They pulled out the Eating Disorder Card

[Keralin]

My doctors don't know what else to do for me, so they've decided to ship me off to be evaluated for an eating disorder.

Despite being on medication for almost three months, and working with a dietitian, I still can't get my weight up to a safe number and maintain it because of the amount of nausea and pain I experience after eating. I really am trying! I managed to put a few pounds on at the end of summer by eating just about every hour, but got so sick of puking up 70% of what I was eating, then being in pain the rest of the day, that I just sort of gave up. I'm eating as much as I possibly can, and drinking glucerna between meals to no apparent benefit. It's difficult to explain that to someone without sounding completely nutzoid if they haven't been through it, so I suppose I can understand the logic behind calling it a mental problem.

It's just very frustrating when I go to an appointment and what I'm saying isn't being heard..it's like screaming into a pillow. Another capsule study is in the works, since the CT enterography I had done over a month ago didn't show any major inflammation. I declined have a balloon endoscopy done because I honestly don't think I'll make it through the prep and procedure without serious consequence. If the capsule study actually shows something significant enough to warrant a closer look, THEN I'll consider the endoscopy. In the mean time, I'll humor them and get my head checked so they can cross it off of the list and move on so maybe they can stop thinking about the whole looks/quacks like a duck with anorexia thing, and start devising a plan with me to get me out of this nightmare.

Has anyone else dealt with a similar situation?

As a side note, I cracked a rib a few months ago and was taking percocet for pain. That's the best I've eaten in the past year and a half. Maybe I should tell them to put me on narcotics indefinitely?

 

[fozheart]

Oh you poor girl! Isn't if infuriating and insulting for a doctor to say that?! I was at my GP yesterday. After telling her about my current abdominal pain, difficult digestion and how everything goes right through me, she commented that I was "quite lean", and "was this weight my ideal weight?" UGGGG! Of course not!

I wish you could manage having the balloon endoscopy- maybe it would give the doctor a better insight about what is going on. Good luck!

 

[nogutsnoglory]

I was just talking to my dad about how horrible I feel for some of the females here who can't eat or absorb due to crohn's or other digestive issues and get accused of anorexia or an eating disorder. Even with a proper diagnosis, people don't understand that eating = pain for many of us.

 

[Johnnysmom]

Just to clarify, anorexia and anorexia nervosa are sometimes confused. My son definitely had anorexia. He didn't avoid eating because of body issues, he just had begun to associate eating and pain so he avoided eating. Not to mention that he felt nauseated after only a few bites. It was worse at restaurants when he had a plate full of food and felt compelled to eat it all and knew he wasn't going to be able to. There was a psychological aspect to it, and it helped once we made some small changes.

Your Dr. may have meant anorexia nervosa, so this may not pertain to your situation. Just wanted to share our experience. Whatever the case I hope you are feeling better soon. Certainly your Dr. should be taking your symptoms seriously. Sorry you are struggling, I hope you find some answers soon.

((((Hugs))))))

 

[If*]

Hi there, can you keep a food journal? It can be a challenge to eat when you have nausea and vomiting. Can you ask your Dr. about a anti nausea medication? Does your dietitian deal with Crohn's patients on a regular basis? If yes, ask how they have helped others gain healthy weight. If no, can you ask if there is one available who has successfully helped others gain a healthy weight (with Crohn's).
I don't know if they understand how upsetting it is to be underweight. When you seriously try and weight falls off. With nausea it is a effort.
This might help a little: have you seen Carnation instant breakfast? They are not super high calorie (220 with a cup of fat free milk) but taste pretty good and you can add some additional calories and nutrition each day. They can be mixed with whole milk, or lactose free milk or whatever dairy alternative you might use. They do have a no sugar added mix as well.
Have they checked your b12 and other important vitamin levels. Being low in some can hinder weight gain and cause increased D.
Try to not let them upset you. I have read anorexia can be a part of Crohn's - not the same as the girls that strive to be thin - but can possibly be caused by a fear to eat due to pain, nausea, the extreme D and food making one just feel so unwell.

I hope you feel better soon.

 

[Ihurt]

Yes, that is right. The actual definition of Anorexia is "lack of appetite", where Anorexia Nervosa is an eating disorder that is linked to not wanting to gain weight. In my opinion, they should come up with another name besides anorexia. I mean so many people just link the name anorexia with the disease of not wanting to eat nor gain weight.

I still do Not think anorexia is an eating disorder though, and a lot of doctors will say anorexia "is" an eating disorder. That is wrong in my opinion.

Just to clarify, anorexia and anorexia nervosa are sometimes confused. My son definitely had anorexia. He didn't avoid eating because of body issues, he just had begun to associate eating and pain so he avoiding eating. Not to mention that he felt nauseated after only a few bites. It was worse at restaurants when he had a plate full of food and felt compelled to eat it all and knew he wasn't going to be able to. There was a psychological aspect to it, and it helped once we made some small changes.

Your Dr. may have meant anorexia nervosa, so this may not pertain to your situation. Just wanted to share our experience. Whatever the case I hope you are feeling better soon. Certainly your Dr. should be taking your symptoms seriously. Sorry you are struggling, I hope you find some answers soon.

((((Hugs))))))

 

[Keralin]

Thanks, you guys are great! :ghug:

I'm in my 30's (very young for my age :lol2 and have never had any major issues with weight as it pertains to body image in the past. The reason I say major is because I'm only human...and I am female so I've felt pressure at certain times to be thin, like on my wedding day, for example. I'd rather feel good and be 200 pounds, than feel like dookie and be svelte. Even the GI doc says I definitely don't fit the profile of Anorexia Nervosa, but not everyone is a textbook case. If that were the case, doctors would have it way too easy.

I do believe there definitely is a psychological aspect to it (sort of like aversion therapy), but my desire to feel well and nourished overrides the food fear I have most of the time. Conversely, getting enough food in to gain completely slaughters any little bit of quality of life I have left. It basically has me layed out for a majority of the day. I will have speak with my pcm about anti-nausea medication next week. I figured she would have offered me something by now, being that nausea is one of my chief complaints.

My dietitian is pretty good, but she did say I'm one of three Crohn's patients she has had within the past couple of years. That's not many. She's ordering a case of Peptamen for me to try, as I've had difficulty tolerating the nutrition shakes I have access to at the pharmacy or grocery store. We'll see how it goes.

 

[UnXmas]

As a teenager, when I first got sick, I experienced an extreme version of this scenario. I was in in-patient psychiatric hospital for a long time, because doctors believed my weight loss was due to anorexia, despite the fact that I kept telling them my body image was normal and I had no problem trying to eat high-calorie food. The situation snowballed - a GP thought I should see a psychiatrist just to check I didn't have an eating disorder, and the psychiatrist saw what he wanted to see. Once it was on my medical record, everything I said and did was interpreted as a sign of mental illness. (E.g. when they realised how much I was having diarrhoea, they thought I must be abusing laxatives.)

Even those doctors who eventually accepted I wasn't anorexic - wasn't concerned about my weight - still stuck to the notion I had a mental illness. Because I kept saying food was making me ill, they diagnosed me with OCD - an irrational phobia that eating too much or the wrong thing would make me sick. The reality was that eating did make me sick (triggered diarrhoea, etc.).

My story's a long one, so I won't go into details, though I'll do my best to answer questions if you have any. Do everything you can to stop doctors proceeding with a mental health diagnosis now, before the label gets stuck to you.

 

[Keralin]

Oh man, that's exactly what I'm afraid of. Prior to my Crohn's diagnosis, my pcm at the time was trying to get me to go to a psychiatrist to make sure it wasn't all being caused by depression and/or anxiety. I straight up told her, yeah I'm depressed, but it's situational. A person can only feel terrible for so long before it has an impact on mental health, so it was sort of dropped it after that.

 

[fozheart]

Oh my gosh UnXmas...what a nightmare! Yes, Keralin- don't let any of those doctors put you under! Stand firm! (how ridiculous to have to defend your illness!) Good luck!

 

[Axelfl3333]

Isn't,t that strange?your ill for months and get the blues,sounds normal to me!won,t help that your probably desperate to get back to normal eat some decent food without immediately recycling it words fail me good luck

 

[Keralin]

I had an appointment with my primary doctor today. She brought up the info that my GI doc faxed her about sending me to someone who specializes in eating disorders, and I once again went over the symptoms I'm having. It's not a lack of desire, in fact, I expressed how ecstatic I would be if I could eat whatever I want AND keep it down. She prescribed me Zofran, and hopefully that will combat the nausea. I took one before lunch, and am still feeling pretty ralphy, but so far the food hasn't escaped. Has anyone else had success with it?

I was told to go off Entocort for the next month and a half (just as my appetite started to come back...), and then I'll have the double-balloon enteroscopy done. There's no sense in stretching it out any longer by asking for another pillcam first. I just want to get it over with. If they need to violate me again in order to justify more aggressive treatment options, so be it. Ha! I'm pretty desperate for some sort of relief.

 

[Johnnysmom]

Do you ever get a sort of heart burn pain? My son had ulcers in his stomach from crohn's and I think that was what caused the nausea. He was also put on a PPI (proton pump inhibitor) just until things healed, about 4 months. It did help him.

We have used Zofran from time to time and it does work. They have a couple different doses so ask if it isn't doing the trick.

Sounds, like things are at least moving in the right direction.

 

[Earthsoul]

I have the same problem, weight loss due to nausea and pain. My gastro has now diagnosed slow transit colon, or colonic inertia which is making me feel sick and causing pain. My tests came back showing no inflammation, although I am biopsy positive for IBD.
I am waiting to go in to be fed now via NG tube, and my gastro believes me, but then I am a clinical nurse specialist so he kind of realises it is unlikely to be in my head, If it had not been for that one thing I believe he would have questioned it, he did ask me outright once and I said 'I am depressed due to this illness but depression is not the cause'.
The problem is if the tests come back seemingly clear then they start to question your sanity. In reality the tests are not always as good as they should be.
If you know you don't have an eating disorder then hold on tight to that knowledge and don't let anyone start to make you question yourself.

 

[Axelfl3333]

Acid reflux and crohns seem to run together but it's easily treated initially I was admitted to hospital with chest pains and breathlessness,thought it was heart trouble not helped by having a marker in my blood that goes along with a heart attack,been on lansoprazole since that's been fine.good luck