Feeding tube in different location.

[chally]

I am going in for feeding tube at end of the month.
After talking with a gastro RN and expressing my concerns about my stomach placement and having a RIG vs PEG she mentioned a tube right into the Jejunum which I understand to be the small intestines.
We were talking about this because as I look down my stomach not only is there now a bulge but on the left side of this bulge it sticks out maybe 2 in. more then the right side. This concerns me as I am thinking my diaframe is weaking and dropping down pushing my stomach down.
The RN said if this was the case then a Jejunum tube would be best.
Has anyone got this down? How much more involved is it?
As you can see my anxiety is through the roof.
Any experience here would be much appreiated . Thanks. Chailly
Also my FVC in October was 60 and I go for another on the 15 th to see what it is now my feeling is it's a lot lower as my breathing is bad .
I 'll be checking this post often as I am to be talking with RN this afternoon.

 

[Kathy K]

Chally,

I just have a regular PEG so can't help you, but if you don't get any answers here, there is a facebook group called Adult G tube feeding which may be able to help you. Best of luck.

Kathy

 

[affected]

Chally I have known people with the J-tube. Mostly with other medical conditions, but they are reasonably common.

They will give you a different formula that is specially for the J-tube.

It isn't really that much more involved and they are normally placed in radiology like the RIG.

I hope that helps a little

 

[lgelb]

Hi, Chally,

As Tillie mentions, J tubes are fairly common. Is this being done in radiology? You will want the consent form to allow for insertion of a J tube if needed so a 2nd procedure is not required to get your tube if the RIG isn't possible. But I would still ask that they try for the G tube first, to see if it's possible, for the reasons below. In either case, diameter of the tube is a big thing in getting enough nutrition, so ask for the biggest tube that your anatomy permits.

J tubes are smaller, the stomach addresses its contents differently, and the small intestine doesn't expand as the stomach does, so "real food" blends may be out, as well as crushed meds (may need liquids only). You will also need feeds over longer periods of time with a J tube.

That's not to say a J tube won't work fine -- just things to be aware of and get all the help you need to help manage in the ways that support your lifestyle.

Best,
Laurie

 

[affected]

Unless there is a real food blend specifically for J-tube they would be out as the formula are a kind of pre-digested food because the stomach is being bypassed.

I agree, if you can go into radiology with forms signed for RIG or RIJ it would mean all options are open for you.

hugs man

 

[BlueandGold]

Chally,
Did you see Dr. Vaslef at Duke? He does all the PEGs for Duke's ALS Clinic. I didn't want to travel that far so went to Ohio University Hospital. Biggest mistake of my life. Who did you see for the consult?

Vince

 

[chally]

Thanks all for reply, there's lot to consider and decisions to be made but first things first and that is breathing test next wed see what FVC is ( was 60 in October)
Then pre- op the next week then 27 th have dr examine me and say one way or other which I should go with the peg or rig.
So I am trying not to get to far ahead before freaking out.
Vince I did have appointment with dr V but like you the distance was to much.
I have been reassured by gastro RN the the dr @ the va is top in the field.
That's said they can't do rig's so I would then still have to travel to Durham nc va to get it done there. So as I said thank you all for input and I will be trying to take it one day at a time to keep the crazys @ bay. Wish me luck. Chally

 

[pittsburghgal]

Hi Chally,

The weakening of the diaphragm in ALS may cause the position of the stomach to move upward into the chest region, not downward. Having the RIG procedure is much safer in this case because the position of the stomach is visualized during the entire procedure using flouroscopy (xrays).

I wish you luck which ever route you choose.

Sharon