Upset.... I need help from anyone who was diagnosed with Rectal Cancer!

[dmondgirl]

Good Morning all!!

My fiance was diagnosed with rectal cancer last year, went thru 4 chemo treatment Folflox & 5FU, 28 radiation treatment with Xeloda... surgery was done March 17 and was discharged April 1 due to a leakage. a drainage was placed thru his right butt cheek and until this day he still has it.
He responded more than 50% of his treatment... pathology report states T3N1 with clear margin and the tumor was no longer there only tiny residues. His oncologist was very happy to see that he did pretty good and responded to the treatment.

The surgery took longer than expect because the surgeon found that there was part of his sigmoid colon received radiation so the surgeon took care of that too. 4 days after his surgery he got a fever and tailbone pain...they discovered an internal leakage and place a drainage thru his right buttcheek. He is having a rough time recovering..... We've been seeing the surgeon every week... they moved the drainage a little out where it was initially placed but based on the last xrays they did the small "hole" still there .... the surgeon wants to see him in 2 weeks.

My poor fiance has pain in his "rectum/colon" area is an internal pain and also he feels like when he urinates that area gets swollen and once he finish urinating it goes down .... we have mentioned all this to his surgeon and he explain to us that all this is due to the drainage and the leakage but things will start getting better.


I am getting so upset because I see that other people have responded so good to surgery with no complications and here my poor fiance still dealing with stupid uncomfortable pain arrghhhhhh!!!

Is this all part of the healing process???? Help me please!!! Does anyone know any good rectal cancer surgeon that can we can go and see in the NYC area... Maybe in MSK???.... right now we are going to North Shore LIJ we dont have any complain about this great cancer center but I am getting annoyed with the surgeon

PLEASE PLEASE ANY ADVICE!!!

[Jacques]

How to Select a Surgeon
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=52349&p=410280#p410280

[esscape]

Dear dmondgirl,
That's the part of healing process. Tailbone pain and urinating pain are both common problems after those operation. You didn't mention about the surgery name. Was it APR or TME?

[dmondgirl]

How to Select a Surgeon
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=52349&p=410280#p410280

Thank you His surgeon is actually a Board Certified colorectal surgeon!! Maybe we just wishing for things to get better faster!! :/

[dmondgirl]

Dear dmondgirl,
That's the part of healing process. Tailbone pain and urinating pain are both common problems after those operation. You didn't mention about the surgery name. Was it APR or TME?

That is exactly what I keep telling my fiance...but we just wish things can get better and heal faster :/ He had an LAR and the surgeon used the Da Vinci procedure.... but if i am not mistaken i think i saw the word TME in the report... i will double check tonight... How is your sister doing?

[esscape]

She has severe pains. She did ok after surgery but when we got home she is not comfortable.
We keep telling her this is normal cos that was a huge surgery. I watched some APR surgeries from youtube, oh man! I would be surprised if she has no pain:)

[tarheelmom]

I had lap ULAR with TME exactly 3 weeks ago. The surgeon removed my rectum, sigmoid colon, and descending colon. I recovered quickly from the initial surgery, but I do have pain in the tailbone area. Sitting for any length of time gets uncomfortable. I also have trouble urinating - the stream is slow, and I have to change positions on the toilet in order to completely empty my bladder. When I stand or walk I tend to get a lot of pressure in the pelvic area, and I have all sorts of weird sensations internally. I talked about all of things with the surgeon. His response is that rectal surgery causes a lot of trauma to organs and tissues in the pelvis. There isn't a lot of room to work so things like the bladder get "pushed" around during the surgery. His response was to just give it more time. Nothing is really painful - just mildly disconcerting. He did do an ultrasound of my bladder to make sure I could empty it with the position changes. Sorry your boyfriend's recovery is not optimal.

[dmondgirl]

She has severe pains. She did ok after surgery but when we got home she is not comfortable.
We keep telling her this is normal cos that was a huge surgery. I watched some APR surgeries from youtube, oh man! I would be surprised if she has no pain:)

Wow i can only imagine! Hope she gets better soon

[dmondgirl]

I had lap ULAR with TME exactly 3 weeks ago. The surgeon removed my rectum, sigmoid colon, and descending colon. I recovered quickly from the initial surgery, but I do have pain in the tailbone area. Sitting for any length of time gets uncomfortable. I also have trouble urinating - the stream is slow, and I have to change positions on the toilet in order to completely empty my bladder. When I stand or walk I tend to get a lot of pressure in the pelvic area, and I have all sorts of weird sensations internally. I talked about all of things with the surgeon. His response is that rectal surgery causes a lot of trauma to organs and tissues in the pelvis. There isn't a lot of room to work so things like the bladder get "pushed" around during the surgery. His response was to just give it more time. Nothing is really painful - just mildly disconcerting. He did do an ultrasound of my bladder to make sure I could empty it with the position changes. Sorry your boyfriend's recovery is not optimal.

Thank you for your response.... yes what your doctor told you is the exact thing I am guessing is happening to my fiance.... I mean we have mentioned everything to the surgeon and he keeps telling us give it time and things will heal and get better.... i guess is just us wanting to see the light at the end of the tunnel....

[GreenLakeGirl]

Sometimes you need to hear the bad stories.
For one surgery, I stayed in the hospital an extra ten days because my colon wouldn't wake up and pass gas. I was bloated and uncomfortable and in pain, but there wasn't anything they could really do for me, so they sent me home on liquids. It was another five days before my guts woke up. Then I ended up with an infection at the surgical site and had a drain for four months. They finally had to surgically go in, drain the infection, and find the leak to repair it.

When I had the drain, I wish I had spoken up sooner or more vocally about my discomfort. There's a lot of watching and waiting/"come back in 2-3 weeks", and at some point if your fiancé is not getting better, he may need to talk with his medical team to develop a plan. At about week 10 or 12, I had to finally say, "I can't handle this anymore; what are my options?" and tell my surgeon that anything was preferable to another month of watch&wait&drain.

It looks like he's about week 4/5 after coming home? He might still be in the slow recovery range from surgery. He may still need to wait for the body to heal for a couple more weeks; do continue to update his medical team, and good luck.

[JJ2212]

I am getting so upset because I see that other people have responded so good to surgery with no complications and here my poor fiance still dealing with stupid uncomfortable pain

Not everyone recovers from this type surgery in the same way or in the same timeframe. It's major surgery and even the best board certified surgeon can't garantee that there won't be any longterm or even permanent consequences.

For example, peeing has just never been the same since my surgery 2.5 years ago. I tend not to feel the need to urinate until my bladder is very full, and then when I go, I have to strain like crazy just to get a few drops out. That's my new normal. And I still have drainage from the internal wound (where the rectum used to be) after all this time. Both my surgeon and oncologist say that this is because of my chemo regimen ((stivarga) so there's no other option than to endure it.

I'm not trying to be discouraging, but don't think that everyone breezes through surgery and comes back to 100% quickly. It might take some time and some adjustments to get there. Your fiance will heal at his own pace.

Take care,

Janie

[dmondgirl]

Sometimes you need to hear the bad stories.
For one surgery, I stayed in the hospital an extra ten days because my colon wouldn't wake up and pass gas. I was bloated and uncomfortable and in pain, but there wasn't anything they could really do for me, so they sent me home on liquids. It was another five days before my guts woke up. Then I ended up with an infection at the surgical site and had a drain for four months. They finally had to surgically go in, drain the infection, and find the leak to repair it.

When I had the drain, I wish I had spoken up sooner or more vocally about my discomfort. There's a lot of watching and waiting/"come back in 2-3 weeks", and at some point if your fiancé is not getting better, he may need to talk with his medical team to develop a plan. At about week 10 or 12, I had to finally say, "I can't handle this anymore; what are my options?" and tell my surgeon that anything was preferable to another month of watch&wait&drain.

It looks like he's about week 4/5 after coming home? He might still be in the slow recovery range from surgery. He may still need to wait for the body to heal for a couple more weeks; do continue to update his medical team, and good luck.

Thank you for sharing your experience... yes this week will be 6 week since his surgery....

[dmondgirl]

I am getting so upset because I see that other people have responded so good to surgery with no complications and here my poor fiance still dealing with stupid uncomfortable pain

Not everyone recovers from this type surgery in the same way or in the same timeframe. It's major surgery and even the best board certified surgeon can't garantee that there won't be any longterm or even permanent consequences.

For example, peeing has just never been the same since my surgery 2.5 years ago. I tend not to feel the need to urinate until my bladder is very full, and then when I go, I have to strain like crazy just to get a few drops out. That's my new normal. And I still have drainage from the internal wound (where the rectum used to be) after all this time. Both my surgeon and oncologist say that this is because of my chemo regimen ((stivarga) so there's no other option than to endure it.

I'm not trying to be discouraging, but don't think that everyone breezes through surgery and comes back to 100% quickly. It might take some time and some adjustments to get there. Your fiance will heal at his own pace.

Take care,

Janie

Thank you for your response and for sharing your personal experience