POZ Community Forums
Main Forums => Pre-HAART Long-Term Survivors => Topic started by: AndyArrow on June 01, 2009, 04:50:11 am
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I drove down to Indianapolis on Friday to find out exactly what my test showed. I already knew from my doctors nurse manager that my test results were abnormal but didn't know anything more than that. Four hours after eating the irradiated eggs & toast 90% should have passed through my stomach. 10% or less is considered in the normal range. After 4hrs 53% had passed through my stomach leaving 43% still sitting there. This is considered moderate to severe gastroparesis.
Fortunately, while my numbers are bad my actual symptoms are very mild. So for now I don't have to take any new medications (Yippy!!!) and only have to make changes to my diet. :-\ The doctor actually recommended that I be on a two-part diet. One that is low fat :( but I need to lose a couple of pounds anyway and also a diet that is low residue. ??? I had never heard of a low residue diet before so he had to go over the basics with me. I've also looked it up on the internet, naturally and it doesn't sound like a lot of fun. He also told me to go see a registered dietitian so I'll have to find one of those in my area and see what type of menu they come up with for me to eat. I should also be trying to eat 6 small meals a day. Still, I don't have to take any more pills and nothing drastic so all it all I'm pretty happy.
So, is there anyone else out there on a low residue diet??
AA
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Hi Andy
No. No low residue diet here but I wish you the best with it. Let us know how it goes.
Joel
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Fortunately, while my numbers are bad my actual symptoms are very mild. So for now I don't have to take any new medications (Yippy!!!) and only have to make changes to my diet. :-\
So, is there anyone else out there on a low residue diet??
AA
No, I'm not on a low residue diet either Andy. Let us know how you do, when you get to see the dietition.
I also find myself eating 5 or 6 times a day, but a smaller quantity. I've been eating this way for several years now. I can't pack it away like I used to. I get to bloated if I attempt it.
Take care---Ray
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Hey Andy,
I've never heard of a low-residue diet. Please let us know what the dietician says. I'm sorry you didn't have the best test results, but no more meds is a good thing.
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Hey Andy,
I googled a low residue diet. It doesn't sound fun, but, all in all, not horrible either. Or course, the doc wants you on a low fat diet as well. That could be trickier.
I hope it helps you deal with this new twist in your health maintenance. At least it didn't involve more pills.
Let us know what the dietician comes up with.
HUGS,
Mark
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Thanks for all the kind words of support -- you all are great!
I've made some calls to area hospitals to find a registered dietitian but since no one seems to actually answer their phone anymore all I got was voicemail. Hopefully, I'll be able to set up an appointment with one of them soon and I'll let everyone know how it goes.
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I found a registered dietitian and she's going to send me out some forms and a food diary to keep for a few days before I go in. Next week she's pretty full up so I'll see her on 18 June.
She told me in most cases Medicare wont pay for a consult but since it was through my gastroenterologist they would try and if not she already talked to the financial department about getting a 30% discount!!! ;D
I love it when things work out so smoothly!
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Hey Andy,
I'm not understanding. I went to see a dietician a few weeks ago, and I believe they billed Medicare. Anyway, good luck with the food diary. Mine would be a disaster to look at if I kept track of everything I ate. :P
Luv
Betty
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Oh Betty, when she said keep a food diary my first thought was she was going to read it and just look at me and say something along the lines of "Are you really surprised you have gastro problems the way you eat." When I lost all the weight with my funky esophagus the doctors were encouraging me to eat anything and everything I could keep down. The higher in fat the better to pack on the pounds. Needless to say it easier to start eating poorly than it is to stop.
As far as Medicare goes she said that it will usually cover visits if it's because the patient is diabetic or has renal disease. Still they are going to try to bill Medicare first and only if the deny the claim will it come back to me.
Hugs,
AA
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Oh, that must be why Medicare covered most of my visit to the dietician (diabetes).
Yeah, I understand about it being really hard to stop eating poorly. I still haven't. I've cut down some, but it's just soooo hard to give up salt and chocolate. Good luck!
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I finally met with the registered dietitian on the 18th.
She was a lovely woman and took her time and was very informative. Having said that I still wanted to throttle her!!!! >:( But -- Don't Shoot the Messenger ;)
The gastroparesis diet she put me on has 3 steps ... but I'll skip right to step 3 which is the long-term maintenance diet. Fat is limited to 50gm per day, fiber should be less than 10gm and a multivitamin is recommended because of the food limitations.
She told me that because my stomach was so slow to empty fibrous foods increased the chance of bezoars forming ???. I never heard of a bezoar before in my life. Basically, its indigestible food that gets stuck in the digestive tract. I always thought fiber was good for you but while it helps push food through the intestinal tract it actually slows down the stomach. Which in my case is already too slow. :(
I have a nice little list of approved foods & a rather EXTENSIVE list of stuff that is off-limits. What I'll miss the most are the salads and all the beans/legumes. I usually have yogurt with granola and fruit in it ... but that is off limits too.
Today starts the new diet with 6 - 7 little meals. Wish me luck!!!!!! :-\
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Hi Andy
I sure do hope that this new diet works for you. I know that its hard to limit your food and you will miss the things you once ate and took for granted that they were ok. Chin up.
This might be where a food journal is a good idea. Or are you already keeping one? I forget.
Joel
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Thanks Joel,
I'm just complaining about little stuff -- I know in the long run this is for the best. My diet was horribel to start with so this is actually a blessing in disguise.
The dietitian actually gave me a few sheets to list all my meals and any problems that might come up so I'll be better able to keep track of things. She also told me I could call her with any concerns -- Simply a matter of old habits die hard.
AA
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Andy, good luck with the new diet. It took me a long time to change my diet when I became diabetic, and I bitch just because I have to limit sugar and carbs. I can't imagine what I'd do were I in your situation.
I know it can be done, and I know that you can do it. I'll be thinking about you.
Luv,
Betty
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Hello Andy,
Thanks for the update. Wishing you well on this new diet, I know a dietary change is never easy. Let us know how things are going.
Take care----Ray
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Hey Andy wish you luck on the diet.That sounds like a very short list of things you can eat and me on the other side of the spectrum I suspect they will be sending me to a dietitian soon for weight gain and high blood pressure and all the bad things going to have to learn to cook differently.Oh well such is life.I already got read by Betty for Saturday nights choice to drink one small bottle of wine instead of seeking mental health help payed for it Sunday.That first step is the Hardest been seeking options but don,t like 99% of them.Well I really would like to know what and how much allowed to eat.Your Friend
Scooter
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AA,
It sounds like you have found a very good dietician, giving you menus, and lists and journals. With that kind of support, you should have a good report at the doctor's on our next visit.
I once saw a sci-fi movie (maybe it was a cartoon ???) that showed the future and people popping pills for food. I wonder if I could ? or, do we absolutely have to chew?
Good luck on your new diet
Ronnie
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rondrond one of my new friends on facebook wanted to know how many pills I take a day so in three little piles of pills used copier an put on my facebook page some of us take more an some less I instant message them.Waiting for response.Sorry Andy for jacking your post.
Dwayn20
AA,
It sounds like you have found a very good dietician, giving you menus, and lists and journals. With that kind of support, you should have a good report at the doctor's on our next visit.
I once saw a sci-fi movie (maybe it was a cartoon ???) that showed the future and people popping pills for food. I wonder if I could ? or, do we absolutely have to chew?
Good luck on your new diet
Ronnie
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Feel free to jack away, Scooter. ;)
As far as how much ... well I can eat as much as I like as long as I spread it out throughout the day. I'm just limited in the types of food I can eat.
Anything with lots of fiber is bad for me. So some examples would be:
Plain white bread -- good, Whole wheat bread -- avoid
Fruits I can do all the summer melons, peaches. Most of the others aren't so good. All dried fruits are bad. I can't do apples ... but applesauce is ok.
All raw veggies are bad. Cooked veggies with a skin are bad, beans are bad, greens are bad.
Cooked veggies without skin are good (ie mashed potatoes).
The more refined/processed a food is the easier it is for my stomach to digest. This usually means most of the vitamins are lost so thats why I need to take a multi-vitamin.
Ron -- we can live without chewing. Remember, I used to have a feeding tube and the liquid nutrition was just pumped directly into my stomach. Trust me when I say that chewing is much better!!!! So, I don't like my limited diet but it beats a feeding tube any day!!!! :D