Revenge of the ick (also know as FML!)

Newbies aside, as many of you know I have been through the wringer since my surgery in August. The leak from my stomach and subsequent fistula has been steadily draining. Options were talked about, but in the end it was decided that I would just continue doing what I was doing which was basically just keeping it clean, changing the dressings and taking antibiotics. This has pretty much been the routine for 6 months with 2 months early on with a wound vaccum pump. During the month of March the draining ick had decreased and for about two weeks was just spewing a really small/scant amount. I have been through this before and a couple of times it even stopped only to come back with a vengence. The only difference is that I never ran any fever, even low grade.  For the first time in months I started to feel better. I cautiously even crossed my fingers that maybe this demon was finally going to heal.

Well I spoke with Dr. Greenbaum last Friday for my montly check in and gleefully said that the draining had really decreased and that maybe it was done. The next day I noticed that the gauze was soaked. I pulled it off to find more than what had been draining. During the weekend the ick ramped up and I'm now using copius amounts of guaze and changing my soaked dressings several times a day. New symptom. Pain, soreness and fever. The soreness is like someone punched me repeatedly in my upper abdomen. The temperature has been pretty low grade, between 99.5 and 100.6 and has been hanging on for three days. I've been feeling like crap. I am freezing all the time and I go to bed at 8:30 because I feel so tired, achey and miserable.

So I pulled my big girl panties on and reluctently called Dr. Greenbaum, who was in his car on his way home. (Love that he took my call). He said I need to come down to Lourdes hospital and get another upper GI as well as a pelvic an abdominal CT scan. Then depending on what is brewing, and this is where I really got upset because I so don't want to go here, I will have to have a groshong catheter inserted in my chest, go NPO for at least two weeks, and begin TPN (nutritional) infustion. But wait, it gets worse, then maybe an endoscopy and ultimately being transferred to another hospital to have the leak and the channels it has created sealed.

F*ck my life (FML).

So this Friday I will be travelling two hours to Lourdes hospital and will have to drink gastro (gag me) graffin and have the first of two procedures. I feel like **** right now and a bit sorry for myself too. This is not a side of me that I like. I try to look at the bright side of things, but I'm feeling so defeated by my own body.

So the whole going NPO, TPN, cateter (remember I had a blood clot from a PICC line) and additional surgery, is what I was afraid of. I don't get why this damn thing can't just stop and get healed.

FML..

Holy **** you must be going for the crappy recovery award!

I'm really sorry this is going on so long for you. If Dr G has you go through all this, then at least you can finally heal like you should. I'll keep swinging poultry (or acceptable high protein options) for you. Hang in there.

Well, as compared to some (Dina for instance) things haven't been all that bad. I try not to dwell on it or think to much about it. I just deal with whatever is going on one day at a time.

Maddie

 Yeah, sometimes life really does suck... however, something to be thankful for is having Dr G as your Doctor.

It's a lot to go through but maybe this will end all the issues and you can finally heal and be finished with all the problems.  This is my wish for you !

Aw Maddie, I'm so sorry to hear this. I don't know what it feels like to go through this for 6 months, but I did deal with it for a while. My fistula eventually closed on its own and things have been fine since then.

Yours hasn't and it sure doesn't seem like it's going to do so on its own. If I were you, I'd be looking at whatever I needed to do to get it fixed--no matter how daunting it seems. I know very well that having all these procedures done sounds like **** for breakfast, but sometimes you are faced with a choice between something that sucks more and something that sucks less.

Hang in there, lady. There's going to be light at the end of that tunnel eventually.

Yeah, I hear ya Chad. I really really just wanted my body to be a bit more responsive, but it isn't. This is the first time I have ever had anything like this. So yes, the **** sucks, but I guess I'm just going to have to suck it up and get er done to heal and move on. My one big concern is that the doctor doing the gluing has really only done it one other time and it worked. Given my past history of complications it's hard for me to not go there in my mind. Like, what happens if he doesn't glue it closed? Answer, it leaks in the body cavity and I get sepsis. That **** scares me.

You have every right to be scared. I would be. And I'd probably talk to another doctor at this point as well--not because you don't trust the one you have, but just due to the fact that when things are this serious and chronic, you really need a second opinion.

I remember everyone used to tell me that eventually the sucky part would be over and life would go on and be good again. I sure didn't believe it at the time, but eventually it did. It will happen for you too.

Yeah, I know it will happen, but I've been dealing with this fistula and draining thing for 8 months. As for the second opinion, the biggest problem there is that most doctors know nothing about DS and I have to spend hours educating them and even when I do educate them I often get deer in the headlight looks. Tha being said, maybe it is time for me to go to my primary and ask him for a GI doctor referral.

 Maddie, Dr G is working with my PCP (endrocronoligist/internest) as far as explaining this surgery to him and how he should handle my after care.  My thought is, given that Dr G gives 110%, that he would be willing to work with whomever you choose to help in your care.... sparing you the emotional/frustrating *training* of whomever.

Think about it.  I'll bet he'll be more than happy to help out.

Meanwhile, I sending you good and healing thoughts.

Enough is enough already. ♥

Maddie, I've been following your situation and am a newbie, but wanted to finally post and tell you how much I appreciate you sharing this with us.  I really hope that this hospitalization will be the magic fix for you.  And I've never swung critters for anyone before, but I'm going to start for you.  Wishing you a fast and complete recovery.