Meeting w/Surgeon Next Week - Permanent Colostomy

[NWgirl]

I thought I'd run this as a separate post rather than combining w/my good news on PET/CT post. When I met with my oncologist today I told him I'm ready for a permanent colostomy. My take down surgery was 2 1/2 years ago and at best my bathroom issues are "okay". At worst, I am in terrible pain and can have as many as 25 bowel movements a day. I've given up dairy, I use Citrucel and Lomotil. All these things help, but they just aren't consistently fixing my problems. My entire daily routine revolves around my bowel movements and to a great extent I am a prisoner in my own home. When I'm not on chemo, this is somewhat managable; though annoying. Chemo makes everything worse - especially the pain, which doesn't respond to pain meds at all. It feels like I'm using steel wool for TP. Lets face it, if this take down was going to work - I would have figured it out by now.

Its taken me a very long time to come to this difficult decision. In a nutshell, I want a better quality of life - for whatever amount of time I have left. I'm not looking to run a marathon, but to be able to walk my kids to the bus stop would be nice. To be able to accept a social invitation without my standard disclaimer of "if I'm having a good day I'll be there" would be nice. To be able to make dinner for my family without having to turn off burners on the stove (multiple times) while I have to make a dash for the bathroom would be nice. I could go on and on, but you get the picture.

At the 2012 Colondar shoot I met two amazing young women - in their 20's; who have permanent colostomy's. They are my role models. I look at them and think if they can do it - so can I. The surgery will be a big one - and I'm really dreading that. But I know that if I can handle some short term pain in exchange for a better quality of life in the long run, this is what I need to do. It's not what I want, but sometimes life isn't fair and despite our best efforts, things just don't work out the way we'd hoped for. I have the complete and total support of my friends and my husband, which really helps. So I'm going to do it.

I have to be off Avastin for 6 weeks before I can have the surgery so I'm aiming for the first week of August. I'd considered briefly about postponing the surgery until November - after garden and canning season, but I just don't want to wait that long. So I'll recruit some friends to help with the garden tasks; freeze the produce and process/can it at a later date - and whatever doesn't get done just won't get done. My oncologist said if I want to do this, now is a perfect time.

I don't regret my decision to have the take down surgery. I'll never wonder "what if?". And I know for many, many people the take down surgery is a great success. Unfortunately, I wasn't one of those people. But I'm not willing to settle with what I've got now. I know my life can be better - so I'm setting the wheels in motion to make that happen.

[jmarie]

I am sorry that it has come to this but completely understand. I never had a resection but have similar issues with frequency and pain. I thought I was the only one that had a hard time cooking . My hubby teases that I only have "issues" when I don't want to cook. I don't know how many dishes I burned or boiled over because I ran to the bathroom before thinking to turn the burner off.

I pray that the permanent colostomy will give you back your quality of life. Many hugs, thoughts and prayers

[thelongglass]

I was so glad to hear your good news on the scans! Good luck on the surgery, it is clear that you have weighed your options carefully and that this will make a huge difference in your quality of life.

[BrownBagger]

Well, good for you Belle--both on the scans and on your courageous decision on the colostomy. Tough call, I know, but quality of life has got to trump everything else, IMO, so I agree with your logic and would probably do the same in a similar situation. You've got some great role models on this board--Gaelen and Bill come to mind--so I'm sure you'll get plenty of support and advice.

[hannahw]

I won't say my Dad loves his colostomy because, really, no one would choose to have one all things being equal. But we do joke about how he's never the person slowing down a long car trip with the need for a bathroom break. He has the energy and desire to lead an active life and the colostomy facilitates that in a way that wouldn't be possible otherwise. When he realized he could swim with it, it was even better.

It sounds like you're making the right choice for you. I hope the surgery/recovery is uneventful. Once you get used the routine of an ostomy, it'll be pretty uneventful too.

[Gaelen]

Quality of life is, for me, always the defining factor. For me, it was never a question of "what if?" or "what would happen?" because in my pre-surgical appointment, my CRC surgeon laid out very matter-of-factly that if I was going to go through the risk of a liver resection at the same time as the removal of my primary tumor, it would be way too short-sighted to not undergo the surgery that would give me the greatest chance of controlling recurrence of the rectal tumor - an APR with permanent colostomy.

Or in other words, he told me if I wasn't prepared for him to do a permanent colostomy to ensure the highest possible chance of survival without recurrence, then he couldn't recommend doing the liver resection. When he put it like that, choosing a colostomy was pretty much a no-brainer.

I won't kid you - there will be adjustments, Belle. But once you are comfortable and confident with your appliance system, you won't be house-bound by bathroom issues. You won't be planning your days or your social calendar around restroom facilities. You won't have to qualify an invitation with "if it's a good day," - at least not for bathroom issues. Whatever else life holds for you, bathroom issues won't get in the way...or at least won't dictate your responses.

I'm a dog trainer. Being patient goes with that territory. But I have to agree that 2 1/2 years of hope-y change-y "maybe this will work" troubleshooting trying to resolve persistent bathroom issues is asking for an awful lot of patience.

Good thoughts, Belle.

[CRguy]

...But I'm not willing to settle with what I've got now. I know my life can be better - so I'm setting the wheels in motion to make that happen.

"Make it SO Number One"...onward into your new future.

Good for you Belle..NO retreatin'...only reloadin'...You ARE an inspiration for the rest of us.
Sending many Many MANY HI..I-Fives.
( see my other reply in your PET/CT post... Bullmastiff rules and "...If I don't like it ...IT IS GONE ! ")
Belle = 1, Problems = 0.

Are you secretly a Bullmastiff or a Honey Badger...????? you just kinda take the probs and "nuke 'em."

Harmony and best wishes, always !
Cheers
CRguy

[Mastan]

There are plenty of rectal cancer survivors that live active lives with ostomies. As a point of reference I had APR surgery on Nov.1, 2010. I finished Chemo in Feb 2011 and since that time I began training on a road bike in April 2011. On Memorial day weekend I rode on a 50 mi tour and completed it in under 4hrs. Last week I rode on a 30 mi ride on Sunday and ran a 5 k run on Wednesday. I will also mention that I irrigate my colon everyday so that I am free from having to wear and empty a colostomy bag. There is an Irrigation Discussion in the UOAA discussion groups. I recommend that you read the ostomy discussions on the UOAA, as they have been very helpful to me. This Discussion group is very helpful with regard to colorectal cancer and the UOAA discussion group is equally helpful for ostomates. As a parting comment, if you have generally good health there is no reason to expect any serious problems with ostomy surgery.

Good Luck,

Mark

[michelle c]

Belle, you've certainly given it a good go after your reversal. You have to make a decision on what's best for you and it sounds like a permanent colostomy is the way to go. Good for you, it must be a bit of a relief now you've made the decision which sounds like it is the best one for you. All the best Belle, you are an insipiration. xox

[Surroundedbylove]

Hi Belle,

I know we've already talked about this but since you had the ileostomy for a year and were comfortable with that I think you'll end up very happy with the colostomy. I understand that they really are easier to manage than the ileostomy - and like you siad - a much better quality of life than you have right now. Here's a toast to quality!

Best of luck and good wishes to you my friend.

SBL

[vancouver eve]

Belle, good luck with your decision. If you receive abetter quality of life it is worth it.

[beth568]

I admire your well-reasoned decision. Sounds like you know what you need, and the permanent colostomy is the best solution. Two plus years seems more than a fair trial. I wish you luck with it!

[Staci's team]

Belle, it sounds like you've approached the situation logically and have appropriately weighed the "risk vs. reward" question -- quality of life is an extremely important consideration. Given what you've described as your current "normal," I'm praying the permanent colostomy will give you back some of that freedom to just do what you want that you need and deserve. Please know that if there's anything we can help talk you through, there are plenty of people willing to help you.

As someone wise once told me, "when the doctor told me it was the bag or my life, I took that to mean that I'd have a life by having the bag." It's worked out pretty well so far, with occasional constipation being about the biggest issue. Hopefully you'll find some of that relief as well.


Chris

[NWgirl]

Thanks Chris. I think of Staci and how active and happy she seems to be - she is one of my role models. She is just awesome and so are you for being there for her and your kids. What a wonderful family you have.

[Bill5107]

Congrats on making a tough decision.

If I had any advice for you right now it would be to talk with your Dr and make sure you see a WOCN (Wound Ostomy Continence Nurse) well before surgery so issues can be raised and resolved.

I think it was crucial for me is that I made my WOC nurse come back out to mark a better location before my surgery. She first picked a spot that would be under my belt line and that my hiking pack harness would have covered. In some ways this first site was the "right" on in the way my belly "rolled" so to speak, but it was wrong for my lifestyle.

My surgeon told me there would not be enough margin to do anything but have a permanent colostomy, so I didn't have to ever wonder about it. Maybe that made it easier for me, I don't know.

I'll second what others have said, if you are tied to the bathroom now, that will all but go away. Yes, you will have to adjust and learn how to manage it, but I am very active, eat very well (too well!) and don't give a hoot where bathrooms are anymore. I can run, bike and will be swimming next week with my Boy Scout troop

I'm sure if I'm off on any of this someone else will pipe in. I know that I've been very happy with my ostomy, though it did take a while before I stopped treating it like it was made of soap bubbles that might break if you didn't treat it exactly right! I'm much more laid back and realistic about the whole thing now.

And of course I have to say you should check out http://ostomy.org/. Lots of support there.