CALLING ALL RECTAL CANCER ,POST SURGERY, NEED EXPERIENCED ADVICE

WinneyPooh

I am going to be seeing the surg. To discuss my retal surgery, my primary mass is in the rectum and at onset was quite large, it could be easily felt with finger and it is high in the rectum and they are hopeful they can remove it, and i may or maynot have to have a temp ileoscopy,

I will be having an ultra sound done next week and CT scans done to determine how well the chemo has worked, CEA is normal ( it was never really elevated),

I have a spot on my liver and they will want to do that surgury later.

What should i ask the surg. about the rectal surgery.

What should i expect, from the surgery, what are or have been your complications,

I am in realitive good health, a little fat, and for the most part the worst thing about the chemo has been the diareah and the all around weird feeling and fatigue and heat flashes and muscle cramps and forgetfullness, other than all that it has been super easy:)

Also they have been saying they may want to add radiation. Which i am pretty sure i want nothing to do with!!!!!

All of you who have had rectal surgery please help me know what to ask and what to expect, also if anyone has gone to Emory in Atlanta for Surgery please let me know your experiences.

Many thanks

Winney

Sundanceh

Hi Winney
Just on my way off the board, but checking one more time.

I would ask the surgeon:

Is it going to be temporary or permanent?
How long is my hospital stay?
How long before my bowels began to wake up?
Will Nursing Home Health Care be available or set up for you when you get home?
-- they pack the wounds and change the dressing and take vitals and such.

I had an LAR but did not end up with an ostomy - almost but not quite. They radiated me 25x and I also did the 5fu pump for 7 days / 24 hours a day in weeks One and Five - radiation the entire 5 weeks.

So in my case, they had to rest me from the radiation for about 6 weeks in order for the tissue to heal enough for surgery. Too early and you're not healed for operation - too late and scar tissue builds. I had millimeters to work with or I would have had a colostomy, so we did not have much to work with. Timing was everything.

The radiation was really rough. I don't want to alarm you but its rough on the intestinal area. Again scar tissue from the treatments - going to the bathroom was hard. I had several bleeding episodes from the surgery and we had to do scopes to go in and cauterize the various holes.

If they do a temporary ostomy on you, your results were differ. The radiation and the surgery never gave my bowels or any of the skin or various parts to really heal. You used them everyday so it was difficult. I see now why they do temporary ostomies. But again, with so little to work with, I figured my temp might turn to a perm, so I went the hard way.

I don't want to be graphic, but when they beam the radiation into your colon area, it has to exit somewhere. So for a man it's one way and for the woman it's the other way...you know? You might ask the oncologist for some cream for sensitive areas if you do radiation. Those areas can turn really red and get very raw after several weeks of treatment.

Your energy level will become zapped to after a few weeks of treatment...will continue for a few weeks afterwars too...about three or four weeks and then you start to feel better and energy slowly retrns.

I hope this helps some.

-Craig

lizzydavis

I had a colon resection on
I had a colon resection on May 15, 2009 (Rectal Stage III – No tumor). Approx. 6" was removed. I was in the hospital for 3 nights. I slept in a recliner when I got home since I was not comfortable in the bed. It was easy for me to get up and down by myself that way and I used a comforter and was cozy.
Things went better than I expected. If you have more questions, please feel free to ask. That's why we are here - to support each other.
------
I was prescribed a Low Residue Diet after my surgery.
---------A low residue diet eliminates coarse fiber and other indigestible material that may cause distress to the gastrointestinal tract and designed to reduce the volume and frequency of bowel movements. It is similar to a low fiber diet, but also restricts milk and milk products and prunes.
This is some info I found which may help you and your family.
Details of the procedure-------------
*** What do I need to do before surgery?
Please contact your insurance company to verify the coverage and determine whether a referral is required. You will be asked to pre-register with the appropriate hospital and provide demographic and insurance information. This must be completed at least five to ten days before the surgery date. Your surgeon will give you specific instructions on how to prepare for the procedure.
***Before surgery, your colon will need to be emptied. Your physician will give you directions on how to do this. You may be put on a liquid diet and instructed to drink a solution that will induce diarrhea. You may also be instructed to give yourself an enema.

***What happens on the day of surgery?
You will report to a pre-operative nursing unit, where you will change into a hospital gown. A nurse will review your chart and confirm that all paperwork is in order. You will be taken to a pre-operative nursing unit where an anesthesiologist will start an IV. Before any medications are administered, your surgeon will verify your name and the type of procedure you are having. You will then be taken to the operating room. After the appropriate form of anesthesia is administered, surgery will be performed.
What type of anesthesia will be used?
You will have a pre-operative interview with an anesthesiologist who will ask you questions regarding your medical history. Colon resections are performed under general anesthesia, which will keep you asleep during your surgery.
*** What happens during the surgery, and how is it performed?
If your surgery is performed laproscopically, your surgeon will make three to four small incisions, and insert tube-like instruments through them. The abdomen will be filled with gas to help the surgeon view the abdominal cavity. A camera will be inserted through one of the tubes that will display images on a monitor in the operating room. In this manner, your surgeon will be able to work inside your abdomen without making a larger incision.
Your surgeon will perform the colon resection with the laparoscopic method unless other factors require open surgery. If the procedure will be performed with the open method, your surgeon will make one larger incision to enable him or her to view and repair the colon.
Once inside, the surgeon will clamp off the diseased section of colon and then cut it free. The diseased colon will be removed, and the healthy colon stitched back together. In some cases, a colostomy (link to colostomy procedure) may be performed.
***** What happens after the surgery?
Once the surgery is completed, you will be taken to a post-operative or recovery unit, where a nurse will monitor your progress. It is important that your bandages be kept clean and dry. Mild discomfort may occur at the incision site, so your surgeon may prescribe pain medication. You will be scheduled for a follow-up appointment within two weeks after your surgery.
**** How long will I be in the hospital?
Most patients are in the hospital from five to seven days with an open colon resection and three to five days with a laparoscopic colon resection. You may need a ride home when discharged from the hospital.
What are the risks associated with a colon resection?
As with any surgery, there are risks such as bleeding, infection, or an adverse reaction to anesthesia. Other risks include injury to the ureter, bowel, or spleen, and anastomotic dehiscence, which is the separation or leaking of the sutured colon. Your physician will inform you of the risks prior to surgery.
*** What should I watch out for?
Be sure to call your doctor if any of the following symptoms appear:
• Fever
• Worsening pain
• Redness or swelling around the incision
• The incision is warm to the touch
• Drainage from the incision
Will there be scar(s)?
If the procedure is performed laparoscopically the incisions should heal well, leaving small discrete scars. If the open method is used, a larger scar will be present.
*** When can I expect to return to work and/or resume normal activities?
This can vary from patient to patient. There are no restrictions after laparoscopic colon resection. You will be encouraged to return to normal activities such as showering, driving, walking up stairs, light lifting, and work as soon as you feel comfortable. Some patients can return to work in a few weeks while others prefer to wait longer. You should not perform heavy lifting or straining for six to eight weeks after open surgery. If you are taking narcotic medications for pain, you should not drive.

*** While you are in the hospital for recovery, stay ahead of the pain curve and if you have discomfort, don't be afraid to ask the nurse for the pain killers. Even when you start feeling better, and you will, stay on the pain meds. They make the stay more bearable.
Also, get up for a walk as soon as you can. They won't let you out until your system kicks back in and the signal for this is passing gas. Walk as much as you can while in the hospital.
Holding a smaller pillow over the incision area. The pillow is comforting. Don't be afraid to ask for an escort while you walk, you wouldn't want to trip or fall.
**** You will also be very, very thirsty in the beginning and they'll just give you crushed ice, but if you can tolerate it, you can have more.
It takes about 3 months to be back to yourself. So, don't push going back to work or your normal routine too quickly, it will be tempting. Try to stay busy with books, light housework, TV, Internet while you are home. Get outside and walk as much as possible.
Also, if they use staples on your incisions, when they take them out, it's no big deal, most of them I didn't even feel. A couple were only a tickle while being removed. None was painful.

mommyof2kds

my story
ask if the are going to do a sphincter sparing surgery.
How long will you need the ileostomy
treatment plan for after the surgery.
I did have radiation and chemo for 5 1/2 wks prior to surgery, I did ok with it, there was no tumor left by the time they did surgery, so the rad/chemo did its job. I do have some urinary dribbling as a side effect of the radiation, but overall that was the only side effect that stayed with me...

My surgery involved a low anterior resection, I needed a temp ileostomy to allow healing and will get a reversal in dec 6 wks after my chemo finishes. I stayed in the hospital for 5 days(which was really good, some people stay a few days longer) I had a epidural and PCA morphine for pain control and the pain was tollerable. I had an incision above my belly button down to top of pubic area. I had staples which were removed 2 wks later. I ambulated for the first time the niht of the surgery, just standing at the bedside and them moved a little more and more each day. I had a foley to drain urine for a few days(till the epidural came out). I didn't need a NG tube since the tumor was in the rectum. I did have alot of swelling, and not much of an appetit for a while, lost about 20lbs. went home with good pain meds and took it easy. Took about a good 5-6 wks to feel pretty good and then chemo started again. Hope this helps a bit.. I didn't have any mmajor issues, recovery went well. Best of luck with your surgery..

Fight for my love

Hi Winney,my hubby is going
Hi Winney,my hubby is going to have surgery in Sep,so I haved posted the same question as you do,this is the link of discussion I had before,hope this is helpful:
http://csn.cancer.org/node/172572
http://csn.cancer.org/node/172743

Buzzard

Fight for my love said:

Hi Winney,my hubby is going
Hi Winney,my hubby is going to have surgery in Sep,so I haved posted the same question as you do,this is the link of discussion I had before,hope this is helpful:
http://csn.cancer.org/node/172572
http://csn.cancer.org/node/172743

ostomy
Winney,
All of the above is right on the money ..I will add one thing. As far as a permanent colostomy you saying that it is high in the rectum there may be enough clear margin to keep from getting a permanent one. I think that saving the spincter muscle (inner and outer) is the basis on whether or not its temp or perm. It sounds like yours being high there is a good chance of being temporary for you.....Good luck

KathiM

My rectal tumor was in the first rectal fold....
My surgery removed all of my rectum and my sigmoid colon, and converted my descending colon into a 'new' rectum...called a J-pouch proceedure....it works VERY well, and I am past 4 years since my surgery. I had radiation and chemo before my surgery. It was no 'walk in the park', but it was doable...and survivable (obviously...ROFL!).

Be prepared to have a few challenges after surgery. My first year was fairly narly, but that was due in part to my second 'primary site' cancer (breast this time) diagnosis and treatment. I learned that I needed to drink plenty of water, and watch the constipation...seemed to lapse into bowel obstructions (9 total). So I didn't take much Immodium, although for others, it's a Godsend! Ask about post-surgical exercise...what and when and how long...that first year is soooooo important!!!

Please keep us posted...

Hugs, Kathi

KathiM

KathiM said:

My rectal tumor was in the first rectal fold....
My surgery removed all of my rectum and my sigmoid colon, and converted my descending colon into a 'new' rectum...called a J-pouch proceedure....it works VERY well, and I am past 4 years since my surgery. I had radiation and chemo before my surgery. It was no 'walk in the park', but it was doable...and survivable (obviously...ROFL!).

Be prepared to have a few challenges after surgery. My first year was fairly narly, but that was due in part to my second 'primary site' cancer (breast this time) diagnosis and treatment. I learned that I needed to drink plenty of water, and watch the constipation...seemed to lapse into bowel obstructions (9 total). So I didn't take much Immodium, although for others, it's a Godsend! Ask about post-surgical exercise...what and when and how long...that first year is soooooo important!!!

Please keep us posted...

Hugs, Kathi

Oh, one more thing....
I'm NED (No Evidence of Disease) on both cancers...

I always tried to find something to smile about every day....take care of your body like you would a faithful, old, comforable friend...it's doing everything it can to help...

Hugs again, Kathi

pamysue

Hey Whinney
Rectal cancer survivor here. Did not have chemo first, they thought it was stage 2, found out it was stage 3 at surgery. Then chemo. They wanted radiation, but I refused for a number of reasons.

1. My tumor was not through the wall. I only had one positive lymph node that bought me the chemo.
2. Rectal cancer chemo hits a squarish/rectangle that includes the 2 largest storages of bone marrow in your body. If it kills off too much bone marrow, you can get lukemia.
3. 1 in 3 chance of losing control of bladder. I was only 43 at the time. I'm too active and was not going for that.
4. Once you have radiated something, it's been done. I had no mets. If I end up with more colon cancer, I will still have the radiation card to play if I decide to.
5. Iliac arteries in both hips are in the path of the radiation. My best friend's mother died after these were so damaged from radiation for rectal cancer.

These were my reasons after I told all the doctors to BACK OFF and let me think and research. I did what I knew that I could live with. If my cancer comes back, I can handle it. If I'd lost bladder control, had vascular damage, gotten lukemia... any of those AND the cancer would have still come back. I would be a basket case.

You do what you know is going to be okay for YOU. Don't be told by anyone. I also met with a vascular surgeon before making my decision and he said I was in great shape and he would say to do the radiation. My onc and chemo nurse agreed whole-heartedly with my decision.

As for what to ask your surgeon. The most disconcerting thing for me was going home with an illeostomy that was an "innie" rather than an "outie". Ostomy nurse at the hospital said it was one of the hardest to care for she had ever seen. My home health care nurse had no idea how to deal with it. My surgeon did not want to deal with it. As him how he cuts an ostomy and if it's in or out. Ask him who you have to turn to for help with it besides the internet. (I know of a great ostomy board if you ever need it). Ask him why he would NOT do an ostomy so that your incision has time to heal properly without bowel moving through it.

Just what I've been through and a few things I wish I'd known. Good luck to you, hon.
Pam

Dingo44

KathiM said:

My rectal tumor was in the first rectal fold....
My surgery removed all of my rectum and my sigmoid colon, and converted my descending colon into a 'new' rectum...called a J-pouch proceedure....it works VERY well, and I am past 4 years since my surgery. I had radiation and chemo before my surgery. It was no 'walk in the park', but it was doable...and survivable (obviously...ROFL!).

Be prepared to have a few challenges after surgery. My first year was fairly narly, but that was due in part to my second 'primary site' cancer (breast this time) diagnosis and treatment. I learned that I needed to drink plenty of water, and watch the constipation...seemed to lapse into bowel obstructions (9 total). So I didn't take much Immodium, although for others, it's a Godsend! Ask about post-surgical exercise...what and when and how long...that first year is soooooo important!!!

Please keep us posted...

Hugs, Kathi

Straight connect from rectal cancer
Hello, I am new on this. I was just reading your blog. I was diagnosed with rectal cancer in January 2008. I am in my 5th month of having a straight coloanal anastamosis. I have a foot of my sigmoid colon out and all of my rectum. I wish I was doing as well as you are. I take imodium everytime I eat and the doctors recommend benefiber and probiotics . The imodium works but , whenever I use the benefiber and probiotics it turns my stool to a grainier texture. I feel like a failure sometimes.

Hope to hear from you

Dingo44