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 Post subject: gastroparesis
PostPosted: Thu Jun 30, 2016 8:49 am 
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Joined: Sat Mar 29, 2014 11:45 am
Posts: 1836
Lately, gastroparesis has been making my life difficult. Managing medications, diet, and protection is becoming increasingly challenging. I soiled myself several times during our vacation because I clumsily managed my medication schedule. Fortunately, Nullo did its work, and nobody, including my wife, suspected. A low residue meal (the recommended GP diet) without a stool softener always gives me a colon blockage; eating enough fiber (salad) to keep my colon working makes me vomit and gives me a bellyache even when I manage to keep the food down. Too much stool softener can give me diarrhea, which also causes an accident. The erythromycin/ranitidine combination works, except when it doesn't work, which notifies me that it has stopped working by giving me a bellyache and a bowel accident. Thanks for letting me vent.


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 Post subject: Re: gastroparesis
PostPosted: Thu Jun 30, 2016 12:20 pm 
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Joined: Sun Oct 20, 2013 3:45 pm
Posts: 1943
Location: North Carolina - Raleigh area
Patrick, if anyone has deserved the right to vent it is you, so feel free to vent away. If I were in your shoes I would vent much more.

Your life is much harder and complex than mine and I am unqualified to offer any advice. However, I have admired you and your strength of character since I first began reading your posts. Don't look back and keep looking ahead, focusing on the positive. Sometimes that is all that we can do.

Feel free to vent some more, either here or by PM. I'm always available to listen.

--John


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 Post subject: Re: gastroparesis
PostPosted: Thu Jun 30, 2016 1:35 pm 
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Joined: Mon Jan 27, 2014 1:29 pm
Posts: 850
Patrick, years ago (on a different forum), I called you an inspiration - it's still true.

W.


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 Post subject: Re: gastroparesis
PostPosted: Fri Jul 01, 2016 5:54 pm 
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Joined: Sat Mar 29, 2014 11:45 am
Posts: 1836
Thanks all for your support.

Catching up on developments while I was away has led to some interesting situations. My GI specialist moved to Colorado while I was gone, and my family physician told me to stay away from local gastroenterologists, because they would be incompetent to manage my case. I called Pittsburgh to get a transfer to one of their staff gastroenterologists; I'm still waiting for a reply. Seems they all checked out early for the holiday.

While I was gone, my urologist's office called. I had thought I was on a two year schedule; however, the nurse told me it was a one year schedule, so I'll see him on 28/7/16. He may just pat me on the head and tell me to return next year, or he may order tests.

The combination of gastroparesis plus neurogenic bladder makes for an interesting challenge. Although I am familiar with bladder spasms, GP gives me colon spasms also, and, when the bladder spasms get bad enough, I could swear that they are giving me rectal spasms too. They are not yet 'gimme my morphine' pain, but I can see them getting worse as time wears on.

Other than driving on strange thruways in bumper-to-bumper traffic at 70+ mph, the most challenging aspect of my vacation was smiling and nodding to assorted tablemates about the wonderful food, when my belly was in full rebellion, and locating the nearest handicapped restroom was a high priority.

Thanks again. Your welcome makes me glad to be back.


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 Post subject: Re: gastroparesis
PostPosted: Sat Jul 02, 2016 9:09 am 
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Joined: Sun Aug 09, 2015 1:07 pm
Posts: 370
Location: Midwest
Patrick,
I cant imagine what you go through on a day to day basis. For me its hard enough managing what I have going on. Like Wetter said, you are truly a inspiration, that is for sure.


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 Post subject: Re: gastroparesis
PostPosted: Sat Jul 02, 2016 10:51 am 
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Joined: Sat Mar 29, 2014 11:45 am
Posts: 1836
You compliment me far more than I deserve. We are an adaptable species; I simply do the best I can to minimize disrupting the lives around me and get on with living. Being able to vent here makes living with me much easier for my family. I am indebted to you.


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 Post subject: Re: gastroparesis
PostPosted: Tue Feb 14, 2017 1:42 am 
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Joined: Mon Feb 13, 2017 6:08 pm
Posts: 23
I know this is a old thread, but I just wanted to let you know I also have GP. Did they dx you with a intestinal disorder seperate from the GP?


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 Post subject: Re: gastroparesis
PostPosted: Wed Feb 15, 2017 12:20 pm 
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Joined: Sat Mar 29, 2014 11:45 am
Posts: 1836
roadracer,

To my knowledge, GP is my only diagnosis. However, I was told that the spinal nerve injury which accounts for my bladder incontinence is also affecting my bowel control, and that I should pay attention, because surgery may be indicated over the next few years. That would mean a stoma and a belly bag, which I want to avoid for as long as possible.


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 Post subject: Re: gastroparesis
PostPosted: Wed Feb 15, 2017 10:55 pm 
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Joined: Mon Feb 13, 2017 6:08 pm
Posts: 23
Have you seen a neuro-gastroenterologist, neuro-urologist, and a neuro-muscular dr, at any of the large medical centers?
I dont understand how they can be talking about a ostomy or surgery when you dont yet have a proper dx to support that? I would question that! While GP and the bowel issues could have the same underlying cause, they each require a different dx.
I assume you have had a abnormal gastric empty test, and experience the nausia/vomiting/pain caused by GP? Have you had the smart pill test?
Are they not able to fix the spinal problem? Many people who experience incontinence due to spinal problems are cured after surgery to correct that.


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 Post subject: Re: gastroparesis
PostPosted: Fri Feb 17, 2017 12:54 pm 
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Joined: Sat Mar 29, 2014 11:45 am
Posts: 1836
I have had three gastric emptying tests, all positive for GP. I go to the GI and urological services at a large teaching and research hospital. Periodically I get spinal taps and whole body MRIs to keep track of the spinal injury. The most threatening aspect of gastroparesis is that it can disturb the liver enzymes and cause starvation. At that point the patient must be given parenteral nutrition. (knock on wood) So far I'm keeping my weight up, although it is difficult. I'm on erythromycin plus ranitidine, which make my stomach do its duty. However, the (expletive deleted) pharmaceutical companies are withholding erythromycin from the market, so that I must wait 10-14 days for my prescription, and, lately, the cost has jumped exponentially. My insurance is covering an ever-decreasing percentage of the bill. Without that medication I will absolutely begin to lose weight. Thanks for letting me vent.


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