Need advice about surgery, and reconnection

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 said:

Trubrit

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

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

NYVET said:

I'm decent sized. A little

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.

 

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 said:

Thank you for the feedback.

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

 

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, 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

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 said:

Hi George

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. ?

 

?

Are you saying you want a perm ileo?

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