intro

[Guest guest]

, join our boston terrrier yahoo group!Are you saying you have boston

puppies?They would love hearing about them.I have two boston terriers!The

group I am in is Boston-Terrier@...'m sorry you have this

horrible disorder!What are you boston's names?

Melodie

Intro

> Hello Everyone,

> I'm from Texas. Been married 15 yrs,

> and no kiddos. Unless you count my animals.

> We have momma and daddy boston

> terriers. 4, 7 month old bostons and 6 babies

> that will be a month old tomorrow. We have

> 4 cats and 3 kittens and 1 mexican redheaded

> amazon bird.

> I was dx'd with fibro Febuary of last year by

> the ssi dr. Although i've had it alot longer. I

> also have CFS, carpal tunnel, arthritis, asthma,

> meralgia paresthetica, degenerative disc

> disease, sleep apnea, migraines.

> I hope to get to know everyone.

>

> Gentle Huggs,

>

>

>

[Guest guest]

Welcome Chiara,

Sorry you have to visit the site but like you, I am so glad it is here. My

vote for your next step is to see one or two more NSG's just to be sure you are

comfortable with the options. Depending on where you live, folks here may

have good suggestions for you. My daughter has had three detetherings. She is

17. If she developed bowel and bladder issues, I suspect we would all vote

for a fourth surgery but many here would not. It is so hard to be stuck with

these decisions. I would ask myself, " how will I feel if... " for each and every

possible outcome. How about family members? Do you have others to help you

with these decisions? Others here will fill you in on bowel programs. We

are fabulously resilient creatures.

hugs,

Randee

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Tyler Florence " on AOL Food.

(http://food.aol.com/tyler-florence?video=4? & NCID=aolfod00030000000002)

[Guest guest]

Hello all,

I am new to the group, and I thought it would be good and cathartic

for me to introduce myself and just spell out my situation.

I'm 31 and female, I was born with SB and had surgery when I was 3

days old. I know I have a lipoma but I can't remember where exactly,

its quite low though (there is so much technical lingo that I haven't

fully processed yet...sorry). Anyway, everything seemed fine through

my childhood, but I started developing a neurogenic bladder at age 16.

I thought I was going crazy, but I worked my way through various

treatments with various urologists, and finally started cathing around

age 21. This works fine, though I do have chronic UTI. Anyway, as it

turns out, I have TC, but no doctor ever told me that - I only

discovered it a few years ago after doing a bunch of internet

research. I also have some weakness in my right leg (ankle clonus,

short Achilles tendon) but overall my case has been pretty manageable

and so far I have felt pretty lucky, because I know it could be much

worse.

But now I am starting to freak out because I think I am developing

neurogenic bowel. I have had issues with constipation the past year or

two, and I thought it was just the usual: not enough fluids/fiber,

less than ideal diet, me psyching myself out, etc. I saw a

neurosurgeon a few months ago and he confirmed my TC status. He asked

me if I could feel sex or if I had any numbness " down there " anywhere

generally, which I said I didn't. He said if I developed any of this I

should come back, and that the next step would most likely be surgery.

I think I have finally put two and two together (ironic as that is)

and realized that things are getting worse, just not in the way he

quite described. I am really scared - just when I thought things were

ok for a minute, they are not. I am at a loss for what to do - I've

been reading up on bowel programs, but I'm overwhelmed by all the

options and by the reality that I could degenerate to the point of not

being able to have a BM naturally at all. I'm wondering if now is the

time to start seriously considering de-tethering, but that option

scares me just as much, if not more, especially given that it could

not work or just make things worse.

I am going to make an appointment and go back to the doctor, but I

know that ultimately it is my decision to either do the surgery or

wait and see what happpens. I don't even think I could have the

surgery until next summer, because of scheduling constraints. I just

don't know where to begin, but it looks like a bowel program is in my

future no matter what. So I guess my question is: where to start with

that? Suppositories, enemas, laxatives? I have been taking fiber and

it hasn't really helped at all. I'm hoping some of you can offer me

some suggestions, and give me your opinions. It is something of a

comfort that there is even a place where I can type all this out and

read about other people's situations, but I'm still really confused. I

won't go on and on, but thank you all in advance for reading and

responding....

Best,

Chiara

[Guest guest]

Chiara:

Our situations are so similar. I could have written this email

myself. I use a tea called Chiro-Klenz and it is the only thing that

has worked for me that hasn't caused diarrhea and incontinence. I

purchase it through a chiroprators office. Good luck and feel free

to email me privately anytime.

Christy

>

> Hello all,

>

> I am new to the group, and I thought it would be good and cathartic

> for me to introduce myself and just spell out my situation.

>

> I'm 31 and female, I was born with SB and had surgery when I was 3

> days old. I know I have a lipoma but I can't remember where exactly,

> its quite low though (there is so much technical lingo that I

haven't

> fully processed yet...sorry). Anyway, everything seemed fine through

> my childhood, but I started developing a neurogenic bladder at age

16.

> I thought I was going crazy, but I worked my way through various

> treatments with various urologists, and finally started cathing

around

> age 21. This works fine, though I do have chronic UTI. Anyway, as it

> turns out, I have TC, but no doctor ever told me that - I only

> discovered it a few years ago after doing a bunch of internet

> research. I also have some weakness in my right leg (ankle clonus,

> short Achilles tendon) but overall my case has been pretty

manageable

> and so far I have felt pretty lucky, because I know it could be much

> worse.

>

> But now I am starting to freak out because I think I am developing

> neurogenic bowel. I have had issues with constipation the past year

or

> two, and I thought it was just the usual: not enough fluids/fiber,

> less than ideal diet, me psyching myself out, etc. I saw a

> neurosurgeon a few months ago and he confirmed my TC status. He

asked

> me if I could feel sex or if I had any numbness " down there "

anywhere

> generally, which I said I didn't. He said if I developed any of

this I

> should come back, and that the next step would most likely be

surgery.

> I think I have finally put two and two together (ironic as that is)

> and realized that things are getting worse, just not in the way he

> quite described. I am really scared - just when I thought things

were

> ok for a minute, they are not. I am at a loss for what to do - I've

> been reading up on bowel programs, but I'm overwhelmed by all the

> options and by the reality that I could degenerate to the point of

not

> being able to have a BM naturally at all. I'm wondering if now is

the

> time to start seriously considering de-tethering, but that option

> scares me just as much, if not more, especially given that it could

> not work or just make things worse.

>

> I am going to make an appointment and go back to the doctor, but I

> know that ultimately it is my decision to either do the surgery or

> wait and see what happpens. I don't even think I could have the

> surgery until next summer, because of scheduling constraints. I just

> don't know where to begin, but it looks like a bowel program is in

my

> future no matter what. So I guess my question is: where to start

with

> that? Suppositories, enemas, laxatives? I have been taking fiber and

> it hasn't really helped at all. I'm hoping some of you can offer me

> some suggestions, and give me your opinions. It is something of a

> comfort that there is even a place where I can type all this out and

> read about other people's situations, but I'm still really

confused. I

> won't go on and on, but thank you all in advance for reading and

> responding....

>

> Best,

> Chiara

>