Rectal cancer

Hi Lacey,

I had rectal cancer and have a permanent colostomy. If you just had the surgery, it's normal to have pain around the stoma (I think ... I did). Mine was placed close to my waist line too, and after a year, it still has problems. Like my pants fit below it and push up on it sometimes causing the flange to cut into the stoma but it's too high to wear pants above it unless I wore them right under my bust and really look dorky. So I wear pretty low riding pants. But I am so happy to be past the chemo and radiation! I just wish I could have it reversed. Good luck to you. Oh, and stomas do bleed a little - that is normal. I DO know that!

They stopped the chemo after the 4th treatment, and went straight to surgery. I lost WAY too much weight. The chemo made me sick (and I don't know what kind - it was a BLUR). I am very small but getting down to 70 pounds they were worried. Couldn't hold anything down and having Crohn's what did go down went out ASAP and that area being cancerous and very sore was too much to take. But they said I wouldn't lose as much hair as most chemos. I have a friend who has only been on hers for 1 treatment for ovarian and lost her right away. Most of what they give for anal/rectal cancer don't involve losing all of your hair. I guess the good news is, they are pretty sure they got it all. Just still having a hard time adjusting to this all even after more than a year. I hope and pray yours is as successful!!!!!!!!!!!! What are they telling you about it?

I wear 'Assets' (Spanx at Target) briefs to hold the bag in place and smooth it out. Then I wear boys A shirts (aka 'wife beaters') that I tuck in my pants. Then if my shirt rides up it doesn't show, and I admit, I feel pretty good being lightly 'packed' in a little without being squished.

Here's what I am talking about (they really are comfortable!):
http://www.target.com/gp/detail.html/sr=/qid=/ref=br_1_br_1_15/601-3670119-1942513?ie=UTF8&node=110197011&frombrowse=1&asin=B0012GRTYQ&rh=&page=1

Lacey, how much more chemo do you have to go through and when do they think they are going to do the reversal? Do they think that you will be cancer free? I had 6 weeks of radiation too. My skin was BLACK afterwards! Yes, I am back to normal weight. And most of the time feel ok. I just have some of 'those' days now and then. And fortunately I haven't had very many leaks although I have had a couple of EXPLOSIONS .

Good luck through the chemo!!!!

Lacey,

I had rectal cancer surgery 5/7/08.  Turns out is was stage 3 instead of 2, so now am having chemo.  Doing an aggressive regime according to me oncologist as I have decided not to do radiation.  I have an ileostomy and was completely freaked out about it at first.  Finding this board and reading the posts here have made it much easier to deal with.  There is no place better to get advice then from those who live with it.

If my chemo schedule stays on track (hopefully) I will have reversal surgery late December.  Nothing has went without complications so far, so I'm trying not to get my heart into that.

Good luck with your chemo!  I hope you are completely well at the end of this.

Pam

btw, none of my pants work because of where my stoma is either.  I'm pretty much living in yoga pants.

I was diagnosed with rectal cancer, April of 1999. My tumor was an inch in size, barely inside. I examined myself a few times. A rectal ultrasound revealed it was through 2 layers of the bowel tissue and possibly through the third. I had a 5 hour surgery, major incision, having my gallbladder out too (a CT revealed hundreds of gall stones too), 90% of my sigmoid removed (reservoir where stool is collected), 15 inches of my colon, a temporary colostomy (reserved 2 months later). After my colon resection, it was noted that my tumor was malignant and had to come out of course (early biopsies revealed it was cancer) but more importantly, it was resting on the third layer of bowel wall tissue. Not penetrating. My surgeon did admit I didn't need the major surgery after all, they could have "scooped" out the tumor, my stay would have been 1 day, not 7, I wouldn't have needed a temp ostomy. However, I would have need chemo or radiation and they wouldn't have had clean margins.

So long story short, he maintained it was a good thing I had major surgery.

Another but, my life has never been the same since.

I now have IBS like symptoms, multiple bm's a day (at least a dozen), have to follow a low residue diet, keep my stress level low, find the nearest bathroom when out in public (I've gone EVERYWHERE!).

But I have my life, my cancer never did come back. If I had the simple scoop-out type surgery, it may have. They could have left a few stray cancer cells I was told.

My surgeon also said 20 years ago, I would have had a perm. colostomy. But since then he seemed very proud they could return patients to normal. Meaning, no perm. colostomy, as in my case. I still laugh at his use of the word normal.

I am anything but normal.

I also eat very lightly now and sometimes fast for social events. Of all the things that I have tried to fit in with a normal colon world, it's that - less food, means less output. I fast for long car rides too. I end up feeling much better when I eat 6 very small meals a day, not 3 large ones, as I used to, before cancer. I can never eat a full meal when dining out. I have to take at least half home in a doggie bag. My latest trick is to bypass the entire entree section of a restaurant menu and order just from the sides section. A side salad and baked potato fill me up now and I'm not holed up in the bathroom afterwards.

Just keep in mind, if you experience lots of D after your reversal, you could go on the low residue diet (plain foods, low fiber, do a search and you'll find lots of links). A low residue diet saved my life back then. If not for the internet and message boards, I never would have learned what one is - most doctors suggest high fiber. Fresh summer fruits (berries and such) and whole wheat products just do me in! I can't have either. But I am happy with my diet now (which my hubby has dubbed the "white" diet, since most of the foods I eat are white: plain bread, bagels, english muffins, applesauce, bananas, white rice, plain yogurt, mashed potatoes, fish, chicken, turkey, etc.).

Wishing you my best.

Marsky/Mary

Hi Rocky Road - just remain positive and you'll do fine. I would suggest you make the most of everyday with your children but I know you already do that. I did the same (my girls were 3rd and 6th graders when I was diagnosed). They are 18 and 21 now. I was diagnosed with rectal cancer 9 years ago, so April of 2009 I will be celebrating my 10th year of being cancer free. When I mentioned the 20 years ago bit, my point was just a few short - 20 years ago - but now add 9 years to this doctor quote - so that's 29 years ago now, colon surgeons were not reconnecting patients and trying to save rectums, etc. They were not even discussing any of these options - patients were given colostomies. Just flat out told - you will have a permanent colostomy. That was that. My surgeon kept trying to get me to appreciate having had cancer in 1999 - at the time I remember just staring at him as if to ask - are you NUTS! LOL Yeah buddy, I'm glad I have rectal cancer in 1999......but in many ways he was right. Surgeons had come a long way back then.

And now even further.

They are doing inverted colostomies now. My current colon doc has suggested one to me. She said so simply - I would give you an inverted colostomy as low as possible on your left side (where the stool is the most formed, not too watery), remove your rectum, and you would irrigate your colon once a day. Wearing a bandaid over the inverted colostomy opening the rest of the day. She had lost me when she said bandaid. She said it would help me - get on with my life.

Well, I have done research since then and she is right, these patients do irrigate once a day and wear bandaids (large ostomy bandaids called Ampatch's), however some have to irrigate for hours. And you need all this special equipment to irrigate. Some have used up the alloted insurance amounts for products by now (July) and are paying out of pocket expenses for this equipment. Well guess what, we have lousy insurance now, each of us have $2500 ind. deductibles and our copays are high (Rx, $30 to $50, Office Visits $30, Specialist $60). It all adds up.

I am not ready for that simple procedure. She's a surgeon. She'd love to simplify my life. But it would only compound it, I suspect. At least now I can go in public places, relatives' homes, etc. I'd have to time that irrigation and hope I could still work part time (some patients have the irrigation process linger 5 to 7 hours!). It would a completely different way to take care of things and I couldn't go back to now. What I have learned is irrigation does help me at times (simple Fleet's enemas) so that's my approach for now. I do one or two a month. They just clean me out and give me a good span of several days.

Wishing you my best as well!

Mary

I am trying to find someone that has dealt with rectal cancer, an APR and a permanent colostomy. I had 7 weeks chemo/radiation that was not successful in shrinking the tumor then the very detailed invasive surgery that was also not very successful and am now 3 infusions in to 6 months of chemotherapy. My stoma is very sunken, misshapen and in a very bad position. I cannot find anything that works well with it. Anybody out there?

Hello, I am a 43 woman and have rectal cancer history now too. I had a polyp back in 2015 and it was removed he did a minor outpatient surgery and now have a new mass two years later that is going to require the more extensive surgery and possibly even chemo and/or radiation. I am scared that I will never get rid of this cancer as one part is gone and then suddenly a new thing develops. I was told that since the second mass happened within such a small time frame that I am definitely pregenetically disposed to it but noone else in my family has it or had it and even my brother's colonoscopy came back fine he is a year and half older than myself. So I totally get where you are coming from by being scared of this but my doctors are way on top of it. It sucks that I won't be able to use FMLA for this as I just started a new job back in May and not enough hours if its only the surgery required.