Re: Home from Cleveland

[Guest guest]

,

I too am glad that you are home and that you took the time to let us know. I'm

sorry that you have been thru so much and have so much more ahead of you.

Hopefully, all this will settle down for you soon. I'm sure you prefer to have

more than Boost and do hope you can continue eating more regularly.

I'm going to push the old recommendation here. Rest my dear. I'm sure your

body needs plenty of it right now.

Alice

[Guest guest]

I am glad you are home, but it sounds like the stay was good and bad -

establishing with the GI docs, but not really solving your problems yet. I

think we all learn patience with mito, but sometimes it just takes too long

even with patience.

I will keep you in my thoughts and prayers.

laurie

> From: LILQT4U1984@...

> Reply-To:

> Date: Mon, 16 Aug 2004 15:18:19 EDT

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> Subject: Home from Cleveland

>

> My mom and I flew home from Cleveland today. I'm not feeling well and

> nothing has really been resolved. On the plus side I did get established with

> the

> Ped's GI at CCF and they had much better and realistic ideas for me. I have

> to

> return to CCF for 2 wks in Sept. for upper and lower manometry studies. I

> will also have biopsies taken for Celiac Disease. I was put back on a regular

> diet and taken off the Boost Plus. The GI doc. felt it was better for me to be

> on food. I'm being tapered off the Senokot onto Zelnorm and a double dose of

> Miralax. It's not working at all so far and that is really hard. I'm eating

> as well as I can and trying to mentally fight this battle and just force more

> food in even when I'm too full. There is still the possibility of trying

> Propulsid if the Zelnorm doesn't work as well as the Cecostomy after the

> motility

> studies are done. I'm still battling an UTI and have had bleeding which is

> very troubling after 2 antibiotics. I will be seeing my local doc. and having

> an ultrasound of my kidneys and bladder done. Appreciated your prayers and

> kind words while I was away.

>

>

>

>

>

[Guest guest]

Hi ,

I am so happy that you are finally home. I am sorry to hear that things aren't

resolved yet. I know how much you were and are still looking for answers, and I

hope that you will find them soon. It's good news that you did meet with the

Ped's GI and that you like their ideas better than the other options that you

were given.

Thank goodness you are finally off that horrible Boost Plus. Just try to eat a

little bit more each and every day. I know it is hard, dealing with the same

thing myself, but I know we can do it.!!

I hope the new meds start to work for you and that you get some relief soon. I

am concerned that you have another UTI and that you are also bleeding. I hope

they find the right antibiotic to kick that infection.

I will keep you in my thoughts and prayers as you fight this battle. Thinking of

you always. Be Strong!!

Hugs,

Ann-Marie

Home from Cleveland

My mom and I flew home from Cleveland today. I'm not feeling well and

nothing has really been resolved. On the plus side I did get established with

the

Ped's GI at CCF and they had much better and realistic ideas for me. I have

to

return to CCF for 2 wks in Sept. for upper and lower manometry studies. I

will also have biopsies taken for Celiac Disease. I was put back on a regular

diet and taken off the Boost Plus. The GI doc. felt it was better for me to be

on food. I'm being tapered off the Senokot onto Zelnorm and a double dose of

Miralax. It's not working at all so far and that is really hard. I'm eating

as well as I can and trying to mentally fight this battle and just force more

food in even when I'm too full. There is still the possibility of trying

Propulsid if the Zelnorm doesn't work as well as the Cecostomy after the

motility

studies are done. I'm still battling an UTI and have had bleeding which is

very troubling after 2 antibiotics. I will be seeing my local doc. and having

an ultrasound of my kidneys and bladder done. Appreciated your prayers and

kind words while I was away.

[Guest guest]

,

I am glad that you finally made it home. I am sorry that you are

going through all the bumps in the road lately. Take some time right now

to rest. I can't imagine how worn out you must be.

Smiles,

a

On Mon, 16 Aug 2004 15:18:19 EDT LILQT4U1984@... writes:

My mom and I flew home from Cleveland today. I'm not feeling well and

nothing has really been resolved. On the plus side I did get established

with the

Ped's GI at CCF and they had much better and realistic ideas for me. I

have to

return to CCF for 2 wks in Sept. for upper and lower manometry studies.

I

will also have biopsies taken for Celiac Disease. I was put back on a

regular

diet and taken off the Boost Plus. The GI doc. felt it was better for me

to be

on food. I'm being tapered off the Senokot onto Zelnorm and a double dose

of

Miralax. It's not working at all so far and that is really hard. I'm

eating

as well as I can and trying to mentally fight this battle and just force

more

food in even when I'm too full. There is still the possibility of trying

Propulsid if the Zelnorm doesn't work as well as the Cecostomy after the

motility

studies are done. I'm still battling an UTI and have had bleeding which

is

very troubling after 2 antibiotics. I will be seeing my local doc. and

having

an ultrasound of my kidneys and bladder done. Appreciated your prayers

and

kind words while I was away.