I wasn't lost, just been sooooo sick
#73180 - 05/25/04 08:58 AM
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Jerryn
Reged: 02/22/04
Posts: 42
Loc: New Brunswick, Canada
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Hi all. Dealing with so much the last few weeks and I am one who holds way too much in. Been hospitalized with unbelievable terrible pains that they cannot put a finger on up here. These pains come on when there are days I don't eat a thing. Drink soy milk and water. Every time I try to increase my fiber intake in any way whatsoever, I end up taking 2 steps or more backwards. I've tried so many fiber supplements, I can't count. They have tested me for gastroparesis as I feel so full on even 1 slice of toast, and I battle nausea vomiting and severe bloating on any size meal. HELP! I know you're not doctors but your kind words really help. I need to gain back some of my weight as I am a thin man and less 40 lbs. is not good. I feel so depressed as I cannot do much with my precious 10 year old daughter. Makes me cry and hey, I'm 45 and a man and NOT afraid to admit that. Thanks
Jerry
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Jerry?
#73189 - 05/25/04 09:21 AM
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Bevvy
Reged: 11/04/03
Posts: 5918
Loc: Northwest Washington State
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Wow; you sure have had a time of it, haven't you!?
Jerry, first off, lets clear the air about one thing: you're not drinking coffee, are you? I had daily cramps -- 24/7 -- until I finally gave it up. Then I instantly got better.
Okay, you don't drink coffee. Good. How about those SFS: You said, "Every time I try to increase my fiber intake in any way whatsoever, I end up taking 2 steps or more backwards." I assume you meant your soluble fiber supplement, yes? Well, it could be that your system is extremely sensitive to the SFS like mine is. I was having terrible problems as well -- maybe not as bad as yours, and certainly didn't send me to the hospital, but I had terrible bloating and extreme constant gas, non-stop, then URGENT D at the worst times (standing at the service counter at the Post Office).
I had to cut out the SFS for awhile. I'm getting ready to start taking it again, but just a little. (Frankly, I'm scared of it now.)
Everyone has their own tolerance level, and it sounds like you reached yours a long time ago. One gal on the Boards is 8g/day, another is 10. I'd try dropping back on the dosage a little and see how you do.
Good luck,
Bev
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<img src="http://home.comcast.net/~letsrow/smily3481.gif">Bevvy
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To Bev
#73200 - 05/25/04 09:53 AM
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Jerryn
Reged: 02/22/04
Posts: 42
Loc: New Brunswick, Canada
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Quote:
Wow; you sure have had a time of it, haven't you!?
How about those SFS: You said, "Every time I try to increase my fiber intake in any way whatsoever, I end up taking 2 steps or more backwards." I assume you meant your soluble fiber supplement, yes?
Thanks Bev.
And yes I sure have had a time of it. Soluble and insoluble fiber both cause extreme pain and nausea/vomiting and lack of appetite. That is where they came up with the gastroparesis diagnosis. I had a gastric emptying test done on Friday. Results should be in later this week. The technician showed me on the computer how slow my stomach contractions were in the 4 hour time frame of the test. The percentage of content that was still in there after the 4 hours was VERY high. I dunno, they are now at a stage where they strongly believe that they damaged the vagus nerve when I had my Nissen fundo last April and thus causing the delayed stomach emptying. 3 people from the hospital, one a dietitian, all explained to me that if one has gastroparesis, fiber intake must be decreased, eat several small meals and non fat of course. I am currently on domperidone 20 mg's 4 times a day ( a motility drug) It is at least giving me an appetite to want to munch and it moves things a long albeit, slowly. Aren't I a case study?
Jerry
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I too am on 20 mg of Domperidone...and it's making me lactate, of all things...
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Jerry
#73383 - 05/25/04 03:42 PM
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Linz
Reged: 09/01/03
Posts: 8242
Loc: England
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Oh boy! You are having a hard time of it, aren't you. You say even a slice of bread makes you feel full, so how about just trying to eat a mouthful every hour or so? Something like plain cooked rice or oatmeal or rice pudding (see the recipe index).
And maybe a tiny amount of SFS would help.
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Thanks for all your thoughts. I tried even a small glass of prune juice last night and suffered all night long-AGAIN!!!  I am trying so hard. Even getting accupuncture through a NAET program at a local Natural allergy clinic.
Here's all about the NAET on this link if anyone is interested. http://www.naet.com/ It really helps, but when I try anything to increase my fiber as I sai, I get such intense pains. Unbearable 
Jerry
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Jerry
#76390 - 06/04/04 09:16 PM
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Dear Jerry,
You would be amazed how many people suffer just like you. I am the owner of a support group for patients with gastroparesis, and you could just plug your name into some of the bios and it would be the same as yours.
The dietary suggestions for patients with gastroparesis are low fat/low-no fiber. The fiber you are introducing into your system is part of the problem. Since fiber is harder to digest, it just wants to sit there causing you even more nausea or you throw up.
I have just about ANYTHING you can think of in relation to gastroparesis in one place. I have areas for tests/procedures, physicians (motility doctors), medications, GP diet information, links to just about every GP article you can think of, etc. It's one stop shopping for GP info.
I have suffered with gastroparesis for nearly 4 years, and I'm on tube feedings into my small intestine and IV therapy/medications through a central line. I have an extremely severe case. I'm not the "norm". The last time food stayed down was June 30, 2000.
If you are interested in checking out the site http://b7.ezboard.com/bbellybusters You have to apply, but all that apply are accepted without questions. I figure if people have found the way to my site, they must be really sick!!!
The funny thing about all of this is a administrator for the BellyBusters site came here looking for recipe ideas that would take little change to make them GP friendly. In the process of looking for the recipes, she found all of you suffering with gastroparesis and no real answers.
Look forward to getting to know you (we have other male members too).
Bethellen
PS: What doctor do you see for the gastroparesis? The only motility doctor I can think of off the top of my head that treats GP patients is Dr. Tougas. You can get more information about help in Canada by contacting GPDA which is headquartered in Calgary, Alberta, Canada
Edited by Bethellen (06/04/04 11:52 PM)
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Jer,
Sweetie, my thoughts are with you.
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Daisy
"Sometimes you are the Windshield, sometimes you are the bug".
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Meds?
#76460 - 06/05/04 12:41 PM
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Are you on any medications?
I was kinda like that on Wellbutrin. God was I sick and wanting to die. I lost 20 punds the first month on it and thought I was going to faint all the time plus of course my stomach shrunk so I couldn't eat much.
Other than that stress can get you really bad. When I was first sick with IBS I was sick on water!!! I kept forgeting to eat and to scared to because of the pain and then the D. I tried a soulable fiber at the time but it didn't work plus I should have tried the tiniest amount because I was so sick that I couldn't have handled anything more than probally a 1/8 of a teaspoon a day at the most to start with.
Remeber white rice is a soluable fiber and about one of the only ones that really doesn't cause gas. Though the B.R.A.T. diet is good the bananas constipate but cause gas, apples are also on a list that can cause gas and I sometimes toast makes me have gas too. I know it's kinda not what we our taught here but I had surgery last week and they warned me against eating these foods for a week cause it can cause gas and make me feel like i'm in horrible pain.
Hope you feel better and I know it's hard but try to calmn down and relax more through yoga and my personal favourite listening to classical musics with ocean sounds while I sleep (repeat all throught the night on my cd player). I wake up more calm in the morning.
I hope that I was some help.
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Thanks Daisy
#76840 - 06/07/04 09:46 AM
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Jerryn
Reged: 02/22/04
Posts: 42
Loc: New Brunswick, Canada
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