Colostomy After Anal Cancer

VickiCO said:

Living with a colostomy
I was dx'd in Oct 2008 with stage 3 rectal cancer -tumor 2 cm inside the anus. This was primary, not a recurrence, even though I have previously has cervical and uterine cancers. I went through 30 radiation treatments, multiple chemo rounds, and two surgeries. I lost all the rectum and 18 inches of colon. My surgeon was able to initially reconnect the colon to the sphincter muscle, but then stenosis set in (hardening of the colon muscle due to all the radiation damage.) After 9 months of living in the bathroom - literally 30-40 trips a day - and not being able to even grocery shop without an accident, wearing depends, etc, etc, I finally opted for a permanent colostomy. It changed my life. I have a life now. Truly, you get used to it pretty quickly. Yes, it's different and I wish I didn't have to have it, but compared to my life before, and the fact that I am even alive, it's a small thing to deal with. There are good suppliers who will help you (I use Edgepark with the Coloplast products because that is what my insurance dictates. They are great!), and my ostomy nurses are the best.

Don't let fear follow you. I am proof that having a colostomy is not the worst thing out there.

Many Hugs, Vicki

TMac52 said:

Perm Colostemy
Hi My Name is Tom,
I am a 52 year old man. I have always kept myself in pretty good shape In July of 09 I was dx'ed with stage 3 rectal cancer. It was missed on a routine colonascopy 9 months earlier so I was shocked to say the least when I was told there was a 3cm mass. I emeadiatley had a port installed and started 5fu chemo pump and 28 radiation treatments to shrink the tumor away from my sphincter. The side effects I had from the radiation was the worst thing I have ever had to edure. I couldnt finish the treatments I made it through 22 and they stopped them. I still think there was a mistake made with the dose but couldnt prove it if i wanted to. anyway I was suppossed to have surgery after 8 weeks but I was still too sick from the radiation they had to wait another 5 weeks. Finally. I underwent an APR and now have my very own permanent colostemy. I thought I was going to have a temp that would be reversed but when I came out of surgery I was told that the tumor was still attached to the sphincter and i would have had a problem with incon plus would have had to have two more surgeries down the road. So it was decided by my surgeon at the time to proceed with the perm colostemy. I am very happy and grateful to be alive the colostemy works just fine and I accepted it right away. I think the acceptance is a huge key to feeling better. I am now 3 months out of surgery it has been rough I am not going to lie. But I am finally feeling better. I return to work this week thank GOD. I'm going out of my mind watching Dr.Phil and Oprah on TV. It helped to read some of the stories on this site and some of the people that responded to your post were awesome. I am new to this site but am learning alot from it. The colostemy is not fun but it's now a way of life. 6 weeks after surgery my pathology report came back and found no lymphnode involvment at all and I was re-diagnosed with stage 1 rectal that had all been removed by the surgery. This was obviously good news to everyone. I was given the option to do the follow up chemo and chose to do it. I think human error has touched me enough and don't want to take any chances. I started 5fu and oxy this past monday I am scheduled for 8 treatments every two weeks. I feel good about my prognosis but I know how baffling this disease can be, mostly from reading the honesty of people on this site and the discussion boards. I hope your husband does not have to have the APR but if he does there is alot of us that have been through it that would be glad to help if we can. There are times with cancer that you feel like giving up, I think all patients feel it at one time or another during treatment. But we have to have the knowlege that we can do it. There are people that have done it before us to prove it. We can not give up!!!!!!! I am sending you my prayers and hope in some way that I can help. Tom

VickiCO said:

Hang in there Tom!
I've had my colostomy for a year now...it does get better. Or rather, you do get used to it. Hey, we have the best jokes though....now when someone says "Butt out", we can say "YEP! That's me!"

baotze52 said:

Colostomy
I am new on this board, But I think I can help by share some of my experience with you. I am 53 yrs old female. Had cervical cancer about 16 yrs ago,After my hysterectomy, Pathologist found a tiny tumor in one of lymph node which put me through 5 wks of radiation treatment. 16yrs later, Oct. 2008 I was diagnosed again with Anal cancer. This time I can't have radiation tx as an option, so I was given another surgery - Abdominal Perineal Resection to form a Colostomy. Unfortunately, due to previous invisible radiation damage to my bowel, After surgery I had real tough time due to blockage and sluggish movement of my bowel, I had 2 nd surgery 3 weeks after the first to unblock my intestine. During that time ,I could barely eat or drink, It went on for two months. Right before my surgeon was planning for the 3rd surgery, All of the sudden my bowel started to move, During that time I have lost a lots of weight and most time was extremely dehydrated, I Was given PICC line to keep me alive. Before surgery, I was extremely concerned about colostomy, poop bag and all that......After have gone through nearly starve to death experience, You know what? I am so happy today, At least, I can eat and I am alive. Colostomy became my least issue, Once you get used to it, the bag is so easy to take care of. During this hot summer I am always in my short and nobody even notice the bag. During my sickness, I truly found out that life is too precious to waste, Don't let Colostomy scare you, Prepare your surgery well, Be aware! Your radiated bowel may take longer to recover than you anticipated.I wish your husband all the best, Please let me know if you have any more question that I can help you with.
Baotze52

New to board. Reoccuring anal cancer. Having colostomy surgery. Possible 2nd colostomy. Total hysterectomy. I am very scared. Thanks for your story!

Ouch_Ouch_Ouch said:

Hello!

Hello, Diane Johnson64:

I'm so sorry that you are going through this. It does sound scary, indeed.

This is an old thread from 2010, though. Maybe you could start a new thread of your own and get responses just for you. All the best.

 

Never mind, Diane. I see that you already did that.

Glad to hear that you are doing well  - I too had a hysterectomy and c-section so I know what you mean by the particular pain. I know this is an odd question to ask and if too personal please forgive me but was your hysterectomy vaginal or abdominal? Reason I ask if I have a theory as to why I had HPV anal cancer but was never diagnosed with HPV in any of my paps.