AMA - Procotocolectomy or life pooping in a bag

Miscellaneous and Personal Stuff I Must Share
1

So, for the past 6 years now I have been dealing with colorectal cancer, thought we had it whipped via chemo and radiation once, but the little barstid came back and the chemo didn’t touch it so I ended up getting my rectum and the end 20 cm of colon removed on Feb 14th.

I spent 5 days in hospital, and was sent home with a foley catheter in for urine, and a brand new Stoma [named P’tit Joey after Le Petomane, because for the first few weeks I farted LOTS. Which did nothing for my dignity, but did make my inner 12 year old boy giggle a lot.] mrAru, being crosstrained medical by the Navy has done all my wound care over the past 30 years so they were willing to send me home still hooked up, and he did my wound care though I did all the emptying of pee and drainage, and measuring/tracking the results. I had weekly visits from the official home health nurse to get the log of results, and do a quick visual check just to make sure everything went well.

At the 2 week point, I went in and had my foley removed, and one of the drains because it stopped having drainage to deal with, and the wound site had healed well enough that the wound site would not be infected by urine passing the area, and I was cleared for sitz baths to clean the area after urination. The week after the other two drains came out, and all that was left was waiting for the interior sutures to absorb and the exterior ones to get pulled at the one month mark by the nurse [or at least the ones that didn’t actually decide to dissolve and fall out on their own.]

Other than now pooping into a bag which actually improved my quality of life a hundredfold, nothing has changed. My diet has gone back to all the regular foods I ate before, I just have to make sure everything is chewed properly [nothing quite as funny as the string from a whole long string bean extruding out in the poop =) ] I even manage whole kernal corn, and the leathery skin from those really large canned butterbeans. [hey, don’t judge, I happen to love them with butter, salt, pepper and lemon.]

And as an odd aside, mrAru and I decided that once I land permanently in a wheelchair from the damned spinal stenosis, I am getting a matching urostomy [peeing in a bag] because it will be more dignified than wearing a diaper while struggling to get to a toilet.

So, I think I covered most everything, but ask away. I would be willing to take pix of P’tit Joey, but stomas are pretty boring, they are just a little bit of intestine on the outside instead of tucked away on the inside. They have no nerve endings, so they don’t hurt or tickle to take care of, and many people give theirs names [there are a few threads over on reddit r/ostomy where people mention what they named theirs. My favorites are Vladimir Poopin and Poopoo Baggins, the possessor of the Brown Ring of the Middle Girth =) ]

2

I’m glad you have a sense of humor about the whole thing!

My 4-year boobaversary, the anniversary of my breast cancer diagnosis, is coming up on the 3rd. I’m doing fine.

3

Any problems with smells leaking out? That’s what my grandmother always complained about (but her manual dexterity in attaching it was probably not so great).

4

When your doctor told you what was needed, how long did you think about it before consenting? Was it a difficult decision?

5

The Younger Ottlet is on her second stoma (with a j-pouch in between — long story), and this time around she has drops to put in the bag that pretty much kill any odors. From an outside perspective, they make a significant difference.

6

Is the bag glued on the stoma with surgical adhesive? I had a coworker that occasionally went home to change clothes.

It’s all part of adapting to changes in our health. Gotta do whatever is required.

I admire your positive attitude. Glad to hear the operation has improved your quality of life.

7

Grats, almost finished with your 5 year countdown is good!

Not particularly, though obviously the fart gas smells when I have to sneak a bag burp in. If some poop gets on the outside and I don’t notice it can smell a bit. I was worried at first, but everybody I asked told me they didn’t smell anything. There are several million ostomates wandering around the US at any given time so chances are you have been stuck in an elevator with one and didn’t notice =)

Well, the mechanics of colorectal cancer made the decision a no-brainer. Imagine your body as a kitchen sink with a drain clog - if nothing can get out, it gets nasty. The first time around, they discovered it during my routine 5th year colonoscopy when it was 15 cm from anus inwards, the entire circumference of my colon, and the entire depth of the tissues - and it was choking my output from the normal 1.25 inch poop diameter to about the diameter of a finger. I hadn’t noticed any change in pooping because I had irritable bowel diarrhea type so it was generally oatmeal consistancy instead of solid toothpastey consistancy.

The first run of treatment had it go away totally, the whole area had multiple biopsy points that tested negative for irregular cells, and the blood tests for markers were negative, so we started my 5 year countdown. I got quarterly bloodwork and sigmoidoscopies every 6 months and just over the 2 year mark they discovered it came back. I had been told there was a 50/50 chance it would stay gone, and I failed the dice roll. It came back like a freight train - from a bit more than a polyop to the size of a gold ball in about 6 months [and that included the first half of chemo.] We decided that it was useless to finish the last half of chemo and go for radiation because it was growing while on full chemo. As soon as we had the imaging and sigmoidoscopy we made the appointment for the first slot the surgeon had available that coincided with the plastic surgeon.

It really was a no-brainer, death or barbie butt and a bag. I preferred to live =)

Yup, and some people drop in an altoid mint, which works more or less the same.

I use plain olive oil to lubricate - they have specialty drops to lubricate, but cooking oil works just as well and is dirt cheap [I have an old saline irrigation solution bottle I transfer oil into at home, and a 1 oz saline eyedop bottle for in my messenger bag.]

mrAru reminded me that I describe the actual proctectomy part is like field dressing a deer, but they put me back together neatly - they sort of core around the anus and rectum so they can remove the end of my guts. They stitched everything back together and did a vaginal vault reconstruction [the rectum and vagina more or less share a set of muscles between them] in my case they didn’t have to scavange muscle and skin from my thigh or stomach, they were able to sort of stretch the flaps together and sew them up.

8

My mother’s best friend’s husband had a colostomy from the time he was 17, until he died in his 70s about 20 years ago. Being 17 stinks anyway, and then he was facing…THAT? IDK why he had the procedure to begin with, but in any case, he lived a normal life for more than 50 years afterwards.

It’s not the worst thing that can happen to a person.

BTW, I follow a You Tube channel by a woman who had a proctocolectomy a few years ago, due to Crohn’s disease, and she’s still dealing with her anal wound not healing. That doesn’t sound like much fun, to put it lightly.

9

That must have sucked, 17 and major surgery and body rearrangement. As you said, 17 is hard enough!

For a long time diabetic, I heal fast and well. Over on r/ostomy there are people like her with wounds not healing, or getting fistulas, or stuff from the skin being exposed to digestive juices making the skin erode.

With any butt surgery, sitting is a royal pain in the arse [literally] And peristomal hernias are an issue [they split the muscles to pull the intestine through to make the stoma, which makes the area more prone to herniating] It really is a major big deal, there are a lot of things that can go sideways fast.

10

And back then, there was no such thing as a support group.

In later years, he was one of those people who would go talk to a prospective ostomy patient if they wanted to meet with him.

11

Welcome to the front-butt club! Well, sort of. I don’t wish this on anyone, but you know what I mean. I’m coming up on my third anniversary. I honestly would have had mine done YEARS earlier, but doctors simply must exhaust every option before doing the necessary thing, it seems.

It seems horrible to those who don’t have one, but if you’re sick enough to need one, often it is far more of a relief than anything else. I felt better than I had in years within a couple weeks! It’s astonishingly easy to get used to as well, at least it was for me. It’s not ideal, but it beats what I was dealing with previously. I did end up with a parastomal hernia, but they won’t fix it until I end up in the ER from it. Like I said, they must exhaust every option before doing the necessary thing.

Aruvqan, I’m glad you had someone to help you at home with the healing. The rectal surgery is more difficult than the stoma area, I thought. I hope this finally brings the cancer issue to a close.

12

I have a friend who went through several surgeries and for a while had 3 ostomies, but is down to two. Quite frankly, it’s amazing she is still walking around. She has been a willing poster child for ostomies and educating people in their use. Best attitude ever.

Did you have any problems (as she did) with leaking through surgical wounds? I suspect her situation was unique as she couldn’t do stitches or staples, but it made her recovery really tough.

Stomas are an awesome invention.

13

In 1966-67 we spent a year in Germany. While there, my mother’s diverticulitis reoccurred, so she had a colostomy for a while.

At the same time, my dad was reading The Rise and Fall of the Third Reich, which had a swastika on the cover. Since he knew that was verboten in public, he had to cover it. The sticker that you removed from the colostomy bag to expose the opening was the exact right size, so he used one of those.

50-odd years later, the word “colostomy” makes me think of a swastika. Yes, I realize that’s kinda weird.

14

I also have a something similar, but it is an ileostomy. Which just means all the rectum and large intestine is gone right up to the small intestine (terminal ileum). Anywhoo, had it for about 30 years now. Still works…

It is a result of Crohn’s disease when I was 19 or so. It is not great, but I’m sure healthier than I was with that colon that betrayed me.

15

Great thing for him to do, I sat around and discussed it with a person in the waiting room for about half an hour, having one is very different from reading about having one =)

I know exactly what you mean. At least my time dealing with needing one one was moderately short as compared to those with non-cancer digestive issues - some of the people with celiac or other really nasty digestive issues can go through 1-=15 years before the doctor and insurance company finally agree they need it. As I said above, when I can’t move around easily on my own, I am going for the urostomy so I don’t have to sit around in a diaper. I probably should have just had it done a couple years ago instead of seeing if it really was gone.

Damn skippy, the stomach [I had it done lap, so no huge gutting scar] was a breeze other than remembering to roll and lever instead of using the gut muscles to hoik myself off the bed =) On the 5 year countdown now, so I hope so as well =)

I will say it does suck I can’t sleep on my stomach or left side - before I sort of did a pendulum of left side, roll into recovery, on the stomach, roll to the right recovery and then to the right side. I can’t sleep on my back unless I start out tranked out cold, and as soon as I am awake enough to move, I roll onto my side. I am thinking of sourcing a 5 foot, twin bed sized by 8 or 12 inch thick piece of heavy foam to cut a sort of stomach hole in so I can sleep face down again [I really really miss sleeping on my stomach!] It needs to be somewhat wedge shaped so my feet can be lower than my head, though I was joking with mrAru about getting a massage table and cutting a stomach hole in it so my face can be through the face hole, and my arms on that little shelf, I get the best rest on Max’s massage table =)

Oh look, here is one with the hole already there, and a couple holes so my boobs can sort of free range =)

16

Not exactly, I got sent home with drains in place, so the seeping was sucked out. I did have a little bit of bleeding around the stoma which is actually normal, and I split a couple sutures in my buttcrack on the way home, so I sent a pic to my surgeon and he said it was not that big a deal, if I wanted I could come back and he could stitch it up again or I could have mrAru use surgical glue and butterflies [which is what we did, though we did have the suture kit and lido if I wanted him to stitch me up. I am willing to let him do light wound repair on arms, legs or hands [we kept sheep and poultry, always some sort of accident going on] but didn’t want to bother dealing with my butt when glue worked fine.

Over on reddit, people describe various products and there is a thin sheet of some sort of alginate/whatever that frequently goes over wounds if they are under the flanges to protect the healing area, wonder if that might have been useful? They even have manuka honey infused flanges in Europe and Down Under for those that have allergies to the stuff the Big 3 in the US make. [Hollister, Convatec and Coloplast]

LOL but it makes perfect sense =)

Cancer sucks, but Crohn’s sounds even worse.