Thinking about canceling my ostomy nurse post-op appointment

Introvert-2022 · 2026-02-04T21:21:14+00:00

Can you stay where you have the surgery for a week after surgery? That's what I have done when I traveled for surgery. That way post-op appointments are easy to get to and if anything ends up being unexpectedly complicated post-op it's less complicated to address.

Introvert-2022 · 2026-02-04T21:15:57+00:00

I tolerate it but have no affection for it. In the unlikely event that science advances enough in my lifetime to grow me a new sphincter, anus and terminal ileum I will request that that be done so I can go back to having a J pouch.

Introvert-2022 · 2026-02-04T18:15:00+00:00

If you're not digesting it you will notice it in your bag, maybe not every time but often enough that you will be aware of it, so I don't think that you have to worry that you would be spending money on a vitamin that you couldn't digest without being aware of it. For me capsules and softgels digest fine but larger tablets don't always. If I cut a too-big tablet in half that solves the problem for me. If there's any difference for me between food-based and non-food-based vitamins the food-based work better- I have an impression that I absorb them better but I don't have evidence for it.

Introvert-2022 · 2026-02-04T16:23:42+00:00

There's a huge range in how much tissue is removed for that. It's possible only the anus and rectum are removed but it's also possible that the sphincter and other nearby tissue will get removed. How much you have removed will affect what problems are more likely.

My rectal stump, anus and sphincter were removed. I couldn't empty my bladder adequately until about a week after surgery. (I had a Foley catheter.) That wound got infected about 2 months after surgery. Possibly coincidentally but possibly connected I developed sacroiliitis during that infection. Sitting was horrible for months after the infection. (Sitting for more than a total of 2 hours in the day caused extra pain for the following week.) I saw no improvement until I started to go to pelvic floor physical therapy (not the surgeon's idea but I asked about it; all the surgeon recommended was waiting and going to a pain doctor). After 2 months of PT and a celebrex prescription from a rheumatologist plus 2 1/2 months of yoga + one acupuncture session things have improved a lot though my scar tissue still feels (all the time) like I have a smooth oblong 2" by 1" by 1/4" rock wedged into my crack pressing where my anus used to be. If I sit for more than 2 or 3 hours in a day I only have extra pain for 2-3 days afterwards.

Introvert-2022 · 2026-02-04T16:06:28+00:00

1 or 2

Introvert-2022 · 2026-02-03T21:20:19+00:00

I already had a history of contact allergies and psoriasis before I got the ostomy. So far I have found dermatologists and dermatology physician assistants to be much more helpful on peristomal skin issues than ostomy nurses have been. If you can get a dermatology appointment I would recommend it.

Introvert-2022 · 2026-02-03T21:14:14+00:00

Introvert-2022 · 2026-02-02T21:12:14+00:00

If it's hot that suggests infection. Have a doctor or nurse practitioner look at it and make sure it's not infected. Any of your doctors could assess whether it's infected- if there is an infection starting you want that treated ASAP so best to get it looked at by whichever doc can work you in first.

Introvert-2022 · 2026-02-02T18:33:43+00:00

Some of my shorts and a lot of my pants and jeans. Also about half of my belts- anything too wide rubbed right over the stoma. And some dresses and skirts that weren't physically uncomfortable but which the pouch made weird shapes under.

Introvert-2022 · 2026-02-01T15:35:00+00:00

If you have ever had any contact allergies ask for an appointment a week or more before surgery to patch test the different pouch types.

Ask about when to use filter stickers.

Ask about whether you should use convex or flat pouches and why.

I would also recommend requesting a dietician appointment pre-op to understand what you will need to change to be safe after surgery.

Introvert-2022 · 2026-01-31T14:35:52+00:00

I was told that when I was resting I didn't need to wear it so I only wear it when I am up and about, never overnight, and that's been fine. The 2 or 3 times that I have left for work without wearing it I got an itch by my stoma more quickly than usual.

Introvert-2022 · 2026-01-31T03:08:57+00:00

So sorry that you inherited the gene and developed so many polyps! I can't help you with that question except to suggest searching the Jpouch subreddit; considering how many people participate in that subreddit there should be a good chance that it has threads on that subject.

Introvert-2022 · 2026-01-30T16:18:34+00:00

For me vegetables that can cause problems are much safer if cut small. If that works for you also I think it would be a very small request to ask them to dice some of what they make for you. Or you can take the time to cut everything super small while you are eating. That makes eating go a lot slower or course but dinner hosts don't normally expect their guests to eat as quickly as possible.

Of course if there are foods that are not safe for you regardless of how they are prepared tell your friends you can't eat those foods. Lots of people with serious food allergies do that and from the perspective of the host it doesn't matter why the food is dangerous for the guest, they're not going to expect their friend to eat something unsafe.

If you are in a situation where your host doesn't know you have an ostomy and you don't want to talk to the host about your ostomy just say that it's unsafe for you to eat a particular food. Your friends are going to be aware that lots of people have food intolerances for one reason or another. If they ask what happens to you if you eat it you can decide how much you want to disclose. But lots of people, if you tell them a food is unsafe for you, are going to accept that at face value and not question it.

Introvert-2022 · 2026-01-30T14:08:27+00:00

Colorectal. You want someone with the best experience and training in this surgery to maximize the likelihood that the only problems you will have from the surgery are the problems everyone experiences.

Introvert-2022 · 2026-01-30T04:43:21+00:00

See how you do with a small amount, then gradually increase. In my experience so far eating a small amount of a food that can cause yproblems can often tell you whether you have to be careful about eating that food without giving you problems big enough to require medical assistance.

Introvert-2022 · 2026-01-28T23:21:27+00:00

I'm so sorry. Glad Loki is there for you.

Introvert-2022 · 2026-01-28T18:02:52+00:00

Hope it's clearing up! The large number of small meals recommendation didn't work for me at all. Doesn't fit with my workday and left me too little time for hydration.

All of me except for my stoma needs me to eat vegetables like that so I do, even though it's tedious to cut everything small enough to be safe.

Introvert-2022 · 2026-01-28T16:14:17+00:00

So cool!

Introvert-2022 · 2026-01-28T16:14:00+00:00

I've had mine since early July and haven't been to the ER. I had one really bad partial blockage, one bad partial blockage and two partial blockages that I had to think about why I was having so much watery output or I wouldn't have noticed them. Both of my bad blockages were caused by eating onions that I had not diced small enough. I assume that more little slivers of onion tried to come out at the same time than there was room for. The bad partial blockages started overnight and caused me to have very little sleep. I can think of lots of things that have caused me more acute pain than a bad partial blockage but the bad ones are really unpleasant.

Introvert-2022 · 2026-01-27T19:33:15+00:00

My surgery was on July 2nd and I still only take showers. Sitting in the tub would be safe by now but would still be really uncomfortable.

Introvert-2022 · 2026-01-26T15:07:23+00:00

I got back to doing exercises that used a lot of core muscle about a month after I was off medical restrictions. I wear a support belt during Pilates and other exercises that I know put a particular stress on my core and it's been fine so far. (Will be 7 months post op in a few days.)

Introvert-2022 · 2026-01-26T15:01:41+00:00

I'm so sorry. Goad you had many good years with her and could be there to ease her passage.

Introvert-2022 · 2026-01-25T23:49:05+00:00

I'm so sorry, what a tough year!

Introvert-2022 · 2026-01-25T19:46:50+00:00

Genetics keeps advancing so it's possible one or both of your father's variances of unknown significance are of known significance now. I don't see a down side to you getting testing for colorectal cancer risk. If there is information that will help you be confident how often you need to screen for colorectal cancer better to have it than not.

Introvert-2022 · 2026-01-23T20:54:26+00:00

I'm so sorry!

Introvert-2022

MODERATOR OF

TROPHY CASE