Wow, back into the nightmare!

by Christine on March 3rd, 2015

filed under Christine's Life Updates, Gastric Banding Surgery

I haven’t updated in a long time, and that was originally because everything was going great. And then everything wasn’t going so hot, and, honestly, I guess I just didn’t want to be a downer. Or I didn’t want to really accept what was going on with me. But…now I need to formulate some kind of gameplan. If there are any readers of this blog out there, I could use a little advice or support. Even just a pat on the back saying, “it will all work out” would be appreciated these days.

So….

Way back in March of 2014 (a year ago) I started  experiencing less restriction. So I went back to my physician’s office, and the P.A. there told me I needed a fill (0.25 ccs). I went back a month later with non-existant restriction. The P.A. said I needed another fill and gave me a larger fill (something like 1.5 ccs). Still no restriction. So I went back 2 weeks later and got another fill. Two weeks later, I got another fill. I started getting antsy about this…..I could TELL something was wrong. But when the P.A. asked me if I was experiencing any pain (I was not), they just said I needed another fill. And another fill.

This went on for several month, each time with me telling the P.A. “Something is WRONG. I have like 13 ccs in my band: I shouldn’t be feeling NO restriction!”  I really had to raise a fuss, and finally got an appointment with my bariatric surgeon (after much cock-blocking around the office. I understand–they don’t want to waste the surgeon’s time when it’s something the P.A. could deal with but their lack of taking me seriously was aggravating to say the least.  At any rate, sometime in August, I finally got to see my surgeon.

Mr. Surgeon looked at the notes of months-after-months of fills with no restriction, and my explanation, and he finally scheduled me for some tests. First came the upper GI: you know, the drink where they make you drink the barium “milkshake.”  I did that test, and the technician came out of his little closet and said, “normally you’d be free to head home, but can you wait around for a second?” I said sure. Technician guy called my surgeon’s office, and a few minutes later the bariatric surgeon’s office asked to speak to me on the phone. “There is a BIG problem with your band,” they told me. “We need you to do the other test ASAP.”  When I hung up I asked the technician what was going on. He compared that day’s stomach image with one from when I had my gall bladder out. The band was GONE. It just wasn’t there.

The next day I had my endoscopy, and my bariatric surgeon confirmed that the band had eroded all the way through my stomach. I’m talking: it was INSIDE my stomach. Total erosion. Perforations in my stomach wall like crazy. Infection in my stomach. Crazy stuff. He told me it was imperative that I remove my band ASAP.

I took the weekend to go hiking off in the middle of the Adirondacks — alone — and have a little sad time for losing the band. (I was instructed that if I had any stomach pains AT ALL, then I was to get myself to the hospital ASAP because I could theoretically die or something. Oy!) Then, the first week of September I went in to have the band removed.

My last-hurrah hike up Wright Mountain,  4587 feet elevation

Band removal surgery went pretty much the same way that it went when it got put in. In out, home that day. Sure, my tummy hurt, but at this point I knew what to expect.

The next day I was slow moving around. That’s fine. To be expected.

Me, after initial band-removal surgery

The following day I felt worse instead of better. I was tired and achy. I was hot and feverish. My incisions were hot to the touch. Hubby drove me over to my surgeon’s office, and when the P.A. tried to touch my incisions to take a look, it hurt SO BAD I started shrieking and kicking the wall and damn near passed out from the pain. He told me to get myself to the E.R. at the hospital immediately.

Hubby dragged me off to the E.R. The doctor there called down some surgical technician from upstairs. He came down carrying a bag of knives and medieval torture items. He draped a towel over me and told me to hold on to it, and he cut me open right there. No sedative. No pain killer.  No anesthesia. Just cut me open right then and there. OMG THE SMELL. Seriously. Hubby went green, and nurses down the hall could smell the stink of infection. I was sobbing from having NO ANESTHESIA (did I mention that?!) and trying to hold my shit together.

After I got cut up and slapped back together, they gave me some antibiotics and sent me home. A day or two later, I was feverish and delirious. Temperature of 103 degrees, stinking like a motherfucker. I called my surgeon’s office and they told me to head to the hospital.

So here’s the deal when you have a non-scheduled operation: you get put on a waiting list, and MAYBE they get to you and MAYBE they don’t. In my case, it was three days before they got around to seeing me. In the meantime, I hadn’t had a shower in about 10 days and I was stinking like no tomorrow. My lovely long hair started to rot and mildew to my head in my feverish sweats. At one point they wheeled me out of the room for some X-ray or something, and I had a balls-to-the-walls feverish delirium where my bariatric surgeon did a complete Bollywood routine with a posse of sexy nurses gathered behind him. It was hilarious.

At any rate, three days later, I had a THIRD surgery, which cut out the rest of the remaining infection. At this time I was told that when they originally took the port out, it acted as a suction-cup and sucked all the infection from my stomach into my abdomen area. (Why I wasn’t given antibiotics originally is totally beyond me.)

I had visiting nurses visit me for about 6 weeks after I got home from Surgery #3. Wow, what a fantastic organization the Visiting Nurses are! I adored all of my nurses, and what a relief to not have to drive to a medical facility EVERY DAY to have my wounds cleaned. Slowly, the giant pit they had created in my stomach closed up and healed. No problem–this time.

At this point it was the end of October, and then I got a call that my father wasn’t feeling well. He went in for a series of tests and found out that he had lung cancer. And not just lung cancer….but it had spread and had already spread to his bones. He was given 5 weeks to live.  The next several weeks involved lots of communication with my mom (my parents live out-of-state from me) and coordinating travel and visits with other family members. I got to visit my father the second week of December, and he died a day after I returned home to New York. I then went BACK to their house for funeral-type arrangements and to (try?) to give support to my mom. We were there for another few weeks.

To top it all off, my very best friend in the world met up with me to chat about my father at some point in November, and cussed me out for being the most horrible human being known to mankind. So: I lost my band, my father, and my best friend all in the course of a few short months.

Then there was Christmas, and then there was New Years.

I have to admit, I wasn’t wrapping my head around the loss of my band. Not really. I mean, it was all wrapped up in the loss of my father and my best friend. It seemed like the only one of the three that I could actually process at all was the loss of my friend. At the slightest mention or thought of him, I would burst out crying and was a wreck. The rest just feels numb.

When it comes to the band, I think I was just thinking I could wait it out. Sure, the weight started coming on really fast, but my bariatric surgeon told me to see him in 6 months after I healed, and we would discuss the next steps. In my head, I was holding on to the hope that another surgery could be done. That the weight loss could be dealt with soon; I just needed to get through the next few months.

In the meantime, I was seeing a dietician for food advice. That wasn’t very helpful to me at all, since I think she deals mostly with dietary issues that those who have had gastric bypass need. It was the usual: “eat your proteins and veggies; eat fewer carbs” blah-blah-blah “lean and green” advice that I already knew.

Today I had my six-month follow-up with my surgeon, and to say that I’m disappointed would be an understatement. First: I’ve gained 40 pounds in the last six months since my band was removed.  Secondly: my surgeon pointed out that my insurance by no means would approve of gastric bypass surgery on me. I brought up the option of paying out-of-pocket for it, and he shook his head. He said that HE would not be comfortable doing the surgery on me, either. At least, not at this point. He seemed to hint that maybe after I’ve reached a BMI of 40+ (again) that he MIGHT consider it–but he said that because of my botched/infected surgery in September, that I’m 3x more likely to have complications if I have bypass surgery, and he’s not sure he’s willing to take that risk with me.

So in other words: I’m shit out of luck.

“Good luck to you, and if you reach a BMI of 40+, give me a call and maybe we can have another chat.”

I feel like the rug has been ripped out from under me. All hope is gone. The light at the end of the tunnel has disappeared and I’m closed into this nightmare. I feel all the things I hated about myself prior to weight loss surgery coming back again. It’s horrifying. I don’t know what to do, but I know I DO need to make a gameplan.  And, my current gameplan isn’t working.

I should also point out that I AM seeing a therapist, but unfortunately I am not able to talk to him about food-related issues. He seems to be completely unable to discuss the topic of emotional eating. In a particularly adversarial session with him a few weeks ago, he was saying that if I just went low-carb, that all my weight problems would vanish. I wouldn’t overeat. I wouldn’t be hungry. I wouldn’t stress-eat. Low (or no-) carb is a magic formula that will solve all my weight problems. I told him that (1) I agree that low (or no) carb is the way to go, so he doesn’t need to convince me of that. (2) I’ve been there, done that. And I didn’t lose weight. and (3) Low (or no) carb is not going to solve my emotional eating problems. He disagreed and said that low (or no) carb will just make all my food and eating and self-image problems “magically vanish.” Needless to say, we have agreed to disagree. And I have sought out an Overeaters Anonymous group locally that I would like to try going to sometime.

So I am aware that I need to create (1) a food plan, and (2) an exercise plan, and (3) deal with my emotional eating issues, and (4) continue to work on acceptance of who I am/what I look like, regardless of my weight. I’ve been working actively on the latter issue for YEARS now with no real progress. It probably wouldn’t hurt to try to find a nutritionist that can really help me. I’m not at all opposed to signing up for a personal trainer. But I’m stuck with the feeling of dread because I’ve DONE all of that in the past and nothing worked. I almost feel like the more energy and effort I put into trying to lose weight without magic bariatric surgery, that it continues to reinforce my hatred of my overweight self, so it’s kind of a self-perpetuating downward spiral of negativity.

I also still don’t know what to do about this friend that hurt me so badly in November. And I really haven’t done much with respect to grieving for my father, either. The last few months have been such an overwhelming blow of awfulness, that I don’t think I’ve even begun to process what has happened to me.

So like I said in the beginning: if you have any advice  to offer, or a pat on my head to give, please help.

A picture of me with my dad, a week before he died.

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  • Amy Workman, Cheese & Sunkist

    Hi Christine. I don’t normally follow your blog, but I was directed here from another blogger and friend. Holy crap man. You have been through a lot. I was banded in 2009 as well, and so far…smooth sailing with my band (knock on wood) but it has been several years since I saw my doctor so thanks to you, I called and made an appt and am requesting a barium swallow (which I have never had). As for words of encouragement, this is what I can tell you. I think you are more prepared for weight loss and fitness NOW then you were before the band. You know how amazing it feels to be lighter and healthier. I started at 330 and lost about 170 pounds…and I wonder how and if I would make it without the band when that day comes. I think I can do it. I think you can do it. But I have not been in your shoes….so don’t let me optimism make you want to punch me in the face. I’m really sorry about the loss of your father as well. I think you have made it past the hardest part and are coming out on the other side.

  • De’Ja

    Hugs and many pats on the head to you. I am so sorry that you’ve gone through all of this. I’ll be keeping you in my prayers.

  • Krystal

    My band is also failing me. Placed on 2009 and I lost 100 lbs, Always battled acid reflux with my band the entire time but thought it must be normal side effect. Numerous Fills and Unfills for over six years trying to control my symptoms, After it slipped off last winter and it had to be repositioned, I gained 40 lbs in four months (with the band on and two fills) I told the doctor, you did not place my band in the correct place. He promised he did. I got another fill which then caused me a lot of acid reflux and aspiration issues in the night. So I got a unfilled by 1 cc. Still acid reflux. Another release, Still Acid Reflux, and less restriction. My surgeon starting talking about removing my band! I cannot live without my band, I will gain the rest of my weight back and six months. I know me. I have to have some restriction. I still have high blood pressure and I am still in the obese weight BMI chart. So the doctor started talking other options to me. I am now approved for a conversion to the sleeve at the end of March! Thank God. I think if I had not been approved and I would have kept my band and just lived with the acid reflux for the rest of my life in exchange for the little bit of control it gives me.

  • Sarah G

    Christine I am so sorry for your losses. So much to handle all at once. You are a strong woman you can handle this. Please try to stay positive.

  • Amanda

    Oh, Christine! How awful. I am so sorry for all you’ve gone through – the loss of your band, your dad, your best friend. Thank you for sharing your experience. You’re so brave to put it all out there.

    I was banded in 2010 and had a slip that I just had corrected surgically. Fortunately there wasn’t erosion to the degree that you experienced and no infection. Still, it has been a rough recovery because my stomach wasn’t in great shape so I can relate a bit.

    As I prepared for my surgery, I thought a lot about losing my band, because that was a real option. I would have liked to think that I could have continued doing what I was doing with eating and exercise and not re-gain, but especially after reading your experience, I’m not sure that is how it would have worked out.

    I don’t have any advice for you, except I think you should lose the therapist. I don’t know what the rest of your relationship is like, but he seems really dismissive about your eating issues. Stress-eating is a real thing and no “low-carb” diet is going to eliminate that problem. You may experience fewer cravings if you eat less sugar, but deprivation can also lead to binging behavior so you have to be careful there too.

    I have attended OA before and have found it to be an excellent program in many ways. My biggest issue is that one of the 12 steps is to admit that you’re powerless over food. I made the mental exception that I wasn’t powerless over food, but I was powerless over the compulsion to overeat.

    I also want to remind you that your value is not based on your size. You are a wonderful, intelligent, beautiful human being at any size. Please stop beating yourself up. It does no good and probably makes things worse. Remind yourself that you’ve been through an awful ordeal and you’ve coped. At times you may have used food to help you cope, but there’s no shame in that. You are getting through. You are surviving.

    http://amandakiska.blogspot.com/

  • Millie, Bethlehem PA

    My condolences on the loss of your dad. In life friends will come and go. Real friends stick around thru the harshness and stupid things we all do to each other.
    Did anyone give you an answer as to why and how your band did that? And where you in any sort of pain or discomfort? Noticed any changes other tag. Just having no restriction?
    I truly think you need to drop that therapist and find someone who wants to listen to what you wanna talk about and issues that are concerning you and getting to the root of things Not someone who dismisses you. Ever.
    Thank you for sharing your story. I hope that things turn around for you, that you remember that you are a strong woman and get yourself into a group and surround yourself with people who will encourage and help you and uplift you and tell you when you are being an asshole and then you can take that and change what you need to change and do what you need to do for Yourself and your happiness. Hugs.