Gastric leak / fistula and fistula plug procedure failure

Oct 30, 2010

Well, the fistula plug that I had put in last month was a failure. About two and a half weeks after it was put in it started leaking again only it was leaking whenever I drank anything. I was very unhappy and upset, especially given that I was scheduled to have my catheter removed on November 3rd.  I spoke to Dr. Greenbaum about the TPN and said that I didn't want to go back to being NPO again and I didn't want to go back to infusing 1200 mls of TPN every day. I explained to him that bowel rest and TPN has not helped in closing the fistula and that I don't see how being on it all the time would make much difference.  Add to that I'm able to get in over 100 grams of protein in a day. Yes, I have to work at that and sometimes I feel like I'm never going to get the daily goal. Currently I'm infusing 4 days a week, but I'm not losing any weight. In fact I have gained 3 pounds. I know that isn't a lot, but for me 3 leads into 4 leads to 8 leads to OMG what the hell have I done!  If my body knows anything, it knows how to gain and hold onto weight. Dr. Greenbaum agreed that eating soft foods and drinking was probably not going to make much difference and that I do need the additional nutrition so I will remain on TPN until I meet with the gastro surgeon. 

Yup, I'm going to have to have surgery, again.  I'm pretty certain it's going to be open and I am dreading it, but it must be done to finally rid myself of this leak and fistula.  If it does that I will be happy. I feel like I am imprisoned by this chronic condition.  I haven't met with the surgeon to talk about it yet though, but I think that what will happen is that the surgeon will excise out the fistula tract and cut out the hole in my stomach and sew it back together there by allowing new healing. I'm keeping my fingers crossed this will finally take care of things. 

As for eating, well things are getting a bit easier. Last November though February when I was allowed to eat (off and on) I basically threw up everything that I ate. I've pretty much been sticking with soft foods and those mostly have been going well. Occasionally I've been surprisingly able to eat nuts too, but not more than a handful or so. Princess (my stomach) seems to be OK with Prime Rib and beef tenderloin, but not regular steak. Chicken and hamburger are very iffy. Most of the time it makes me feel like I have eaten cement and bricks. Pork is completely out. Pasta mostly doesn't agree with me either. Fish is good and scallops seem to work pretty well for me too. I can eat 2 or 3 of them.  I'm still only eating a couple of bites and I'm done. For the most part I have to graze all day long which is a new concept for me. I find it exhausting sometimes. Most of the time I'm not even hungry so eating seems rather silly for me, but I have to in order to get to 100 grams of protein. Most of that comes from protein drinks. I'd be hard pressed to eat 100 grams of protein from food.  

As for the good in all of this I now wear a size 12 or 14 jeans, a small to medium top. I've been looking for a coat and have been trying on size large which seems to fit pretty well. I used to wear a size 26. I'm 33 pounds from my goal which I'm hoping to get to before June 11.

That's all for now.

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