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Friday, December 5, 2014

Yesterdays appointment and recap

I t was a long night.  On top of everything else that goes on, I rarely sleep anymore.  However, on this night, I am up all night throwing up.  It's awful.  Despite that, I am feeling pretty confident and strong.  As long as the nausea will subside. 

I have known all night that my bag wasn't going to last.  It made it till morning so I'm going to shower and change it.  I now have a stool in the shower and a chair in the bathroom to help me.  Granted you can't move in the bathroom, but I can go from seat to seat and reserve some energy.  I get the bag changed with minimal exhaustion.  I'm thrilled!  This day is starting off ok.  That bag lasted about 2 hours.  My second bag change didn't go as well.  This time I am covered in gunk as well as my bathroom.   Wiped out, I go lay down. When I wake up about an hour and a half later, I find that this bag is already leaking!  Back to the bathroom I run.  The problem with these bags is that I am peeling off the adhesive to find stomach acid on my skin.  By the way, that is painful.  But on top of that, there is no more skin there.  I am trying to stick these bags to blood.  Adhesive doesn't usually stick to wet.  They gave me a special powder to help it, but it's help quit when my skin turned to solid blood.    Another question for my appointment which is now approaching fast. I tape all the way around this bag to see if I can keep it on through the appointment. 

My ride arrives.  I didn't know it but the postal carrier has laid a couple of boxes on the step.  She brings them in with her and comments on how good the house smells.  I have no clue what she is smelling, but thanks.  Later that night I look at the boxes she brought in.  One is a container of peppermint tea!!  And it is very aromatic!  LOL

I finish getting dressed and we are off.  I am super light headed and wiped out.  We get there early only to be told that my new doctor is running late.  My apt is for 4:15, we go back about 4:40.  I have Heather for a nurse.  If I would have gotten the parrot, I think I would have screamed.  I ask Heather to please "draw" my name every time because I find her helpful.  My blood pressure is surprisingly good, and fully dressed I weigh 152 lbs.  At least it seems that I have quit dropping weight.  Not that I mind, but I want to be healthy.  I ask Heather if she is able to check with the ostomy nurses about the bags leaking and getting more bags. Nancy from ostomy comes in and talks about a ring seal that would act as a barrier to the damaged skin and sweetly shows me how it's done (because NONE of these products ever come with directions).  Dr Fetner comes in.  He says he has read my chart, I give him a quick run down of everything that happened since Sept.  We talk.  For an hour!  He answered questions.  We talk about the vomiting, the constant having to empty the bag and the fact that I am riding the edge of dehydration.  The last doctor gave me 2 pills.  One for nausea and one to thicken the gunk in the bag.  If it thickens, supposedly it stays in my stomach longer and I can absorb more fluids and nutrients from it.  How often do I take the thickener?  Was I aware that I can take up to 12 a day (directions are one every 4 hours).  He ups my dosage to 6 a day to start with.  Pushing it to 9 if I feel I need it.  We talk about scans.  Will they show my internal healing process?  Yes, somewhat.  They will also show any additional problems.  Like the possibility of an infectious pocket of fluid somewhere.  If all looks good, we might be able to get my next surgery done before the end of December.  We talk about b12 shots, but he wants to make sure that the dehydration is under check first.  He looks at the incision.  Takes out the remaining staples and looks into that oozing problem I have with the incision.  He opens up a little section-in my belly button, no less- and packs it.  He is pretty sure there is just a little pocket back there that pushes fluid out when I move.  So lets get rid of the fluid.  I can take the packing material out on Sat.  In the meantime, he ordered a scan.  For the next day. 

I got home and made it about 3 hours before the bag leaked.  I tried one of the ring barriers that the nurses gave me and it seems to be working.  Even my pain level is down.  4 bag changes in one day, I went to bed after that!

Today I have my scan. The tough part is that I can't have food or water after 8:30 this morning. I have to be there at 2:30 to drink the contrast.  Thankfully it doesn't taste and then the scan at 4:30.  The doctor said he would even try to call me before the end of the day to discuss results.  I feel like I am FINALLY moving forward. 

I still think that, back in Sept, if someone would have scanned and looked I might not be having this trouble.  My new doctor was very careful to skirt that whole issue and I didn't push it.  He wasn't involved.  He focused on the "from here on out".  I left there yesterday feeling much better than I have ever felt leaving the clinic.  Usually I leave feeling empty and confused.  I left feeling confident and somewhat educated about my own circumstances. 

I will try to blog more on Sat morning if I hear results.  Have a great weekend!

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