Trying to investigate my future procedures

[KEDASO]

Hi all,
As mentioned in the past week or so, I am new here. I have advanced CIDP, not ALS, but will end up much like you guys here.
I am dealing with Joel with what it will be like living with a trach/vent., as I have decided I will let them do it, as long as it will be a portable one like Joel's.
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But now I am asking about experience dealing with a feeding tube. But it will not be your usual one. This happened to me about 1 1/2 years ago, and I know it will happen again for sure next time. The CIDP invaded my autonomic system, and one of the areas it hit was my digestion system. I take 5 different pills now to assist the stomach "dumping". The nerves controlling my stomach no longer work, and when the food gets there, it "doesn't know what to do". So, I take pills to "dump" the stomach.
But what happened back then, was that I was losing a lot of weight, had total loss of appetite/nausea, and they worked hard with various medications to finally bring me around. But if I went below 150 lbs, they were going to put a feeding tube in. But, due to the fact that the stomach doesn't work right, they were going to put in a JEJUNAL FEEDING TUBE. They told me it will definitely be in my future. And they told me it would definitely have to be a jejunal feeding tube.
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=Does anybody here have experience with a Jejunal Feeding Tube?
=What are the pluses and minuses with it?
=Is it easy to work with?
=Is there alot of diarhea with it?
=Do you still end up losing weight with it?
=How often must it be changed?
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Some guidance here would be appreciated.
Thanks,
KEDASO
(Ken)

 

[brendapals]

hello Ken,

Sorry for all of the pain and anxiety you are having. I'm sure someone with way more experience with feeding tubes will be on this post soon.

From my experience as a nurse, the J-tube you are talking about refers to the specific site that it delivers nutrition to-the jejunem section of your intestines. Now, I was an ER nurse, not a gastro nurse, but I think depending on what prior conditions you have, the "dumping" problem, etc, it could be that your dr thought that the J-tube would work better.

I think the biggest problem with any feeding tube is the risk for infection. And the ones that I know of, the tube is changed either every month, or every 2 months, and also as needed, of course.

Just my insight, I'm sure there's a lot more info forth coming,
take good care,
-brenda

 

[joelc]

Good information Brenda.

I am not familiar with the type of tube Ken is referring to either, but I have had my PEG for almost 2 years with no problems or infections. I had the original changed after 18 months with a type we can change ourselves at home. We have made 1 change already because of a leaking balloon. The balloon is what holds it in.

Very simple and painless.

I take enzymes to help the digestion problem.

 

[rose]

Hi Ken,

The J tube was discussed with me by my gastro doctor. He said it goes through the stomach into the small intestine. The way he described it is the opening you would access is in the stomach area, but then, a small tube is run through the stomach into the intestine, so anything put into the tube, actually doesn't go into the stomach at all, but directly to the small intestine where absorption takes place. I'm on Reglan, its been much more effective for me than my doctor or I expected as far as stomach emptying.

 

[rose]

Oh, about the drawbacks to it, I don't think it differs in care from a PEG, my doctor said it is time consuming to get the nutrition in, it does not go quickly.

 

[KEDASO]

Hi Rose,

That is what I am on now, Reglan, along with Ranitidine, and Erythromycin, (which is prescribed specifically for the side-effect of emptying the stomach).
I am also on for nausea: Zofran, Tigan, and Marinol, (THC), which also increases appetite, along with Megase.
But they told me eventually, I will probably end up the the J-Tube.
=Is there alot of diarhea involved?
=Do you still end up losing weight?
=Are infections easy to come by, from what I hear?
Thanks,
KEDASO
(Ken)

 

[KEDASO]

Thank you Brenda and Joel,

What about the questions I just mentioned to Rose above.
I am not that acquainted with feeding tubes, I just know the doctor explained that since the stomach wasn't working, he would bypass it and put it in the jejunem.
But I don't know much more, except you pour liquid into the tube.
=What happens when you do get an infection?
=Is there much diarrhea involved?
=Do you still lose weight and not get full nutrition?
Thanks,
KEDASO
(Ken)

 

[joelc]

Ken, I am beginning to think you are not reading what people are writing or you have chosen not to believe what is written.

Keep it clean and you will not get an infection. If for some strange reason you do manage to get an infection it is easy to deal with by keeping the site (stoma) clean and using something like polysporin.

You will not loose weight or get diarrhea unless you deliberately consume too little food or consume something your system does not like.
Most people gain weight after getting their feeding tube.

Have you searched this forum for feeding tube or PEG? There are a lot of posts with very good information.

Happy reading!

 

[rose]

Ken, I think that diabetics are the most frequent recipients of J tubes. You might be able to learn more of the specifics about them on a diabetic forum. As it was explained to me by my doctor, other than the internal routing of the tube actually depositing nourishment into the small intestine, rather than the stomach, it is the same as the PEG, (about which there is a lot of information and practical experience written on this forum). It seems like I remember Mark Breton saying his wife was having hers switched from PEG to J, I do not know if this was done yet, she was quite sick from a blockage.

I'm doing well enough with the reglan, and there is no talk, from the digestive perspective, of me having to any other intervention done at this time.

However, before you go this route, has your doctor discussed a procedure where you're scoped, and the sphincter muscle which closes muscle from stomach to intestine is dilated with an inflated balloon, and then injected all around with botox? (and then the balloon taken out of course). This is not invasive surgery at all, and would have been the next step for me, if the medication had not helped enough. He said this method has very very good results for many, and can last several months or longer.

 

[Dana Razo]

Joel,
How are you? My husband has two questions:
*How long after diagnoses did you need your feeding tube?
*Can you still eat normal food as well with the tube?
Thank you for the information
Dana

 

[Lorie]

Yes you can!
Lorie

 

[Dana Razo]

Wonderful news..... Thank you Lorie

 

[joelc]

Joel,
How are you? My husband has two questions:
*How long after diagnoses did you need your feeding tube?
*Can you still eat normal food as well with the tube?
Thank you for the information
Dana

Hi Dana, it was 1 year after diagnosis that I got my feeding tube and I used it to supplement up until I got my trache and vent last summer. Now I don't use it at all, I eat all my food by mouth.

So yes, you can still eat by mouth as neither a PEG or trache and vent prevent that. The only thing that stops you is choking or aspirating food, but that is a separate thing from getting a PEG or trache and vent.