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Not Sure What Is Wrong With Me!

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key Contributor
key
Posted

Ok, so I have been gluten free for about 18 months. Went to a new doctor, because I moved and I have been really suffering for a year at least. I can't keep from getting sick for more then a few days. THe last month has been miserable. I have lost another 8 lbs. I have gotten to the point of being unable to eat hardly anything and am terrified of food making me sick. My heart has been racing, very cold all the time, eating ice constantly and horrible stomach problems. I will have attacks where I feel like my stomach is just "swollen" everywhere and feel like throwing up.

So, I saw a new GI doctor that I absolutely loved. He reviewed my blood work and feels that I definitely do have celiac disease, but feels I am not healing or getting gluten. Or it could be something else going on too. For now I am living on Ensure and my colonoscopy and endoscopy are day after tomorrow. I am having an Iron INfusion today, because I am anemic and my iron is so low. This has been a very long two years and I just want to feel better.

I have three young boys to care for and hate being sick. I am terrified of food! I don't know how I will ever start eating normal again. It is very frustrating, because I have been unable to eat. I have tried just about every diet. My mom is accusing me of having anorexia, which I don't think is the problem at all. I have been so sick, I don't want to eat. I do feel like I need to somehow find a better relationship with food. THe doctor says we will work on that later, after we figure out why I am so sick. I hope he figures it out.

Can anyone reassure me of the colonoscopy prep?? I am terrified! I have to drink 3 ounces of Fleet phosphosoda and take 4 dulcolax! I think it might kill me. Plus my test isn't until late afternoon. I will be starving by then.

Well, thanks for listening. I am So hoping I can get better. Drinking Ensure is getting old already and it has only been like a week.

Monica

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jerseyangel Proficient
jerseyangel
Posted

Hi Monica,

Boy, you've really been through a trying couple of years :( I hope that your new doctor will be able to figure out exactly what is causing you to not heal completely.

I can reassure you a bit on the colonoscopy. I had to drink the large jug of laxitive, but my husband did the Phospho-soda and Dulcolax. I mixed his Phospho-soda with ginger ale, and he had no problem getting it down. You will be in the bathroom quite a bit that evening--I suggest a book or some magazines ;) I didn't have any pain or cramping, though.

At any rate, the prep is the worst of it--I was asleep for my test, and it was a breeze. I remember nothing from shortly after the IV went in until I woke up. I felt fine afterward.

Best of luck with everything :) I sure hope that this will be a new beginning for you.

Terch Apprentice
Terch
Posted

Sorry that you are having such a hard time, but I think you sound like you have a good doctor and will help you through this. I think that what you have suffered all these years will be nothing in comparison to the colonoscopy. Definitely opt for the sedation and you won't feel a thing. I have done the prep for this 4 or 5 times and although it's not great it certainly wasn't as bad as one of my attacks. I think it's just because you know you are going to be on the toilet all night and you are doing it willingly makes it seem lousy. You do sound like you have a different relationship with food than some and that might be worth looking into. I don't think that with all that you have been through it would hurt for you to talk to someone about the way you feel. It's sometimes easier and much more cathartic to talk to a third party that won't be biased.

Anyway, I hope that all goes well with your tests and that you finally get some answers. From everything that I have read I think that having been diagnosed for so long that you may have a longer road to healing than some. Keep walking the walk...

key Contributor
key
Posted
  • Author

Thanks guys, I am starting the prep this afternoon and it is nice to know that other's have survived. Yes, they are sedating me for it. I wish I was scheduled in the morning. Two days without eating isn't going to be fun. I haven't been eating and just drinking ensure.

I definitely think I have a different relationship with food. I have never eaten meat and wish I could try it even. I wouldn't have a clue how to cook it. I have never eaten it. I have always eaten alot of beans, but lately they don't work well on my system, but nothing does.

I had to go see the Hematologist yesterday and it is in with the cancer patients. I was the youngest one there and felt totally "healthy" in comparison. I just don't want to be sick. I hate it. I know there are other people sick, but most of my friends aren't sick and are living normal lives. EAting out, not thinking about there next meal or whether they will be sick. I am wasting away!

I just really hope I get some answers soon. I was SO very happy to finally find a concerned doctor. He spent an hour talking to me and he will look into everything I know.

THanks for listening. I will keep you posted.

MOnica

happygirl Collaborator
happygirl
Posted

Hey Monica:

Just wanted to give you some words of encouragement for the prep. I promise, its not that bad! I've had three colonoscopies (one in November), and they really aren't that bad. Like Patti said, the prep is the worst, and its really just an annoyance more than anything. I've had both the "jug" and the one you have---and that one is much easier. Keep us updated on how you are doing, please!

I was in the same position that you are in right now, this past summer/fall/winter. They still don't know what my "problem" really is. Its not unhealed/gluten related, as my bloodwork and biopsies are consistently clear. Best of luck......

Laura

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