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Newcomer looking for help.

timf51
Posts: 2
Joined: Apr 2004

I was diagnosed in November 03' at the age of 52 with colorectal cancer following a colonscopy. I had 25 radiation/chemotherapy (Xeloda) treatments in December and January to shrink the tumor and was lucky enough to have few side effects. I had surgery on 2/23/04. The tumor was so low in my rectum I needed a permanent colostomy and perineal resection as the tumor had invaded the perirectal soft tissue. On 3/22/04, I began 6 months of chemo with 5 FU & leucovorin. I will have 6 weeks on, 2 off, 6 on, 2 off and the final 6 treatments, so I will not be done until August.

So far the side effects have been tolerable but the healing process from the surgery has really slowed down as sometimes I can feel every staple the surgeon put in. I was worried about handling the colostomy thing but I am doing a lot better than I thought I would as it just takes getting used to.

However, I am experiencing much more pain in my rectum than I thought I would and it is becoming particularly annoying and I am looking for any suggestions for relief. It seems the chemotherapy has stopped the healing process as the area is always sensitive. I am using a donut when I sit and that helps somewhat and sitz baths offer some short-term relief. I have returned to work part time but I sit at a desk and after sitting for 4 hours the only real relief I can get is from my pain medication. Any help for this newcomer would be appreciated.

Tim

nanuk's picture
nanuk
Posts: 1363
Joined: Dec 2003

I had the identical surgery in 2000, and was given a
4" thick foam cushion to sit on, which went everywhere with me for about 6 months. Even with that, I had to get up and move around frequently.
Exercise-(walking) also helped the healing process.
You might also ge some valuable information from the UOA website-http://www.uoa.org/discussion_main.htm
and IOA website:
http://ostomyinternational.org/
Bud

taraHK
Posts: 1961
Joined: Aug 2003

Hi Tim. I have a very similar story: I was diagnosed with a low rectal tumour. I had 6 weeks of chemoradiation, then surgery - including perineal resection and resulting in a permanent colostomy. Then postsurgical chemo (in my case, just 4 mos).

My impression from other folk who have had this surgical procedure is that the perineal wound is the most painful and difficult. So you are certainly not alone!

I also sat on a soft pillow for some time. I have heard some people say that a donut pillow is not such a good idea, as the hole in the middle can actually encourage separation rather than healing. I used one without a hole. I found it difficult to sit at the table for a while - and once ended up watching the end of a movie standing up at the back of the movie theater! In my case, it did get all better eventually. I don't have any discomfort now. I haven't tried riding a bike yet! But I think I could. I tried sitz baths too. Not sure if they really helped - but, one tries everything! Like Bud, I walked a lot (every day) and I feel that might have helped the healing.

I'm afraid I don't have any other suggestions, but I certainly do wish you all the best.

Tara

aspaysia's picture
aspaysia
Posts: 257
Joined: Nov 2003

I had the same surgery and treatment. It took a long time for me to feel comfortable sitting down. The donut did not help. Cushions are best. I even watched TV and slept on my side. Could not lay on my back because of pressure on surgical site. The radiation really fries everything and causes a lot of scar tissue. It felt like I was carrying an anvil around in my bum. The heaviness went away with time and now I can sit for longer periods but it is a *****--like everything else about this disease. Hang in there (no pun intended)
Aspaysia, who can sit around for hours.

timf51
Posts: 2
Joined: Apr 2004

Thanks for your input, I've mentioned this problem to several people and they look at you like it's all in your imagination. I do like the idea of walking and it is finally getting warm enough here in Cincinnati to get out and do more of that. One of the hardest parts of this process has been putting up with the cold and nasty weather as you go for all those pre & post op treatments. It also helps knowing there are lots of folks willing to help with these issues that most healthy people don't like to hear about as it just seems your whining. Looking forward to getting to know my board mates as we fight this battle together.
Thanks Bud, Tara, & Aspaysia

Tim

jcops
Posts: 3
Joined: Apr 2004

I'm a newcomer too...I'm stage I, I believe....how are all of you terrific folks surviving? I am 46 and will, too, have a colostomy bag. I'm told I should be able to be back at work after about two weeks of recovery. I am also being put on a very aggressive form of radiation and Xeloda even though there is no spread. Does this sound encouraging to you all? Your thoughts will be greatly appreciated!!!!

jcops
Posts: 3
Joined: Apr 2004

I'm a newcomer too...I'm stage I, I believe....how are all of you terrific folks surviving? I am 46 and will, too, have a colostomy bag. I'm told I should be able to be back at work after about two weeks of recovery. I am also being put on a very aggressive form of radiation and Xeloda even though there is no spread. Does this sound encouraging to you all? Your thoughts will be greatly appreciated!!!!

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