2 weeks until Step 1. General Qs

So... today is my 2 year wedding anniversary.

Tomorrow is my 1 year IBD-symptom-versary.

And my Surgery is 2 weeks away! wowowowowow

Being in the hospital all of last week, really slowed my brain down on researching.
Normally I am a read, print, research, highlight, organize, dissect, etc kind of person.
And I started doing that after making my decision. But after a week in the hospital because of Ulcerative Colitis... I haven't been focused on having an Ileostomy at all!

So I have some general questions, though I am having my pre-op exam and meeting the Ostomy nurse at the hospital (that I'm having my surgery... 2 hours away. Not one up here, yet. Should I call and schedule to meet her before?! or after?!) on Friday.

As for now,
I have the above question.
Also, how do you get your supplies? Through the pharmacy? I got some samples but is it easy to switch around with insurance/pharmacy and see what you like??
Also, some samples I can't get because I don't know how big my stoma will be.

What are the different parts? I have samples of bags and the adhesive ring that goes around your stoma, but that's it. On youtube, I see videos of like 6 things they have on the counter with them for bag change!

Also; I've been eating and supplementing with a focus on my colon for 364 days now.... so how is it different to supplement for Ostomy? Should I still take in probiotics for my small intestines?
Any enzymes I should consider for less harsh output?

I guess I have a million questions. I'm bringing an entire color coded notebook on Friday... lol.

embersglow1 said...
So I have some general questions, though I am having my pre-op exam and meeting the Ostomy nurse at the hospital (that I'm having my surgery... 2 hours away. Not one up here, yet. Should I call and schedule to meet her before?! or after?!) on Friday.

As for now,
I have the above question.
Also, how do you get your supplies? Through the pharmacy? I got some samples but is it easy to switch around with insurance/pharmacy and see what you like??
Also, some samples I can't get because I don't know how big my stoma will be.

What are the different parts? I have samples of bags and the adhesive ring that goes around your stoma, but that's it. On youtube, I see videos of like 6 things they have on the counter with them for bag change!

Also; I've been eating and supplementing with a focus on my colon for 364 days now.... so how is it different to supplement for Ostomy? Should I still take in probiotics for my small intestines?
Any enzymes I should consider for less harsh output?

I didn't meet my ostomy nurse until I was in the hospital after my surgery. That worked fine for me, but if you've got the time to meet your local nurse before surgery that might be nice -- especially if establishing yourself as a patient means you could email with questions in the future.

Supplies usually come through a mail order pharmacy like Edgepark or Byram. The WOCN or someone at the hospital will help you set up your account and place your initial order (the hospital will send you home with enough supplies to last you until the first shipment arrives). Generally I placed an order for a month's supply at a time, so I could order different things every month if I wanted to. It is kind of a hassle to switch pharmacies because they have to have your prescriptions (you need prescriptions to get ostomy supplies) and your insurance info on file, but generally all the pharmacies carry all the brands/products.

I wrote a couple of blog posts last year about the different ostomy supply parts, it's not an exhaustive exploration or anything but it reflects the understanding that I had after I had had my ostomy for a while: http://itslikethisuc.blogspot.com/2013/06/farts-and-crafts-part-1.html and http://itslikethisuc.blogspot.com/2013/08/farts-and-crafts-part-2-basics.html. I also have a video of myself doing a change here: https://www.youtube.com/watch?v=26rpN2ECnQE.

I agree with NCOT, probiotics are a waste to take with an ileostomy. I'm not sure what you mean by enzymes for harsh output... Honestly the most important things regarding diet and supplementation once you have your ileo will be to protect yourself from mechanical issues (ie don't get a blockage, ie chew well, stay hydrated, don't eat a tub of popcorn) and to get adequate nutrition. You are most certainly malnourished right now. Soon you will be able to eat fruits and veggies again

You'll order the supplies through a medical supply company (you'll need a script from your doctors to place an order and set up an account). Your home nurse that comes to see you after you leave the hospital should help set you up with a nearby supplier who takes your insurance. I also just checked the big 3's websites and Hollister has a section to help find suppliers that carry their products and accept your insurance. I couldn't find a section like that with coloplast or convatec but truthfully didn't search too long.

(For what it's worth, I use a company called flagship medical that ships around the Philly/New Jersey area. There was another supplier named edge park that I could have ordered from but I honestly don't know if they are a nationwide shipper or what their deal is - just in case you wanted to check out their sites to familiarize yourself with the similar way they're all kind of set up, products, etc.)

Like NCOT I don't use too much for a bag change. I only started using barrier rings with the loop ileo. I used a little but of paste with the end and never had a problem. Other than that I've always used a skin prep/barrier wipe (just make sure the skin is dry before you apply the wafer). And I would second using kitchen paper to clean the skin (I'm assuming it's the same as paper napkins, right?). I've found it works really well and doesn't leave any lint or bits of residue that could interfere with getting a good seal.

The probiotic question is a good one and I think you should bring it up with your GI. Like NCOT said it might be a bit of an overkill with only the small intestine, but I know my GI has talked to me about how overtime j-pouches tend to have flora and bacterial colonizations similar to a colon moreso than a small intestine. Also some doctors will recommend taking VSL#3 as a preliminary measure to prevent pouchitis. Again, that's once the jpouch is connected and being used though. Not entirely sure about just with the ileo. Definitely something to discuss with your doctor.

Other supplements generally - electrolytes and salt. B12 and serotonin can be issues but I believe they're more of a long term concern. Again I'd discuss it with your GI to set up a plan based on your body/bloodwork results.

If it is possible to meet with your local WOCN before surgery, that would probably be good. I met with mine twice before my surgery, and another one at my hospital once before surgery as well.

I get my supplies through Edgepark, which is a mail order medical supply company. I have never had to supply them with a prescription from my surgeon or doctor. When I set up my account I gave them my medical info, surgeon/doctor info and insurance info. They have handled everything very well since then and haven't needed another thing from me.

I didn't get any samples before my surgery, other than a bag that my WOCN gave me to look at when we met. I wouldn't worry about getting much before hand as far as samples go. The hospital will supply you with everything you need to get by for a while after being discharged, and the WOCN will help you set up accounts and start ordering samples.

There are a lot of different supplies/accessories available to manage ostomies, since we all have different needs. The WOCN will likely start basic. In the hospital I had a one piece bag and some paste. The WOCN had me put the paste in a ring around my stoma to help the bag stick better and protect the skin. As I started to experiment with different set ups, and figured out how my stoma would be once it settled down, I changed my supplies to meet my needs and preferences.

I would also say don't worry about probiotics. They aren't so important for the small intestine. I take a gummy multivitamin, and that's all.

I have no doubt you will be more than prepared and will handle this all NO sweat!!

I will agree with everyone on the probiotics topic. At least for those with a permanent ileostomy, your small intstine will normally have a smaller amount of probiotic bacteria. ANy kind of supplemental probiotics destroy my stomach and bloat me to death for days after just one pill. Probiotic and fermented foods like yogurts, kombucha, kimchi, sauerkraut, are fne though as they have a small amount of naturally occuring bacteria, but taking the potent pills just seems like it would lead to over population of the SI.

If you have symptoms of dyspepsia digstive enzymes are always worth a try to see if they help with digestion.

I have a question myself, if you dont use enough salt will you tend to have more liquid output, and will salt help decrease it? Also, has anyone tried those low sodium salts like nu salt or lo salt that have sodium and potassium? I wouldnt use it for lower sodium as I would use extra sea salt, but would be using it for the added potassium (hard enough to get in enough potassium through the diet, let alone the extra that ileostomates need).