My husband has just recently been diagnosed with colorectal cancer. We are in the midst of trying to make a decision about the coloanal anastomisi surgery (remove layer of rectum and stretch colon and attach) this would require a temporary colostomy bag. We are also questioning the entire removal of rectum and permanent colostomy. Has anyone had an experience with the colo anal surgery or know anyone who has and if so what are the problems with post op surgery? How is the quality of life then comparable to higher quality (as we have been told by md) for permanent colostomy.
I am going through the exact same thing at the moment - trying to decide whether to have this surgery or a permanent colostomy. It is a big decision to make and I am having trouble with it too. I met one person online who said she had problems and took a long time to adjust post surgery, but she didn't give details. I'll keep you posted if i can, i have to decide pretty soon. Are you also considering radiotherapy?
My diagnosis came as a complete shock since I had no symptoms and was discovered following a colonoscopy for what I though was irritable bowel.
So if there is anyone out there who had this surgery please let us know.
look after yourself
hi maybe i can be of some help. i was in a similar situation in august 2005, i was diagnosed with colon cancer in feb 2004 whitch had spread to my liver. my first stop was the hospital for op removal of the colon tumour they put me back together with all the normal funtions.
then i did chemo for 3 months then radiation treatment on the colon area.
then i did another radiation treatment on my liver tumour, then i was classed as tumour free. after two months the tumour came back on my liver. they give me a new chemo drug called avastin, after a six week treatment i suffered extreme side effects whitch caused severe rectum pains loss of strength in my legs and it caused damage to my colon to the extent that it ate away my colon tissue whitch caused a hole between my colon and my bladder igot realy bad bladder infections and still do.
they give me a temp colostomy in august 2005 and i still have it now.
they had hoped my colon would heal if rested, since then ihave had two liver resections another bout of chemo more radiation treatment on my liver and lungs as it has spread. looking back now i can say the colostomy is still the best thing ive done,
Thanks for the reply - you must be a remarkable person to go through all that, how do you keep your spirits up? One minute I'm down the next I think I can take on anything! I'm afraid of the surgery and of waking up and getting depressed. Maybe I'm over analysing things. You must be able to handle the colostomy pretty well. I wish you the very best.
hi again, just want to update you. just come in from hospital done a ct scan on my liver and lungs, got told yesterday from the hospital that i have a new tumour on my liver and they dont know about the lungs yet, the scans from last week were not detailed enough to see the lungs, thats why i had to go again today. i finished my radiation treatment on the 9th of feb.
feeling a bit down now but i know the feeling will pass, i normally need a couple of days to a week to work on my head. the docs said i have two options witch is good, first is another liver resection or more radiation treatment the second is the easy one, the first is tempting cause i can get them to remove the temp colostomy and remove the damaged colon and give me a permanent colostomy, the risk is to high for the normal funtion, i need my stamina for the other treatments. i can have both done in one 5 hour op. there are a lot more bennefits of having a permanent colostomy the most important is i would only need to go once a day to toilet with the temp it runs constant. after a couple weeks youll be ok
Sorry to hear about the new tumor - I hope that you have social and emotional support at home to help you go through this stuff. The human spirit is really remarkable. Hope you can cheer up soon.
I have finished all my tests and I have had 2 different opinions - reconstruct or permanent colostomy - one minute I'm leaning towards reconstruction the next towards permanent colostomy. I need to decide by next week - I'm going to have a good discussion with my local colo-rectal surgeon on Tues then decide. I read everything I could find on coloanal surgery and I'm not too impressed with the leaking and retraining the bowel - whereas for some obscure reason, probably to do with talking to people with a permanent colostomy and particularly to young people who have had an ileosotomy for crohns that quality of life is very good. I've read that Shirely Bassey, Cliff Richards, Barbara Barrie and other celebs have had one for years. I guess for me its a body image thing being female and otherwise fit also the permancy of it all.
Sylvia - if you're reading this, I would really like to know what you have decided.
My Positive thoughts go out to you.
hi again thanks for the reply.
ive been thinking about your situation, and tried putting my self in your shoes. i think if i was you and i had no other health problems apart from the colon i would go for the reconstrution it may well be hard to get through but i think it may be worth a shot, remember you can always get a colostomy if things get to hard. good luck and god bless we may be ill but the illness has made us all better peaple. ill let you know about my treatment.
Just wondering how you are doing? I had the coloanal reconstruction, did pretty well on the temporary ileostomy and now I am 10 days post takedown. I am experiencing a few problems with leakage when passing bowel gas which is problem because I have a lot of bowel gas!!
Anyway I hope this will pass as I get onto a normal diet in a couple of weeks.
hope you are well again
hi, pleased to here things are not going too bad. i hope your leakage problems get under control soon. please keep me informed on your progress as i could end up in a simular situation. ive had a bladder stone removed since our last contact caused by all the bladder infections over the last couple of years. ive also had another bout of liver and lung radiation treatment ( CYBERKNIFE) in the last couple of weeks, i feel like someone has been giving me a right kicking because of the pains in the liver area. ive also had a bit of a hard time mentally issues with anger and aggression, there doesnt seem to be a lot of support here in germany for cancer patients. anyway its planned in october to either remove my colon or if i want reconstruction but i suppose i have to wait and see how my other problems look then. this shity illness is realy giving me no rest.
So busy here. My husband came out of surgery 4 weeks ago. He had a permanent colostomy. The surgeon had decided in surgery that this was the best way to go as his survival rate was 1 in 20 versus 1 in 5 with a local excision. The coloanal was 1 in 20 also but not possible for him as the cancer was too low in rectum. He is still recuperating and not feeling that great. He has a problem with constipation and gas. He also has alot of leaking from around the area where his rectum was. (He has entire rectum and anus removed) He has to change pads frequently. Doc's and nurses say body has just gone thru surgery and it will take time. however not only is this his problem he also has urine retention (and enlarged prostate). he has to catherize his self a few times a day. My brother-in-law amazingly had same dx and same surgery a week apart from my husband and he has alot of the same issues but not the urinary problem. This is a separate issue but I thought I would mention it anyway. I guess I can say that as far as the permanent colostomy goes that is the easy part and it came out good and is easy to change. We are trying different colostomy bags and products to see which ones he will order etc. So all in all he has leaking around where stiches were in butt area, gas and stomach upset, sore butt too. Docs and nurses say it will take time. He is eating more and I do see improvements everyday with him. I hope this helps you as the decision is so hard to make. (If you have the choice, I think you said in one of your posts that you were deciding on what to do) . We heard from docs that quality of like is better with a permanent colostomy as coloanal would present with leakage and frequent trips to bathroom. It all seems like a gamble and you just don't know if that would happen to you, so if you are able to speak to anyone (or more than one)who has gone through that surgery I think that would be a great help.
I'nm going on a bit but don't know when I will be able to contact the colon club again. So much going on here. Take care and I wish you the best
Thanks guys for your updates.
Sylvie, I hope your husband gets well real quick, I spoke to a fellow in a similar situation and 4 months after the op he was walking 5 kms a day and had lost 10kg of excess fat and was feeling great.
Nossacrs, a few tears were shed today as the leakage problems and sore butt got the better of me - still, reading through some of the forums I seem to be getting off pretty lightly even though twice now I would've gone straight back into theatre for a permanent bag!!. Give yourself a break you have every right to be angry and irritable with all the stuff you're going through - then you need to be kind to yourself and rest your mind and body. I usually lie on the couch with a hot pad and watch re-runs of my favorite DVD's, I can stay there for hours till the pain passes.
I am scheduled to go back to work in August but will delay it if things don't get significantly better. I have been thinking about what I would do if I was in your place and I would wait till all my other health issues were cleared up or at the very least not a daily hassle because dealing with a jpouch even a colonic jpouch is very tiring even with relatively minor issues like mine.
So, nossacrs I'm sending you good vibes over the ether - you're not alone.