Upcoming Ultralow Anterior Resection

[MaryannW]

Hi everyone,

I'm undergoing my ultralow anterior resection in 3 weeks. This follows diagnosis of T3N0M0 rectal cancer in early Feb of this year. I've had 5.5 weeks or radiation and Xelolda and am having a rest at the moment before the op. My operation will be open and TBH I'm a little anxious. My tumor is very low - 3cm from dentate line and I'm to have a coloanal anastomosis but in the hands of a very experienced and careful surgeon thank goodness. I'm looking for positive stories regarding the op, some experience of recovery times and any tips anyone might have for recovery. I'm walking 30 minutes a day and doing stair climbs for that extra push to keep fit for the op. I'll have a temporary ileostomy and most likely mop up chemo prior to reversal down the track. It's all been a bit overwhelming and my life is on hold really until I get through the treatment.

Any advice on ultralow anterior resections (open), recovery and temporary ileostomy most welcome and appreciated.
Maryann W

[MSJC]

Mine wasn't as low as yours, but all the rest is the same thing as I went through last year. Walk as much as you can after surgery, it really helps. My ileostomy took a bit of getting used to, but never gave any trouble. Chemo was tough, but I made it! Bowel habits will never be the same, just have to figure out what works for you. Be patient, keep asking folks here for advice. I have found the good people here to be better than most Doctors at common sense answers...good luck!

[MaryannW]

Thanks MSJC. Yes I will keep the walking as a goal post surgery, around the bed, around the ward, around the house, yard and street and increase that all the time. Thanks for the advice. The 3cm is from the edge of the tumor which is 5.5cm in total from anal verge. Can never work out whether they measure from the bottom of the tumor or top???? Anyway, determination has always got me through in the past and it will again.
MW

[cathy123]

Hi Maryann,

I had surgery march 9th for a tumor also 3 cm from the anal verge. It was a long surgery (8 or 9 hrs) because they had to hand sew me due to lack of space. They were able to do it laproscopically though - is there a reason your dr is not attempting this? I think it makes recovery much easier. The first few days after surgery it was pretty painful to use my ab muscles to get in or out of bed, but I got to come home on day 4 and was off pain pills by the following week so really it wasn't too bad.

A few weeks later I did have a bunch of bleeding and it turned out there was a tear and the anastamosis site, but the dr has been checking and it has healed back up.

As far as the ileostomy - honestly the first month or do was pretty tough. I had lots of issues with leaking and was paranoid every time I left the house. But the stoma nurses kept helping and I now found a system that is working well for me. Now I am having issues with a yeast infection under the adhesive that I have to keep on top of but besides that I don't worry about it much when I am out. Still definitely looking forward to getting rid of it though!

Good luck!

[lauragb]

Hi Maryann,
I had a very low 5cm tumor with open surgery and straight connect like you will have. I also had a complete hysterectomy at the same time so that is different from your situation. With the open surgery, I will admit that I had a lot of pain the first few days. Like everyone says, getting up and moving is the best thing you can do. The nurses and assistants were persistent in keeping all of us moving on the colorectal surgery unit which was helpful. I stayed sore for a pretty long while but I don't tolerate pain meds well so was off of them after the first week. I gradually increased my walking distance after I got home but was very careful not to lift anything heavy. With reintroducing food, take your time and if you feel even a hint of nausea, don't eat solid food. You want to give your bowels a chance to wake up gradually.

Are you seeing a WOCN (wound, ostomy, continence nurse) to prepare you for the ileostomy? They should be marking a spot for the ostomy that will work with your body type and clothing line. Also, while in the hospital, you will be trained to change your wafer and pouches. If you can have someone with you to watch the training, that is good because you will be on narcotics (not the best training state of mind) The nurses will be able to choose what they think are the best types of ostomy supplies for you. You may need to experiment to find what works best for you. The stoma shrinks for a period of time so the wafers need to be cut to size for a while. Although I had some tears and adjustment the first month of having my ileostomy, I ended up getting used to it and at the end of 7 months was even eating almost everything. My surgeon has the reputation for making the best stomas and I only had 2 leaks, none after getting the right wafer.

Each step of this treatment has its own challenges but you are well on your way. Good luck on your upcoming surgery. Keep us posted.

[ozziej]

Hi Maryann
This is my first post although I have been lurking for several months since I first found this board. The information provided by the members has been invaluable. I am a 56 year old Australian female diagnosed with Stage 1 RC 11/14 after having a polyp removed via endoscopic mucosal resection. Had an open incision ULAR (coloanal anastomosis) with temp loop ileostomy 3/15 and am now 2 weeks post ileo reversal. Was in hosp for 8 days incl day of resection. Had urinary catheter, drain tube, drip, and PCA(morphine). No neo-adjuvant or adjuvant chemo or radiation. First few days were rough (pain, bloating) but I found that walking helped. Had read up on having an ileo & spoken to someone I know who has a permanent colostomy. Was good practical and psychological prep for the real thing. Once I could eat I pretty much stuck with a low residue diet that minimised gas and excessive output. Was careful to stay well hydrated. No lifting but lots of walking. Only had 4 leaks in the 11 weeks I had Susie the stoma. Stoma nurses know heaps, set me up with daikin seals that prevented leaks most times. I took oral thrush meds to deal with 2 minor thrush under the bag issues. Otherwise no real skin issues. (Checked this board frequently for ostomy tips). Was very nervous about having the reversal after reading about bad experiences but also found lots of advice and positive experiences on this board that I tried to hold onto. First day after reversal was rough but quickly improved after passing wind and then poop. Stayed with the low residue diet and home 4 days post reversal. Reversal was 15 days ago. Most poops in one day was 16 and least has been 9 however quickly moved from very loose to fully formed. Had some urgency but quickly gained control. No accidents but the clustering is a pain in the butt. Had my best day so far yesterday. .lots of time in between poops so starting to feel "normal" again. See my surgeon in 3 weeks. Happy with how I'm progressing. So my advice is try to stay positive, search this board for tips, expect ups and downs, and remember that everyone's experience is unique. Oh, and feel free to ask ANY questions. I am no expert but found that learning about others' experiences really helped.
Good luck for the op.
PS. Thanks to everyone on this board, can't overstate how much your posts have helped me.

[justin case]

I had a low tumor, I also had one in the sigmoid. I ended up with no rectum to speak of, and a straight connect. I had a temporary illiostomy, (we didn't get along) and had reversal surgery 3 weeks after my first surgery. Nothing is perfect as far as the physical impact, but it is 3 1/2 years later, and life is manageable. In fact, it seems I need to take a break, from all the things,I have to get done
Regards,
Michael

[chrisca]

My two cents:

Ask if you had a complete tumor response, meaning the radiation and chemo completely killed the tumor as far as tests can indicate. If you did, consider doing a local excision with watchful waiting and skipping the rectal resection. If you end up with LAR syndrome, life will never be the same as it is now. Since you are N0M0, there is little reason to remove so much of your bowel. Medicine has a principle called "first, do no harm." With rectal cancer, it seems that oncologists have forgotten this principle and remove way too much of the bowel when there is a low tumor. Someday, I believe this will be viewed as barbarism.

The pluses are that you keep your rectal function, and this is a VERY BIG plus. You will also have a much easier recovery.

The minus is that there is currently no way to tell that all the cancer was killed off. So it could recur. But if it is watched carefully, that could be managed and the cancer would be caught at a very early stage. Technology is improving and allowing better detection of cancer at extremely low levels. We don't have perfect tests yet, but they could be just a few years off. Even if there are a few cells there, they will take time to grow and by the time they are worrisome testing would find them. The watching may include several sigmoidoscopies and/or more frequent colonoscopy or CT. You will need to ask what that entails. So the testing could cost more and be more inconvenient. But as someone who spends three hours a day on the john, I would gladly take the tests and money over the loss of productivity, travel restrictions, and impact on life of LAR.

I am not a doctor, and your risks are your own decision. What I am saying is that with the LAR I have, if I had it all to do over again I would have done the local excision as I had a complete response. Whatever you do, give it a lot of thought before going forward. I trusted the docs, and now realize that in our medical system, patients must do the work to be fully educated on all options before allowing the surgeons in.

[MaryannW]

Thanks everyone for your responses. Cathy123, my surgeon prefers open for me because of my particular anatomy - very narrow at the site. It's a shame I know but would rather he has every chance of successful join, rather than not.

It's a daunting time, and I'm hoping that all goes well. Thanks for all the info though, it makes it easier to see that people recover well from this surgery in most cases.

cheers and stay well,
MaryannW

[chrisca]

Another thought. If you decide on rectal resection, there is recent literature indicating a technique to reduce the risk of ending up with LAR syndrome:

Functional results after treatment for rectal cancer
J COLOPROCTOL. 2014; 34(1): 55 – 61

http://www.scielo.br/pdf/jcol/v34n1/2237-9363-jcol-34-01-00055.pdf

I wish I had read it before my surgery (actually, the article didn't exist yet.) On page 58 is the key thing to discuss with your doctor before surgery:

Recently, a study showed that careful preservation of the
colonic and pelvic nerves can result in less fragmentation of
stools. In high ligation of the inferior mesenteric artery and
dissection of the lymph nodes close to the aorta, the extrinsic
autonomic sympathetic nerves to the rectum and left side of
the colon are resected, causing a sympathetically denervated
colonic segment used for creation of the neorectum. This
has been suggested to be a major cause of stool fragmentation,
due to the missing negative feedback of the defecation
reflex, causing an urge to defecate even when only small
amounts of stools are present in the neorectum. Therefore,
it has been suggested that resection with preservation of the
left colonic artery might preserve autonomic function without
compromising oncological outcome.

Stool fragmentation is the major bugaboo of LAR syndrome. When it happens, the urge to go continues for an hour or more after first starting. Small stools continue to come out very slowly and there's no way to stop it. If the surgeon can protect these nerves, it may prevent the syndrome.

[MaryannW]

Chris, sorry you're having problems. How often do you have fragmentation? How many stools in a day and what do you try to minimise number of bowel movements and fragmentation etc.

On the local excision, no I wouldn't go for that given my risk factors for reoccurrence even with shrinkage. Stage II, T3 tumor and ultra low anastomosis for example. Reoccurrence is disastrous as you know - at the least APR, or worst palliative.

[MaryannW]

Chris, sorry you're having problems. How often do you have fragmentation? How many stools in a day and what do you try to minimise number of bowel movements and fragmentation etc.

On the local excision, no I wouldn't go for that given my risk factors for reoccurrence even with shrinkage. Stage II, T3 tumor and ultra low anastomosis for example. Reoccurrence is disastrous as you know - at the least APR, or worse palliative.

[hart2hart]

Hi -

Have you asked your surgeon if he/she will hand-sew your connection if needed? Pete's was
ultralow like yours and our Ace Surgeon hand-sewed his connection for almost 4 hours (usually done by a stapler)
to save his sphincters! Please ask this question if you already have not. Good luck! Positive vibes to you!




Julie and Pete
Stamford, CT

[MaryannW]

Thanks hart2hart, will do.

[ozziej]

Hi Maryann,
Just read Chris' most recent post. To me, this speaks to the need for a highly skilled and experienced surgeon for the ULAR. My polyp was first found by a rural GI who did a scope with a biopsy. Assured me it was benign and referred me to another GI in the city as the polyp was 'too large and too flat for him to remove'. The city GI did an EMR and high fived me that he'd 'got it all' and wished me well. Day I'm due to fly home he rings me to tell me I have the big C and have to have a third colonoscopy so he can tattoo the margins as he hadn't done that (cos he still thought it was benign)...go figure?? Then he was happy to refer me back to the rural GI who was hatching a plan for his mate the general surgeon to do the ULAR. At this point my retired nurse mother went ballistic (she had been begging me to see a city colorectal surgeon she knew). So the short story is that I ditched the amateurs and was operated on by one of the most experienced CR surgeon/researchers in Australia. My belief is that his skill and experience is directly related to my positive outcome and indeed he referenced the need to preserve the relevant nerves. I guess my experience just reinforces what appears to be rule number 1 on this board. ..unless it is an emergency do your research and get the very best specialist CR surgeon you can. No less important has been the support of my amazing mum and the tips and moral support I have found on this board (especially those little things that no professional tells you about). Keep us updated re your surgery. Will be swinging chickens for you.
Cheers
Jan