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PostPosted: Wed Jul 17, 2013 3:03 pm 
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I recently returned home after 15 days in the hospital, having had my entire colon removed and an ileostomy (temporary). It's the first of at least three surgeries (including an eventual liver transplant). For months, I had been asking every doctor and member of the surgical team if I'd be OK as a Suboxone patient undergoing such a huge operation. Every single one of them assured me they knew how to manage post-op pain.

That was a load of bull. I woke up after the surgery and had never felt so much pain in my entire life. It was laparoscopic, so that pain didn't last too long, but a complication from my liver caused more pain that lasted another nine or ten days.

First, let me say that I've read this board for a while now, so I DID know that the best way to deal with surgery is to taper to as low a dosage as possible. (I've been on 16 mg daily; 8 in the a.m. and 8 in the afternoon.) However, given my condition prior to surgery (being in a lot of pain and mostly housebound), tapering was the last thing I wanted to do. So after hearing all these reassuring promises from the doctors and people at the hospital, I heard what I wanted to hear and kept at my normal dose, stopping a day before surgery.

The first night post-op, I was OK just lying there, but the nurses were always trying to move me, whether to put me in a new bed or put an X-ray tablet under my back. I don't think I've ever screamed from pain, but I sure as hell did then. None of them understood.

Nobody at the hospital knew about Suboxone. Most had never heard of it, and those who did knew the bare minimum.

And here's the worst part: Because of my liver disease, the surgery caused my liver to "decompress" and I developed ascites, which is when fluid collects in the abdominal cavity. It was causing me immense pain, pushing on all my vital organs and making it near impossible to move. Yet, the doctors kept telling me it was only "gas," and that I just had to "walk it off." They treated me like I was just being a baby, even though I fought through the pain and managed to walk around as much as physically possible. Though the hospital didn't have any Suboxone (duh), I had my own and started taking it on the third day. It really helped me get through all this. Seriously. I continued on a morphine pain pump, which worked a very little bit, sometimes, but for the most part, Suboxone was the only thing that made me feel better.

But by the 11th day, I couldn't even get out of bed, and they were insisting on some useless test to understand "the gas." I refused, and they came back with results of my MRCP, telling me that they saw "a little bit" of fluid. A little bit? They ended up draining 4.5 liters from my belly. Needless to say, I felt a lot better after that, and was able to walk, pee standing up for the first time, change my socks, etc., and for the first time, speak in full sentences without pausing to groan every 10 seconds.

So, next time I plan on tapering beforehand and maybe switching to pain meds if possible before going in. Transplant surgery is a much bigger procedure (open, not laparoscopic). While I hated having to go through what I went through (I was in agony roughly 90 percent of the time over a two-week period), I learned a lot -- about medications, doctors, hospitals and, most important, my own ability to fight through such a painful and bleak situation. I think it made me stronger, in a sense. I'll need that strength because I've got a long road ahead of me.


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PostPosted: Wed Jul 17, 2013 4:30 pm 
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Oh my heck! I'm so sorry that your pain wasn't managed appropriately after surgery! It's especially galling that your complaints of increased pain were ignored when you were developing complications.

You were a real fighter to get through so much pain and live to learn from it. I hope you keep us updated as you go through your liver transplant. The only silver lining is that you learned what you need to do before the open surgery.

Amy

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PostPosted: Thu Jul 18, 2013 4:46 pm 
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Thanks, Amy. I will definitely post after my next surgery (the reversal/take-down of my ileostomy). It should be in a few months, though it's a much simpler procedure, so it shouldn't be as problematic.

I was kind of hoping this would get more replies, as I'm still trying to figure out how to approach my next surgery. Obviously, tapering is step one, but I would like to learn more about how to switch to pain meds just prior to surgery. That's something I need to know about so when I ask my Sub doctor, I don't cave in if (when) he says it's not a good idea.


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 Post subject: Same Here
PostPosted: Thu Jul 18, 2013 5:22 pm 
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What is it with medical professionals not knowing what Suboxone or Buprenorphine is? I had the same problem with two surgeries. The first one was so painful that all I could do is sit still and count the minutes until I could take more Hydrocodone that didn't do anything.

My Sub doctor said no to prescribing me meds a week early to transfer over. Unlike you, I was only on 1 mg and it still made my tolerance sky high. The second surgery went a bit better but even in the hospital I was going through mild withdrawal. I got back on Suboxone two weeks after.

Maybe print out some papers/articles about surgery and Bupe? I know someday I'll have surgery again and need a plan like you. Sorry I couldn't be of more help. We are both in the same boat.

rule

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 Post subject: Re: Same Here
PostPosted: Thu Jul 18, 2013 6:15 pm 
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rule62 wrote:
What is it with medical professionals not knowing what Suboxone or Buprenorphine is? I had the same problem with two surgeries. The first one was so painful that all I could do is sit still and count the minutes until I could take more Hydrocodone that didn't do anything.

My Sub doctor said no to prescribing me meds a week early to transfer over. Unlike you, I was only on 1 mg and it still made my tolerance sky high. The second surgery went a bit better but even in the hospital I was going through mild withdrawal. I got back on Suboxone two weeks after.

Maybe print out some papers/articles about surgery and Bupe? I know someday I'll have surgery again and need a plan like you. Sorry I couldn't be of more help. We are both in the same boat.

rule


Thanks, Rule. Unfortunately, I had printed out a lot of info on bupe, including that one document everyone talks about (forgot the name), as well as some of Dr. Junig's blog posts. I did this in advance, and most of the doctors said they didn't need to read it. They all knew what they were doing. One doctor from the transplant team got offended that I would suggest the possibility of the hospital doctors not knowing how to handle my pain and letting me suffer. I wish I remembered his name so I can give him hell at my next appointment.


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PostPosted: Thu Jul 18, 2013 9:39 pm 
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Make sure you give them ALL hell at your next appointments and bring the literature with you again!

Amy

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Dr. Jeffrey Junig, M.D., Ph.D.

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