Hello all! I am sorry that this is going to come off very much as a rant, but I am very frustrated- and don't know where else to turn! It seems like there is quite a bit of useful information on this site, but with so many posts to go through, I thought this may be a more direct approach.

Here is my basic story- Up until May of this year I was a fairly healthy female. Aside from going to the bathroom frequently, I was active, eating well, and feeling well, and planning an upcoming wedding in June to my wonderful fiance. After a few months of not being able to rule out my BM issues to anything else, my PCP suggested I have a scope done. At this point, my GI doctor noticed thousands of polyps and hinted that he thought I had FAP. What?! I had never even heard of this disease, let alone did I have any family history of this disease or colon cancer. Never the less, the next steps were taken. I saw a medical oncologist, who thankfully informed me that, while it was a rare disease, I wasn't quite as odd as I felt. He actually informed me that June was "FAP season" for him and his staff. From there, my surgery was scheduled for June 28th, two weeks after my wedding. Luckily that gave us time to have our wedding, and have my husband home from Afghanistan to support me through this trial.

Surgery day came and went- I spent a few days extra in the hospital than expected, but all in all everyone was happy with the turnout and the surgeon said the outcome looked good. However, this quickly came to a halt. Just a day before my discharge, we found out the cancer had spread into 16 lymph nodes around the area. Luckily it had not spread to any other organs, however, this still made me a candidate for chemotherapy within 6 weeks of surgery.

So onto the next most FRUSTRATING issue of this situation. While in the hospital, we received NO support what so ever as far as how to change the bag/wafer/appliance. We were showed one time, how a nurse did the changing, but no one ever walked us through the steps of us actually doing the process ourselves. To make matters worse, we were sent home with home health nurses for a few weeks, that also had no interest in teaching us the correct way to go about this process. Which leaves my mother and I, trying to navigate this situation on our own. In addition to this, we were also trying to learn how to order additional supplies as the samples we were sent home with were quickly depleting- and also found no such assistance there!

The next step in our journey included relocating to Annapolis, MD, where I would undergo chemo treatments for 6 months. Finally, we would be in a more developed area to receive more training!! Or so we thought. We have seen an ostomy nurse one time, who did nothing but change the bag once. Did not show/teach us anything. We have reached out to groups on the internet that claim to come by your house and help you learn how to properly care for your ileostomy. You name it, we've tried it. We have even tried locating services that we can pay for just to learn how to properly care for my body. But to no avail, no assistance, and half the time, no answer. Frowner Does anybody have ANY suggestions at all? I am at a loss here, and I hate to be a pain in the ass, but it is at a crucial point now. My skin is now beginning to break down, and I don't even know the simplest thing such as do you apply skin barrier over top the ostomy powder to avoid further irritation? Any resources would be appreciated!
I would just like to gain some independence with this issue so my mother will be able to return to her normal life, and my husband and I can finally get this under control and move forward with our lives.

Thank you SO much
Original Post
This is totally insane what has happened to you. And the longer you are without a good functioning appliance system, the worse your skin gets, and then things just become more complicated.

So Here's a few ideas I can think of: try to call the hospital where you were in and ask to speak to an ostomy nurse. Also try calling your surgeons office and see if they have an ostomy nurse on staff. Also do you have a GI doctor? If so, call them, some of them have ostomy nurses on staff. See if there is a UOAA group in your area. If so call them and see if they can refer you to somebody. Also call the home health organization that you were sent home with and see if they actually have an ostomy nurse on staff. In my case.. with my first ostomy ... they sent me a home health nurse that knew absolutely nothing about an ostomy because the only ostomy nurse they had was "busy."
Another last idea I have is call someplace like the cleveland clinic (go to the colorectal surgery department extensions) (they have a large staff of ostomy nurses) and see if they can refer you to someone local. I think there is some organization that certifies these nurses - they are called ET or WOCN nurses. See if you can find that.
Oh... last thing contact some of the major suppliers - coloplast, hollister.. And speak to them. They generally have nurses on staff and they will send you sample supplies.
good luck.
So sorry to hear of your troubles. If I hadn't just had my takedown, I would FaceTime you (or Skype)and show you my routine. Do you have an end ileostomy, or a loop? I suggest you post to the ostomy and skin forum. It's a great group of people, some who opted for permanent ostomies, but others who are awaiting takedown. I also agree with liz. Contact Convatec, Hollister, etc. They will help you order what you need, and also give free samples. Both have catalog's online as well, just to give you an idea (and possibly find one that you had been given that you feel was working well for you).

It is truly unfortunate that you do not have a good ET (ostomy/wound) nurse at your disposal. It makes me feel so fortunate to have had the great care that I received. Nobody should have to leave the hospital and not know how to care for their ostomy, but it sounds as if you have a good support system at home.

Best of luck,

Colleen
Sorry to hear! I would look up "My doctor knows me best from behind" on Facebook. The lady that runs that page, I think her name is Cherise, has an ostomy and does tons of videos and I believe she is also an ostomy nurse but not 100% on that. might be rumor I heard. I looked her up when I was going to get a jpouch with a temp ileo.

June is FAP month? That is crazy anyone would even say that. Also it is a rare disease, but 30% of us get it with no family history. It comes from the father's mutation of the APC gene. It is a crap disease. I now have severe dysplasia in another part of my GI tract since the polyps got pissed my colon was gone.

There is a good site called Meet an Ostomate.com and it isn't a dating site even though some might use it to meet other ostomates but it has a good amount of people you can connect to on forums and you can search by location. They might have people on there willing to meet you and help you out. It is pretty active site and I have had great support on there offered if I needed it in person. Google Ostomy support groups in your area as well. Learn a lot from in person groups. A Cancer center in your area should have some information on this I would think. That sucks your after care sucks. Some people just shouldn't be in the medical field. I fire people all the time!

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