Food--NO--Not working for me.

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BigLucy
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Date Joined Mar 2007
Total Posts : 413
   Posted 2/9/2011 5:54 PM (GMT -6)   
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? confused

Alcie
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Date Joined Oct 2009
Total Posts : 5029
   Posted 2/9/2011 6:38 PM (GMT -6)   
Lucy, so sorry you are going through this.

The last few months I have been having trouble eating, started losing weight a couple of months ago. Food made me feel nauseous. I was starting to look and feel like I was dying. My PCP and GI doc didn't seem to notice or care much that my condition was worsening. My allergist noticed and had me get a bunch of tests, which were mostly normal.

The allergist put me on antibiotics, sinus rinses and Diflucan for chronic sinus infection. I also started to make a big effort to get a little salad in my diet because I knew I was short on vitamin K - tiny cuts took forever to stop bleeding. I started taking whey protein and Boost high protein. I also have to eat a little something nutritious every couple of hours. All this seems to be helping. I have gained back a couple of pounds, but more importantly my face no longer looks drawn, and I don't feel like I'm dying.

I suspect the infection came on when my nose was broken in an accident a year and a half ago. A few months after that I had an operation to stop my gastric reflux, also because of the accident, but the wrap came at least partly undone when I had a very brief vomiting episode. My stomach is now partly stuck above my diaphragm. I can't eat more than a half cup of food at a time.

I think working on the sinus infection plus getting more vitamin K and protein in my diet were key to starting recovery. I'll be on Diflucan for a few more months, possibly a few doses every month for life.
Alcie
 
 

Retired Mom
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Date Joined Feb 2010
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   Posted 2/9/2011 7:18 PM (GMT -6)   
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!
Failed fusion L5-S1, Pituatary damage, HGH Def, Fibro, Bladder surgery failure, Nissen Failure, GERD, OCPD, GAD, MDD, CTS (Bilateral Surgery completed), CFS, TMJ, Migraines, Vit D, A, Magnesium deficiency, Pre-glaucomic (sp?), HBP, Idiopatic Reactive Hypoglycemia, Edema, too many Drug/Food allergies, sensitivites, and current meds to list.

Chartreux
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Date Joined Aug 2006
Total Posts : 9664
   Posted 2/9/2011 8:19 PM (GMT -6)   
Do you have any food allergies, maybe go to an allergy doctor and
go thru with allergy testing...At this point that might be worth a place to start.
Food allergies can cause all types of reactions or it could be an infection
somewhere in your body.
Maybe try "Probotics" Only trying to help...wish I could make you feel
better soon...keep us posted, okay...
((((((((((((((((((((((((((((((BigLucy)))))))))))))))))))))))))))))))))))))))
Prayers and Healing Hugz
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...

********>^..^<********>^..^<********>^..^<********

BigLucy
Regular Member


Date Joined Mar 2007
Total Posts : 413
   Posted 2/10/2011 12:31 AM (GMT -6)   
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.

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2317
   Posted 2/10/2011 12:48 AM (GMT -6)   
Lucy,
Have you been up to the Mayo Clinic? My ex-boss' daughter had a similar issue -- lots of probs, couldn't keep down food for anything & had to drop out of university b/c of it.
After a bunch of local research hospitals, her GP gave her a referral up to Mayo. 4 years later, she's healthy & even trying to lose a few pounds.
I don't know most of the details, but it involved an interdisciplinary team-- a neuro, GI, PM, psych, nutritionist, pulmonary, etc, etc, etc.
They each put their piece of the puzzle on the board & then kept trying to figure out what the picture might look like. I know the neuro & pulm. actually played pretty important roles in finding a good treatment. bizarre, right? but as you say, there's a lot of unknowns about how we work.

BigLucy
Regular Member


Date Joined Mar 2007
Total Posts : 413
   Posted 2/10/2011 12:52 AM (GMT -6)   
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.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16804
   Posted 2/10/2011 12:59 AM (GMT -6)   
Lucy do you have any medication to take for the nausea? I live on Zofran because nausea is just a way of life with me. I do understand the food situation because I have both crohns & UC and its a booger at times. I don't absorb things so its just tons of fun at times.

What I am not understanding is why no one has suggested TPN. Its not uncommon for people with crohns or UC to have to go this route for awhile. Perhaps you need a new GI to look at things because people cannot go without food and water indefintely. You have to have both of these and protein shakes are good but they do not replace a meal.

Personally, I would opt for a 2nd opinion with a gi.
Moderator Chronic Pain Forum

BigLucy
Regular Member


Date Joined Mar 2007
Total Posts : 413
   Posted 2/10/2011 1:15 AM (GMT -6)   
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.

Retired Mom
Veteran Member


Date Joined Feb 2010
Total Posts : 1753
   Posted 2/10/2011 1:58 AM (GMT -6)   
Nothing like the thought of hook worm therapy to make me want to go grab a sandwich and a coke....lol.

Sorry my post before sounded so simple. I knew you had done everything you knew how to do, but (as your Dr said), the human body is a strange thing. I'm sorry I can't give any more information about things I don't know, but I do want to tell you how nice it is to have you back posting with us. I have honestly missed you (and a great bunch of others) and it's like the dam broke and people are flooding back in. It's wonderful to see people wiling to take a leap of faith again....especially if they had a bad experience or two along the way.

I have no answers for what's wrong Lucy, but to answer your first question......I go whenever I feel like there is nothing else I can do or when they want to see me. Who knows, perhaps there is one day that the Dr will have seen something he/she remembered from somewhere and boom you have a cure....it can happen :)

All my best!
Failed fusion L5-S1, Pituatary damage, HGH Def, Fibro, Bladder surgery failure, Nissen Failure, GERD, OCPD, GAD, MDD, CTS (Bilateral Surgery completed), CFS, TMJ, Migraines, Vit D, A, Magnesium deficiency, Pre-glaucomic (sp?), HBP, Idiopatic Reactive Hypoglycemia, Edema, too many Drug/Food allergies, sensitivites, and current meds to list.

Jim1969
Veteran Member


Date Joined Jul 2009
Total Posts : 2042
   Posted 2/10/2011 4:47 AM (GMT -6)   
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.
2 confirmed herniated lumbar discs. Spinal Arthritis. Spinal Stenosis, diabetic peripheral nueropathy.

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 5029
   Posted 2/10/2011 8:41 AM (GMT -6)   
My GI did not believe, still doesn't, I have food intolerances (not allergies), but my allergist had me keep a fod log and then doing food challenges. I am intolerant to anything with sulfites, and I get a pretty bad reaction within a couple of hours, but some people take up to 2 days to react.

I didn't have any relief from Prilosec, but can get help by taking Nexium.

My ENT didn't think I had any sinus problems, but MRI showed sinus infection. Then he gave me only10 days of medication, which worked but the infection came back. It makes me feel nauseous, tired, weak ... I still am not cured, although Diflucan seems to help some.
(for yeast and fungus)
Alcie
 
 

Alcie
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Date Joined Oct 2009
Total Posts : 5029
   Posted 2/10/2011 8:47 AM (GMT -6)   
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.
Alcie
 
 

Mrs. Dani
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Date Joined Jun 2009
Total Posts : 2787
   Posted 2/10/2011 11:21 AM (GMT -6)   
Dear Lucy,

    Good morning :-)   I hope the fatigue eases up a bit for you today... though I fear each day is probably much of the same for you.

   I have no advise to give with regards to keeping liquids or solids down. I have eat 5 small meals a day to keep my weight up. It is because I do not sleep and am sick to my stomach frequently. Most are high protein. So, not much help with regards to that. I did worry quite a bit when reading your post and I couldn't help but wonder if you have considered going to a teaching hospital or the Mayo Clinic?

Here is link....

~~>  http://en.wikipedia.org/wiki/List_of_university_hospitals

~~>  http://www.mayoclinic.com/

     I hope you are able to find answers.

:-)  
Dani


TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood

Chronic Pain Moderator
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Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2317
   Posted 2/10/2011 3:02 PM (GMT -6)   
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)


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16804
   Posted 2/10/2011 3:13 PM (GMT -6)   
BigLucy another thought is have you been sent to a nutritionist? I was sent to one and it was a real big help for me. You may want to see about a referral w/your insurance. I also notice you are on the old time treatment plan as well, have you ever been tried on Lialda? If not it is very much worth asking your GI to consider.

Take care.
Moderator Chronic Pain Forum

spinal soldier
Veteran Member


Date Joined Dec 2009
Total Posts : 687
   Posted 2/12/2011 1:19 PM (GMT -6)   
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.
L4,L5,S1 bilateral Laminectomies, Foraminotomies 2002
L4-S1 PLIF with instumentation 2008,

current Rx: fentanyl patch 75mcg. , Roxicodone 30mg prn qid,vistaril 50mg prn nausea, Lyrica 150mg 2x,Adderall 20mgs 1x A.M. 10mg PM prn, Soma 350 mg 3X, Elavil 25 HS, diazepam 10mg bid prn, Supplements: CO-Q10 100mg, Vitamin D 2000IU, Fish-Oil1000mg EFA, B-Complex50 3x/day, GABA 750mg,
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