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My Sigmoid Colon and Choosing The Right Surgeon

Peter_S's picture
Peter_S
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Joined: Oct 2018

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   
abita's picture
abita
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I didn't get a bag

Peter_S's picture
Peter_S
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Joined: Oct 2018

Abita - that's good to hear and thanks for the reply, Peter

abita's picture
abita
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Important to do what they say.

Trubrit's picture
Trubrit
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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

Peter_S's picture
Peter_S
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Joined: Oct 2018

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

SandiaBuddy's picture
SandiaBuddy
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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.

Peter_S's picture
Peter_S
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Joined: Oct 2018

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

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

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

Peter_S's picture
Peter_S
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Joined: Oct 2018

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 

JanJan63's picture
JanJan63
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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

Peter_S's picture
Peter_S
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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. 

Once he told me that on some days, if I can do just one thing like make the bed or pull a few weeds, vacuum a carpet - this small effort is a huge triumph. It really made sense to me and it's helped me to accept that there are things I can't do anymore I can't control that and like you said I control how I deal with the feelings that come along with these types of realizations - which hopefully lead to acceptance  
 
Jan, you're doing the best you can with what you didn't choose and I'm trying to do the exact same thing so this means we're not alone. It's a wonderful thing to be with people who "get it" because most don't have a clue. I know how in love you are with that beautiful horse and you know that I know.
 
So that means you have to know you can love him just the same but different from before. From watching your daughter ride him, holding that wonderful face, smooching him, giving him boundless treats - you know this drill because it's the same with your dogs, I mean it's different but it's really the same because like the dogs he's still right here, smack in the middle of your life.
 
Maybe it is a little sad or even terrible some days, but those good days or even a glimpse of something spectacular is life itself, I believe this. Remember what Shelby says in Steel Magnolias "I would rather have a day of wonderful than a lifetime of nothing special" It was something to that effect.
 
Great now I have to go watch Steel Magnolias for the tenth Billionth time.
abrub's picture
abrub
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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.

Peter_S's picture
Peter_S
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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

abita's picture
abita
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oh my gosh, that explains a lot. 

abrub's picture
abrub
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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.

tootsie1's picture
tootsie1
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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.

Peter_S's picture
Peter_S
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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 

NewHere's picture
NewHere
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I am sorry you are here going through all this, and it looks like others have given you good advice.  My surgery was different than yours (location), but figured some thoughts.  Definately go with the doctor you feel comfortable.  Make sure you get all of your answers ahead of time and you feel that they listened and responded to all your concerns.  The first surgeon I met had some hesitation on certain things and I realized he was unsure of what he was doing.  
 
Of course there are great doctors everywhere.  But Yale is a teaching hospital (I think), so you are probably getting state of the art.  It is on Top Cancer Center lists.  
 
 
 

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?
 
On the top two questions, ask the doctor what they think.  My approach for all of this was prepare for the worst and hope for the best.  Meaning I found myself better off being in the mental headset of thinking the less acceptable outcome (to me) was the probable, be geared for that as much as possible and adjust accordingly on good news.  (My worst times during the last four years were when I thought I was finally about to get a good scan, etc. and being disappointed.)
 
 
 
* 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.
 
It was relatively painless.  Waking up always kind of stinks for me.  I hate the feeling. In terms of pain, I had a morphine pump and hit the button more as a matter of being told to get ahead of the pain.  I had a couple of spasms which was the worst.  Ativan cleared it up quickly.  I was up and walking with my IV holder the day after the surgery.  The faster you are up and walking, the quicker you get released.   Overall there was discomfort and coughing kind of stunk, so pillows to the stomach helped.  The one thing I do know, the pain was quickly in the rear view mirror for me.  I was sore and maybe not a happy camper, but I was discharged after four days and did not take any pain killer they gave me when I was at home.  
 
As I told people, I had a buddy who had a hernia surgery about 25 years.  He was a misrable wreck for quite awhile.  I had a ton more taken out 25 years later for a more serious issue.  I recall his pain and misery to this day and would never have a hernia surgery if I could avoid it.  Some colon being popped out, no biggie Cool
 
Try to relax and take care of yourself as much as possible.  You got this.
 
Peter_S's picture
Peter_S
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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.

 
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've read nothing but glowing reviews from many patients and it appears that his expertise is only rivaled by his genuine concern for his patients and warm bedside manner - i sure hope I'm right.
 
But as you said, hope for the best and prepare for the worst. You're right about the walking I was reading on the website that they want you up and walking the day of the surgery this prevents blood clots and speeds up recover so I'll be a good soldier and do what I have to do. I hope it's as (I don't want to say easy) so I'll say "not the worst thing" for me too.
 
So thanks for the great advice and the link, I read through it and it was interesting to read about Yale and a few others, it looks like when it comes to cancer Sloan Kettering is number one in the rankings, but there's no shortage of stellar doctors and hospitals doing superb cutting edge, life saving work.
 
Thank God for the internet, I never would have found the resources I did - including the potential surgeons - as well as this forum.
 
Best wishes to you 
 
Peter 
NewHere's picture
NewHere
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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.  

 

 

Peter_S's picture
Peter_S
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Joined: Oct 2018

 

 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

Butt's picture
Butt
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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.

Peter_S's picture
Peter_S
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Joined: Oct 2018

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   

abrub's picture
abrub
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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

abita's picture
abita
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My surgeon looked at all my organs. He was also already aware that I had liver lesions, so guess it made sense.

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Annabelle41415
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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

plsletitrain
Posts: 253
Joined: Jul 2017

...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.

Peter_S's picture
Peter_S
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Joined: Oct 2018

 


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.
 
I tell you, I'm keeping my fingers crossed for laparascopy but I have scar tissue from past surgery in that exact area, I hope the surgeon can work with it or around it otherwise it'll be open. Either way I'll accept it and get through it and I can always stop by here and whine.
 
The bag is working for you and that's what counts, if I have to have one I know I'll figure it all out. I've watched a few videos on how to attach and remove them so I've seen the stoma, the different types of bags, skin protectors and so on. You mentioned the expense and you ain't kidding I hadn't thought of that until I read your post so I checked pricing and can see how crushing the cost can be - especially over time.
 
With what I already shell out for diabetic supplies, that's a whole different ball game, but I  can tell my bank account is going to need a little colon surgery, well, one step at a time - thank you for the support and please stay healthy and cancer free.
 
Peter   
steveja
Posts: 41
Joined: Apr 2017

 
>>* Am I right in assuming that the entire sigmoid colon will be removed?
 Pretty much.  About a foot of colon is typically removed. They 'drop' the splenic flexture (the upper left corner of colon)  so the left-colon is then much straighter.  They alway try to take at least 12 lymph nodes and remove the entire tissue as one unit - as this helps the pathologist and reduces the chance of any spread.   
 
>>* Is it more than likely that I'll have a stoma and some sort of appliance like a colostomy or ostomy bag?
 
 An excellent question for your surgeon, but probably not.   Unless there are complicating issues, or they get close to the rectum, they usully do an anastamosis (connect the pipes) during surgery.  If they did need to do an ostomy it's extremely probable they'll 'reverse' it after a couple months, but from what you say an ostomy is unlikely.
 
>>* 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.
 
Modest.   I had laparascopy surgery taking my sigmoid & the upper edge of rectum - so I have a ~5 inch horizontal scar a couple inches below my navel,  and two small 'port' holes for instruments on either side. Felt like a wet dishrag the day of surgery - zero energy.  I had a button with some opiod dose available, but only used it twice.  Just tylenol after that.   Was walking around the floor (they recommend getting up & walking) the next day every few hours - sort of a stiff/crampy feeling but nothing harshly painful. They released me after 2 days, tho' 3 is more common.   So honestly, the two most painful things were the catheter, and the heparin shots.  After any abdominal surgery they give you heparin (a blood thinner) shots several times a day - and it burns during the injection and make your arm sore.    When sitting or standing still - the abdomen muscles just felt a bit 'tight', or stressed/sore like the day after too much exercise.   When getting up or otherwise flexing stomach muscles there was a some pain, but nothing serious.
 
At home I found it more comfortable to sleep in a recliner with few extra pillows for a few nights. It's very convenient to gather your stuff (tv, controller, laptop , phone, book, magazines, pills, something to drink) on a tray/side table, near a comfortable arm-chair and camp out there during the day.   You want the chair-arms so you can use stand using your arm muscles.   Just plan to take it very easy the week after you get home.   
 
My opinion is that you should select the facility and doctor that do this procedure ferequently and is a member of one of the professional societies - like
https://www.fascrs.org/find-a-surgeon
 
Ask if it's laparascopic surgery vs open (vs robotic).
Ask about the anastamosis vs ostomy (if ostomy, then permanent vs temporary?).
Ask how often he/she does this procedure recently (a hemi-colectomy).
Ask about the expected time of hospitalization & home recovery.
How long after surgery till you get the pathology report.
Ask about followup schedule after surgery.
 
- best wishes
 
Peter_S's picture
Peter_S
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Joined: Oct 2018

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.

 
I'm pretty sure I will be too. This particular surgeon's specialty is colorectal surgery, I've read many reviews from patients about him and they're glowing. Ironically one of the nurses who works for my Gastroenterologist, worked for him a few years ago and we had a long chat on the phone and her report on his expertise and that of his surgical team and patient care is beyond reproach. Unless something rears it's head out of the blue, I'm sold and he's the guy.
 
I'm hoping for laparascopic surgery over open - I'm worried because I had surgery on my lower right side when I was very young around 18 if there's too much scar tissue my guess is it'll be open surgery but I'll jump off that bridge when I get to it.
 
The arm chair solution sounds great, we have two big cozy club chairs with very wide arms and with an ottoman one should make for a cozy bed, so thank you for the tip.
 
And the dreaded catheter, wow, I can't believe you mentioned this because it's a great phobia and fear of mine - with good reason.  With relation to both MS and diabetes I have a crazy amount of urinary tract issues. To pee I have to sit and kind of push down on my bladder it's like squeezing a lemon but I've been doing this for 30 years, the stream is very weak and for me a catheter is excruciating, I can't fathom the thought of another one.
 
There's a book by a writer named Stuart Chapin the title alone should give you an idea of his style and sensibilities it's called "The Fecal Manpurse - a Survivor's Guide To Colon Cancer" Like you his surgery was emergency surgery and his story is brutal, horrific, incredibly funny at times and touching but it's not an easy read.
 
I mention the book because there's a part were he can't urinate without the catheter so they have to continue putting one in then taking it out. After all the hell he's been through it's the one experience that brought him to tears. Because it's a bedside procedure he couldn't get sedation despite his pleading.
 
I've been keeping a note book on every single detail and question that pops into my foggy brain - you offered up so good ones, thank you.
 
And thank you for the best wishes, in turn I wish you the same, good health always and my very best to you.
 
 
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