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Need advice about surgery, and reconnection

NYVET's picture
NYVET
Posts: 9
Joined: Apr 2021

Hello All

 I’m seeking insight and advise about having a colon resection, reversal, the ostomy bag and the side effects. Most particularly the side effects of having the surgical reversal (reconnecting your colon). I apologize if this is post contains a little too TMI….

 I was diagnosed this past August with stage 3B Colo-rectal cancer at age 52. My tumor is low, in the rectum. I’m being treated at MSKCC and have a good tumor team treating me. I’m very happy with them. In general, I’m strong and pretty healthy, prior to this I’d rarely get sick.

 My tumor is not through the colon wall and I have 2 suspicious lymph nodes, so I was staged at 3B.

 I did 6 rounds of chemo including 5 rounds of oxaliplatin and capcitabine and 5 radiation treatments. My latest MRI and CT scan showed no spread and I’m scheduled for surgery at the end of the month.

 I’m looking for advice and to hear some of your experience about surgical options.

 Option 1, he removes the tumor and section of colon. I get the temporary ostomy bag. 2-3 months later he does the reversal and reconnects the colon. Simple right? 

 BUT...the side effects…

 From what I understand, the surgeon is removing the section of the colon that serves as a reservoir for stool and your body needs to adapt to not having that storage space.

 He cautioned that 100% of patients will have significant side effects, while they may improve over time they will never go back to “normal”.

 The side effects are frequency of bowel movements, that I’ll be going 20+ times a day. Urgency. Stool leakage. Bowel incontinence. That they will be very similar to the side effects I had from radiation. That was horrible.

 He said 10-20% have severe side effects that never get better, 10-20% of patients have severe side effects that will get a little better, but not significantly. The very best I can hope for is recovering to the point where I need to take 4-8 BM’s a day instead of 20+ Wonderful…

 I’ve been reading a bit on line and what I’ve seen seems to backup what the surgeon told me.

 He also cautioned that there is a chance of the nerves that control sexual function can become damaged and I could lose sexual function. It’s 10-15% chance the first time he operates, it goes up with each successive operation due to the scar tissue.

 I discussed my background with him, that for the last 10+ years I’ve had a “twitchy stomach” or Irritable Bowel Syndrome and used to take Imodium very frequently. I’m sexually active (as much as I can be with cancer) and my sexuality is a large part of my identity, as I said to the surgeon, I’d rather lose a leg than lose my ability to get an erection.

 I doubt I could work while suffering the side effects. Currently I’m a trial attorney (I’ve had other careers in my life). There’s no way I can function in court if I need to take 20+ BM’s a day or if there’s a chance of leakage or incontinence. Absolutely no way. Similarly, there’s no way I could go out socially, or out on a date if I suffer from leakage or incontinence. I doubt many women would be understanding of either bowel leakage or incontinence on a date. I could not be as active as I am if I’m constantly in the bathroom.

 After discussing all of that, my surgeon brought up option 2.

 Option 2, he removes the tumor and affected section and installs a permanent colostomy bag.

 I’m not thrilled with the idea of a permanent bag, but it sounds like it might be a better option. While I know I would be able to do 99% of life’s activities with it, I’m not happy with the prospect. I’m 52 and very active, skiing, boating, deep sea fishing, traveling, etc.  From what I have read I think I will be able to do most of the things that are important to me. But again, I’m not happy with the idea of a permanent colostomy bag and given my age I’ll have it a long time.

 My surgeon told me that quite a few of his patients who initially went with the resection and reversal couldn’t take the side effects and went back to have a third surgery to have a permanent colostomy bag.

 I’d appreciate any insight from any of you who had the resection, reversal, and the side effects of the reversal.

 How bad are the side effects? What were your experiences? Are you happy with the temporary ostomy? Permanent colostomy? What would you have done differently?

 At the moment I’m leaning towards option 2 but I’m not sold.

 Thank you in advance for your help and assistance.

 Stay Safe

 G

Trubrit's picture
Trubrit
Posts: 5389
Joined: Jan 2013

There is no such thing as TMI here. If it's not all out in the open, you don't learn, you don't share, and people are left in the dark. So don't be worrying on that front. 

I can answer a few questions to the best of MY knowledge and experience, which of course, differs from others here on the forum. 

I know that one of our fellow members suffers from the 20+ BMs a day.  I am down to 4 or 5, so doing really well, though often they are runners - which means, when I get the urge to go, it is a mad dash to the loo, becasue when I have to go, I have to go NOW.  That can be a pain, and does affect situations outside of the house. 

Sex. Well, I am woman, so while we function differently, and I cannot comment on the whole erection thing, I will tell you that before Cancer, my husband and I had a very active sex life. Radiation put a stop to that, as far as intercourse is concerned. While it was hard at first, of course, I got used to it quite quickly. At the end of the day, I figured I would rather be alive and happy. It is surprising what you are willing to tolerate in order to be alive. 

Thats it for me. Others here will share their advice and experiences, and hopefully, between us, we can help a little bit.  

You have a big decision. Good luck! 

I will message the moderators and see if they can come in and clean up your post  . 

Tru

NYVET's picture
NYVET
Posts: 9
Joined: Apr 2021

Trubrit

Thank you for the reply.

If you don't mind me asking, how long did it take for you to get to the 4-5 a day point? How bad was it before then? How long ago was your reversion?

Yes-if a mod could clean up that post it would be great, I tried editing it but my screen does not show all of that nonesense.

Thanks agani

G

Trubrit's picture
Trubrit
Posts: 5389
Joined: Jan 2013

the mods will fix it. 

I will be SEVEN years NED - No Evidence of Disease - on April 24th and EIGHT years out from Chemo & Radiation - Stage IV

I must admit that the whole bowel thing took a good two to three years to settle down  And I have learned along the way, the foods that trigger a bad response, ie. too many trips to the loo or too few.  

How bad was it? I would say 15 - 20 trips on a really bad day, 10 or so on a good day.  If I knew I had to go out, I would eat very little for a few days before. That would constipate me, which just caused a whole bunch of other problems. No winning, really. 

The trouble with this whole Cancer thing is, you just don't know how it will affect you. You may be one of the lucky ones, you may not. You won't know until you're in it, neck deep. 

And I didn't have a colostomy or iliostomy or anything. Just surgery, chemo and radiation, in that order.  

Tru

 

 

SnapDragon2's picture
SnapDragon2
Posts: 472
Joined: Nov 2019

There is a case of a woman on another forum "Colon Talk" who went with your option 1.  Life was miserable so went back for option 2 and swears she got her life back all the way.  So, there's that.

I have a perm ostomy and honestly it doesn't affect any aspect of my life.  I am regular like before, joke is the news is on, time to go to the bathroom, lol.

My husband and I have a very active sex life, just not in the daytime anymore :)  It's more me than him.

Going with option 1 and keep option 2 in your back pocket or just skip it and go with option 2.  That is a tough one for sure.

Is your surgeon a board certified colorectal surgeon?

NYVET's picture
NYVET
Posts: 9
Joined: Apr 2021

Thank you for the feedback.

Yes, my surgeon is board certified. He's the Vice-Chair of Education and Faculty Development-he's the guy who teaches all the other surgeons at Memorial Sloan Kettering. His bio states he has a pile of awards, committee assignments, and is on the editorial board of a number of medical publications. So I'm confident in his abilities.

https://www.mskcc.org/cancer-care/doctors/martin-weiser#about-me

One of my concerns with option 1 then option 2 if the side effects are bad is the increased chances of sexual disfunction. That would be 3 surguries with a 10-20% chance each time (and the odds getting worse with each surgery) of having problems.

Plus there is the fact that I'd have to go through over a year of the side effects before having it reversed. Since he said the side effects can improve in a year, I would have to wait a year plus to ensure they are not improving and then schedule a surgery. I'd probably be looking at a year and a half. In that year and a half I'd have liimited ability to work and be as active as I normally am.

Thanks again

G

 

carolehealey12
Posts: 1
Joined: Apr 2021

Dear NY Vet,

 

I am not in exactly the same situation as my tumor was further up in the colon but I wanted to let you know that I had surgery with Dr. Wiesier and he was superb. He removed a foot and a half of colon and lymph nodes and then reattached and I have had no problems. I was kept comfortable in the hospital via pain managment. The physical therapist got me up and moving that same night. I was in the hospital for five days. The recovery was about the abdominal muscles which were cut through. Eventually, I walked and used hand weights. Wish I colud help you make a decision about the bag but that was not my experience. but I wanted to give you the thumbs up about Dr. Weiser. 

 

Best of luck to you,

 

Carole 

NYVET's picture
NYVET
Posts: 9
Joined: Apr 2021

Carole,

Thank you for the vote of support about Dr. Weiser. I'm very impressed with him and with most of MSKCC's staff. He was recommended to me by a friend whos is a nurse there, it's nice to hear someone else had a good experience.

Good Luck

George

 

SnapDragon2's picture
SnapDragon2
Posts: 472
Joined: Nov 2019

Are you a big guy/overweight?  One complication for the surgeon would be bigger people are more of a challenge.  This is what I was told anyway.

NYVET's picture
NYVET
Posts: 9
Joined: Apr 2021

I'm decent sized. A little overweight as between covid and cancer I haven't been able to go to the gym for the last year, but I'm not obese.

 

SnapDragon2's picture
SnapDragon2
Posts: 472
Joined: Nov 2019

You ahve that in your favor.  I will say one thing that I believe helped me to get ready for surgery was pelvic floor and abdominal exercises.

NYVET's picture
NYVET
Posts: 9
Joined: Apr 2021

I didn't think of that, I'll start kegels now. I understand that after surgery sit-ups are a no-no because of the hernia risk. I'm curious if its better to do them now to build abdominal muscles while I can or if abdominal muscles just get in the way of the operation. That's another question for my surgeon.

SandiaBuddy's picture
SandiaBuddy
Posts: 1167
Joined: Apr 2017

I have a saying, "exercise helps with everything."  I trained for surgery like it was a marathon, and I think I am the better for it.  The healthier you are going into surgery, in my opinion, the better you come out.  Best of luck with your decisions.  And be sure to ask the surgeon about the catheter, and if you should take a course of prostate meds before surgery.  A catheter sure could get in the way of your dating experiences.

SnapDragon2's picture
SnapDragon2
Posts: 472
Joined: Nov 2019

It's for presurgery.  It helps with getting around/up and down.

SusyQ67's picture
SusyQ67
Posts: 9
Joined: Dec 2020

NYVet, I am in the exact same position you are in. Even the diagnosis is the same 3b, tumor not completely through, 2 suspicious lymph nodes. 

I agonize nearly every day wondering which option to take. Just so you know--I'm also thinking of going with a permanent colostomy. I've suffered rectal pain--not all the time--but often enough to be very afraid of it .

I just want to fight this disease, get my surgery and go back to some sort of lovely life like I had before all this. 

I know my post doesn't really help you, but I want you to know you're not alone. 

🙂

 

Susan

NYVET's picture
NYVET
Posts: 9
Joined: Apr 2021

Hi Susan

Usually it's nice to hear that someone is like you, but this time I'm sorry to hear you're in the same situation.

I found a few facebook groups that deal with the aftereffects of both options. abdominopperineal resection (APR) Surgery and Barbie/Ken Butt support group is one, I cracked up when I found out what a Barbie/Ken butt is, but I have a twisted sense of humor. Another is the Bowel Resection Recovery and Complications Support Group.

Oddly one group that dealth with LARS wouldn't let me join because I do not yet have the condition.  One very informative site I found is https://livingwithlars.com/what-is-lars/

I'm scheduled for the knife on April 29 so I still have a little time to decide but not a lot. When are you going for surgery?

Let me know if there is anything you need, I'm happy to share the data I gather-or you can just read the posts that I'm spamming in the various forums and facebook groups.

 

Good Luck & Stay Safe

George

 

RudiTuesday
Posts: 14
Joined: Jan 2021

I have had colon resection surgery, twice. Bladder reconstruction, twice. Temporary colostomy, twice. I was diagnosed in February of 2018 at age 51. I've been through chemo and radiation. I am female and had a total hysterectomy during my first colon resection surgery. Between chemo, radiation, surgery recovery, and Covid, sexual relations have been pretty non existent. My second ostomy reversal was this past August. My surgeon advised me that my bowel movements will never be normal again. I have urgency issues that send me running for the toilet. Sometimes I don't make it in time. Bowel incontinence happens several times a week for me. Irritation that is relieved by zinc oxide ointment happens daily. 4-8 BM's a day is pretty normal for me. I'm learning which foods are triggers and either avoid them, or choose to deal with the consequences. I do not work outside the home. At this point that would be difficult. Personally, I would rather have all this than have an ostomy bag again. When I had my ostomy, I had trouble with the bag not staying sealed against my stomach. I would have what I called bag blow outs when I was out in public and I would have to go home to change the bag. I would sometimes wake up in the middle of the night and have to change the bag and change the bed sheets. There are lots of ostomy supply companies out there and lots of different types of bags. Maybe I just never found the right one. Unfortunately there is no perfect solution for the situation we find ourselves in, and everyone has to make the best possible decision for themselves. I wish you well, and I hope you continue to post here. You will find lots of support here.

Annabelle41415's picture
Annabelle41415
Posts: 6692
Joined: Feb 2009

Sorry that you had to find us but I'm glad that you did.  It sounds like your doctor was very informative with you and pretty much gave you the concerns for both options.  Mine was low in the rectum so my doctor suggested chemo/radiation for 6 weeks, surgery (which included a temporary illeostomy) and then more chemo.  After 8 months with the illeostomy, they reversed it and made a J-pouch from my existing colon, since they took out my rectum.  I'll admit it has been sometimes difficult for me to resume a normal active life.  I'm not able to eat out since it could go right through me.  I'll never know when I'll go, but curbing my eating does help and I'm able to go shopping, or the movies.  Sometimes I'll go 10+ a day, but not always, it's just hard to tell.  Everyone is different and I'm still loving life everyday even though sometimes it feels I'm restricted, I'm still able to visit with my family and I'm here 12 years later.  It's a decision you have to be comfortable with.  As I've had both, having an illeostomy had it's drawbacks as well.  Wishing you the best.

Kim

 

SusyQ67's picture
SusyQ67
Posts: 9
Joined: Dec 2020

Hi there. Thanks for replying back to me. I'm also sorry to hear you're in the same boat as I am. How did we ever get here?! I find myself asking myself this question frequently. 

I also tried to join that group on FB about LARS and was also denied admission. I'm finding all cancer FB pages I read are full of horror stories. I try not to look at them

very often but I'm always in search of success stories. 

Thank you for sharing the options your surgeon gave you at Sloan Kettering. When I first talked with my surgeon, he said he'd do an LAR and temp ileostomy and reversal. I told him right there I was interested in keeping the bag. I know I surprised him but he was on board. As it stands right now I'm probably having my surgery in August. I wish it was sooner as I'd like to get this tumor out of me, but I'm doing the TNT approach--chemo, maybe chemo/rad and then surgery. The radiation part freaks me out most. I'm hoping somehow I can do either short course radiation or even better-no radiation. Whatever it takes, though, I will do it! (I think)

Regarding Barbie and Ken butt surgery--it seems so damn massive and scary! If we want permanent colostomies, do we have to have an APR? I've asked this question to groups on FB but also on FB group pages. No one seems to know the answer to this question. 

how high up is your tumor? Mine is located 7.2 cm up from the verge. 

Keep in touch and let me know which way you're gonna go. I have a feeling we both want the same thing. 🙂

 

take care, George! It's very nice to meet you. 🙂

 

🙂

SnapDragon2's picture
SnapDragon2
Posts: 472
Joined: Nov 2019

Are you saying you want a perm ileo?

NYVET's picture
NYVET
Posts: 9
Joined: Apr 2021

Hi Susan

When I read where your tumor is I did a double take, I knew mine was around 7 cm. So I went back and checked my scans. Initially mine was 6.8 cm from the verge, but has pulled back to 7.7 cm. It sounds like our tumors are almost twins, maybe you're my long lost sister or distant cousin....are you in the North East? Any relatives in the NYC area? LOL

I also went in with the attitude of lets get this thing out of me NOW! I keep annoying the staff and keep pushing to have the surgery moved up-although that means that I need to make a final decision about the surgery sooner.

When were you diagnosed and where are you being treated? (Of course if any question is too personal don't answer)

I get the sense that I may be a little ahead of you in treatment, I've finished chemo and radiation. For me the radiation side effects were hell, worse than the chemo. I did 5 consecutive days of radiation.

If you have specific questions please feel free to reply or to message me. I'm more than happy to talk and rely my experiences. In addition to maybe helping you it feels good to have someone to directly relate to.

Stay Safe

George

 

ellend
Posts: 105
Joined: Apr 2016

I was also diagnosed with rectal cancer, stage II, no lymph node involvement. The tumor was close to the anal verge so the surgeon was unsure whether he would be able to reconnect it. The diagnosis was late in 2015 and I spent the last few months of 2015 and much of 2016 going through treatment.

I also had a round of oral chemotherapy and radiation with the goal to shrink the tumor prior to surgery. The radiation was 5 weeks long 5 days a week. By then end of all that, like many others I was burned and it was extr emely painful to have a BM. The Iradiation oncologist was prescribed some suppositories and suggested some other ointments that would ease the pain between treatments. The radiation and chemo did their job, the surgeon said the tumor was almost non-existent by the end. I could have opted for a less invasive surgery, but he would not be able to check the lymph nodes near the tumor. I had the LAR (lower anterior resection) and he used robotic surgery so the incisions through the abdominal wall were small. It made recovery relatively easier. He also created a temporary iliostomy at the same time because he wanted the colon to heal before reconnecting it. I managed to get an infection anyway that landed me back in the hospital. I didn't get the reversal until after the mop up chemo.

I had a tough time with the iliostomy, so I was happy to get the reversal surgery. Digestive acids are very acidic and when the bag leaked it would eat away at the skin around the stoma. Sometimes the seal would last for 4 days or so, other times it would blow out a couple of times a day. The worse the skin got, the harder it was to get a good seal around the stoma. I could tell when it was starting to leak because the skin would start to itch and burn under the seal.

Even after 5 years, things are not back the way it used to be and nor will it ever.  The surgeon warned me that things would never be the same after surgery and I'd have to get used to a new normal. It was bad at first, not being able to leave the house at first because I knew I'd be spending so much time on the toilet and there were times I couldn't even go across the room to make it in time. I still have "accidents" where I can't make it to the toilet in time. If I really have to do something where I won't be close to facilities, may forego eating beforehand. It is sometimes discouraging, but given the problems I had with the iliostomy, this is better. Maybe a colostomy isn't as finicky as an iliostomy, but I don't have any experience with that. The main issue that I have to deal with is that its not just one and done much of the time. Sometimes it takes 3 or 4 times and it still feels like I have to go with no luck. The surgeon suggested that regular enemas might be helpful, but I haven't tried that so can't comment on whether it is.

Despite the issues, I have a pretty decent quality of life. I'm still able to be active and get out and enjoy the outdoors - biking, hiking, etc. I'm not as active as I should be even though that would probably help.

That's my experience. I'm sorry you have to face the same choices. Wishing you all the best.

Ellen

SusyQ67's picture
SusyQ67
Posts: 9
Joined: Dec 2020

Hi George!

I don't mind the questions at all! I'm being treated at the James here in lovely Columbus Ohio. 🙂

I could possibly be a long lost sis or cousin! 🙂

You look like the men on my mother's side of the family, btw. 

I appreciate you asking the questions you are asking on different forums. I read all of the comments. I know which way I'm leaning re: reversal or colostomy...just hope my choice can help me get back to my regular way of living. 🙂

main goals: get better and still love on and feed the hell out of my awesome family 💜

Deblip
Posts: 1
Joined: Jul 2018

Hello George (and everyone!)

First, I've never posted anything here, but I have read a lot over the past 2+ years and it has been very helpful to hear frist hand experiences from folks.

I had stage 3B colorectal cancer, super close to the verge. I did chemo, then radiation and finally surgery. I had several discussions with the surgeon and she was very up front about the possibiliy that the reversal, while possible and doable, might leave me with what others have described: 20 trips, urgency, leakage etc. I thought about my lifestyle and decided that a permanent ostomy was the way to go. I've been living with it for the past 2 years and I do EVERYTHING I did before the surgery. I go to work in the office, I have a fixer-upper I work on constantly, I ride my motorcycle (imagine having to go suddenly on that!), I participate in 5 and 10Ks, ride my bike, go camping, etc. EVERYTHING. I can't imagine what my life would be like if I had to stop and run to a toilet, or even just worry if one was nearby. I eat and drink whatever I want (although a low carb, very low sugar diet helps with quantity/consistancy of stool). I have my life back. 100%. I don't regret this decision. 

Once I healed from the surgery and my stoma settled into it's final position and shape and the stitches were gone, life went back to normal. My WOC nurse contacted the big 3 (coloplast, convatec, hollister) and had them send me sample kits and I eventually figured out which products worked best for me and I have almost no issues related to the colostomy. 

I hope this helps. Ultimately it's about what quality of life you want after cancer and surgery. I didn't want to heal, have the reversal, heal again, and then end up miserable because I couldn't go back to doing the things I enjoy on my terms. 

If you decide on the permanent ostomy - now or later - I'm happy to share some of my tips and tricks for making it 'smooth sailing'.

All the best

Deb 

 

danker
Posts: 1275
Joined: Apr 2012

Your young age is in your favor!!!  I was 77 when I was Diagnosed . Had a resection  after 6 weeks with a bag.   Then reattachment!  My main side effect is occasional diarrhea( suffering it for last two days.)

However, soon to be 89 living a normal life.  I am living proof that Cancer can be beat!!!  Whatever route you choose, best of luck to you!!!

Danker

worriedson714
Posts: 223
Joined: Dec 2019

       Have you considered the mental aspect of a colstomy bag ? My dad struggles alot with depression and body image issues he is very embarressed by it . However he does have both bags and neuropathy so me and my step mom help him manage the bag so it's not the same case as yours . I just thought it was worth mentioning good luck with whatever you choose . 

Lovekitties's picture
Lovekitties
Posts: 3357
Joined: Jan 2010

Hi, I am a 74 yr old female and have had a perm colostomy for the last 11 years.  For me I had no choice and I have to admit, not knowing the first thing about the appliances and what to expect was daunting, but here I am still chugging along.

The following book was recommended by my ostomy nurse.  It is an excellent source for the person just starting out.  It was written by a mother who had an ostomy and her daughter who was an ostomy nurse.  You may find it at your library, local book store or Amazon.  It is called  The Ostomy Book:  Living comfortably with colostomies, Ileostomies and Urostomies  by Barbara Dorr Mullen and Kerry Ann McGinn RN BSN OCN.

I would say the most important thing to do is assess your life situation...as many who don't have the bag have said there are daily trials.  There are issues with the bag as well but mostly managed by finding the right one and learning what you can do to prevent or cure issues as they arise.

I wish you and all who are facing this challenge much success regardless of which option you choose.

Marie who loves kitties

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