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Oct 19, 2018 - 8:44 am
Hi Folks, Hope all is well with everyone here and that fighting the good fight continues.
I had a CT scan which showed that the middle of my sigmoid colon has gotten very narrow and this more than the cancerous tumor is what's causing the constipation and making it so difficult when I actually do try and get something to pass through.
I see the surgeon this Tuesday he's got great credentials and practices out of Yale where he heads their colorectal surgery group. It's far from where we live and I worry about being so far from home (an hour there and an hour back) but the surgeons reputation and credentials outweigh my anxiety.
I do have an appointment with another surgeon on Thursday who also has a good reputation, excellent scores on Healthgate and Vitals.com and he practices out of a hospital 10 minutes from were we live which would make it awfully easier on my husband and family - but my gut instinct is to go with the guy at Yale because then I can tell people I went there (j/k) anyway if anyone wants to weigh in about this, I'm all ears.
A few questions:
* Am I right in assuming that the entire sigmoid colon will be removed?
* Is it more than likely that I'll have a stoma and some sort of appliance like a colostomy or ostomy bag?
* I know pain is relative but what level of pain should I be ready for, please let me know of your own experience if you care to share it.
Thanks in advance for any feedback
Peter |
Joined: Dec 2017
I think we are all different.
I didn't get a bag
Joined: Oct 2018
That's great news
Abita - that's good to hear and thanks for the reply, Peter
Joined: Dec 2017
Important to do what they say
Important to do what they say.
Joined: Jan 2013
Questions I can't answer, but...
I had to travel 360 miles round trip for my surgeries, and treatments. When I did radiation, five days a week for six weeks, I was lucky to have a friend offer her home.
It was hard travelling during the winter months, but thanks to my husband, we made it work. While it is a consideration, travel should be the least of your worries.
Good luck in your decision.
Tru
Joined: Oct 2018
Thanks Tru
My post was poorley written, travel isn't the deciding factor - I'm glad you didn't let distance determine your treatment and went where you needed to go for your treatments. I'll be going to the Surgeon at Yale New Haven and will keep everyone here postd with my progress, best always, Peter
Joined: Apr 2017
Intuition
My only advice would be to go with the surgeon you feel best about. He or she will be able to answer the questions about how much will be removed. As to the pain after surgery, it was not at all bad for me. I was up and walking the day of surgery and I recovered fairly quickly. The one thing I was not ready for was needing some help sitting up in bed when I got home--those muscles you have depended on for so long will be compromised. One step at a time, and you will be able to handle it all.
Joined: Oct 2018
Sandiabuddy Thank You
Great advice and I appreciate it very much. Trying to process so much info so quickly has been difficult but at heart I'm optomistic and just have to exhale every once in a while. I look foreward to meeting the surgeon on Tuesday and I'm armed with a big notebook of questions - if you've ever seen the movie "What about bob?" with Bill Murry then you'll know what I mean when I tell you it's baby steps for me all the way.
Thanks again,
Peter
Joined: Sep 2014
See both surgeons and choose
See both surgeons and choose who you feel more comfortable with. My surgeon got good reviews for his work but not for his personality. People called him arrogant. I saw it as confident. My first oncologist gets great reviews because she's so 'nice'. I found her to be wimpy and not confidence inspiring at all. The one I changed to doesn't get the greatetst reviews but I think she's great. She thinks outside the box, she had the forsight to have my tumour checked for it's vulnerability to the chemo that I go on.
For me the situation was that I had to have an illeostomy right away due to the size of the tumour and the possibility of it completely blocking me off. Then I had the surgery to remove the tumour several months later. I have the option of having the ostomy reversed but I never will. I had IBS and the ostomy has given me so much better quality of life that I don't want to not have it. I loathed it at first and couldn't wait to get rid of it. It made me feel like a freak. Now it's just part of life.
I hope you'll find a surgeon that you like and the surgery won't be too bad. If you end up with an ostomy of some kind know that there are plenty of us with one and it's not so bad.
Jan
Joined: Oct 2018
Thanks Jan - You're The Bees Knees
You're the best and make some excellent points, I'll be seeing both surgeons and I'll choose where I feel most confident and secure. I admire how in control and level headed you are and how you're not letting cancer push you around it's inspirational. If I have to have a colostomy/ostomy that'll become my new normal, I'm thankful I have a life partner whose there for me every step of the way so this is just one more hurdle we have to tackle and we will. I'm loving this forum and want to give back as much as I can.
BTW, you were 100% spot on, I won't know what stage my cancer is until the surgery and they test those lymph nodes so thanks for clearing that up. Now if only the hospital would let me bring our dogs, I can't imagine a week or longer without them - thanks again Jan, Peter
Joined: Sep 2014
Aw Peter, you're so sweet.
Aw Peter, you're so sweet. Thank you for the kind words. I just hate being the person with cancer. I hate the idea of anyone pitying me and I hate that I'm no longer able to work or do many things because of it. It's changed my life so much and not in good ways. I have no choice in that but I do have a choice in how I respond to it. I'm here and will likely be here for years longer. I'm grateful for that. I've only ridden my horse once this summer due to the issue I had before the surgery last month. I'm sad but my daughter is giving lessons on him and she rides him to keep him in shape. I've had him for almost twenty years, there's no way I'd give him up, ever. I'd like to walk my dogs more but I can't. Today I'm having a miserable day but three days ago I was able to wash the bedsheets and blankets and make the bed myself. Two days ago I painted the new steps my husband built on our deck. On the good days I'll enjoy myself and do whatever I'm capable of. On the bad days I lie in bed and try to rest for the afternoon. It's not the life I'd choose but it is what it is.
Tomorrow I'm hoping to get the dying plants out of the garden before winter. Last year I was in the hospital with sepsis in September. My colon had gotten irritated and had made small perforations that leaked out into my bloodstream. They identified 4 diferent colon bacterias in my blood. My point is that we got an early winter and the dead plants stuck up through the snow all winter. It drove me nuts thinking about it.
Jan
Joined: Oct 2018
Oh Pleeeez, I'm a Cranky Old Putz
I've had a wonderful Psychiatrist for 15 years, he recently left his practice and I'll miss him terribly he's saved me many times over and in every way a person can be saved.
Joined: Mar 2010
I had a part of my sigmoid removed
And then was reconnected to function "normally". (I also had part of my right colon removed. No stoma) With the sigmoid, you may have to retrain muscles to push when you go to the toilet, as that part of the colon does much of the pushing out.
Joined: Oct 2018
Hi abrub and thanks
Thanks for sharing some of your story, I'm happy for you that you didn't need the stoma and a collection device. Maybe with a little luck it'll be the same for me but if not I'll be grateful just to be alive and be able to pass waste regardless of where it's coming out of. Peter
Joined: Dec 2017
oh my gosh, that explains a
oh my gosh, that explains a lot.
Joined: Mar 2010
No one explained that to me
But when I did some research, I learned that the function of sigmoid was to move things out. I couldn't understand why I couldn't bear down.
Joined: Feb 2008
Interesting
This is interesting to hear. My cancer was in the sigmoid colon. I was fortunate to have Stage 1 and not do chemo or have a stoma. However, ever since the surgery, I have had chronic constipation issues. I will be 11 years cancer free in Nov.
Joined: Oct 2018
Toot Toot Tootsie...Thankyou
Thnak God you dodged the bullet of chemo and radiation. Constipation is terrible and I'm sure you've tried lot's of treatments both prescribed and OTC. I found putting a capfull of MiraLax in hot black coffee helps, I often do this three times a day if you haven't tried this maybe ask your Dr, wishing you well - Peter
Joined: Feb 2015
Some Thoughts
A few questions:
Joined: Oct 2018
NewHere, thanks so much for your terrific post
First thank you for this reply, I appreciate the time and effort that went into writing this and I'm pretty overwhelmed at this level of concern and kindness it helps, it really does.
Joined: Feb 2015
Sounds Like The Perfect Choice
As far as the Surgeon goes, I meet him officially this Tuesday, but I can tell you now and with confidence that I don't want anyone other than this guy. Colorectal surgery is all he does, he teaches it at Yale and at 42 years of age he's top dog - the head of the colorectal surgery group at Yale medical. I
Would have been my choice also based on what you said. A teaching hospital is going to be on top of everything. The head of CRC at Yale is going to be a serious player in this.
On the walking, use the IV cart for support. It usually has a circle around the middle you can hold onto. The first time is going to be the hardest, from getting up to taking real small steps. Take your time, don't force it. Then it becomes easy. The first time I did it, took a bit more to get going and I made "one lap" around the floor. Within 24 hours of my surgery I was encouraging and walking with other pateints as they started getting up and walking. And I was doing multiple laps.
The one other thing I usually tell people is that befoe I had cancer, the thought of cancer, surgery, chemotherapy and the rest is the monster under the bed or in the closet as one of the ultimate fears. That it would be devestating. And the fear and anticipation was a ton more worse than the actuality. People have an incredible amount of strength that they just don't realize. The people here on the board are perfect examples of how strong all of us are.
Thoughts are with you for a speedy recovery.
Joined: Oct 2018
Beer through your chemo port eh?
All I can say to that is, when they hook me up I'm buying. As harrowing as your story is your sense of humor in the face of this monster in the closet we call cancer is pretty admirable and you're a great writer, I get to say that because I was a copy writer for thirty years and I can spot a naturally good writer at 50 paces. I told another member here who is working on a book that there are only two rules with writing 1) write what you know 2) write like you speak. I'm not saying that I'm a good writer, I'm not ( I'm a terrible writer and a phonetic speller) but I do love to write and I know a good one when I see one. I'm sorry that you've had to suffer so much, I'm having a colon resection too and my fear is great and all consuming.
Not because of the surgery itself but I feel like I have Pandora's Box syndrome and surgery will lead to all sorts of other complications, the pain of my existing neuropathy is already enough to kill a cat, and Gout in one foot, well toe actually is what I thought was the cherry on top - now with chemo on the menu the thought of even more nerve damage has me grinding my teeth to the point where sparks are flying out of my mouth - I better check our insurance policy and make sure we're covered for fire, hold on please.
OK, we're covered. Well person with the puffer fish, that is a puffer right? I used to keep and raise all kinds of fish but my heart belongs to fancy goldfish, they're very beautiful but you have to be a nuclear physicist to keep them alive. I've had fresh, brackish, salt water but these guys are near impossible to keep and quite the challenge. It was worth it and maybe one day I'll set up a tank again...I digress as usual, thanks for the help, the support and sharing your story. I hope I can summon even half of your strength and determination.
Peter
Joined: May 2018
Re
my cancer was in a sigmoid colon. get it laparoscopically if you can. No bag. Released after 2 days in a hospital. Went to work shortly. You can walk on a day of a surgery.
Joined: Oct 2018
Thanks for the help
I'm hoping for the laparoscopic surgery but I have scar tissue from previous surgery so if the surgeon can still work with that great - if not it'll be open, which of course I hope is not the case. You made out like a bandit and Ia'm glad you did, no ostomy and outta there in two days, that's incredible. Stay strong and cancer free
Peter
Joined: Mar 2010
My dr didn't want to consider laparascopic surgery
He wanted a wide-open window to view everything and check everything out. With scar tissue, this may be more important. However, it sounds like the dr you'll be working with has the expertise to determine the best method in your case. We're all different.
Alice
Joined: Dec 2017
My surgeon looked at all my
My surgeon looked at all my organs. He was also already aware that I had liver lesions, so guess it made sense.
Joined: Feb 2009
Opinions
If you have appointments with two different surgeons, I'd listen to what they can tell you. My first surgeon told me I'd definitely have an ostomy and after seeing my second surgeon he gave me hope of 50/50 and ended up having a temporary ostomy with reversal. It's good to get a second opinion, especially when it comes to something permanent. Wishing you the best - it's a scary place to be in right now and can truly relate. Thanks for keeping us so informed about your journey right now. It's a whirlwind of appointments, tests, surgeries, etc and you seem to be up on getting all the ground work down great.
Kim
Joined: Jul 2017
Mine was an emergency resection....
...so I did not have full liberty of having to choose which surgeon nor was I able to research what to expect. All I knew was when I was admitted to the ER because of abdominal pain, in the next 48 hours I would be resected. I haven't heard of the bag before, heck I don't know any single thing about cancer except that it can kill you. (No one in the family had it). It is important to choose a surgeon you're comfortable with, and of course, competent in his field. Trust your instincts (and word-of-mouth about the surgeon's expertise).
As to your questions:
I was put on temporary illeostomy but I haven't had it reversed and probably won't. I'm more comfortable with the bag (although it could get expensive) than what I encountered pre-bag. Having the bag is much easier to me than before (it was hell--I can't control my bowel movement, had to go every 15 minutes). As to pain, I can't remember exactly because my abdominal pain before resection was so painful I think after the operation I was ready to face any sort of pain. But aside from the needles, I think removal of the drain tube or something gave me some painful sensations but they were all tolerable.
I'm sensing you're going to do just fine during and after the surgery. You're mentally and physically prepared for the surgery, you'll do fine. Best wishes.
Joined: Oct 2018
Many Thanks This Info Really Helped
I seem to have gotten your post and Steve's post confused a bit in my reply, I apologize, my brains foggy and I'm on sensory overload I think. But I really do appreciate you're taking the time to help me out.
Joined: Apr 2017
Joined: Oct 2018
Thank You Steve For This Incredibly Helpful Reply
Thank you for the reply, after reading it I feel more confident and have a better idea of what to expect from my surgery. Your experience of emergency surgery must have been very frightening but it certainly sounds like you were in extremely capable hands.