Upcoming Surgery

[galee]

I am preparing for my upcoming colon resection on September 23rd (the day before my 48th birthday).
I will be having a flexible sigmoidoscopy on Friday the 20th so the colorectal surgeon can get his own measurements/perspective of where my 3cm adenocarcinoma is exactly located.
I am writing for advice. What do I need to have on hand for those first days post resection or even the weeks to follow? Any tips or things that I might not be considering.
Feel like I need to preparing my personal ‘tool kit’ of sorts. I guess part of this is my energy overflowing that is ready to get this done.

[Jacques]

Some links to consider:

Packing for a hospital stay: The 15 things you’ll be glad to have:
https://carezone.com/blog/packing-for-a-hospital-stay-the-15-things-youll-be-glad-to-have/

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=59666&p=474389#p474389

[Rock_Robster]

Hi galee, with your tumour at the recto-sigmoid junction, do you know if you’ll be having a (Ultra-) Low Anterior Resection? Also open or lapro, and do you know if you will have a stoma (temporary or permanent)?

Cheers
Rob

[galee]

Rob,

My procedure will be a laparoscopic LAR. My surgeon spoke of a 10-15% chance of temporary stoma. I appreciate your response. I am eager to conquer surgery and see what I am facing in regards to staging, biomarkers, etc. It has been twenty-five days since diagnosis. Nine days until surgery.

Jacques, The link above will be very helpful!

With peace & gratitude,
Lee

[CF_69]

I had a tumor in about the same spot.

Even though my tumor was technically in the distal sigmoid, I was treated as rectal, so I had chemoradiation before surgery.

I lost my sigmoid and about half my rectum to the surgery. No stoma, though I was prepped for one.

I’m 6 months post surgery now, and I’m not housebound or chained to the toilet like many are. I have to take preventative measures before I go out, but overall it’s manageable.

My surgeon performed a side to end anastomosis which he explained at one of my follow up appointments. Quick version is that I have what looks like a T where I was reconnected. There is a bit of overlap that is supposed to give a little extra room for storage.

So far on a bad day I might go 7-10 times, but most days are less than that. I do eat a pretty high fiber diet. For example, I’ll eat a bowl of fruit and yogurt for my first meal, then a salad with fish or chicken for my main meal of the day.

The first few weeks will be tough, everyone will tell you that things will get better, and it will. My surgeon said it could take 18 months for your body to reach its “new normal.” I’ve also read 2 years. Everyone is different.

If I continue to improve for the next year or more, I’ll be pretty satisfied with that.

Other than frequency and trying to keep things moving along, my life is pretty normal, and for that I am extremely grateful.

Good luck with your surgery and recovery.

[MeAndMine]

I won't get my surgery until later this year so I can't give you any tips except for take it easy on yourself and know that each day should be a little better than the last. You're doing the right thing to get some tips and getting yourself prepared!

[AmyG]

My primary was in my sigmoid and I had it removed laparoscopically. I was pregnant at the time, so nothing for pain but regular tylenol.

I did really well as far as recovery, was up the same day walking the halls.

Good luck!!

[Rock_Robster]

Rob,

My procedure will be a laparoscopic LAR. My surgeon spoke of a 10-15% chance of temporary stoma. I appreciate your response. I am eager to conquer surgery and see what I am facing in regards to staging, biomarkers, etc. It has been twenty-five days since diagnosis. Nine days until surgery.

Jacques, The link above will be very helpful!

With peace & gratitude,
Lee

Lee, no worries at all!

Our situations are very similar - I had a ULAR by lapro (robot) to remove a 3.5cm tumour which was around 10-12cm high. The only different is I was guaranteed a temporary ileostomy, due to prior radiation to the area. I’ve put some of my tips below - I have more but I’m a bit of a nut with these things (my hospital didn’t have a formal ERAS program so I had to run my own...), so I’ll stick to the big ones here.

I’ll include my stoma tips below, but of course we all hope you won’t have to worry about that!

- You may have a consultation with a stoma therapy nurse before the surgery to mark up where it will go. Wear your favourite pants to this appointment to make sure it doesn’t interfere with them.

- Ask the surgeon not to place port sites too close to the stoma! This makes healing and wound care way harder.

- It’s not an overly painful surgery, but I suggest asking your anaesthetist about a regional (spinal) block (morphine or long-acting fentanyl) to help minimise pain/inflammation and reduce need for opiates.

- You’ll probably have to do a bowel prep first, but if you have a 6 hour fast make sure you get some decent calories before the six hour mark (eg bone broth, jelly, etc). Also ask your anaesthetist if you can have a clear carbohydrate drink 2 hours before surgery (like Dex or Gatorade).

- Walk walk walk walk - small amounts frequently. The latest enhanced recovery guidelines target 1,000 steps within 24 hrs of surgery, 4,000/day after that, then 8,000/day by discharge. I didn’t quite manage this much, but I got pretty close. The key is to do small amounts, frequently.

- Take pain meds before walking if you need to. Progressing to oral Tramadol is good when you can to avoid the heavy opioids (eg oxycodone, morphine). Fewer opioids means less risk of ileus means earlier discharge. Also being off IV painkillers means fewer observations and earlier discharge.

- Start out by taking your meals sitting out of bed as soon as you can. Progress to spending the days sitting out of bed, only using the bed for naps or sleeping. You’ll recover a lot quicker this way, with less risk of complications.

- Start soft proper foods as soon as you can without nausea. Earlier eating = earlier discharge.

- Stoma nurses are directly descended from angels. Ask every question you have and don’t be afraid to ask more. Don’t stop until you’re satisfied with how your new friend is behaving.

- I slept propped up on pillows for about 2 weeks as lying flat was uncomfortable.

- Stomas or resected bowels tend to be quite “active” once they wake up, so foods that slow it down are good. Rice, bananas, mashed potato, banana bread, fish/chicken. Avoid raw fruit/veggies, mushrooms and any nuts for a while. If you have a stoma, stock up on Imodium too as most folk stay on this for some time.

- Plain water doesn’t do much to rehydrate ileostomates. Pick up some oral rehydration salts from the pharmacy, mix yourself up some St Marks Solution, or in a pinch use Gatorade (though the sugar levels may contribute to high stoma output).

Best of luck with it - it’ll all be over before you know it.

Cheers
Rob

[DarknessEmbraced]

I hope your surgery goes well!*hugs* My tumor was in the same area. I had an open surgery where half of my sigmoid and half of my rectum were removed. The best advice I can give after surgery is to walk as much as possible because it helps to get the bowels moving again. Also hugging a pillow when you sneeze or cough helps it not pull as much on the incision as much. I was in the hospital for 6 or 7 days. I had an epidural put in while in the OR which really helped. I have been in remission since my surgery in 2014. Chemo wasn't needed. My digestive system has never been the same since surgery. I get lots of bloating, gas, cramping, and bowel movements are either many small bowel movements a day, constipation or sometimes diarrhea. I had my first ischemic colitis(lack of blood flow to the colon) at the end of 2015. I still get attacks of ischemic colitis but haven't had any attacks with bleeding since I started taking a daily low dose coated aspirin in December. It was recommended by my GI.

[NHMike]

I had a meeting with the WOC Nurse a week before in which she explained things which went over my head, then she came a day after surgery to show me how to do things and I was rather a klutz at it and trying to take in the shock of having to do it and she helped me change it one or two other times. I had a visiting nurse to help but she wasn't really helpful (she ordered colostomy bags for me which I had to return). I was scheduled for another meeting with the WOC nurse a week after surgery but it was postponed a month. I had a number of problems during that time including leakage - which can be quite painful. The WOC nurse provided a different kind of wafer/pouch which solved the leakage problems. Things would have been much less painful if I had seen her the week after surgery.

It's a lot easier to change the bag/wafer with help. You should set up some kind of location, system and supplies to do so. I did it in the shower, with a stool where I placed some of the supplies. I had someone hand me the things that I needed when I needed them. My fastest change was under ten minutes. My slowest was probably around an hour. There are products that make things easier.

Insurance usually provides wipes for adhesive but people mentioned the spray here which insurance doesn't cover. But I found it to be far more efficient to use the spray. If you have to cut the wafer, do it before you have to start. Try to have everything ready and handy before you start.

What would be nice is a video of this but I couldn't find useful videos on YouTube. I think that they would violate ToS as it's easier to do without cloths on as things can and do leak.

Make sure that you have the ordering down for supplies. I use McKesson and they screwed up several orders, including shipping to my home when I asked them to ship to my office. I was away on a trip and it was 20 below for a few days and they left them outside.

The supplies are expensive - so I tried to be efficient with them - that is I tried to get a week out of a wafer/bag. They usually give you enough so that you can change them every three days. It is nice to know that you have enough to last an extra period of time if there are ordering/shipping issues.

[Rock_Robster]

The supplies are expensive - so I tried to be efficient with them - that is I tried to get a week out of a wafer/bag. They usually give you enough so that you can change them every three days. It is nice to know that you have enough to last an extra period of time if there are ordering/shipping issues.

This is very true NHMike - I usually change my ileostomy wafer/bag every 2 days but can stretch to 4 if needed. I don’t know how the system works in the US, but here we can place one order per calendar month. So I placed my first order after my surgery on the 22nd, then the next one on the 1st of the following month - meaning I always have a couple of weeks’ spare supplies in case of issues or travel. Only issue with that is if you need to change your products, so I wouldn’t go more than one month in advance.

[Zod]

Here are some things I've done to make life with a (hopefully temporary) ileostomy better.

1 I'll call my WOC nurse if I have questions or problems. She has been super-helpful. Also visited her one time a few weeks after surgery to sort stuff out.
2 The vendor for my bags has a help line you can call for help. They also gave me some good advice. They also sent samples of other bags and stuff to try. Very helpful.
3 Different insurance covers different types of supplies. Your WOC nurse may be able to get more items qualified for your insurance.
4 WOC and supplies manufacturer gave me ideas how to make the bags stay on longer and what causes them to come off (in my case, too-watery output). There were a few things I was able to change that make the adhesion more reliable (I can get 3-4 days usually). Some pretty minor changes made a big difference.
5 Right after chemo (Folfoxiri) I have to change bags every 1-2 days for about 4 days, since my output turns COMPLETELY watery. I'm still working on ways to fix that problem.
6 Changes to diet and output consistency can change durability of the bag adhesion.
7 Will you hit your out of pocket maximum on insurance this year, assuming you have insurance that has a maximum? If so, your supplies may be no-cost after that.
8 Precut a few wafers before you travel and carry at least a few sets of stuff in your carry-on. NOTE - you may or may not be able to take the ostomy scissors in carry-on.
9 I use a pedestal sink for changes. It was a narrow front edge (about 1 inch) and my belly protrudes over so it's very convenient for making changes. Also has a shelf next to the sink to set out the supplies first. This may or may not work for you - I usually shower right after the change.
10 I hold my hand over the wafer area for 5-10 minutes after a change and press down LIGHTLY to warm the adhesive so it will stick better and also in case I didn't get it fully adhered in the first place.
11 Hotter weather makes the adhesion fail sooner for me, and WOC nurse and ostomy vendor help line both say that's normal.
12 Do you still have visiting nurses? Mine were pretty good (although I did change some stuff they recommended eventually). It was nice to have several different nurses come in and show me their various different ways of doing bag changes.

[NHMike]

I found that potatoes and sweet potatoes fixed the watery output problem. They do an amazing job soaking up liquids.

Avoid red beets if you can - they look like blood in the bag and the red persists for a while.

Large pieces of food can cause blockages so chew well.

Some food is processed in the large intestine. Since food never makes it to the large intestine with a temporary ileostomy, the food is wasted from a nutritional perspective. I suppose that could be a good thing or a bad thing.

I used a triangular memory foam wedge to sleep on in bed or slept on a recliner so that the bag output wouldn't flow up to the filter and then eventually result in it failing with potential blowout from gas buildup and eventual leakage.

[galee]

I appreciate all of your thorough responses! Preparing to travel tomorrow for my pre-op appointment as well as a flexible sigmoidoscopy on Friday. Followed by LAR on Monday the 23rd.

With gratitude,
Lee

[Deep]

I am preparing for my upcoming colon resection on September 23rd (the day before my 48th birthday).
I will be having a flexible sigmoidoscopy on Friday the 20th so the colorectal surgeon can get his own measurements/perspective of where my 3cm adenocarcinoma is exactly located.
I am writing for advice. What do I need to have on hand for those first days post resection or even the weeks to follow? Any tips or things that I might not be considering.
Feel like I need to preparing my personal ‘tool kit’ of sorts. I guess part of this is my energy overflowing that is ready to get this done.

My surgery went smoothly. I was in the hospital for 9 days though because my bowels did not wake up right away. Are you getting a temp iliostomy? That takes a little getting used to. Other than that, don't stress the surgery too much. I felt no pain throughout the entire process.