came back clear.

I start CAPox regimen on Thursday, as I have lymph node involvement but I am very confident in beating this cancer and putting off the surgery. I have come to terms with a possible ostomy though but I sounded just like your post right after diagnosis. I was most concerned with my marriage and our sexual relationship.. but my husband said we can make it through anything and I have heard they have bags now that filter any unexpected gas etc.
and they have bag covers…..

After going through constipation with an anal fissure, I was honestly wondering if I could make it through all treatment! I was in the ER screaming in pain while trying to have a BM. It was the most painful moments of my entire life thus far so let me tell you that a bag sounded like heaven!

Good luck and I will pray that you are able to feel more comfortable IF and only IF that becomes your only treatment option but I bet it’s not after rad and chemo

Jump to this post

There isn't much talk of the impact of our surgeries on our sexual life, is there? I've seen groups open to talk about sexuality for women with breast cancer, but I haven't seen it for people with colorectal cancer. Why?

REPLY

Yes, I know we should talk about it more…even if someone doesn’t have a bag or have had resection (recovery) or just chemo med induced diarrhea/gas it definitely interrupts any sexual activity. Well, even constipation can and these are all things we will all experience. I did find a few articles on the ostamates support website and there is also a section in the NCCN patient guide.

REPLY
@chinoomee

Yes, I know we should talk about it more…even if someone doesn’t have a bag or have had resection (recovery) or just chemo med induced diarrhea/gas it definitely interrupts any sexual activity. Well, even constipation can and these are all things we will all experience. I did find a few articles on the ostamates support website and there is also a section in the NCCN patient guide.

Jump to this post

Could you share the links, please?

REPLY
@verol65

There isn't much talk of the impact of our surgeries on our sexual life, is there? I've seen groups open to talk about sexuality for women with breast cancer, but I haven't seen it for people with colorectal cancer. Why?

Jump to this post

@verol65, I encourage you and @chinoomee to start a new discussion about intimacy and sexual life living with colorectal cancer. I'm confident that there will be others who would welcome the opportunity to talk frankly about a subject that is often not talked about.

REPLY
Please sign in or register to post a reply.