Myositis UK

P.E.G. (Percutaneous endoscopic gastrostomy)

" Percutaneous endoscopic gastrostomy is an endoscopic medical procedure in which a tube is passed into a patient's stomach through the abdominal wall, most commonly to provide a means of feeding when oral intake is not adequate"

I have just returned from a visit to Neuro Centre where I saw my specialist physio. She is very helpful and we discuss no end of topics related to my I.B.M. Today she once again got on at me about my loosing weight and got a Dietician to talk to me. I do have dysphagia but feel it is under control. I already drink a Fortisip each day and by my reckoning eat a balanced diet. I have put my continued loss of weight down to loosing muscle through I.B.M. She is concerned that with no reserves of fat I have no resistance to fight off infections and this can effect the organs which could be serious. Once again she suggested having a P.E.G. fitted I really do not want one. My consultant is keen as well. Has anyone else had a P.E.G. fitted and was it successful?

Whilst considering this I have taken on board various suggestions from the Dietician to increase my weight and have to go back in 6 months to see them both. If I don't manage it I know I will be under pressure to have a P.E.G. fitted. Any advice? thanks Rita

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Have you considered getting a throat diliation? When I could no longer swallow, I had it done and am still doing quite well. A P.E.G. tube was suggested to me, but there are other options.

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Thanks for the thought Bon-bon. As I feel that I have my swallowing under control now, following three meetings with Speech therapist where they came up with some helpful suggestions, I do not feel I need any intervention at present. Obviously if things change then I will reconsider.

Pleased that you are doing well now.

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Hi Rita I have IBM and I had a PEG fitted just over a year ago. I was told by SALT years before I would need one, but like you I was not keen. I went for dilatation of esophagus but to no avail, there are other options but I couldn't try anything else as the dysphagia effects the first part of my swallow as I understand there are three stages to swallowing.

Unfortunately I have not done very well on the PEG even though I was told that it's a so easy and I'll soon gain weight etc etc but doesn't mean to say that it will be the same for you. I have never gained weight I had an issue with severe nausea for months and due to other unfortunate issues I've had this year I've lost more weight I now weigh 6 1/2 stone.

All the best Rita

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I was reluctant to have a similar thing (I ended up with a PEJ) but I had an NJ tube for 8 weeks (4 weeks as an inpatient and 4 weeks following after discharge) and it was a lot of hassle so got a PEJ which definitely helped me get adequate nutrition following three months of not eating due to severe dysphagia and stomach pain. I think having adequate nutrition definitely sped up my recovery so I don’t regret getting it. It has definitely helped with my muscle rebuilding the past few months. I gained 10 kg in two months after being very underweight because I lost a lot of muscle and a lot of fat from dysphagia and SIBO.

I’ve had it for 3 months and now my swallow is mostly normal so I am now on the nutrition drinks and normal food so no longer use it. Dr told me to keep it in for a bit until they are certain I am stable i.e. I no longer lose weight and my muscle strength continues to improve (which includes swallowing muscles).

So whether you get one depends on:

1. If your current regime means you are not losing weight. Even if weight loss is due to IBM you need to eat much more to enable the body to have the energy and building blocks to minimise muscle wastage. If you are losing weight you will need to find a way to get extra nutrition.

2. Whether there are alternatives you would prefer that enables you to get adequate nutrition.

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Can anyone add to the message I posted six months ago? I did get some helpful comments then but wonder if anyone else has now had to undergo a P.E.G? I am booked to go back to Neuro Unit at the end of May and just know they will go on about my weight. I have not managed to put any on but on the other hand I have not lost any and stayed at seven and a half stone for about a year!! they want me to be eight and a half stone. No chance. I am still very reluctant to have a P.E.G. and really do not think it will benefit me. Does anyone have any comments to add to what was discussed previously? Please let me know. thank you. Rita

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