Amount of supplies & type of surgery

I don't know about all GI docs but mine is not a surgeon. I was referred to a General Surgeon in the hospital that my GI works in. Some doctors do specialize in bowel surgery though (I think who you are referred to depends on your insurance and who your doctor knows). Has your doctor said that you would likely need a bag? I'm sure that insurance would cover supplies, I don't see how they could not. But I guess it all depends on how good your insurance is.

You want a colorectal surgeon not a general surgeon for any kind of bowel surgery. That of course is just my personal opinion....you may know a general surgeon that you trust whole heartedly. But I would want someone more specialized. The j pouch procedure definitely requires a colorectal surgeon who is trained and skilled in doing it.

Here are my answers to your questions:
I was referred to a colo-rectal surgeon who specializes in IBD-related surgery. She is amazing; I had no problems with my surgery. I had a total proctectomy with end colostomy. My ostomy is a sigmoid colostomy- that means that my stoma is on the left side, is continent (meaning that when I haven’t eaten a trigger food, it “goes” on a regular schedule, like someone without IBD and a “normal” system does), and has fully formed output. Everything from the sigmoid colon back was resected. I no longer have a rectum and my anus was sewn shut. I spoke with my surgeon about keeping my rectum/anus (I wasn’t interested in keeping them, but she mentioned it was a possibility), if they are left intact, it is called a “rectal stump.” The stump still creates mucus and people who have one still have to “go” to void the mucus. My disease was perianal and severe (fistulas, tags, abscesses, ick) so the surgeon said she was going to remove everything and she mentioned that she usually does remove those parts anyway to avoid future issues with colon cancer. I was fine with everything being gone!!
I have insurance through work under a Blue Shield HMO- it is good coverage. All of my supplies, which I get through Edgepark (love them), are covered. My pouches, faceplates, eakin seals, sureseals, powder, paste, and barrier film are covered with no copay. I even got a nice ostomy belt (I think it was the phoenix belt) at no cost through Edgepark. So far, the only thing that wasn’t covered was a new pair of curved scissors (I needed blunt edge ones for travel. Australia did NOT want me to have my old pair with one sharp edge, but that’s a different story!) I also have to pay out of pocket for the black zipper locking disposal bags. I know those aren’t covered because my Hollister pouches come with gray thin plastic disposal bags, but they totally suck. I tend to do a full order (pouches, faceplates, eakin seals, barrier strips) every other month (about $1500 worth) and get pouches (about $300 worth) monthly. No cost to me. Of course, this all depends on your insurance. Generally, there is a certain amount of supplies that the insurance has deemed a reasonable amount needed for a certain timeframe- that represents what they will cover. Look up your benefits for durable medical equipment- sometimes, ostomy supplies are on what’s called a “soft goods formulary.” If you have the opportunity to get your supplies through Edgepark.com, I would recommend it. I am very happy with them. Additionally, they have good prices for items your insurance won’t cover.
Good luck with your journey! My ostomy surgery saved my life in more ways than one.

YOU GUYS ARE FABULOUS, ABSOLUTELY AMAZING!!!!

I am so thankful for the HW community, thank you thank you thank you for all the info and quick responses. Just great!!

I do have good insurance, so I think I'll be alright. I already get catheter supplies (3 month supply at once) from a company called Liberator, and they do offer ostomy supplies, but several of you mentioned Edgepark as a really good company, so I'll have to check them out. Obviously I'm hoping for best products, least hassle/frustration.

And as far as the surgeon, I think i will request a specialist, my anatomy is already pretty goofy due to a bladder augment surgery 8 years ago (which included removing my appendix and sorta re-using it, taking some intestine and using it to enlarge the bladder, and the creation of a stoma to cath thru). My GI is at a large teaching hospital, so i imagine he's got a good surgeon he uses for this kind of stuff.

As far as I know so far, I'm interested in being sewn shut. I don't want to have to bother to deal with discharge on top of everything else. Aside from healing time, are there reasons I wouldn't want that done?

One last thing, it is my understanding you meet with an ostomy nurse or someone before surgery and they are the ones who decide placement of the stoma, is that right? They help you with a bunch of stuff right after surgery too? Any advice about stoma placement--higher/lower, one side better?

Ok, I'll let you all go now! It's incredible how much there is to learn about this!! The more I learn though, the better i feel about the whole thing.

Thanks again for all the info. You really are so thoughtful and caring to share your experiences and thoughts with me.

The down side to getting sewn shut is that it's a very hard place on the body to heal a wound, and a lot of people have complications. A lot of people are fine -- just discomfort for a few weeks -- and some complications aren't that bad.

In my case, I had to have a second surgery seven months later because the wound didn't close (it turned out there was a fluid pocket blocking it, probably related to an abscess I had after surgery -- a complication that was more serious because of the pred I was on then). After the second surgery, I had bed rest to stay off the wound for several months. Then it still didn't close all the way (different place than the first time), although it didn't limit me too much. Finally my nurse used a new product which closed the wound ... but I had an open wound for three years (at the end it was only 1 cm or so).

My case is not typical at all, and in many ways I'm still glad i was closed because the cancer risk was so high, and the mucous would be annoying.... but there are certainly reasons why people wouldn't want it done.

A good ostomy nurse helps a lot. Go before surgery and bring the clothes you like to wear. Talk about your activities to get help on the best placement for you. Lower is often easier to hide, but you want to make sure the wafer is in a good place relative to any belly fat (or potential belly fat if you're going into surgery thin... many of us gain weight after surgery), and if your torso is short, you don't want to get in a place where the wafer is too close to pubic skin etc.

In terms of sides, the best is to put it closest to where your intestine will end.... so if you're having an ileostomy, it's usually on the right, lower down. A colostomy can be on the left or right, depending on how much colon is removed, and it's often higher up. It is possible to move it to the other side and such, but mostly it makes sense to put it where the end of the intestine is, more or less.

To get a feel of what it's like to have the bag, ask for a sample to take home, and fill it about 1/3 full with applesauce and wear it -- take a shower or bath, whatever you do, try it with clothes over etc.

It's really helpful to ask these questions before surgery, so keep asking. My nurse was amazed at how much I already knew ... and most of it I learned here.