Older, wiser, more in control

[cagfire]

older, wiser, more in control

Hi, I'm 42, female, married and been diagnosed with Crohns since August 1987.

I lived by my doctors and specialists rules for many years, went to all the support group meetings, cried on many shoulders and spent a long time bemoaning the fact that this horrible disease had taken away my ability to have children.

I've had 3 resections and a ruptured bowel that caused the second.

After about 10 years of trying every drug out there I decided to quit it all and manage my disease by lifestyle and diet. I'm not pushing any agenda here, just my own thoughts and views.

I was stressed all the time by working, work in general, hiding my illness at work, being sick at work, having obstructions while 100km from home and you have to drive home is not much fun.

I quit work and went on a disability pension. I have crohns in the joints, which flare up a lot.

I never used to think that stress was a major factor as I'd always had 'stress' in my life, but when we had an aggravated burglary happen in our home my body went into shut down mode for a few days that was not a happy experience.

I had my last resection in 2004. I try to live a fairly quiet life. I avoid hard nuts, seeds, etc but eat most other stuff in moderation. Fats give me the *****. lol.

I don't belong to any support groups because there is no real answer and I do most of my research on the net. I keep myself informed about medical updates. I take no meds for my crohns except Questran and lomotil as I have acute diarhea everyday and would be housebound without it.

At 42 I just get on and live my life now. If people see me having a ****** day I don't gloss over it. I don't hide it now.

Crohns is a horrible disease and I've had it most of my life but I'm used to it now and it doesn't control me. I had a doctor tell me to my face that I was an idiot for taking the path of no medication, but I'm still here, ,my body is still here ultimately it's my choice.

The best advice I can give to anyone newly diagnosed is get as well informed as possible. Take it all in and make your own decisions. There are no miracle drugs out there, either herbal or pharmaceutical.

Anyway, that's my rant for the moment.

I live on 12 acres in the middle of nowhere on the edge of the Big Desert in Victoria, Australia, with 3 dogs, 8 cats, 4 goats, 9 ducks, 4 chooks, 3 roosters and a guinea fowl. Life doesn't get much better than this. Hubby is a full time student at the moment. I'm an artist.
Cheers
Lisa

 

[Kate]

Hi Lisa from across the ditch,
Its good to see that some people take control of thier lives and i do intend to eventually bu for not im trying what im told because i want to see the pros and cons of it. Anyhow welcome to the site and all the best.

Kate

 

[jyarmo]

Hey Lisa!
Thanks for sharing! It's great to hear that you have your Crohn's under control! Sorry, but I'm a major idiot....what's a chook!?

Welcome to the board and I look forward to getting to know you better

 

[mikeyarmo]

Hi Lisa. I am glad to hear that you are coping with your condition without the use of many meds. It is always interesting to see how people treat their disease, and it is always uplifting to see someone able to function and live without the use of medications. Your home sounds very interesting and I am sure busy. At least it does not sound like you run out of room though .

 

[cagfire]

Hey Lisa!
Thanks for sharing! It's great to hear that you have your Crohn's under control! Sorry, but I'm a major idiot....what's a chook!?

Welcome to the board and I look forward to getting to know you better

A chook is Australian slang for a chicken, hen etc. Of the egg laying variety.

Here's a few more for you:

An idiot (or someone you think of as one) could be considered:

"A few snags short of a barbie (bbq)"
"A few kangaroos missing in the top paddock"
"A sandwich short of a picnic"
"A stubbie short of a six pack"

We call tomato sauce 'dead horse'
We call 'fries' chips.

we use a lot of rhyming slang here, it's starting to go out of fashion as we become more 'Americanised' but it still survives.

------------------

With my crohns I used to take all the meds, flagyl, imuran, prednisolone, the sulphur based drugs, all to see the pros and cons. I never found one drug that would stop a flare up, stop the progression of the inflammation.

When I had my last resection in 2004 within a day I could feel the inflammation starting again as a dull ache in the area where my terminal ileum would be if it was still around.

Cortisone is a big no no in my book...sent me psychotic. I always list it as an allergy to make sure it never gets slipped in without my express permission. I can take it via injection but not orally or iv.

I don't get the fistulas or other nasties that a lot of people get so I can make my lifestyle choice about meds. I'm lucky, and I know it. I've been in positions so dire that I've actually begged a doctor for surgery so I know how it is because I've lived it. I've been at deaths door with it but I know that I am still lucky. Even when I was being admitted multiple times a year for attacks I'd still say no to the meds because there is no guarantee. The day that there is a guaranteed treatement is the day I'll consider. Mind you, I would'nt like to be having injections like diabetics...eeeewwww.

Anyway, I'm glad another group has started up because I got sick of getting spam through the other one. I got fed up and posted a 'has this site been hijacked' message.

 

[mikeyarmo]

Anyway, I'm glad another group has started up

Well we are certainly glad to have you. We are all willing to read anything you might want to share with us, including more Australian slang .

 

[Karen]

Hello Lisa ... I am KAREN the wife of a CROHNNIE and so I have made lots of new friends here and I hope that you will count me in. It's good to meet other's that I can talk with about this problem to know what is going on with my husband so ... have a wonderful time here & jump right in !!

 

[Tami Lynn]

Thanks for sharing Lisa!

I can totally relate to where you're coming from as far as growing to hate the medications more than the disease itself.

Keep researching, keep staying well informed, kudos for learning to speak out and be real, and also for taking charge of your own life/health: more power to you for it!

You know your body better than anyone, and I'm sure you've got the common sense to know when things get out of hand and additional help is required...

I hope to read more from you in the future and glad to have you here!

 

[Donna]

Welcome!

I am also getting fed up with all of the meds. My docs keep sending me from one to another when they don't work. All it is is frustrating, and doesn't seem to do anything more than add to the lists of "doesn't work." But, although I know my own body, I am still a little scared to not try it just one more time. I know in time, I will just say, "what for? Nothing else seems to have worked, what makes this one any better?".

I am glad it is working well for you. I can only hope someday, it works as well for me!

Donna

 

[cagfire]

Thanks for such a warm welcome

Hey everyone,

Thanks for such a warm welcome.

I'm going to post some new threads on topics that may be of interest to younger people, things that I found difficult to deal with as a young, sexually active woman with crohns...although I'm not that way now...lol. The years wear you down...lol.

I've also had to cope with depression, suicide etc as part of the whole learning about me thing, so I'm very in tune with myself and my body.

In Australia we have different categories of doctors:

General Practitioners (GP's)
Physicians (who are above GP's but not specialists)
Specialists (like gastroenterologists)

The meds thing really came to a head when my treating physician told me that no medication would guarantee a flare wouldn't occur in 6 hours, days, weeks or years. I figured what the hell am I wasting my hard earned money on drugs that are costing me a lot, if there is no way of stopping an attack/flareup? I figured I really had nothing to lose.

Also, as a young married woman I wanted children. Being on such a toxic cocktail meant that we couldn't do anything. Imuran I would have been on for 2 years and I wanted children. It wasn't to be but I wouldn't go back now.

Anyway, thanks again for a warm welcome.

Cheers
Lisa
in rainy Australia

 

[ReeRee]

Hi Lisa!

I'm glad you came on in. I think as long as what you are doing is right for you, then more power to you sistah! I look forward to reading more about you and life in Australia!

Talk to you later on,
Robbie
"Ree"

 

[xrayzerase]

hi lisa--boy..reading so many stories today (i want to say hi to everyone..but..i guess i'll say hi in time..i hope..to many people here)
i am an artist too--i am 43-(though-i have yet to learn how old i am! (still nuts)
anyway-i am glad to learn what a chook is
and very glad to hear you are in control of knowing what steps to take (health) as the steps come along. i was just diagnosed-so only know 2 meds so far ..and got to where i couldn't function having flare-ups so frequently-and losing nutrients to "D"-i know there are many other ways..but-like you-you have to find them -with a dr-(even if not taking meds) along the way..and just fight the dumb disease (i am finally getting familiar enough with the disease (which i share with all the crohnies here) to all it names like "dumb"
i'd be curious to hear about your art...but..that is another forum huh?
regardless--
jusy saying (a long rambly) hello
andrea

 

[Cara Fusinato]

What, no sheep? I raise St. Croix hair sheep. Your ranch needs sheep! Welcome to the forum. I have read some great Crohn's research out of Australia. Wanna laugh? We have two bearded dragons (they are expensive over here -- costing $70USD PER dragon as a tiny baby and double that for an adult). I grew up with a cockatiel for a pet. Talk about another laugh, right? Welcome!