decision to make

cherriann · May 2006

hi all,
today i went and seen my surgeon. not great news but kinda expected. anyways he can try and remove the tumor but doesnt think i will be able to gain bowel control because the tumor still involves the spchinter muscle but there is a chance i could. the other downfall of that is the higher chance that the cancer will return. the other option is to just go for the colostomy which i so so dread. i know i have talked about this before but now it is coming down to the wire and i guess i have a decision to make. all your thoughts and experiences will be a godsend even if you have replied to this question from me before. thanks again for being such great support for me.
cherri

markatger · May 2006

Hi Cherri,

So sorry for the difficult decision you face. I had my ileostomy for 9 months. I HATED it for the first month or so...but after that I adjusted pretty well. I actually was pretty nervous about getting rid of it and kind of miss some aspects of it....for example I am a gassy person...hate to admit it...but with the bag, the gas is all contained in the pouch. So that was actually a benefit of the pouch. I think colostomies are even easier to manage than ileostomies, which have much greater output. Some people can irrigate and have some level of continence and I think may be able to sort of cap their stoma off for periods of time and not wear a bag.

With the little information, if it was me I think I would be inclined to get the colostomy. But I am a worry wart and tend to want to remove anything that could be compromised.

Anyways...there is my two cents...hope its worth at least that much...

Best Wishes with your difficult decision,
Maria

goldfinch · May 2006

Cherri,
I hope moesimo (Maureen/Moe)responds to your email. She had to make a choice re permanent colostomy after her hook up didn't go as planned.
I can understand your indecision. My tumor was very close to the shincter muscle, however after chemo/radiation it had shrunk enough that the doc felt he could probably reattach the colon to it. I went into surgery with the understanding that once he got in there, if reattachment down the road wasn't a viable option he would give me the permanent colostomy. If the sphincter looked good he would give me a temporary ileostomy. The first thing I did when I woke up in recovery was to check which side the bag was on. It was on the right (temporary ileostomy). I was so happy.
Having said that...the reattachment had many complications and there was period where I seriously considered going back for a colostomy.
THings settled down, but life isn't perfect. I'm more prone to diarrhea even when I'm not on chemo. I sometimes lose control, so have to wear a pad at all times, sometimes a diaper (esp when I'm on chemo). I go more frequently (3-10 times per day), though not as often as I used to. It's all somewhat manageable, though I do feel tied to the bathroom more than I would like (a lot of that has to do with the chemo though)
The ileostomy was fairly easy to handle and a colostomy is supposed to be even more so. You have more control with a colostomy.
As I said, I hope maureen and some of the other folks respond soon.
Good luck with the decision.
Mary

Kanort · May 2006

Hi Cherri,

I don't have any wisdom to share with you as I only had to have a resection. However, I do want to share that you will be in my thoughts and prayers. I believe if I had to choose, I would go for the one with the better chance of non-recurrence. Keep us posted.

Hugs,

Kay

Betsydoglover · May 2006

Cherri -

I hardly have any right to give advice, because my tumor was higher up in the sigmoid colon and neither a temporary or permanent colostomy was an issue. But, much as you dread it, I think you should go with the option that has the least chance of recurrence. Cuz recurrence is definitely what you do not want!

I'll be keeping you in my thoughts. And I know this is a tough decision.

Betsy

cherriann · June 2006

goldfinch said:
Cherri,
I hope moesimo (Maureen/Moe)responds to your email. She had to make a choice re permanent colostomy after her hook up didn't go as planned.
I can understand your indecision. My tumor was very close to the shincter muscle, however after chemo/radiation it had shrunk enough that the doc felt he could probably reattach the colon to it. I went into surgery with the understanding that once he got in there, if reattachment down the road wasn't a viable option he would give me the permanent colostomy. If the sphincter looked good he would give me a temporary ileostomy. The first thing I did when I woke up in recovery was to check which side the bag was on. It was on the right (temporary ileostomy). I was so happy.
Having said that...the reattachment had many complications and there was period where I seriously considered going back for a colostomy.
THings settled down, but life isn't perfect. I'm more prone to diarrhea even when I'm not on chemo. I sometimes lose control, so have to wear a pad at all times, sometimes a diaper (esp when I'm on chemo). I go more frequently (3-10 times per day), though not as often as I used to. It's all somewhat manageable, though I do feel tied to the bathroom more than I would like (a lot of that has to do with the chemo though)
The ileostomy was fairly easy to handle and a colostomy is supposed to be even more so. You have more control with a colostomy.
As I said, I hope maureen and some of the other folks respond soon.
Good luck with the decision.
Mary

i have talked to maureen and will do so again.
thanks,
cherri

jerseysue · June 2006

I have a colostomy and I hated it at first but I've grown to live with it. It isn't that bad it's just a pain in the butt (not trying to be funny) sometimes. Mine is temporary and I could start talking to the onc about a reversal soon (as long as my scan comes back clear). I'll say a prayer so that you can make the best decision for you.

KathiM · June 2006

Cherri...
I'm a low-colon cancer survivor myself. The docs could feel it on a rectal exam. First rectal fold. I was told 50% chance of colostomy. I got on the internet and the phone. Found a surgeon who specializes in low bowel resections. I woke up from my 7 hour procedure with no bag. No rectum or sigmoid colon, either, but that's another topic. I am now 1 year post-op and (here comes the suzi sunshine portion...sorry) I have as much control as I had pre-cancer (eating fruit has ALWAYS been a great cleaner, for instance, and still is). There were times when I wondered if I had chosen right...diarreha (sp?) and anal pain defied the imagination! I still think I made the right choice.
BUT, I also know many people that have perm. colostomies that have a normal, full life.
I HATE that this beast puts us in these situations...there is no clear cut (as I know you are aware) answer here...
Hugs to you, I wish I could give you the world.
Kathi

scouty · June 2006

cherri,

This is a hard post for me to reply to. I had a tempy colostomy bag for 2 plus years and had it reversed January of this year. I have to tell you I am still adjusting to the "reworked" plumbing. I don't know where you go for treatment but I was fortunate to have 3 comprehensive cancer clinics in my state (NC). I met with a surgeon that would have done my surgery way back when if it had not spread to my liver.....long story and not relevant to your issue. The first surgeon I met with was an expert in "sphincter management".....I'm serious!!!!!!! His job was to save the muscle if it was at all possible.

Bottom line, trust your gut and surgeons. If you can't then get a second opinion.

I wish you the best and please keep us posted!!!!!!!!!

Lisa P.

musiclover · June 2006

Hi,
I did not like what my friend's first surgeon had to say - that because of the location of the tumor, surgery for Mark would definitly mean a permanent colostomy bag, would most likely damage nerves, leave him impotent and probably cause major problems with urinating (possibly a second bag). This was at a County hospital and I had a hunch there was a better way.

With some focused research I discovered the TME (total mesorectal excision) surgery performed by Dr. Enker. I convinced my friend to go and even paid for the trip - I was that convinced that he should see this particular doctor for a second opinion. His news was better - he'd would be able to do the surgery without any nerve damage or the other horrible things. He would, however, still need an colostomy. Since Dr. Enker is in NY and Mark lives in Calif, he thought it would be too inconvenient to relocate for treatment. He suggested Mark see Dr. Beart at Norris Hospital in L.A.

I went with him to the appointment and had a great feeling about Dr. Beart. He said he would probably be able to do the surgery without a permanent colostomy (!). He would see after the five weeks of radiation/chemo treatments. That did shrink the (large) tumor down and the surgery was a smashing success. Mark has a temporary iliostomy. This is a far cry from the first surgeon's dismal prognosis.

Mark's tumor was actually attached to the schincter muscle so this is nothing short of a miracle in my opinion. Dr. Beart is a master at this type of surgery. He even agreed to do the surgery at the County Hospital in conjunction with the main rectal surgeon there. This saved Mark several thousand dollars.

I would definitely get a second opinion from someone who performs TME before you make such a difficult decision. The surgery is designed to be much less invasive that the traditional rectal/colon surgery. Mark was ready to go along with the first surgeon's advice - he didn't know what else to do. Luckily, I was at that appointment. Something just didn't feel right so I followed my gut and got on the internet to search for other options. So glad I did.

kangatoo · June 2006

musiclover said:
Hi,
I did not like what my friend's first surgeon had to say - that because of the location of the tumor, surgery for Mark would definitly mean a permanent colostomy bag, would most likely damage nerves, leave him impotent and probably cause major problems with urinating (possibly a second bag). This was at a County hospital and I had a hunch there was a better way.

With some focused research I discovered the TME (total mesorectal excision) surgery performed by Dr. Enker. I convinced my friend to go and even paid for the trip - I was that convinced that he should see this particular doctor for a second opinion. His news was better - he'd would be able to do the surgery without any nerve damage or the other horrible things. He would, however, still need an colostomy. Since Dr. Enker is in NY and Mark lives in Calif, he thought it would be too inconvenient to relocate for treatment. He suggested Mark see Dr. Beart at Norris Hospital in L.A.

I went with him to the appointment and had a great feeling about Dr. Beart. He said he would probably be able to do the surgery without a permanent colostomy (!). He would see after the five weeks of radiation/chemo treatments. That did shrink the (large) tumor down and the surgery was a smashing success. Mark has a temporary iliostomy. This is a far cry from the first surgeon's dismal prognosis.

Mark's tumor was actually attached to the schincter muscle so this is nothing short of a miracle in my opinion. Dr. Beart is a master at this type of surgery. He even agreed to do the surgery at the County Hospital in conjunction with the main rectal surgeon there. This saved Mark several thousand dollars.

I would definitely get a second opinion from someone who performs TME before you make such a difficult decision. The surgery is designed to be much less invasive that the traditional rectal/colon surgery. Mark was ready to go along with the first surgeon's advice - he didn't know what else to do. Luckily, I was at that appointment. Something just didn't feel right so I followed my gut and got on the internet to search for other options. So glad I did.

Hi Cherri.....I agree that you opt for the surgery that gives the least chance for re-occurance and wish you the best in your decision.
BTW.....I met jerseysue in Austin. No way would I ever have suspected she has a colostomy...so bubbly and full of life...good on yah Sue!
Ross n Jen

markatger · June 2006

Cherriann

I just wanted to add what many have said too. As you probably know, it important to have a surgeon who is an experienced colo-rectal surgeon. Make sure he has lots of experience in rectal surgery. Some are experts in sphincter-saving surgery. I have been told that between your pelvic bones it is very difficult to get in there and the surgery requires expertise. Not something a general surgeon has.

Maria

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