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Judy Devlin

Re:food Catheters

7 posts in this topic

Anyone out there on a feeding tube? What was the determining factor for being put on one?

 

I have CREST-diagnosed since 1991 and the gastro involvement is my biggest disability. Emptying bowels and sluggish absorption is getting worse. Many episodes of aspiring into lungs lately-very painful and disturbing. I already take two nexiums a day and eat my last meal by 4PM so that my stomach is as empty as I can get it before bedtime.

 

So I am wondering how bad does this have to get before one goes on a feeding tube as I see this as a real possibility for me down the road.


There are over 1,000 patient and caregiver stories on the main Sclero.org site.

Warm regards,

 

Judy Devlin

ISN Archive Committee Chair

International Scleroderma Network

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Hi there Judy

 

I'm on a feeding tube -- Percutaneuos Endoscopic Gastroscopy. Quite a mouthful eh! Excuse the pun.

I was placed on this treatment because I have an entire lack of peristalsis in my esophagus -- the food moves nowhere. I've had years of going through exactly as you mentioned but I had surgery to try and rectify regurgitation which only made the whole thing much worse. I began to lose too much weight and I dropped to 128lbs very quickly. I was sufferering malnutrition and would have developed organ failure if they had not taken the measure of inserting the tube.

I joined another organisation in the UK which deals with people on artificial nutrition and I got some very good information. Not everyone on artificial nutrition have a complete inability to eat, some actually combine liquid food with a little solid food throughout the day -- it's just that they can't eat enough to maintain body weight.

Now! from the experience I've gained and people I've met there are different types of recieving nutrition. There is an NG tube which goes into the stomach through the nose and you are fed via an external pump. There is PEG feeding which simply means you are fed through your stomach via an external tube which goes into your stomach via the abdominal wall and protrudes so you can attach it to an external pump -- then there's little old me. I have a PEGJ which is simply the latter but with a jejunal extension because I regurgitate. The other methods of recieving nutrition is called PN Parenteral Nutrition. This delivers nutrition directly into the main arteries through the chest wall and this treatment is mainly for those who cannot absorb food properly or have trouble with their bowels, ie Crohns disease etc.

I don't know which treatment would be suitable but I'm sure that the doctors will know if it is necessary to treat you this way. It is only sensible to anyone that if you are losing weight and have total inability or major problems eating that you should be consdered for this treatment. Either way, don't be too worried whatever they do. I manage quite well and I'm probably in much better health now than I was trying to eat normally. I'm getting all the nutrients I need without the pain and it really doesn't stop me from doing anything.

If you want any more info, please email me personally and I'll try and explain things further.

Hope this has been of some help and I wish you well whatever you or they decide!

 

Much love

Barbs xxx

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Hi Barb,

Thank you for all the info. I have heard of people living better on a feeding tube for quite a long time.

 

I barely weigh 110 pounds but that's been pretty steady for a few years. I have turned to ensure for daily nutrients as any fiber-fruit, veggies etc., absolutely kill my gut. I think because my body can no longer break it down which then causes major obstipation -blockage- more pain and then after mega doses of milk of magnesium I explode LOL! But it is no way to live as I have very little control as to where the explosion might take place. Yuck.

 

My gastro seems hesitant about the food tube and I honestly believe it is because of my only having medicare insurance. My kidney doctor is trying to pull a few strings but I really believe our healthcare system is in crisis and many of us here do not get the treatment we need when we actually need it.

 

My gastroenterologist did say that should I get a high fever, extreme stomach pain and get in crisis mode I would get one immediately. So I think I have to wait for things to get worse. Just shouldn't be like this.

 

Thank you again for the information. Now I'll do some more research as to which might be better for me and I'll take the printed material to the doctor.


There are over 1,000 patient and caregiver stories on the main Sclero.org site.

Warm regards,

 

Judy Devlin

ISN Archive Committee Chair

International Scleroderma Network

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I know of a link to an online website for people on enteral feeding.

I don't know if you can access this website from outside the uk but if you would like to send me a Personal Message (just click on my name and it will take you to my profile page--then scroll down to the communications box and click on PM), I will send you the address. It may provide you with some very interesting information.

 

Best of luck

Barbs xxx

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Mmmm! That should be a pretty straight question but in all honesty I've suffered more constipation than I've ever had in my life. The reason I think is that I drink far less than I should. They changed my liquid nutrition to one with lots of fibre and there are occasions when I have to dash to the toilet but very rarely.

I used to have no worries in that particular department but since starting enteral feeding I seem to have more problems in that area. I also think that sclero has something to do with it too -- slow motility in my gut.

I take a liquid laxative but sometimes all this gives me is pain, so I also use suppositories -- sorry about the subject but I'm trying to be honest with you.

All in all, I prefer to be in this position rather than losing weight and starving. My life has improved so much and I'm almost back to my old irritating self, so my hubby says!

Good luck and don't worry too much. If you need any further info, just ask!

 

Love

Barbs xx

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