Food--NO--Not working for me.

FYI: I have every GI DX imaginable, plus fibromyalgia (maybe someday I'll make it into the Guiness Book of World Records).  Anyway, six months ago my body started rejecting food altogether: vomiting any time I swallowed anything even water, the smell of food makes me sick, complete loss of appetite, and worse of all, intense stomach pain any time I eat.  After two weeks of no food and minimal water was hospitalized but still have the problem.  I have taken every test known to modern medicine and the MD's have no reason this is happening other than I have a defective GI system.  After a stint on medical leave I am back to work FT and am miserable b/c I cannot eat! Try working with no energy, not fun.  I force protien shakes down, but I keep losing weight and have no energy.  Juicing is not much of an option b/c I have Ulcerative Colitis and and fiber in the colon causes bleeding.  Anybody have a good liquid food supplement for someone in my condition?

P.S. I'm miserable and want to contact my MDs just to update, but there is not much they can do so why keep complaining.  At what point do you all call the doctor when there really is not much more they can do for you?

Hi Big Lucy,

I have no idea what to recommend for someone like you. What a horrible existance you must have without the enjoyment of food or drink. This may sound absolutely stupid and please forgive me if it does, but I have been able to get some handle on my GI issues by chewing up acidolophilus (sp?) 1 billion units twice each day. I am allergic to diflucan and was having significant issues in the lower abdominal area. This is not to say I am loosing weight or anything like that and I eat way too much, but perhaps there is something you can try as a pro-biotic to help. Otherwise I can only send you prayers. I wish I had an answer, but you have tried everything, I'm sure.

Alcie, I'm glad you are back on track on your stomach issues. So many times yeast plays an important role in the way we feel and it is an often overlooked issue.

All my best!

Thanks for responses. I've tried everything, believe me. No food allergies, when you go for weeks w/o eating you quickly realized its nothing your eating; my GI has repeatedly explained its not content, it's mechanism (if that helps explain). I guess the real question I wanted answered was overlooked: how often do you all CP/CI go see your MDs even though there's nothing more to do and you are just living with chronic illness; I sometimes feel like just going in to tell somebody I feel terrible, but they already know that and what can they really do with that info??? At least my pain MD admitted to me once that modern medicine is really in it's infant stage and we don't know a lot about how the body works--not sure that really comforted me, but appreciated the honesty. I'm just tired and to top it off I got a cold today, which feels as if it may turn into a sinus infection--that should be a blast for awhile.

Great suggestion, the first thing I thought of was I need that doctor on that show House. Unfortunately, I belong to a HMO and I'm almost certain they would NOT pay for that type of medical care and personally it would be cost prohibited for me.

Wow, love the instant reply: yes on Zofran, Bentyl, Asacol, Rowasa, Prilosec, maintenance Prednisone, Restoril, and of course multiple pain meds, antidepressants, fibro med, etc, etc. This, ah, rejection of all food is a new thing for me, starting last September and not going away. I have days of reprieve, but for the most part it's staying around too much for my comfort. I don't have an infection, my blood work is good, had CT, MRI, endoscopy, colonoscopy and, yes, have had second opinion. In fact, my GI is head of the GI dept and second in command of the entire hospital I go to, so I'm pretty sure I'm not getting sub par treatment. I've had my illnesses for a very long time and have been very proactive, explored pretty much everything, but I still ask around b/c you never know. Wait, there is one thing someone suggested that I try that I absolutely refused: hook worm therapy my friend heard on NPR (some east coast holistic guy is pushing this treatment for GI sufferers)--no thank you.

Lucy, you should call and talk to your HMO about going to the Mayo clinic and see if they will cover it. You might be surprised. I was under an HMO type health plan when I went and ended up paying nothing out of pocket. Of course I had to cover the trip up and back as well as the cost of staying in a motel for about a week but as far as medical bills went I never had to pay one cent.

Sorry, that went out when I hit "return" accidentally.

I also thought I was getting help for fibro from the fibro meds, which I tried one at a time over a year, but I actually feel better after getting off them.

Just getting tested for allergies doesn't mean you don't have "intolerances." It just means you don't get hives or throat closing (IgE reactions).

Recently I have stopped eating wheat and seem to feel a little better. I am not allergic to wheat as far as I know, but it's common to become sensitive to it, especially with age.

I hope you keep on fighting and find out what is causing your problems. Best wishes.

Lucy,
My ex-boss had an HMO. It sure made things more complicated -- had to go through a long appeals process to get them to pre-approve the visit. But she just kept sending them letters, having her daughter's doctor send the HMO letters & calling them every third day. I think she may have just worn them out, but they did give in & paid for everything except $1000. Mayo offered charity care for the $1K, but she was able to afford it.
Mayo reviewed all the girl's records & convened a team. They actually didn't run very many tests up there. Most of the tests were run ahead of time by the local hospital. Once they came up with a treatment protocol (maybe a week or so into her stay), they teleconferenced the girl's GP & explained everything that needed to be done. The GP arranged for the protocol to be continued in her hometown & the girl was released from Mayo back to her local hospital. Mayo handled any issues by phone for quite a while. Eventually she ran into a glitch & went back for a second visit at 6 or 12 months (or maybe both) b/c there was some specialized treatment that the local hospital couldn't provide -- and again that was a battle to get covered -- but the HMO paid for 100% of that visit.

So it is do-able. If you can find yourself a volunteer advocate, that would be ideal. Otherwise, you or your family need to be the advocate. Just call them like there's no tomorrow & keep asking for more information, for written records of everything & for the next person up the food chain. Document every phone call & send them records of what was discussed, what was promised & what you would like them to do.

Mayo is not like House. They do not do fly-by-night treatments or break the law or run tests that are unnecessary. The HMO's want to make it out like they do. They only run reasonable tests. The difference is that the Mayo doctors have seen the craziest cases in the country, so they hear a set of symptoms & immediately know what it is b/c they've had 12 other cases. Other docs maybe read about that dx in one paragraph of one book back in med school.

Try the other suggestions that people have posted -- no need to go to war with the HMO if you don't need to, but I want to encourage you that it can be done. It just requires a lot of patience, a doctor with a lot of patience & a roll of stamps. Don't give up. We're all pulling for you. :)

Post Edited (Frances_2008) : 2/10/2011 1:07:45 PM (GMT-7)

i know two great supplement companies are; New Chapter and Garden of Life. i lean with New Chapter for about everything; multi. vit. and min., omega-3,6,7,9,pro-biotics ect. i don't think they have a smoothy type thing but Garden of Life does. you may benefit from a amino-acid complex. spirulina shakes or liquid is good because it contains high vegetable proteins and a range of vitamins and anti-oxidants. alfalfa extract comes highly recommended for mal-nurished people because it contains just about every known nutrient due to it's deep root system. all these products are totally organic. best of luck to you.