My First Time: A Journey of Challenges and Triumphs

This is my first time for many things. Life can throw you many curves, hopefully I can keep bending with them.

My journey began in Feb. 2010 when I discovered blood in my stool. I waited 7 months and finally got called for a colonoscopy (I called many times to see what was taking so long). Oct 2010 the surgeon told me I had a tumor in my rectum very low, was sent for a CT scan that same day. Not sure but I think that he took a biopsy at the time of colonoscopy. Thanksgiving weekend found out tumor was cancerous but no cancer in other organs (whew). Now the waiting game again as surgeon wants an MRI done (should be in within 2 weeks) 6 weeks later after many calls get appointment.

Jan 2011 start oral chemo and 28 treatments of radiation to shrink tumor. After a bit of recovery and more appointments had surgery (abdomino Perineal bowel resection). Was not prepared for that one. I came out with a permanent colostomy because it was very low and had to take the muscle. But cancer is gone. Thank you. Just started getting to the stoma and all that goes with it when they tell me I have to take more chemo (precautionary). As of now, I have one more treatment.

I have been having a bit of problems with my colostomy staying on. Have not gone back to see ostomy nurse because of the chemo my output changes, but when I am finished chemo and feeling better I am going.

Just wanted to say thank you to all on this site has lifted my spirits from time to time and there is good advice from all.

Thank you!!! Keep up the good work to all

Hi, Farmwife, I went through the same thing as you. It started with a little blood in my stool, which I thought at first could have been hemorrhoids. But then the bleeding started getting worse followed by other symptoms, and I knew something was wrong. I got my colonoscopy in February, and sure enough, there was a large low-lying tumor in my rectum. They sent me for a scan right away. The biopsy reports came back suspicious of cancer, but I was sent for another biopsy and an endoscopic ultrasound. Sure enough, I had cancer, and the ultrasound indicated it was stage 3. But luckily, the scan results showed no signs of cancer in other organs. My surgeon told me that because the tumor lay low, I had to have the abdominal perineal resection. But first, I had to have 6 weeks of radiation and chemotherapy. I had to wear a pump 5 days a week. That is how I got my chemo. I didn't have many side effects with that drug. But the radiation made the skin on my back end so sore that passing stool was like passing a cactus out my butt. And I had to try stool softeners and suppositories for relief. They didn't help much. When I finished my treatments, the surgeon waited 4 weeks for the skin to heal, and I finally had my surgery in June. It took about 6-8 weeks to completely recover. I just started getting chemo treatments again as a precautionary measure. But they added a new chemo drug called Oxaliplatin. It's only for colon and rectal cancer. Is that the drug they are giving you? I haven't had any problems with my pouch staying on. I use a 1 pc closed-end pouch, the kind without tape. And it holds well. I was using the Hollister Premier 1 pc closed-end, which works well for me. But I just tried out the 1 pc Convatec, and I like them too. I don't use the drainable kind because my stools are solid, and I am a bit of a germ phobe and didn't feel sanitary squeezing poop out of a bag. I like the closed-end because I could just toss them out and replace with a clean one. Well anyway, it seemed like most of the people on here have had ostomies because of Crohn's disease. I am glad to read of an experience of someone that had cancer like me. Good luck!

Hi, DH. It is nice to hear of others like ourselves. Right now, I am on the chemo Oxaliplatin and Capecitabine. When I was doing radiation, I was also on Capecitabine. The radiation was hard. I really used the sitz baths a lot. Right now, I am on a 2 pc Hollister closed pouch and am using a liner as I seem to be going often. I get about 3 days out of my flange, then I have to change. Finally, I am just giving up and doing it my body's way for now. I am hoping to get to an ET nurse after finishing chemo. They are at least 3 hours away from where I live. I don't like drainable either, stools solid, and hate the stool. Nice to hear from you and good luck also!

Last year, I was diagnosed with lower rectal cancer. Actually, it was just over a year ago. I had an abdominoperineal resection (APR) with a permanent colostomy at the end of August 2010. I had 6 weeks of pre-op chemo and radiation, but no post-op chemo. I was out of bed and walking the day after surgery and back to work in less than 3 weeks. I hate sitting around. It has definitely been a journey.

I use the Hollister New Image 2-piece system and irrigate every evening around 6-7 pm. Your system will take at least 6 months to begin acting normal after everything. Eat small portions of what you like; this will keep your system from pushing it through too fast. Be innovative. I am surprised how few items are out there to support colostomies. Best of luck to you. Take it one day at a time.

My story is very similar. Rectal cancer was found on routine exam after a little bleeding. Resection of some colon and upper rectum in 2005. Chemo with Xeloda. Recurrence was found in 2007, had abd.perineal resection with permanent colostomy, radiation, and chemo FOLFOX. Ileal resection in 2010 for radiation damage. No further sign of cancer on annual colonoscopy. I have now had a colostomy for almost 4 years. I have gotten well adjusted to accepting it. Lucky not to have any appliance problems except for an occasional accident on the 4th or 5th day. I use Hollister two-piece, rings, and lubricating deodorant. Time is a great healer!

I have found reading all your comments very interesting. I had my colorectal cancer surgery 2 years ago (Aug. 25/09) and was fortunate that they got all the cancer and I didn't require chemo or radiation. BUT I have had a terrible time trying to get my system to work properly. I did have an ileostomy for 6 months after an abscess (2 weeks after surgery) -- it was reversed and we hoped for clear sailing. Because they removed my rectum, I have no holding space, they also removed 18 inches of colon. Now my life revolves around a bathroom close by at all times. If I want to drive anywhere or fly, there are no eating days. Then when I eat, I have major issues. I am currently scheduled for another colonoscopy in Oct. and I am seriously thinking of asking for a colostomy so I can lead a normal life. I do read of a lot of problems with that so really wonder where do I go from here? My surgeon is great at what he does but he figures if the cancer is gone, you are A-1. He doesn't realize what it is to be glued to a toilet if you eat. I have done the Metamucil, Imodium, bland diet, fiber diet and nothing seems to be the answer. I would love to hear any ideas you have. Thanks...

If you are dealing with going to the bathroom all the time, in my opinion, it is worth it to have the colostomy. I had the bleeding and always felt like I had to go to the bathroom too. It really started to control my life as well. Now, I have to maintain the bag and all that goes with it, but I have control of my life back. The hardest part is the gas. I have a job where I have meetings in front of 10 to 30 people and I ended up fabricating a belt to control it. Works like a top. I have been wearing it for over 10 months now and can have gas without anyone knowing it. I haven't told anyone at work and am able to operate normally with no major issues. Irrigation makes it very manageable. Hope that helps, Best of luck...

Hi Farmwife, I went through the exact diagnosis and treatment as you with the same results. My last round of chemo was last August 26th. I tried different appliances while under the care of the home nurse but settled with the Hollister 15203 flange and the 18373 pouch two-piece disposable. I was also having accidents when I first started out and having a hard time with them sticking. I found that when the stool is loose, that's when most of the problems occurred. The doctor told me to take two Imodium A/D whenever I had a loose stool and more if it continued. Sometimes I will have to take up to 8 of them. After the Imodium starts to work, it tightens up the stool and my problems went away. I did not take them if I had cramps and would wait until the cramps went away, but afterward, I was fine. I am now very active with my job and volunteer work and would still have problems with the flange coming loose, but someone on this site talked about a trick of heating the flange with a hairdryer before applying, and it worked great. When you heat it up, you have to remove the backing before heating or you will never be able to pry them apart. I also noticed that right after all of the surgery and treatments, some foods that I could eat before would really tear me up, but over time that has gone away and I am eating the same as before without problems. Sweating is also a problem for me with the flange. You can shower with them and get into a hot tub with them, and they will stay on, but sweat a little and off they come. Heartwarming told me about a product that she uses to prep before putting on the flange, which seems to work for her to protect against sweating, and it's called Benzoin. I have not tried it yet but plan on it. She said it's an over-the-counter drug. Hope this helps and talk to you later. Ed

Thanks for all the comments. It is nice to know that you're not alone. I was using colopaste on my flanges until I ran out and used a protective barrier wipe, and my flange has been on for 5 days now. I can't believe it. Hopefully, it just isn't a fluke thing. I will see soon because I seem to go through the flanges the week of my treatment, and that is next week. Ed, thank you for your post. I never took any Imodium because I feared constipation, which I have had. It has been hot here, so maybe sweat is the problem. I have heated the flange with a hairdryer, but that never worked for me. I will also look for the product benzoin. Thanks again to all.