hello

[Micheline_h]

It has been some time since I last posted about me. So I will try to keep it simple. I am living on my own now. I had my breathing tested last month and has gone down to 65%. I have not been eating (well once a week and an ensure) due to stress and no interest and the dreaded “accidents”. My home support lady says “it’s becoming an issue”, I’m sorry, I can’t poop on command… Yes my doctor knows . I had an appointment for a feeding tube and colosmty (sp) but the surgeon turned me down. I am seeing my GP tomorrow to see if we can get another one. I think that’s it at the moment.

Micheline

 

[BethU]

Micheline ... I'm sorry you are having these problems. A PEG tube is a great idea, but a colostomy seems extreme, unless there is colon cancer present or other urgent medical issues. I don't know your medical history, but if constipation is the "issue," there are many remedies. The muscles in our colons are among those that weaken with ALS, so we have to get crafty and get control back with other means.

My mother had a colostomy, and they are much more difficult to handle than a PEG. If you need one to save your life, that's one thing ... but an optional one for a minor matter is another. Plus, resectioning the bowel is a long, complicated surgery, and with an FVC at 65%, I think any surgeon would be reluctant, except as a life-saving measure, and even then might consider the surgery too dangerous.

Good luck tomorrow.

Perhaps I am misreading your post. If I am, I apologize. If I'm not, then I'd suggest going for the PEG as soon as possible, and talking to your doctor about remedies for your other problems.

 

[Micheline_h]

The main reason is because I do live on my own and I have no help outside of my home support which is limited hours per month. My family doesn't want to help anymore, and I am trying to hold my own until it is absolutly time for a facility. That is what I wanted from the beginning so now I need to find ways to make it happen. I hope you understand what I am saying Beth?!

 

[flyingaseagles]

Micheline h I am sorry things are so hard for you . I just can't imagine having to do something like this on my own. Do you have a nurse to come by and help at anytime? The feeding tube is a good thing to help keep you strong. Also when you don't feel like eating you don't have to force food down LOL

 

[Micheline_h]

My nurses come by 2x a week. I am seeing my gp today to see what else we can do. I got the feeling the surgeon figures its teminal why bother attiude. He ask how fast the progression, but since I can swallow he said no...hoping my dr will kick his butt

 

[liz]

Hi Micheline -

Glad you're back. I think you need to get the PEG before your breathing gets too bad for you to have the procedure. Where's that social worker that said you'd be OK on your own? I can't believe anyone thought 2 days of help per week would be enough.

Liz

 

[crystalkk]

Micheline,

Do you have any other help besides the nurses coming 2 times per week? How are you managing? I hope your GP kicks the surgeons
butt also......

 

[Micheline_h]

I have home support 4x a day. other than that nothing. .I will fill you in later after my appiontment

 

[Micheline_h]

the dr is going to wait 2 weeks, talk to the first surgen and re try another one.

 

[lydia]

I hope you find some resolution, and soon!

Lydia