Gastroparesis advice

November 22, 2008

Hi I'm new to this group! Here is my story. I've had Gastroparesis

for the past 19 years. It is a managable disease for me though.

Somehow when I was away at college my stomach innervation got

damaged. I was extremely in to caffiene and was taking a lot of

ibuprofen for headaches. The doctors think that this caused the

problem. In one semester away from home my whole life changed. I

have found ways to manage this over the years and it took several

years to figure out what the problem was. My story is a bit unusual

because I do not have diabetis and my symptoms have gotten worse

over the years, but not as bad as most people. My nausea and pain

get worse when I have anything next to my waist or even when I wear

a tight bra. It makes it extremely hard to work anywhere. If I am

at home and wear extremely loose clothing then I am OK. I am a nurse

by trade but haven't been able to keep a job for the last 3 years.

You would think that drawstring scrub pants would be loose enough

but where you tie them causes my stomach problems. I get nauseas

and have pain to my chest and back. To get through 8 hours was

maddening and I would be throwing up by the end of the shift. I can

even get light headed and short of breath. This even happens if I

get new underwear from the waistband. The docs say that it is a

nerve problem in the lining of my digestive system that is

exacerbated when there is pressure to my abdomen, but there is

nothing to help it. I do take prilosec

twice a day and that does make it some better, but the problem won't

ever go away. So I want to know if anyone has a similar story with

any helpful insight. Also what kind of employment do any of you

have? It would be great if there was something that I could do from

home. My family is having hard financial times and I am willing to

work, I just want to feel better. Thanks for any insight, Stacey

November 23, 2008

How familiar your symptoms are to me. I have to be careful with my

clothing too; I wear a size or two larger in order to keep my upper

GI symptoms from increasing. They're already bad enough [grin].

My gastroparesis is mild to moderate, and depends entirely on how my

Sphincter of Oddi is behaving (diagnosed with Sphincter of Oddi

dysfunction and several other upper GI malfunctions 5 years ago).

Although I'm insulin resistant, I don't have diabetes. But I've also

gone on to develop neurological issues, one of which is orthostatic

hypotension. When I'm upright for too long my upper GI reacts badly

(nausea increases dramatically, my Sphincter of Oddi starts

spasming...), in addition to losing my ability to speak along with

other cognitive functions.

So you're not alone in this.

I have had to make changes to my work. I am a librarian and found

that I couldn't work as long a shift on the circulation or reference

desk since there was too much standing and lifting involved. I've

had to change job responsibilities so I can have more desk or sitting

down time. Fortunately I can wear loose and comfortable clothing all

of the time, even when I have to attend meetings. I do more training

but have worked out strategies so I can sit often enough to keep my

brain and upper GI functioning..

It's been hard at times, accepting that my body just won't tolerate

things the way it used to. I feel lucky that I've been able to

continue working as a librarian -- but I already know that I'll have

to find another job in a year or two, one that is completely desk

work and has less stress and less responsibility. My neurological

deterioration continues, even if I have my digestion under good

management. I may have to switch to telecommuting at some point.

I'm studying medical transcription so I'll have some good options in

another year or two when my body lets me know it's time for another

work change.

Being on SCD for 5 years has helped tremendously with my upper GI

symptoms. I still get symptoms of course, as I have functional

disorders, but I've learned which legals aggravate my upper GI. I

haven't had to take more than a few days of sick leave in the past 4

years, and that was to go to doctors' appointments and tests.

So you're not alone in this struggle, and you may find SCD helps a

lot. With some experimenting you should be able to find SCD legals

that work with your gastroparesis. I know it's not easy.

Kim M.

SCD 5 years

>

> Hi I'm new to this group! Here is my story. I've had Gastroparesis

> for the past 19 years. It is a managable disease for me though.

> Somehow when I was away at college my stomach innervation got

> damaged. I was extremely in to caffiene and was taking a lot of

> ibuprofen for headaches. The doctors think that this caused the

> problem. In one semester away from home my whole life changed. I

> have found ways to manage this over the years and it took several

> years to figure out what the problem was. My story is a bit unusual

> because I do not have diabetis and my symptoms have gotten worse

> over the years, but not as bad as most people. My nausea and pain

> get worse when I have anything next to my waist or even when I wear

> a tight bra. It makes it extremely hard to work anywhere. If I am

> at home and wear extremely loose clothing then I am OK. I am a

nurse

> by trade but haven't been able to keep a job for the last 3 years.

> You would think that drawstring scrub pants would be loose enough

> but where you tie them causes my stomach problems. I get nauseas

> and have pain to my chest and back. To get through 8 hours was

> maddening and I would be throwing up by the end of the shift. I can

> even get light headed and short of breath. This even happens if I

> get new underwear from the waistband. The docs say that it is a

> nerve problem in the lining of my digestive system that is

> exacerbated when there is pressure to my abdomen, but there is

> nothing to help it. I do take prilosec

> twice a day and that does make it some better, but the problem

won't

> ever go away. So I want to know if anyone has a similar story with

> any helpful insight. Also what kind of employment do any of you

> have? It would be great if there was something that I could do

from

> home. My family is having hard financial times and I am willing to

> work, I just want to feel better. Thanks for any insight, Stacey

>

November 23, 2008

welcome!!! I was tested but do not have this however nausea is/was

my main symptom and i'm thrilled I have no chest because even loose

bras will annoy still and i'm 10 months in and have scopes showing no

inflammation inside BUT my doc had me start (well he said an anti-

depressant to help raise seratonin levels) but i went natural with L-

tyrptophan (same affect but no side effects and not hard to come off

of) and my compounding pharmacist said L-Glutamine (as long as they

are legal )-I feel they will help you as my doc said he thought I was

still having problems because my insides are hyper-sensitive -sounds

like what your doc may be saying???? - can't believe they say there's

nothing you can do -i've giving up faith in most of them!!!!

hope this helps - I'm a full-time mom so cna't help with work info

sorry - good luck

Kim has gastroparesis amongst other issues i'm sure she'll have good

info for you

eileen 10 motnhs scd