Impressions from a 6 year gastric bypass post op

Impressions from a 6 year gastric bypass post op

by Chrissie of NJ:

I lived a [fat] childhood like this and it is absolutely horrible and has changed my entire life.

But I believe the answer is in using the same diligence that is now used to tell us how unacceptable we are as fat people, to change society's idea of "thin" being the holy grail. Use that energy to educate society in size acceptance instead of selling us on WLS as the only answer to our "unacceptable" fatness.

WLS is been made popular recently because of the so-called "obesity epidemic". Why not use all that media coverage, etc to go the other direction and teach us to accept people of every size?

I am not anti-WLS. I am a 6+ yr post-op. I am also in that personally "acceptable" range of complications right now. But I also agree that it is barbaric for us to feel that we had to rearrange our insides and accept the possible complications just to be accepted by society. Why wasn't I acceptable before? Why weren't my health problems acceptable before? Why couldn't I be treated, medically, without constantly hearing about how it was my own fault because I was fat. Everything was because I was fat, no matter what was wrong with me....always my fault because I was fat. Was being constantly emotionally beaten up because of my size the way to make me thin? I was finally scared to death that my "comorbidities" aka morbid obesity would kill me, and fairly soon too. Was this true? I really doubt it. But I was scared and so for "health reasons" I had WLS. By the way.....since none of us had more than 5 yrs to live as fat people......why are any fat people still alive? I've had my surgery over 5 yrs now, and I still see fat people walking around who should be dead by now according to the 5 yr rule.

Why don't we allow fat people to exercise in a place that will accept them as they are, and give them exercises that they "can" do, and the positive reinforcement that they need instead of trying to guilt them into not eating. Fat people aren't accepted by the exercise community either. That's why we stay inside and do nothing and get worse physically.

What do we do when years post-op, we've gained back most of the weight we lost, and have those comorbidities again, but now in addition to the comorbidities, we now have osteoporosis and vitamin deficiencies, etc, etc., in addition?

I admit that I am scared about the future, and so should everyone else be who has had WLS. I keep telling myself I have had 6 good years so far. But when and if they aren't good years anymore, will the rest of my life be worth the price I may have to pay for these good years? I have a niece who had this surgery at 18 yrs old, and I worry about her a LOT, because she may have a whole lifetime to deal with the consequences of this decision. I sure do hope it was the right one, but none of us knows that for sure. She is 4 months pregnant right now, and I can already see her looking frail from all the nutrition the baby is pulling from her. She is just beginning her adult life. How will it be for her if she has to live with osteoporosis from her 30s to the end of her life. They say that an old person who breaks a hip because of osteoporosis usually doesn't live a long time after that. Will it be the same for a 35 or 40 yr old who gets osteoporosis after WLS? And if the 100s of thousands of people now having WLS do end up sickly in 10 yrs or so, what will society do about that? How will the health system deal with it? Will we be out on our own-without healthcare because we "knew what we were getting into". It is already next to impossible for a person with WLS complications to get proper treatment or a reversal. Those same doctors who take your money to rearrange your insides don't want anything to do with you if you are having problems.

I am part of many online and local support groups, and the only cheerleaders I see or hear from are those who are only a relatively short number of years post-op. The farther out post-ops first start talking about weight gain or other problems, then they just disappear. Where are they? How are they doing? The medical field would like us to believe that WLS made them so healthy that they are enjoying life so much that they just don't have time to communicate with new post-ops anymore.......they are "getting on with life". Well from those I have heard from, this is not the case. They disappear because they feel like "failures" because of weight gain or complications, etc. When these things start to happen, they go back to their surgeons who tell them it's their own fault, so they just disappear and give up........a failure, yet again.

For severely super morbidly obese individuals this surgery "may" be a god-send. But for others, after a number of years, it is only a switch of one set of problems for another. At the very least, the majority gain a lot of their weight back, if not all. And, in the end, they are even more unable to cope with the unfairness of life than they were as fat children.

Until society changes the way it treats fat people, none of this will change....surgeons will still slice up the insides of fat people to make money, and we will still line up to let them.

On personal stories:

Personal stories....

Ok. Here are some. For the majority, it's weight gain...lots of weight gain. It is the rare person who doesn't experience weight gain after a number of years.

Then , I know many who are in need of iron infusions on a regular basis. (very hard to find a doctor to prescribe these too.) Peripheral neuropathy, numbness in hands and feet to the point of serious nerve damage is another biggy. I know many who are experiencing hypoglycemia. My sister and niece are experiencing this. In my niece's case, she will get lightheaded and even see black spots in front of her and feel like she is going to pass out. We have given her glucose tablets to carry. But even that isn't working all that greatly. I have read many many post-ops experiencing very low blood sugars, even to the point of actually passing out. One lady in our local group goes down into the 30-40 blood sugars. One lady has to have her husband wake her up at night on occasions because she isn't asleep, she is passed out from low blood sugar, and he has to get something into her so she doesn't go into a coma.

I know one lady who's daughter died after WLS from Wernke's Encephalopathy, malnutrition, and vitamin B-1 thiamin deficiency that wasn't diagnosed by the doctors until her autopsy. She was paralyzed and still they didn't know what was wrong with her. She left a little child behind. I know people who have lost teeth from calcium deficiency and/or from frequent vomiting. Wound infections and being on wound vacs after WLS and/or plastics is quite common. I've known people personally who have had to deal with this for many months. Hernia repairs---loads of people. Gallbladders out within a year after WLS-lots of people. One in particular had a mesh hernia repair, then had super infections in and around the mesh, which eventually had to be removed (a very very difficult surgery). She was on a picc line for over a year. I know people who are immensely depressed because of weight gain. I've known people on tube feedings for months and months because of leaks after surgery, and those who are on them again later because of malnutrition and too much weight loss. I know people personally who are experiencing vitamin deficiencies regardless of the vitamins they take. I myself am Vit D deficient, iron deficient, zinc deficient. I have very very poor memory now. I have hypothyroidism. Many of the vitamins and the thyroid meds don't absorb well because they are fat soluble, so that becomes a problem. Memory loss.....we can't absorb fats properly after WLS, but our brains need fats to function...so think about it. We lose all this fat quickly(including from our brains) and can't absorb more, so our brain is effected...memory loss plus who knows what else. What will this do in the long run of not being able to absorb fats?...maybe future Alzheimers or dementia? Another fat solubility problem...we need omega 3s for good heart health, and for getting rid of bad cholesteral that causes arteriosclerosis. We can't absorb the needed fats, so what happens? I don't know anyone who has been diagnosed with WLS related heart problems yet, but who knows. Maybe no one is actually attributing it to the WLS malabsorption yet, that's all.

I know a lady personally who just came to me a few days ago and said "I'm sorry I didn't listen. I should never have had the lap band. (She was not 100 lbs overweight even. And we had dissuaded her from the surgery because of her size, but toward the lap band if she was going to do it anyway.) Anyway, she went ahead and now can't keep anything down and her surgeon, according to her, won't do anything about it.

I could go on. But I do know these people. I knew Ray, who died right after surgery. (OK, he was a "special" case. But he did die anyway. He was a great guy, and now he is gone.) My own DEXAs show significant bone loss in the past 6 yrs, even though I take megadoses of Calcium Citrate, magnesium and D. Now I find out I am deficient in Vitamin D also. You know what? I fought for 5 1/2 yrs to get the lab to even do this test properly on a consistent bases. Same for Vit A and Zinc. Most times my labs come back that the samples weren't processed properly and therefore the test was not done. When I finally did get the Vit D and Zinc tests done properly, they were deficient. Well, Vit D was in "normal" range, but the labs haven't changed the "normal" range to what they actually should be, so although it looked "normal", it was really deficient by current standards. In looking back over my labs, all the ones that had been done accurately over the last 6+yrs were deficient, but my PCP didn't know it because the lab range said they were "normal". So, though diligent with my vits, I am closer to osteoporosis. This would not have happened if I had not had WLS because I would be absorbing vits from food. Therefore, a complication from WLS. Thyroid tests are the same...the "normal" range shown on lab tests has not been updated to current standards, so PCPs don't do anything about what is actually hypothyroidism. This, in itself, can cause weight gain, among other things.

Arthritis is another one that many people are experiencing, but can't figure out how it is effected by WLS. One reason is that we need those fats that we malabsorb now. Non-WLSers with arthritis are put on Omega 3s. We can take them too, but they won't necessarily be absorbed, so this is another possible long-term complication that isn't documented throughly yet. We still suffer with it though.

Diarrhea and/or constipation...can go either way. Many people have severe constipation after WLS. They take stool softeners, fiber stuff, etc and still suffer with this. I have a friend in this category. Slow intestinal motility is what they tell her. She didn't have this problem pre-WLS though. For others, it's diarrhea, to the point of not being able to go out because they don't know when it's going to hit and don't want to be in public when it does. I experience this one myself at times. It comes and goes. Severe gas....boy LOTS and LOTS of post-op WLSers experience this one.... stinky, painful, severe gas! Lactose intolerance....gosh, I know several just in my local group that got this after WLS. I'm one of them. Just a little milk or ice cream and wham, horrible intestinal cramps and diarrhea. Go to bed with the cramping, and keep getting up every so often with the diarrhea. All night long. For some even a little bit of milk in products can do the same thing, so they don't know they've had milk when this happens.

These are some of the problems I either experience personally or know people who do. And, as I said, I still consider any complications I have to be within my "acceptable" range....so far. Acceptable for me, that is. Not necessary acceptable for others.

One of the biggest problems is that doctors don't know how to treat us. They don't understand WLS properly. And they certainly don't understand our digestive system. And that goes for bariatric surgeons as well. So we have problems because of our altered digestive systems, no one knows how to diagnose them, and we get sicker while still being told our labs are "fine". Down the road someone, somewhere...maybe the insurance companies...are going to wake up and say...hold it...no more weight loss surgery....these people are having problems that no one anticipated. Who thought 5 or 6 years ago that "we" would bring Beri-Beri back to the US. But Beri-Beri (Thiamine deficiency) is showing up in WLS post-ops. Kidney stones, yep, I know people who have kidney stones years after WLS also, and yes, it is from the malabsorption part of the WLS again. Protein deficiency causes our bodies to feed on itself. When our body needs protein to function, if it isn't available, it will pull it from our muscles. Our internal organs, including our heart, are muscles too, and will suffer the consequences when we don't get enough protein. With restriction and/or malabsorption, or any kind of extreme weight loss, we don't get enough protein. Even the restriction of the lapband can cause the body to feed on internal organs and cause health problems.

I know, the question will be what kind of WLS did these people have. For the most part...the RNY. All different variations of the RNY. All different lengths of the RNY. Some transected, some not. Most, though definately not all, of the people I know personally are 7 yrs or less post-op, so I'm not talking (for the most part) about older types of surgeries (JIB, VBG). And I don't know a lot of people with the DS or BPD either, though those people would be considered distal, I believe, and still have the same malabsorption problems. Lap banders are just starting to show up with some problems, though this is not a big issue yet. Since lap banders don't have the malabsorption like the RNY, DS, BPD, they may not experience most of the severe problems. Only time will tell. Malnutrition causes problems, whether from surgical malabsorption, surgical restriction, will-power weight loss, sickness, or whatever.

Anyone who has read this far...wow! You hung in there. Take a deep breath now and rest.

Chrissie

Chrissie is facilitator/moderator of the OSSG-gone_wrong yahoo support community - everyone can lurk:

http://groups.yahoo.com/group/ossg-gone_wrong