My Foster Bag Wants to be Adopted
by Sara on Thursday, September 2, 2010 9:36
Yup, its true, my “foster” bag wants a permanent home, it wants to be adopted. It seems like its doing everything it can to make a lovely home on my belly.
Here’s the scoop. The last time I blogged I was getting ready to have the first leak fixed back in February. I went into surgery and my surgeon attempted to fix the leak. I came out and was told we needed to wait 3 months before I could try again.
So I went home and started the wait. Three months later I returned to Duke to have the o so wonderful pouch-o-gram done for the second time only to be told that there is still a leak. On June 8 my surgeon and another surgeon from her team took another adventure into my butt. They stitched, double stitched, stitched again and then glued the dang thing. We were all hopeful that it would hold and let the leak heal.
Well as you can guess, again, it didn’t. On Friday the 27th I returned to Duke and had my favorite test done for the third time. At this point I could tell them how to run the test. You know it’s bad when these people that work at this huge hospital start knowing who you are. So, yes, the test concluded that the leak was still there and, oh you’ll never guess, unchanged.
I went to talk to my surgeon about what step we would be taking next. She told me that she has done everything she can do from going in through my bum. That shes not sure why its not healing and that there really aren’t to many options left. So the 2 options that I have are one put in a drain or wait.
Soooo where does that leave me…..sitting on the couch with a red plastic tube sticking out of my but…..OH WHAT A FUN FREAKING TIME! Oh no to mention still waiting, probably as long as another year, again a great time. About every 4 weeks or so I’ll head back up to Duke to have the tube moved a bit as long as it doesn’t fall out first. Or should I say until I can’t stand it and take it out. The thing is stitched to my skin and the tube is about a foot long. Yeah it pulls on the stitches, and I have to flush out the tube every day, it just keeps getting better and better.
I really feel like there just isn’t enough research being done to help people like us. There has got to be some better options for us. Yeah I know its not one of those serious illnesses you see on the news all the time but this is serious to us. I feel like we’re the little people in the medical world. Well we need attention to. We need help to. There needs to be more freaking help…..Where are you big wig medical people at?
As you can most likely tell I’m angry, frustrated and down right pissed off. I’m not giving up hope and I will continue to fight to get that part of my life back. And eventually the anger will subside and I’ll find a way to accept this situation and deal. Until then, I’m alright with being mad. I think that sometimes its good to be mad. We are all getting dealt “shitty” cards and none of us asked for any of this. I’m not signing any adoption paperwork and sooner or later I will kick him out on his poop bag ass!!!!
I am thankful for my boyfriend and my family, I really couldn’t get through this all without him or them! Mike is by far the best man in the whole world!!!!!
Stay strong and this too shall pass!!!
Johnny says:
September 2nd, 2010 at 5:34 pm
this is bullshit! pisses me off!
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Jenny says:
September 2nd, 2010 at 11:12 pm
omg! u poor thing!! And I thought I had it bad with the pouchitis… I hope everything works out for you! And you’re right, just because this isn’t a terminal disease, doctors and scientists don’t focus on it as much, but we’re still here… suffering, everyday.
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Donna Corman says:
September 3rd, 2010 at 6:19 am
sigh. oh, Sara, this is just an unbelievable bummer. don’t hate me for saying this: I think you should obtain all the surgery notes and take them to another surgeon for a second opinion. i know this is probably a stressful thing to think about, but something just doesn’t sound quite right here to me. please forgive me for butting in, you don’t even know me (except that I live in Jersey and had colectomy with ostomy in June; hoping to move toward reconstruction this fall). SENDING YOU WARM, WARM, WARM WISHES THAT YOU WILL GET YOUR TAKE-DOWN, SOMEHOW!! xoxo
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Sara Reply:
September 3rd, 2010 at 3:46 pm
Donna, I totally see where your coming from on getting a second opinion. Right now I sort of feel like I don’t know where to start. I think that once the dust settles from this last batch of unsettling news and my head clears I’ll be able to focus on this. I am bummed out about all of this and it seems that at the moment all I’m seeing is this bag and the tube sticking outta my but. I will get through. This though, this is just another nasty bump in the road.
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Sara says:
September 3rd, 2010 at 3:48 pm
Me too Johnny!
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Kieran says:
November 4th, 2010 at 7:41 pm
I had the same thing happen to me almost a year ago, I had the drainage tube in place for 6 weeks and because of a mishap when placing the tube they struck my sciatic nerve causing great pain for 6 weeks. One thing I can’t stress enough is not to rush it. I begged and pushed my surgeon to hurry it along and I feel like I am paying for it now. I had the takedown surgery 4 weeks after having the tube removed which was in October of 2009 and am still dealing with the infection I had from the leak. If you have any questions you can email me @ lifeshock60@yahoo.com
Remember we don’t leave marks on life we leave stains!!
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