Ideas? Moving forward.

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I have had a lot of time to think. One thing that came up was maybe having a nerve conduction study would be a good idea now that the sacral neuromodulation has been tried and did not work.

I know that there are only a few other tests that can/should be done before going through with an ostomy for myself but the nerve study is something that got me thinking a lot this week.

Anyone else had a nerve study?
 
If you are up for it and your doctor will approve why not

Wishing you the best outcome of all of it.
For wat it's worth I knew two young people with ostemies that were living well and comfortably
 
Another big thing my mom brought up tonight was that several people that we know who have an ileostomy need supplemental nutrition after.
Three of the four people my family knows have feeding tubes.

That is something I will have to talk to my doctor about.
 
Do whatever you can to avoid a feeding tube. My mother had one and it brought its own set of new problems. It is best avoided.
 
@ThatFLGuy
ThatFLGuy said:
...One thing that came up was maybe having a nerve conduction study...

"Electromyography (EMG)":
In my experience, this is the first thing that neurologists want to do. Since they have not proposed this for you, I suspect that they are not appropriate for your condition.

I have idiopathic pain of skeletal muscles all over my body. That is, "pain of unknown origin". I have had several EMG's by several neurologists. They also took a small plug of skin out of my leg to count the nerve density. No conclusions from all that.

My wife has had several EMG's to find the cause of her progressive weakness. She even had a biopsy of her thigh muscle and DNA study. They think she has a form of Muscular Dystrophy called IBM (Inclusion Body Myositis). Again, this is a skeletal muscle problem.

Sorry, not much help for your condition. :(
 
Well the experience for me is that my first GI Dr didn't want to run any tests , and only wanted to give meds that ive already tried and not only didn't work but caused a few unpleasent/unwanted side effects.

the only tests he did was endoscopes and colonoscopies only to find the same issues and the smart pill.
all 3 tests showed the issues and them worsening .

got a referal for a second opinion and that GI Dr wanted to order many tests including colonoscopy/endoscopy .But ran into a insurance snag, see my insurance covered his office visits but wouldn't cover any procedures at the hospital he's affiliated with even though his office was in that very same hospital go figure.

so i had to find another GI Doc locally to perform the scopes and send the results to this new GI Doc. I found one with no problems.

At the beginning of seeing this new local DR. he said he could fix my GI issues with surgery. I'm like ok i"m all ears, was all ears until he mentioned a colostomy and said it'll fix me.

I do have some bowel issues but none that warrant a colostomy at this time I'm thinking. He gave me a month to think about this. I went back with a unsure answer to give. He was accepting of the answer but was still atament about the colostomy and it was the only thing he could/would do for me.

I then had my GP refere me to yet another GI Dr. for yet another opinion . got the appointment made it was a virtual visit . During the appointment this Dr asked a bunch of questions , and gave me a few new and less evil then a colostomy. This new Dr said sure a colostomy would fix things but not all of them .And it would be a last resort treatment , and offered either a NG/NJ or a JG feeding Tubes as treatment .

Basically whats going on is my stomach is always bloated,this is now gotten to the point where I actually have to pick and choose to eat or drink fluids. This means if i eat i cant drink fluids or i fill up quickly,its the same thing if i drink fluids its one or the other not both. I had to design a system that works mostly . I monitor my urine if it becomes to yellow and or i start feeling symptoms of dehydration i stop all food intake and drink fluids like water juices and gatorade to replentish electrolytes and vitamins from various juices and water.

Ive voiced my concerns about fluid intake issues to my urolgist he said its not the best system ive created but it beats having to get constant IV fluids 24/7 and as long its working just keep doing it.

Not only my stomache issues mess with fluids and nutrition , but also mess up my medications. I have days to where it feels as if ive taken too many of one of my meds for pain , I get pretty loopy or very sleepy and cant function . Ive told my pain clinic about it and not much they can do about it, but they're aware of this .

I went back to the local GI Dr per recomendation of this new Dr with her recomendations. The Dr totally disagreed with her and she works at a very well known hospital like world known. And he was stiil wanting to give me a colostomy. I told him only as a last resort after trying other things .
 
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