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Old 01-14-2009, 10:34 AM   #1
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I have Eosinophilic Gastroenteritis

It took 5 years 6 GI's and The Kansas Univ. Med Center to get a name for my illness. This illness runs in cycles and stages. It took my job and my insurance so I have no medical care except for my Shrink. Thank the Lord for her.

 
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Old 01-14-2009, 10:35 AM   #2
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Re: I have Eosinophilic Gastroenteritis

Here is my life in a Flair Up.
FLAIR UP
Waking up and going to bed does not exist on a schedule. I am incapacitated. In bed all day. I have to have 24/7 help. I have uncontrollable diarrhea with severe pain at level 8. I have to wear depends. I have apx. 10 BM per day, sometimes bloody. The diarrhea is sudden, extreme and pain full. I have friends and family that care for me. I am so weak and the diarrhea makes a huge mess that I am unable to clean myself. I am helped to the bathroom where they help me get cleaned up and fresh pjís on. Clean bedding if needed. I also have nausea and vomiting. Nausea level is 9 and I vomit 2 or 3 times every 4 or so hours. I do not go to the bathroom. I have everything I need right next to me but whoever is there holds my hair back and gets me a wet wash cloth. The vomiting is extreme, sudden and pain full. I also get this strange rash on my hands and anus. I get large sores on my legs. Especially around the knee and ankle area. They have to be cleaned with alcohol. Flair up lasts 7 to 10 days. I average 1 extreme flair up every month. My fluid intake is small and I do not have an appetite. I am extremely weak and cannot get up out of bed and walk with out help. When I am in this condition and I do not have immediate help. I have to wait for help. There have been times when I actually crawled to the bathroom and waited in the tub for help. I also have Severe Clinical Depression with Severe Anxiety. Between the severe Eosinophilic Gastroenteritis systems and the Depression with panic attacks. I am on a emotional rollercoaster ride.
I cry all the time. I have depression meds that I take night. Sometimes I am unable to swallow them and sometimes I vomit them back up. These meds are not to be missed and missing a dose puts me a very psychotic state of mind.

 
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Old 01-14-2009, 10:36 AM   #3
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Re: I have Eosinophilic Gastroenteritis

And on those blessed tolerable days;
Tolerable Days
I wake up around 9:00 am. I walk holding on to the walls and furniture to the bathroom. Walk into the kitchen and my husband has my coffee and green tea ready for me. I am nauseated. If my body rejects the coffee (weak) I drink a cup tea. I make it to my chair get comfortable and settle in. Just from the walk from the bed to the bathroom to the kitchen and in my chair I am exhausted, out of breath and dizzy weak. Some days I have to by pass the kitchen and wait for my son to bring me a cup of tea. I can handle an hour or 2 per week on my laptop. Again, my son brings it to me and sets it up. My dear friend Margie Hurd gave me a headset phone. All I have to do is push a button to answer the phone. This has been a blessing when I have been in the bathroom or walking carefully around the house. By carefully I mean, I am weak and have to hold on to something. I get dizzy and pass out if I am not careful. I pass out apx. 5 times per week. Sometimes I have someone with me who helps me. Sometimes I wakeup on the floor.
The nausea and vomiting are at mid range. The diarrhea is still extreme, sudden and painful. But I only have a few a day. The nausea in constant and I have to be careful with what I do manage to eat to keep it down. Around 2:00 pm I go back to bed and take a nap. I am still very weak. My husband wakes me up when he gets home. Helps me to the bathroom and back to my chair where we try to have a normal quite evening. I take my depression meds around 9:00 pm and if I donít vomit them backup Iím in bed by 10:00. If I do vomit them backup I wait a while and try again. This happens at least once a week.

 
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Old 01-14-2009, 11:15 AM   #4
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Re: I have Eosinophilic Gastroenteritis

This sounds absolutely ghastly!! I feel for you. You think of life-threatening heart disease, cancer and meningitis, but something like this sounds worse and relentless. I have not heard of this condition, nor known anyone in such dire straits. I hope you find support on these boards. Sera.

 
Old 01-14-2009, 12:40 PM   #5
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Re: I have Eosinophilic Gastroenteritis

Blimey, if all the specialists can't sort it out for you I doubt anybody on these boards will be able to help you much apart from giving you some emotional support.
If I were you I would develop a new philosophy starting from a recognition that all treatment for whatever illness you care to mention is an experiment. It's just that somebody else i.e. your surgeon, physician doctor etc. is doing the experimenting. If they (with all their knowledge and experience) can't come up with something to relieve your misery then become your own experimenter on your own body.

Personally I would start by cutting out all those anti-depressant chemicals and other things that don't seem to be helping you and try to purify your system. It seems the last thing your body needs is alien chemicals and they are probably causing havoc to your body's equilibrium. I would also try to line the digestive system from the top down to the 'bottom' with oil, olive oil which is a natural food and might just help with your digestion. It could form a barrier to some of the things that you seem to be allergic to. Then I would eat only bland whole foods like potatoes and rice and yoghurt, things like that. It is sometimes the simple things that relieve an ailing system but the oil is central to the experiment, only pure extra virgin olive oil from a first cold pressing. I feel very sorry for you but you have to become your own physician if the experts can't help. Good luck. kennyboy.

 
Old 01-14-2009, 05:39 PM   #6
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Re: I have Eosinophilic Gastroenteritis

Thanks to you all. I have been on the "Makers Diet" for a year with no improvement. I have beed tested for allergies all negitive. I have been on a bland diet for years with no improvement. There is no cure for this. As for my depression meds. I just don't know.
Thanks............S

 
Old 01-15-2009, 07:04 AM   #7
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Re: I have Eosinophilic Gastroenteritis

But don't give up hope; you will have to keep experimenting with various ideas. Your body is out of equilibrium and you have to find out what is causing your illness and I'm not talking about allergies. Start from basics. You can reduce and increase the amount of protein and carbohydrates you consume and be on a really bland diet too but if the fatty acids in these foods are out of balance then you could suffer all sorts of ailments that you just cannot trace to a particular thing.

Your body needs certain fatty acids and some of these it cannot make itself so you need to consume them; hence they are called 'essential fatty acids'. Your intake of these acids may be out of kilter, they usually are with a Western style diet although most people don't realise it and suffer illness as a result.

You need omega 6 fatty acids and omega 3 fatty acids in the correct proportions, no more than about 4 to 1. It's not an exact science but a typical American diet can have the proportions as much as 50 to 1 and that certainly is not healthy. Omega 6 acids are consumed in margarines and most vegetable oils but there is not a lot of omega 6 in olive oil which mainly consists of monounsaturated fatty acids (omega 9). These are good for you and people from the Mediterranean areas suffer less illness because they consume a lot of it and they live longer too. It seems that the more you consume (people on the Greek island of Crete consume up to 31 litres per person a year and live the longest of all Europeans) increases your longevity. The French woman who holds the world record for age, she died at 121 years, when asked what her secret was said that she poured olive oil on everything she ate. Too much olive oil could cause an imbalance between your omega 6 omega 3 requirements as olive oil consists of 10% omega 6 and 2% omega 3 so you may have to supplement your omega 3 intake to maintain a balance. You can do that by taking fish oil or flax seed oil as both are higher in omega 3 fatty acids. As I said, it's not an exact science. Butter is good for you because it has the two in equal proportions and most diets tell you to avoid it. You need to research and experiment as nothing can get much worse than how you are now. Hope I've given you some ideas to try. Good luck, kennyboy.

 
Old 01-15-2009, 10:34 AM   #8
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Re: I have Eosinophilic Gastroenteritis

Hope is the one thing that I do have. I walk by faith and I am standing on God's word that he will heal me or use me.
The diet examples you gave are the basic's of the "Makers Diet". Check the book out at the liabray(sp?). I am also thinking about getting a juicer. Organic Veggies and fruits in liquid form might help?
A praise report for answered prayer came today. I finally get my Social Security Disability Benefits. Including MediCare. Now I will be able to find me a Dr.
The Mayo Clinic is my hearts desire, and if they cannot help me no one can.
Thank you so much............ It has been a blessing to have some contact with others.

 
Old 01-15-2009, 04:27 PM   #9
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Re: I have Eosinophilic Gastroenteritis

Good to hear that you are getting your social disabilities entitlement, that should cheer you up a bit. But remember that any doctor you see will treat you like an experiment as all others have done already, let's hope he or she will find out a way to make your life more bearable.

I'm glad to read that you are going to get a juicer because I was about to suggest that you try to imagine all the food you consume mashed up on your plate in the same way it will be mashed up in your gut by your digestive processes, similar to a juicer. If the food (in your imagination) has an oily wet and slippery consistency then that is how it will be inside your digestive tracts. If it's sloppy or too dry (in your imagination) then that is probably also how it will be inside you. Try to think of the consistency of the food going in at one end being similar to what comes out the other end and it might make you think a little about the correct density. Too runny and it's going to come out like that probably, too dry = constipation. Become a mental 'juicer' and imagine what your guts are going to make of the food you consume.

I have never heard of the diet plan you use but if it includes the correct oils then it can't be far wrong. Experiment. Good luck.

 
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