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. 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