GI questions/articles for Doctor,...mito,,need help, Please!!

[Guest guest]

I do not know if there is an exact test for mito related problems. Most GI problems due to mito are faily common GI problems in healthy people (just mito people tend to have multiple problems and sometimes have them worse.) My daughter has literally been through the gauntlet on GI problems and testing. She has alot of problems with GERD, and irregular bowel problems. Right now we are dealing with a new one of possible delayed gastric emptying. For her she has had multiple endoscopies, colonoscopy, lots and lots and lots of stool samples, plus many die studies and ultrasounds. Plus she has regular bloodwork done by her GI (she also has liver disease). I guess it is the mito that just slowes the GI system down, hence causing all the problems. Although Grace has never had one, yet, I guess a gastric emptying study is commonly used with mito problems. Right now she currently is taking Prevacid for her Gerd, Actigal for her liver plus all of her other things for mito and related problems. We are also trying to make her food as small as humanly possible (mechanicaly soft) to see if this helps her digestion. This is probally innapropriate for an adult (Grace is not quite 2 yet.) I hope this is some help for you. Best wishes for you.

[Guest guest]

Hi,

Asher has the GI problems but we don't have a dx yet. As most of everyone on this board has probably "heard" from me, it should be in the next 2 weeks. I wish I had articles, etc on this. Hopefully, just telling him your symptoms would be enough for them to listen. I know Asher was very distended and could not eat b/c of being so uncomfortable to what they now believe is GI dysmotility. We ended up with a G-tube and he is in much much better shape b/c of it. He is on Alimentum (a predigested formula without long chain fatty acids) and he can absorb it so much better without all the tummy pains and bloating and gas build up inside of him. He has gained 2 pounds!

What I said probably wasn't too helpful, given that you are a grown up , but I thought I'd at least let you know our experience.

Good luck,

Anne R

[Guest guest]

Hello all,

Well, I am going to see my gastro doc. I noticed how many people

w/mito are complaining of GI problems. I have the exact same

symptoms as many of the posts I am seeing.

I talked to my neuro about how I noticed the mito people complain of

GI problems, and they have dx of 'motility disorder' et. He said it

was very important to tell the gastro doc that I have mito, and that

motility disorder can lead to gas, bloating, et., the exact symptoms

I have, plus malabsorbtion. So I see the gastro soon.

I need any articles, or advice on questions (for testing, et.) when

I see my gastro doc., that anyone can give.

Thanks in advance.

God bless,

Hazelpone

[Guest guest]

Hi ,

Thanks for the reply. It was helpful.

I guess what I am looking for is a way to make sure that the GI problems is

mito related. I see that many patients are diagnosed with diseases and it

is understood that this is from the mito, so I want my doc to look at it in

terms of mito as per my neuro. My gastro is most likely unfamiliar with

mito, though my neuro said to tell the gastro to feel free to communicate

with him when necessary. I hope I am making some sense here. ugh! Very

frustrating.

Thanks again.

God bless,

Hazelpone

Re: GI questions/articles for Doctor,...mito,,need help,

Please!!

> I do not know if there is an exact test for mito related problems. Most

GI

> problems due to mito are faily common GI problems in healthy people (just

mito

> people tend to have multiple problems and sometimes have them worse.) My

> daughter has literally been through the gauntlet on GI problems and

testing. She

> has alot of problems with GERD, and irregular bowel problems. Right now

we

> are dealing with a new one of possible delayed gastric emptying. For her

she

> has had multiple endoscopies, colonoscopy, lots and lots and lots of

stool

> samples, plus many die studies and ultrasounds. Plus she has regular

bloodwork

> done by her GI (she also has liver disease). I guess it is the mito that

just

> slowes the GI system down, hence causing all the problems. Although Grace

has

> never had one, yet, I guess a gastric emptying study is commonly used with

> mito problems. Right now she currently is taking Prevacid for her Gerd,

Actigal

> for her liver plus all of her other things for mito and related problems.

We

> are also trying to make her food as small as humanly possible (mechanicaly

> soft) to see if this helps her digestion. This is probally innapropriate

for an

> adult (Grace is not quite 2 yet.) I hope this is some help for you. Best

> wishes for you.

>

>

[Guest guest]

Hazelpone,

My son Lucas 8 years old is only suspected mito at this point. He had an abnormal frozen muscle biopsy. His GI problems have been of the most concern for him. He ate orally until about the age of 4. We did have to feed him though mainly pureed foods but he could eat a Mcs cheeseburger. Then all of a sudden things worsened terribly. He started vomiting 10-12 times after every meal. We ended up with J-tube feedings and also had an abnormal gastric emptying scan and was diagnosed with hypothyroidism due to pituitary gland malfunction. In October, we did 2 months of G-tube feedings because a repeat gastric emptying scan was normal and his J-tube was leaking terribly. (This is his second J-tube site after the first one developed a fistula.) He tolerated that for 2 months and then he started vomiting formula and developed feeding intolerance with returning to J-tube feedings. Currently he is back on 21 hour a day J-tube feedings, calcium levels and glucose levels were low on his last labwork, he can spend 3 hours whimpering without us really knowing what is going on, we have had to switch from Miralax to Milk of Magnesia in order to keep him unconstipated, and we have had to vent his G-tube due to gagging and wretching on what one doctor suspected as reverse peristalsis. (We have been emptying as much as 240 cc's in one day or as little as 30 cc's overnight.) We see the GI doc on Thursday for a 6 month follow-up but via his nurse he has told us he is out of ideas on what to do for Lucas.

I do hope your GI doc can help you to make you more comfortable and keep your GI system working at its optimum. I am glad to see you have at least one doctor who seems to understand what mito can do to your body. I hope relaying our experience can aid you in more knowledge when you see the doctor.

Best of luck,

Loriann

[Guest guest]

Hi Anne,

Thanks for the reply. Believe it or not, it does help. I hope I never have

to go to a g-tube, but eating daily and the difficult digestion makes me

wonder. I will use the inf.

Thanks.

God bless,

Hazelpone

----- Original Message -----

> Hi,

>

> Asher has the GI problems but we don't have a dx yet. As most of everyone

on

> this board has probably " heard " from me, it should be in the next 2 weeks.

I

> wish I had articles, etc on this. Hopefully, just telling him your

symptoms

> would be enough for them to listen. I know Asher was very distended and

could not

> eat b/c of being so uncomfortable to what they now believe is GI

dysmotility.

> We ended up with a G-tube and he is in much much better shape b/c of it.

He

> is on Alimentum (a predigested formula without long chain fatty acids) and

he

> can absorb it so much better without all the tummy pains and bloating and

gas

> build up inside of him. He has gained 2 pounds!

>

> What I said probably wasn't too helpful, given that you are a grown up ,

but

> I thought I'd at least let you know our experience.

>

> Good luck,

> Anne R

>