3 roadblocks to WLS - Pain Management, BED... Ideas Welcome

[flavaofbravery 4]

Hi everyone haven't been here in awhile due to being told for 3 reasons I'm a horrible candidate for weight loss surgeries by one clinic. That really frustrated me as I feel I absolutely need this surgery, and most of my doctors agree.. except the clinic I went to *for* WLS. I was wondering if anyone here or x-posted other places online could help give me any ideas ...

I'm 28 and I feel like I'm dying at my current weight, despite still being fairly young. I'm almost 400 lbs. and 5'6" if I wasn't in a wheelchair since about May 2014. I have about 12 different weight related diseases, some life threatening. I feel this is my last option, and it was just pulled off the table. In a sense I feel like I've been condemned to a slow and painful demise to not be overly dramatic lol but seriously here are some of My Roadblocks...

Stumbling Blocks Are:

1) Pain Management - I have intense pain from obesity and spinal fusion from 18 years ago, when at 10 years old I had severe scoliosis and had to have surgery to save my life. This is why at this weight I'm in a wheelchair and have to get steroid shots/take daily high doses of ibuprofen. I could be on narcotics (so there is a way around it) but those are addictive AND if I go on them at this young an age I have no where else to go from there if the pain becomes unbearable say in my 40s. I'd rather not go on narcotics if possible, but it's a possibility. The clinic I went to though said with my pain management now they don't' want me to have the surgery. They want me up and walking but there is the catch 22 - I wont walk until I can lose the weight. My back doctors stress I need to lose weight quickly if I ever want to walk again.

2) Binge Eating Disorder / BED - why I got here partially, is because I have been diagnosed with an eating disorder. I was actually in treatment for it in an eating disorder clinic when I lost the ability to walk in May 2014. You can't go to an eating disorder clinic around here unless you can walk. I feel this is another catch 22 - if I didn't have the eating disorder I wouldn't have gotten to be morbidly obese - and since I have BED - I can't have the surgery to really fix the morbid obesity. Help? I don't have the time with my back the way it is to go through the years of counseling that just *might* help me deal with my eating disorder, even that is "iffy". I know it takes a lot of work and I'm willing to do this work of course to save my life and mobility - I'm just afraid I don't have the time to do that right now - if I ever want to walk again. I believe I can overcome it to a point - but eventually I don't think I'll stay on the wagon the rest of my life unfortunately and that scares me - I mean 3 years maybe tops I could do, but I don't know about longer than that. I'm a very honest person and I know this would come up in my psych eval. I don't want to lie but I need to take a gamble on this surgery.

and finally 3 is something I can't do anything about:

3) Being Emotionally Disabled - I have several psychiatric disorders due to being abused throughout my childhood and genetics. The clinic also sited this as a reason to not give me the surgery. I understand even the most adjusted person can have a psychiatric reaction, but I'm prepared to do what I have to do, if this happens after the surgery. They say it's too big of a risk. I say dying before your 30 is too, and all WLS is to a point a gamble. That and I feel I'm running out of time with all my obesity related diseases, most being barely controlled.

Although most of my doctors (especially my back doctors) agree the best thing in the world for me would be a WLS, the only doctors who do not are the WLS clinic I went to. I understand WLS is not a cure all by any means, but I'm running out of time and I need answers. I've seen great results from some of my friends through WLS and results that were not so good. Some ended up in hospitals and I've known 2 people who have died from WLS. I personally knew them well. To me though I know this is the only way I might be able to walk again, and not die at a young age of diabetes, or heart disease (both of which I already have, I also have uncontrolled labile high blood pressure with 2 strong high bp medications already...) or several other disorders I have related to obesity.

I have no idea what to do, and like I said, it feels like I'm running out of time to help my mobility, and yes - possibly to stay alive, not to put too fine a point on it... I feel at an impasse - like my last option to live or walk again at least was just yanked away. Should I go to a different clinic for WLS? I know a few that might do the surgery on me anyway - but is that the right thing to do?

Any supportive ideas are welcomed thank you

[della street 213]

Wow, that's a lot to deal with for sure... Yes, I would definitely get a second opinion from a second clinic -- it will at least offer you another point of view for something so serious -- best of luck!

[dmaddox1 15]

You do have lots of roadblocks in front of you...but I would also get a second opinion. A lot of us have roadblocks and I too felt like this was my last resort. I have many health issues and if I don't do something to help me lose my weight I feel the same as you do. I will not last but a few more years.

Go get that second opinion!

[kvlasy 195]

Get a second opinion and a third. Don't settle.

[leanora27801 315]

I have to agree with everyone else, get a second opinion because if you have your other doctors backing the decision for wls then that should help your case. I know how it feels to be over 400lbs pounds and I'm dealing with lupus and chromic asthma too. If push come to shove have your doctors fax your new clinic a referral letter explaining why they agree with you having surgery. I had to do that too!

[flavaofbravery 4]

Thank you, I'm making the right calls on Monday to see if I can actually get this process started again. Some clinics as you probably know are more "picky" than others on who they deem a good candidate for surgery. The one I first went to is known to be very discriminatory yet good. I know of a clinic closer to my home that is less stringent on guidelines and may work with me and my doctors.

I have a counselor now but she doesn't deal with eating disorders- neither does anyone in my rural area. She does do general trauma work, and I'm willing to do the years of work to heal, I just don't have them right now.

I have several barely controlled obesity related life threatening conditions. I can hear my back rods creaking every day and there is nothing any doctor can do for me about that at this weight back surgery is a 100% chance I'll die on the operating table. So I can't walk until I lose the weight.

Also if my back rods break - I could very well die. And I already hear them and feel them...well lets just say not doing so well. Talk about anxiety. I'm praying eventually I can find a solution to this and do what my spine doctors are suggesting (get WLS and get it now). It's such an involved process though. Praying I can get it in time.

[leanora27801 315]

I wish you luck with finding a new clinic and try to stay positive!

[shellyd88 463]

Hi I don't know where your located but perhaps a residential obesity clinic would work for for you google it I've seen shows where they take ppl and give them the surgery and the physical therapy to help them get walking folks heavier than u too I'm sure they also have some sort of psych eval they all do so I'm sure that will be part of it too it may be an option for u best of luck

[orionova 27]

I have no advice to give you that others haven't already. I just wanted to wish you good luck.

[flavaofbravery 4]

Thank you everyone - I did think of inpatient but my insurance doesn't cover it (medicaid/fidelis due to being on SSI due to my back problems + obesity). I've gone to an eating disorder clinic but I had to leave because they don't allow you in them if you are immobile (at least not near here). I feel like if the second and possibly third opinions don't go well I'm not sure what to do. Thank you all though for the well wishes and prayers. I've booked a second info session (starting the process at another WLS clinic) for just after new years day. Hoping this is the answer I've been praying for.

[Ivanova8 77]

Best of luck in your search.

[MisforMimi 760]

@@flavaofbravery,

I just wanted to add (and if its not appropriate, I can accept that) that one) I 100% support everyone who feels/thinks WLS may be for them. No question. And two) I also support you getting a 2nd and 3rd opinion. One thing I just wanted to say is that I would advise you not put the energy out there that being "emotionally disabled" as you say is something that you can't do anything about. This is safe space for ppl to speak about there issues but I just wanted you to know that healing from past emotional traumas is possible, depending on the severity. I'm sure you've been to gobs of therapy, but you've got to let the next bariatric team know that you are capable, ready to go through your trauma to see it to the other side, that you are resilient, that you are believing and actively working toward emotional healing whether you have the surgery or not. I think you may have accidentally presented WLS as your 'solution' and you need to make it very clear to everyone that you will be using this as a 'tool' in conjunction with support groups, therapy, water-based physical therapy until you can move more etc etc I really really hope you can somehow get this surgery. PS, I can tell by your handle that you get what I'm talking about!

[flavaofbravery 4]

Thank you, yes that's exactly what I've been getting at. I hope it's all in the presentation of my extensive trauma history. While everything you wrote is actually true about me, I guess one of my worries would be if I can do the diet for the rest of my life. I'm a very honest person and the honest answer is "I don't know". I do know I could definitely do it for a year or two but after that.... I'm honestly not sure. I do know this is *the* tool I need to walk again, to be healthy enough to live past my 30s, to survive. To that end I'm willing to give it my very best shot and do everything my doctor's tell me to do.

Btw - I've looked into other clinics for emotional health in my area - their response was basically "Why do you want to change? Just request a different counselor in your current mental health clinic..." While I tried to explain they don't have help for eating disorders at my current one, they just said they'd get back to me at the new clinic (not making me a priority because I 'already have help'). I haven't heard back as of yet *sigh* I'm trying my best to get the trauma work and eating disorder work done it just feels like I've hit so many 'roadblocks' ... but I keep trying. I'm also diagnosed with and have under control for the past few years. possible mild schizophrenia, bipolar 1 disorder, panic attacks, and of course the PTSD with BED (binge eating disorder).

Thats what I meant about being emotionally disabled and not being able to do much about that. It's genetic conditions I'm currently dealing with emotionally, and since their on the psychotic spectrum of disorders everyone kind of treats me like a pariah in the WLS world. People fear what they don't understand so I guess I don't really blame them - but that was my experience at my last WLS clinic in Albany. They kind of treated me fine until they heard my diagnoses and they they treated me like a mental defective. I didn't appreciate that as well. We went over each roadblock and my response was verbatim "If I don't get this surgery I very well might die" The head nutritionists response was *nodding* "Yes it's a very good possibility". I mean talk about bedside manner... I mean maybe she just wanted to validate and didn't know what to say but still.... they left me little to no alternative options and it felt like they were passing the buck like most of my doctors, or just didn't know what to do, like the other half of my doctors.

Basically the vibe I got was "you can kill yourself but we don't want your death on our hands" at the first clinic I went to in Albany, which is okay I guess to cover yourself - but they didn't give me much- alternatives, referrals, hope even.. . The next doctor I saw there was nicer, the first nutritionist was so bad I basically came out of the appt. extremely upset. The next nutritionist set up an appt with their eating disorder doctor - I see that eating disorder doctor in Albany NY in January along with the second opinion I just scheduled at Saranac Lake for the beginning of January. So we'll see how this goes... Praying everything goes well.

[MisforMimi 760]

I am glad you are seeing someone that specializes in eating disorders. It will never make sense to me why people who have NO experience with eating disorders get to make decisions about surgery for people who have them. My guess is that even bariatric doctors don't understand them. A lot of us on here have patterns of disordered eating that obviously have not served us....My other question is do you 'believe' your diagnoses are accurate/up-to-date? Sometime whats in the chart is just what's in the chart. Idk just some thoughts....

I too worry about maintaining a 'lifestyle' for myself. I have a long history of ADD which typically acts out as being able to be totally rigid for a long while and then falling off and unable to follow a program....my hope is that with the surgery hormones will be regulated and adjusted which will make continuing easier....I read somewhere that brain function is improved with WLS in an article on this site....

Good luck to you, keep us posted....

[drmeow 323]

I think I read somewhere that some surgeons avoid higher-risk patients like you b/c they want to keep their statistics good, and if they think you may have difficulty sticking to it, it makes them look bad. I have no idea whether that's true in your case but it does seem like there must be some reason since it's pretty clear that surgery is your best chance at improving everything.

If you get a similar reaction from other surgeons, ask them what you can do to make them see things differently. Maybe if you do a strict diet plan like a liquid diet for a certain amount of time and lose a certain amount, they will see you are committed to it.

Please don't give up hope. You are doing the right thing in trying to take charge of your health and I hope things go better at the next clinic for you.