Crohn’s disease? Congrats on losing weight during a flare. . . .

Rachel writes:
(I really appreciate your blog! I am not very overweight, but I still get judgment for it all the time, so I can only imagine what reality is like for other people. Ugh.)

I’m a 21-year-old woman and have somewhat struggled with my weight since hitting puberty (I was a 14/16 US in ninth grade). I’m not obese, but I’m tall and big-boned with slightly odd body proportions, making my current 10/12 size look bigger than it really is, though I’m really only a few pounds over my max healthy weight.

Anyway, I was diagnosed in the summer of 2012 with Crohn’s disease, a serious digestive disease that affects the way my body digests food and absorbs nutrients. Many patients lose massive amounts of weight because they literally cannot digest food. The way I cope with the debilitating pain and diarrhea is by overeating between flares – my body’s way of trying to make up for malnutrition while I can handle eating solid food. In other words, I look healthier than I really am.

After my diagnosis, I had a major flare that lasted the second half of the fall of 2012, and I was very sick.

However, when I went to see my gastroenterologist in December 2012 for a follow-up appointment, the intake nurse (his medical assistant) took my weight and then CONGRATULATED me for losing 10 pounds!

She is a specialist in gastrointestinal diseases! She of all people should know that such rapid weight loss in a Crohn’s patient is a sign of serious complications!

I still struggle with guilt because I have Crohn’s disease and yet am still overweight.

(PS: She was not exactly thin herself, either!)

Gastric bypass for sleep trouble

Anon. writes:
I was feeling unusually tired and out of energy. My GP told me to diet and exercise, and take iron supplements. I tried this for months, but it wasn’t making much difference. I talked about it with my mom, and she told me she has sleep apnoea. She asked if I had considered this. I am a snorer and being overweight can make sleep apnoea more likely, so I thought this might be the problem. So I finally went back to my GP and got a referral to a sleep clinic.

After an assessment, I got to do a sleep study where I’m monitored throughout the night to see if I stop breathing. I talked to the doctor in the morning after the sleep study. It turns out I didn’t stop breathing in the night so they could rule out sleep apnoea, but he said he thought my weight could still be keeping my energy down.

So I asked him “If it’s not sleep apnoea, then how could my weight be affecting my energy the past few months when I’ve been this size most of my life?” He said he didn’t know, but people who lose weight usually “just feel better.” I told him that I have been making an effort; I had been restricting my calories to lose one pound a week and lost 10 pounds. He said that little amount of weight loss was unlikely to make much of a difference, and often after diets people just “balloon back”. He asked if I would like to be referred for a gastric bypass. I was shocked, and told him I thought that was a serious decision and it’s not one I would take so lightly.

At the time of the sleep study, I had a BMI of 36. I’ve lost another 10 pounds I’ve lost since then, and I have moved me from the “morbidly obese” BMI category to the “obese” category. It’s a challenge, but I’m still losing slowly and healthily. No gastric bypass required, thank you very much. Oh and it turns out the tiredness was due to seasonal affective disorder. I’ve got a sunlamp and vitamin D supplements and have since been feeling much better.

Reactive major depressive episode? Have a weight loss drug!

Anon. writes:
I was suffering a second episode of depression after some personal issues had arisen. I had finally decided I wanted to do something about it and booked an appointment with my NHS GP to get a referral to therapy.

As usual the surgery was running late and was rushed. When I finally got called in, I told the GP that I had been feeling really low again. She interrupted me, saying she noticed I was overweight (oh, really? how insightful) and that could affect mood. She asked if I had considered losing weight? Of course I’ve considered it, and I’ve tried, but I’ve been fat my whole life (and not depressed my whole life). Being depressed I really didn’t have the energy to do much about it right now. I told her this, and she asked if I had tried a weight loss drug, Alli. I told her no, that’s one thing I hadn’t tried and asked how it worked. She told me it stops me from absorbing fat (but neglected to tell me that it makes you poop/leak orange oil and basically deters you from eating). She wrote the prescription, and then acted as if problem solved, appointment over.

Fortunately I did press the issue of therapy, so we returned to the actual issue of depression. By this point we were nearing the end of the allocated time for the appointment so she was rushing. She gave me a self-referral number, and asked me “you haven’t thought of jumping off a bridge or anything, have you?” – what a sensitive way to ask a patient if they might be suicidal. When I told her no, she said “good good”, thrust the Alli prescription in my hand, and sent me out the door.

Blood pressure high all of a sudden? Lose weight and take this medication. . . .

SS writes:
I have been overweight since puberty. Right around age 16 my body settled into a size that has stayed pretty consistent over the years, give or take a few pounds. I can’t remember a time since that I’ve been to a doctor without my weight being mentioned, whether or not it was relevant to the visit. Reading the stories here has been both horrifying, because so many of you have had it so much worse than me, and reassuring, because at least I know I’m not alone in this struggle.

I have had a few bad experiences with doctors, but one in particular has stuck with me. About two years ago, at age 26, 5’4″ and about 220 lbs, I had my first ever high blood pressure reading. I was at the obgyn to get a new birth control prescription, and was told that I couldn’t go on the pill until I figured out what was going on. Obviously, this was a disruption in my plans, and I had always had good blood pressure, so I had no idea why it had suddenly become a problem.

I immediately followed up with a new general practitioner. The appointment was terrible from the start. My new doctor took one look at me and immediately started making assumptions about my lifestyle. She asked how much weight I had gained recently. I said I hadn’t gained any, that I had been at a pretty consistent weight for years. She looked skeptical, but let it go. After a few questions about my diet and alcohol consumption, she said that I should lose 10 percent of my weight and that she would put me on medication in the meantime.

At this point I got upset, because she still hadn’t addressed why my blood pressure may have suddenly skyrocketed. I didn’t understand how I could go from being healthy two months ago to suddenly having this problem, with no noticeable changes in my life. Other members of my family have high blood pressure, but none of them had it until their 40s. Wasn’t I too young for this?

She basically ignored those questions and told me again to lose weight. Then the condescension really started. “Just try to walk a little bit,” she said. I was taken aback by the assumption that I move so little that a bit of walking would make the pounds shed away. I replied: “I live in the city. I walk literally every single day, everywhere I go. I would say that I walk a minimum of a couple miles a day.” She didn’t believe me; it was all over her face. “Just try to increase your walking, you’ll be surprised how much it will help. Take the stairs instead of the elevator, little things like that.” I lived in a 5th floor walk-up at the time of this visit.

At that point, I felt utterly deflated. She didn’t want to hear the truth about my lifestyle, she was content to carry on with her assumptions. I left that appointment with no idea why this problem had suddenly come up, and no real plan for addressing it. When I went back to my obgyn, she decided to put me on the Depo shot, which did not have risks associated with blood pressure. Of course, while the shot is great in many ways, it has a major downside: weight gain.

Two years later, I am now at 230 pounds, and my blood pressure continues to be a problem. I’ve switched doctors, and my new doctor is much more empathetic and kind, but he still says the same thing at every visit: lose weight. I’ve been trying, believe me, but I can’t help but think that there must be more to it than that, and that my doctors are doing me a disservice by refusing to look past my weight.

Eating disorder? Nah, just some bad habits. . . .

A reader writes:
A few years ago, when I was in high school, I suffered from an eating disorder. I would binge eat (and really binge eat… like, 6000+ calories per day), then literally starve myself for days, then binge again. I didn’t gain or lose much weight because of my alternating habits, but I was suffering a lot. Not only was I severely depressed and doing poorly in school as a result, but I was fatigued and malnourished.

Finally, I decided to see a psychologist to deal with everything that was going on. I told her about everythingI told her that I wanted to lose 70 pounds, which would have put me severely underweight. I told her that I was absolutely certain I wouldn’t be happy until I was thin. Her response? “Okay. Maybe we should set you up with a weight loss counselor, then. That might be more helpful.” I asked her if my behavior constituted and eating disorder and required more therapy… she told me I just had some “bad habits” that had made me gain weight, and I was going about changing them the wrong way. According to her, it was teenage silliness and nothing that couldn’t be fixed with a healthy diet and exercise. If I had an eating disorder, I would have lost weight already.

Long story short, she declined to take me on as a patient, and five years later, I have lasting problems due to my eating disorder (which has now been diagnosed and treated, thankfully.)

Fat and pregnant? You MUST have gestational diabetes (even if you don’t)

gnrkrystle writes:
Two years ago, I found myself in a scary and exciting position. My husband and I were pregnant with our first child! I was over the moon, but it was scary to be in another country (I’m American and I lived in Canada at the time), far from family and my usual OBGYN. First, let me say, I LOVE my OB/GYN at home. She has talked to me about my weight, but always in a positive and helpful way. She understands that I am currently healthy and my being overweight does not mean that I’m about to break down an die at any minute. Her concerns about my weight are founded, but always delivered with respect and sensitivity, and never over done. After what I went through with the Canadian OB/GYN, i feel endlessly lucky to have my American doctor.

So, first of all, it’s very hard to research doctors up here. The way the system works is, the GP or family doctor refers you. You can tell them who you want, but if you don’t know any doctors, you get the luck of the draw. I was not so lucky. I was referred to a doctor, let’s call her Doctor Meanie-Pants. Because I was American, without OHIP (the state sponsored insurance), I had to pay out of pocket for every visit, the delivery, everything. Okay, that’s fine. But when you paid as much as I did…you should be treated like a costumer. All I got for my money was emotional abuse. On the first visit Dr. Meanie-Pants turned to me and said, “You are obese.” Jeez. Thanks, lady. I didn’t know. I rolled my eyes and bit my tongue. I was used to this, after all. Every time I’ve had to see a doctor that I didn’t already know, I got the same song an dance. Yes. I’m fat. I know. Now, can you please treat me.

I never felt comfortable with this woman. She was obsessed with my weight. I gained almost no weight for the entire 4 months she saw me. I was watching what I was eating, and the baby was burning a lot of calories. Given that I was large to begin with, I didn’t need to gain much. But she seemed to think I was “cheating” the scale or something. How could such a big fat, fatty possibly be pregnant and not be blowing up like a balloon?

It was durning one of her weight tirades that she proceeded to inform me that, at the next appointment we’d be doing my Gestational Diabetes test, but that she was certain I would have it. “As overweight as you are, it’s a certainty,” she said. I smiled brightly at her the next appointment when it turned out I did NOT have GD. Two appointments later she sat me down and told me that she was referring me to a specialist because she couldn’t risk her medical license with a possible American lawsuit. Because “since I don’t take care of myself” complications in the delivery are almost certain. Incidentally, I DID have complications…that had nothing to do with my weight, and it was a good thing I didn’t have this incompetent fat hater delivering me when it happened. I have no doubt my son would have died in the time it would have taken her to lecture me about me weight on the delivery table.

Symptoms? Lose 10 lbs first, then Dr will consider diagnosing. . .

LW writes:
My mother’s doctor refused to consider her symptoms until she lost 10 lbs. She did. Then he told her to lose 20 more. She tried, but she was in constant pain and couldn’t exercise. Plus, she was 60. Finally, he “humored” (his wording–he was still convinced it was her weight) her, ran some tests, and found that she had…rheumatoid arthritis. She suffered for months and sustained permanent joint damage because he didn’t like the way her ass looked.

Fat and pregnant? You must have gestational diabetes. . . .

Jennifer writes:
I got a shock at my latest annual physical. Dr. W. opened my file, glanced at the summary page, and told me that my history of gestational diabetes was a matter for concern.

I have had three pregnancies, all with care provided by the same group practice. I have never had gestational diabetes. At one point they were so sure that I was going to keel over and die that they had me checking my own blood sugar every morning, and I have never even once shown any sign whatsoever of GD–not even a borderline result. But somebody at this practice decided that because I am fat, evidence be damned, I must must MUST have had GD, and wrote it on the front page of my file. This must have been done after my last pregnancy or I would have heard about it before.

Dr. W., who is generally a nice guy, agreed that nothing in my file revealed the slightest sign of GD and promised to correct the front page. But now I have to wonder, when I go there, whether Dr. Z. or Dr. B. or Dr. L. or Dr. J. will completely ignore the evidence of their own instruments and prescribe care based on my pants size. And I can’t always count on being able to see Dr. W.

ARGH!

MS diagnosis delayed by 2 years due to obesity

P F writes:
My husband is fat. He was a fat baby, a fat child and now, at 5’8″ ranges between 280 and 320 lbs. So not just fat, but DEATHFAT! My husband was always very coordinated and graceful, quick and extremely strong. Even today, he can bench press 300lbs 10 times without straining at all. To the surprise of every doctor everywhere, he was always very healthy as well, with great cholesterol, low blood pressure, low heart rate and good blood sugar.

Until 5 years ago when my husband lost his colour vision. He could see, just not colours. After 4 hours at an ophthalmologist, a preliminary diagnosis was made: Multiple Sclerosis. (The first symptom is typically vision problems, though loss of colour vision alone is unusual.) He was referred to a neurologist who said “You should lose weight.” He ordered no tests and did not even mention MS. My husband was demoralized at yet another doctor calling him a fatty and his vision returned to normal, so he ignored the diagnosis and went on with life.

Then, 3 years ago, the stomach symptoms started. He couldn’t eat. My husband could keep down some liquid, but solids he threw right back up. (It turned out to be gastroparesis, essentially a paralysis of the stomach leading to an inability for food to move into the intestines. The food rots for a while, then the body ejects it, i.e., vomiting. It’s not uncommon with MS.) He went to his GP, who was delighted that my husband had lost 20 pounds. The fact that my husband was puking up every meal didn’t matter- he was losing weight!

Within 4 months, my husband had lost 120 lbs. He could no longer walk. His feet burned, he was losing feeling in his fingers and his teeth were a rotten mess from all the stomach acid. Doctor after doctor ignored the how and focused on how wonderful it was that my husband was losing his deathfat.

One night, I come home to find my husband passed out on the floor in a pool of blood. The constant vomiting had damaged his esophagus. The ER doctor was horrified. The burning feet? Neuropathy (permanent nerve damage) from vitamin deficiencies. Several of his teeth were abscessed. My husband was dying, and this was the first doctor to care. I cried tears of relief that someone actually cared.

The ER doctor ordered an MRI and a lumbar puncture (spinal tap). Because of my husband’s size, the LP had to be done with a flouroscope because they couldn’t feel his vertebrae well enough. The doctor doing the LP was angry at my husband for being fat. When he was told they didn’t have the right size needle, the one on the tray was too big, he used it anyway and my husband has had severe back problems since. (He never had them before.)

Turns out, my husband had MS all along. Weight is irrelevent to MS. There is no correlation between MS and weight. If anyone had cared to see past his weight, he could have avoided permanent nerve damage. His stomach still causes him huge problems, and we’re $5,000 into $15,000 of tooth repair. He’s in pain every day and struggles with everyday tasks. At least they didn’t kill him.

Thanks for listening.

General medical incompetence – PCOS? Just lose weight, it’ll stop.

Sarah writes:
Trigger warning for talk about self-harming
This isn’t exactly all fat discrimination by doctors but more detailing the incompetence I’ve had to deal with in regards to my PCOS and also my mental health, and incredibly dangerous advice given to me about weight loss by a doctor. Just as a warning, this could be triggering for anybody who struggles with self-harming.

I first started having problems with my periods when I was 14 (I’d started when I was 10). At first my doctors brushed it off as being perfectly normal but I persisted and eventually she sent me for an ultrasound (external one) when I was 15. (She didn’t do any blood work!) It came back as being clear except for a very thick womb lining which was consistent with me not having had a period for 10 months. So I believed her and just accepted that it was a normal thing for a teenage girl to go through, especially as she told me it was to do with being overweight.

Fast-forward to when I was 16. I wanted to go on the pill to manage my periods. This was because I would be going backpacking for 6 weeks when I was 18 and I didn’t want to deal with having one of my very irregular and very heavy periods deciding to make an appearance during that time.

They tried me on a variety of different combined pills, all with awful side effects, until eventually they put me on a mini-pill/progestogen-only pill called Cerazette. It worked. It stopped my periods completely and everything was fine during the time I went backpacking.

A few months after going backpacking I started at university. By that time I felt really strange just not having periods so I decided to come off Cerazette. I had one normal period 2 months after stopping it and then nothing.

During that time I was now going to the GP surgery in the city where I was at uni, rather than my doctors back at home. I usually saw a wonderful doctor. I’d actually mainly been seeing her about dealing with my depression after deciding to stop taking the anti-depressants another doctor at the same surgery had forced me to take (by saying that if I refused to take them I wouldn’t be offered any other help like counselling or therapy) . The no period thing was just a worrying side issue. During my time at uni I had also started smoking, part of that was because I’d heard it was an appetite suppressant (stupid, I know) and I was desperate to lose weight.

Anyway, this lovely doctor ordered for me to have blood work done and it came back with hormonal imbalances. However, this was done right before I was due to go back home for the summer so she told me to take it up with my doctors back home.

Now the fun really started with the NHS. The first doctor I saw, as soon as I mentioned that I had no periods and that I had abdominal cramps asked me if I was sexually active. I said yes (as I had been at uni) and she said that I would have to have a pregnancy test. I told her that it would be impossible for me to be pregnant as I was a lesbian but she still insisted that I had to have a pregnancy test because it was the standard procedure for any teenage girl even if she had lied about being sexually active!

I stormed out of there and demanded to see the practise manager, lodged a complaint and made sure it was noted on my files that I was to never have another appointment with that doctor (there are about 12 different GPs that are based in that surgery. )

I then had weeks of trying to contact my surgery back in my university city to get them to send my blood work over to my doctors at home. Didn’t happen. So the doctors finally did blood work on me and, you’ve probably guess it, still hormonal imbalances but it was a week before I was due to go back to university.

Anyway, went back to uni. Had to have more blood work done because they’d lost the other results and I couldn’t be bothered with trying to deal with getting my notes from my home doctors. Finally, I managed to see the lovely doctor again, who had to order more blood tests. She then explained that she thought I had PCOS and what it was but she wanted to send me for an ultrasound to check. I told her I’d had an ultrasound before and she explained to me that an external ultrasound wouldn’t be able to pick up the very small cysts that can be present with PCOS and I would need an internal one.

That ultrasound was incredibly painful as she pushed it right in and then out to the side. (As a side note, the evening after that ultrasound I got raped. There are only two people in real life who I have told. One of them is the therapist I’ve been seeing for over a year now and I only told her a few weeks ago because I’d convinced myself that nobody would ever believe that a fat girl had got raped. )

So I finally had that ultrasound and it confirmed that I did have polycystic ovaries. By this time was 15 months since my last period, so she kick-started my period using pills. Once the hell of that period was over, I’d finally got relief from the pain I’d been in.

Then she left as she was moving across the country. After 6 years I’d finally got a diagnosis that something was wrong with me.
So I went back to see another doctor about how to manage my PCOS. She told me that my only option was to go onto the combined pill. I explained to her that I had tried 4 different types of combined pill before and told her the side effects I’d suffered and asked if going back on Cerazette would help. All I wanted was to be able to manage my periods so going back on something that stopped my periods completely and that I had no side effects from would have been fine for me.
She told me that there was no way Cerazette could help with PCOS and I would have to go onto the normal pill. She then gave me a lecture that because my BMI was over 35 I was at high risk of getting a blood clot when taking the normal pill and this risk was even worse as I smoked. She told me to go lose 10kg (about 22lb), and quit smoking and go back to see in her 6 weeks time after I’d done both of those things. I asked if it was possible to healthily lose that weight in that time frame. She told me to stop eating all the cheese and cakes I obviously eat (umm.. I’d been vegan for nearly 3 years at this point) and to eat no more than 800 calories a day and that with my fat reserves I would be perfectly fine.

I didn’t argue with her. (Notice how I took action over the doctor who said that all teenage girls had to have pregnancy tests if they had those problems? Well in my mind that was discrimination towards all teenagers and it wasn’t my fault I was that age. However, with this doctor, it was my fat, so it was my fault so I was certain that if I complained everybody would laugh at me and side with her. Besides, I tried so many diets before that had never worked so maybe one that a doctor told me to do would actually work? )

Now, remember above I said I suffer from depression? Well, that includes self-harming and suicide attempts. By this time I’d started to use my smoking instead of self-harming as I really didn’t want to cut anymore but I needed to do something. So it was my crutch. One that wasn’t very healthy but would be better for me than cutting and I could get a lot of support with helping to quit smoking when I felt ready do that rather than dealing with the social stigmatisation I got from my self-harming and the risk of when I have a really bad bout of self-harming I have been very close to killing myself even if it wasn’t actually a suicide attempt.

So, there I was trying to quit smoking and lose 10kg by nearly starving myself at the same time. Yeah, my depression (which had been getting better) spiralled down and I nearly hospitalised myself with the self-harming. Actually, I probably would have died if my friends hadn’t found me before I’d done enough damage.

So, as you can guess, I failed at both quitting smoking and the diet. (Once my friends had got me cleaned up and bandaged they shoved a bar of my favourite chocolate in my face and light up a cigarette for me while putting my favourite film on the TV before they started to cook a meal for me. It was bloody wonderful. )
I went back to the doctors. After listening to her berate me for just not trying hard enough I finally plucked up the courage for her to see my arms and the healing cuts. Her response? “So? That’s not an excuse for being obese and refusing to quit smoking.”
I then tried to calmly explain to her that I smoked as my crutch instead of cutting myself and that when I try to quit my self-harming can get so bad I can nearly end up killing myself. All the while I was terrified that she was going to section me and have me carted off to the mental health hospital (which is actually why my friends took care of me themselves instead of getting anybody else involved – the thing I am most terrified of is being sectioned).
She laughed at me. She then told me “Cutting would be much healthier for you than smoking. Plus, if you quit smoking you will be able to exercise more so you will lose weight and you won’t have any reason for being sad anymore. “

Yep, that’s right. Nearly killing myself outright is healthier for me than smoking. Oh and the only reason I have depression is because I’m obese. Even though it’s right on the bloody notes in front of her that I’ve had depression (and anxiety) since I was 10 years old and that my weight gain (which started when I was 13) was due to comfort eating thanks to the stuff that happened in my childhood! Oh and also a broken ankle when I was 13 which never fully healed (I’ve also been lectured that was because of my weight, although when I finally managed to get it x-rayed again 7 years after I broke it, they discovered they’d missed the fact the bone had chipped and I had a lovely bone chip floating around in there which was causing me all the pain. ) which meant I was unable to do any of my favourite activities (horse-riding, mountain hiking etc) anymore.

Anyway, I dropped out of uni a few months after that to my depression and the pain that I was in from the PCOS meant I was having trouble just functioning. Oh and also because I had days when I couldn’t get up out of bed because my hips are screwed up thanks to my ankle and I get severe shooting pains radiating from my hips, so painful that I can’t even breathe, let alone move.

I’ve had two more years of hell with my doctors back at home. Although they understand the reason for me smoking and don’t want me to quit until I’m ready to quit. They are also starting to accept the fact that I do eat healthily (I keep a food diary now – I eat vegan diet with minimal processed foods (I have an occasional bit of dark chocolate, cakes/scones I bake very rarely and I have mock meat things once or twice a year) and have done for 5 years) and that I get way more than the 30 minutes of exercise 3 days a week they usually recommend to people of my size for weight loss. I did take a lot of joy out of showing them a copy of my job contract which details what I have to do at work and explaining to them that on average I walk over 12 miles a day at work, and on days I’m not at work I go out on at least 5 miles long walks with my own dogs. So they are finally starting to accept that my grand total of 2kg (4lbs) weight loss in the year since I’ve started my job might actually be to do with the fact my PCOS means my body wants to cling onto every single fat cell and not because I’m a lazy fat person who sits around stuffing her face with junk food all day.

Anyway, I am finally back on Cerazette and it’s wonderful. I’m also finding that my job, and being a lot more active than I was at uni, is helping my hip problems a lot. In fact, I can’t sit down in a chair for more than an hour without my hips playing up when I try to stand back up. So with my hip problems it wasn’t my weight that was causing them/making them worse, it was just having to be a university student and spending hours sitting in lectures or in the library doing my work, that was causing me all the hip problems.

Oh and despite being obese and a smoker, I manage to do my job and keep up with (and most of the time out-walk) the “healthy weight” people at work.

And best of all? Apart from a little shallow blip on Christmas Day, I haven’t cut since 6th October 2011, and without thinking about it, just doing it naturally, I’m down to 1-3 cigarettes a day instead of over 20 a day. It’s all down to my wonderful therapist who worked out that I actually have an avoidant personality disorder as well as my depression/anxiety and she also doesn’t mention my weight at all, unless I bring it up. And even then all she does is ask me if my weight stops me from doing anything that I want to do, and I realise that it doesn’t.

Follow

Get every new post delivered to your Inbox.

Join 112 other followers