Impending Ostomy

3-4 weeks post op you will be used to it all. You will feel like yourself.

I am currently 2 weeks post op and am functioning in my home again, can imagine in a week having no problem functioning outside the house fully. Including work. Unless of course you do physical labor, might take longer then.


The hardest thing might be the supplies for you.. My INS company pays about $850 per month for my supplies, I can't imagine paying this out of pocket. Maybe someone else has advice for you on this front.. Best of luck...

Why won't your insurance pay for it?
There are organizations that can help you get supplies, but i don't know how that works.
Anyway as for the other stuff, you will be able to do anything you want to. My son is 7 and I spend time with him now that ii couldn't before. We just came in off the boat. We've been on cruises, to Disney lots of things. And we can do the small stuff too, a quick trip to the store, swimming in the pool. I don't work, by choice, but I spend a lot of time at my sons school volunteering, I could have never done that before.
Good luck!

Welcome, hrcamacho. Everything's going to be just fine!

To answer some of your questions:

Will I be able to work? Yes! You will be healthy, so you will be able to work and still have energy to do things after work, like exercise, grocery shop, cook dinner, play with the kids, etc.

Take care of my 6 and 10 yr old children? Yes!

Have normal relations with my husband? Yes!

How will I feel of myself? That's up to you. I feel great now, because I'm not sick anymore. I didn't feel "sexy" when I was sick, but I do now.

Are there other options for me other than a complete and total and FOREVER ileostomy? You might be able to have a j-pouch. You can ask your surgeon if you're a candidate. I had Crohn's in the large intestine and rectum and was not a candidate, so I have a permanent ileostomy and I love it!

When it comes to supplies, you can purchase brand new items at a discounted price on eBay, so it might cost you around $20/week ($5 per wafer and $5 per pouch), so that's if you change your wafer and pouch twice a week. I only change mine once a week, so you shouldn't have to worry about the cost. Plus, the companies (Coloplast, Convatec and Hollister) will mail you free supplies to try them out. Also, if you look online, there are organizations that offer free supplies to people who don't have insurance and can't afford them.

Wishing you all the best with your surgery on Friday!

Cecilia

Thank you everyone! My ultimate goal is to not feel like crap all the time! To be able to enjoy my kids, and live a long healthy life. I've never known what it felt like to feel "good"....this will take some time to get used to. lol.

Some insurance companies categorize our supplies as "durable goods" like wheelchairs and crutches. They are not in the category of medicines. So they come out of our deductibles or "out of pocket" expenses. I've spent all the thousands of out-of-pocket for this year already, so I don't have to pay for mine, but I will next year when it starts over again. You might ask if this is the case with your insurance.

I think I might get by on a couple hundred a month if I washed things and didn't have trouble with barriers leaking, which I am now. These things are expensive! a box of 10 bags from one supply house is $23.95 I'd need at least twice that, sometimes more. Then there's $11 for the pack of 10 barriers. Some people last a few days on one. And $10 for a box of skin wipes, and you'll need adhesive remover, and a lot of other stuff.

The best way to not waste money is to call the companies and get some samples of the different types of products. When your stoma changes, call them again. They have lots of great suggestions. One thing I found is their websites are not up to date, so you have to call for the latest products. You can't just count on shopping online.

Take everything the hospital has in the way of supplies, and it probably still won't get you through the first week. I was luck enough to have a home nurse the next day after I came home, and she ordered a few things I needed. I knew absolutely nothing because I wasn't expecting to need my ostomy. So you're doing a great job of getting informed before you get into this.

about hospital expenses: Sometimes you can bargain. Ask if you can pay only what an insurance company would pay if you pay the bill off right away. Then go borrow the money elsewhere. Sometimes you can save 60%.

Get a complete copy of your bill. I got one that listed meds that I take at home but didn't take in the hospital.

I use the Coloplast Assura Extended Wear Wafer with built-in skin barrier (item #2833) and cloth covered pouch (#13896) with a little bit of Stomahesive paste around the hole on dry skin with no powder. I shower every morning, exercise several times a week, swim in the pool, don't cover it or wear tape, and the wafer lasts a week. I've been using this same product since Day One (for 6 years) and have never had a leak *knock on wood* If you're allergic to adhesive or latex, there are products for people with allergies.

Hope that helps!
Cecilia

To your last question, you can shower with or without. It can get wet and is easy to dry when you are out of the shower. Some people use a blow dryer, I never did.
I am in Europe so I can say nothing about insurance issues. But I think that at this moment you are worrying about the entire kit n' caboodle, when you need to take things one "bite" at a time. You need to wait and see which system works better for you. The powders and all that; wait and see if and what you will need. Every case is different. I had my jpouch reversal in March and still have supplies. I planned on sending them to an organisation that distributes in countries where there is no insurance but haven't gottten around to it. If you are really in trouble for supplies I have no problem sending you what i have. But for now, wait and see what you can work out. Getting all the samples from the companies now is a great idea. You won't know until later if you need a one-piece or two. Other people on the forum with a one-piece change the bag every 4 or 5 days. I am lucky because my insurnace paid for one a day.
I have to echo what others have written about being a woman. Sexuality continues in the relationship you are in. Surgery means recovery time, with your energy coming back from day to day.
As far as a slimmer system goes, the flat ones are slim. You may need a convex which is also slim but about a half centi,eter or so thicker at the wafer. But do not worry about that now! Most people do not have allergies, a few do, so it is not an issue for you until it happens.
If you google around you will find stoma panties and wraps for swimming. I ordered underwear from a German company, they were pretty, sexy and of good quality (not so cheap though) and she also sold a kind of lace wrap-belt with a pocket for a mini bag. In any case; there are products for stomas. Other people on the forum can tell you how they organized themselves for swimming.
All that said, I can only encourage you and say that you are going to feel so much better, have all your energy back, and live your life more fully.

Post Edited (B'Dereh) : 8/18/2012 3:47:10 PM (GMT-6)

Thank you so much to everyone for your input, ideas, and mostly calming affect. I know through God's grace, I will be alright. Everything will be alright. I'll keep everyone updated.

Since your surgery is coming up, here are some things to bring to the hospital: robe, slippers, eye mask, ear plugs, laptop and cell phone with chargers, magazines, Gas-X, lip moisturizer, toiletries, hard candies to suck on (since you won't be able to eat anything until you get activity in the pouch), and a bottle of hydrogen peroxide (it's an ostomy deodorizer). Put a capful in the pouch, and there will be no odor!

I would ask your surgeon if you could have a pain pump, where you press the button to administer pain medicine. That will keep you comfortable, so you don't have to wait for a nurse to bring you pain medicine. Been there, done that, nurse was on a smoke break, took 45 minutes to get pain relief, no fun! :(

It's also very important to walk, walk, walk as much as you can after surgery to help wake up your small intestine. It will also help speed up your recovery.

I'm sure others will chime in with more advice, but that's what comes to mind right now.

I'll be praying that everything goes perfectly on Friday!

Cecilia

I'm so glad you found us, too! God has gotten you through this far, and He won't let you down now. I'm reminded of Jeremiah 29:11... "For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."

You have gotten some good input up there.  This place is wonderful for finding folks who have gone before and truly know what-is-what in this journey.   I have learned more here than from any medical professional involved.

I am another one who is completely happy with my choice to have a permanent ileostomy.   My life with my colon was being robbed from me, so I reclaimed my life and have never once looked back.   I stole a phrase that I saw on the board, "my colon rejected me, so I am rejecting my colon" and it perfectly fits my thoughts.   There is nothing I cannot do in my "new & improved" life and you will soon be saying the same thing.

You sound as though you have a deep faith and that will definately help get you through.  After my first pre-op visit with my surgeon, I was a little discouraged.  I had made up my mind that I wanted surgery, but my surgeon did what he had to do in telling me of a couple of complications I could encounter due to my particular set of circumstances [none of which happened, BTW ]

So, I came home from the visit kinda down, and prayed long and hard before going to sleep that night.   I woke up the very next morning with the weight of the world off of my shoulders and a deep peace about surgery.  I felt that God was telling me that I was to go ahead with surgery and He would take care of the outcome, which He did.

I am really hoping you find that your supplies will be covered under a different part of your plan, with your deductible.    I have found some supplemental products on Ebay for cheap, but have not needed to purchase wafers or pouches as I stockpiled after my surgery, when my deductible had really, really, really been met.   Best Buy Ostomy, Ostostore and Medical Mega might work for lower prices.

Oh my, all the samples--go for them !!!   I have gotten so many samples from all the major companies.  Coloplast, Convatec [my fave], Hollister, Cymed, Marlen & Dansac all sent me all kinds of stuff.  Powder, paste, Eakin & Adapt & Coloplast seals, a belt, canvas carrying kits with scissors & mirrors [Convatec & Hollister], all for calling and asking.   I did this prior to surgery as I had never even seen an ostomy appliance before and wanted to familiarize myself with the products.  They were so generous, as they want your business.  I asked for any products that they thought I might be needing on a regular basis.

Good luck with the surgery and you will be in my prayers

Hi. I had an ileostomy and total coloproctatectomy 5/15/12. I was found after 40 years of UC to have cancer, so instead of taking chances, I had the surgery. I didn't want my daughters to be w/o a mom and I have plenty of living to do. I took 12 weeks leave from work. I was scared at first postop but managed in those 3 months to go to 2 weddings, Fire Island, the beach, my pool, shopping, threw a bridal shower, went to NYC twice and even to a concert. So that taught me that, yes, I could do anything. The adjustment is there honestly but I would not trade this life for anything. I'd go for it.

Michelle