Adrenal glands

[Gabes-Apg]

Julie
hope you feel better soon xo

[ant]

Dear Julie,

Ditto! hope you get better soon.

Best, ant

[Julie]

Hi everybody.

I just got home from the hospital. I have to take hydrocortisone, this because my adrenal glands are "lazy" (since they don't produce enough cortisol, because I didn't wean off entocort, this because my doctor told me to stop cold turky).

I need some encouragement now... I've just heard that I could feel like this for the rest of my life and that I could go into shock when feeling stressed and if I have an infection.

I am so angry now. I am angry because I told my doctor at the time that stopping entocort cold turky wasn't a good idea. he told me that it wasn't going to be a problem. Look at me now, I have a form of addison disease. This is another disease that I have to overcome. So I don't just have LC, now I have addison's disease to go with it. I am tired of all this. If my adrenal glands stay lazy, I will have to take hydrocortisone forever. I can't stop crying. Has anybody here been through the same thing? Please help.

Julie

[Gabes-Apg]

Julie
if you read back a few posts in the thread, i posted about my adrenal issues. I didnt take any meds, with supplements and natural therapy they are 'almost normal' (recent blood work also backs this up)

[ant]

Dear Julie,

I do not know for sure, but I think and hope it is possible for the adrenal glands to be strengthened.

Best wishes, ant

[tlras]

Bless your heart! And dang that doctor for telling you to quit cold turkey like that. Thanks for sharing this as now I'm concerned about the adrenals as well. Just something I haven't had a chance to research with all the other stuff. Glad to hear your doctor checked your levels as I don't think mine have ever been checked.

It is nice to know that Gabes has had success with her protocol in regards to the adrenals. Just proof that you can get better. Yes, one disease/condition seems to lead to another. I'm finding that out as well. We just have to be strong and research all we can to get better. Try some meditation or yoga relaxing poses to ease up on the stress.

Hugs,
Terri

[Julie]

Hi everybody,

thanks again for your replies. Please be carefull when weaning off medicine like entocort, prednisone, ... Never stop cold turky. My situation could happen to you. And it is a fact that my adrenal glands may never be fully restored. I'm so depressed. LC has taken so much of me and now I have to face this.

I still feel horrible. I can't function like a normal person. I still can't go to work, It doens't even seem possible to go for a five minute walk.

I am currently treated with hydrocortisone. It could take months before I start feeling better.

Please be carefull.

Julie

[tlras]

Thanks so much for the warning! I won't even quit my Pepto cold turkey.....weaning off right now.

I do hope you feel better soon. Sorry this has happened but hopefully the hydrocortisone will work wonders.

Praying for you.

Terri

[Julie]

Hi Terry,

The hydrocortisone is beginning to work. I still feel very tired and I still have this strange feeling in my head. It could take years before the adrenal glands begin to work again. They may even never work again. When my cortisol levels are back to normal, I will have to wean the hydrocortisone off very slowly. I hope I won't have any side effects. So the future is still uncertain for me.

Grtz

Julie

[H@ns]

Hi Julie,

What a horrible story and what a quack(salver) of a doctor!
Even the information listed with Budesonide states that abrupt stopping is to be avoided at any cause.

Some news that may give you some hope; i've read a few stories about people who had problems with there glands producing hardly any cortisol after stopping long intake of Entocort for Crohn decease. On average it takes 2 to 6 months to get the lazy glands up and running again. So don't despair yet, give it time (live by your own motto written underneath your posts!)

Here's a site that gives some tips on boosting your glands, there are more tips out there on the web. Take it for what it's worth, it might help

Best of luck!

[CathyMe.]

Hi Julie,

What a horrible story and what a quack(salver) of a doctor!
Even the information listed with Budesonide states that abrupt stopping is to be avoided at any cause.

Some news that may give you some hope; i've read a few stories about people who had problems with there glands producing hardly any cortisol after stopping long intake of Entocort for Crohn decease. On average it takes 2 to 6 months to get the lazy glands up and running again. So don't despair yet, give it time (live by your own motto written underneath your posts!)

Here's a site that gives some tips on boosting your glands, there are more tips out there on the web. Take it for what it's worth, it might help

Best of luck!

How scarey Julie. My GI doctor also had me stop budesonide cold turkey....I had been on it since February and even asked her if it was okay to quit or should I taper down!!! I hope you're feeling better.

[brandy]

Hi Julie,

Please keep us posted on how you are doing. I believe our president John F Kennedy had Addisons disease. I'm working through some adrenal issues myself (not what you have going on ) but I'm telling myself to stay positive, destress etc. Sorry you are going through this. Brandy

[Julie]

Hi everybody,

thank you for your replies. Just wanted to give you all a warning since many GI's are convinced that you can quit budenoside cold turky.

My doctor did some bloodtests and my cortisol levels are great, with the hydrocortisone 20 mg a day. I will know on Monday if I can wean it off. I know that I will have to wean it off very slowly. Let's hope that the problem is fixed and that my glands will work again. Please be carefull.

Take care and bless you all.

Julie

[tex]

Hi Julie,

It's good to hear that you're doing much better. Since you are still so young, your adrenals should recover.

It is safe for a patient to stop taking budesonide if she or he has only been taking the drug for a few months, and so apparently your doctor become confused and thought that this means that the drug can be discontinued cold turkey no matter how long it has been used. Research shows that if the drug is taken for longer than about 6 months or so, a tapered withdrawal is needed for many/most patients. And after taking it for a year or more, tapering the dosage during withdrawal is mandatory.

Thank you for the update, and I hope that you'll soon be feeling as good as new.

Tex

[Julie]

Hi,

thanks Tex. It's just so frustrating: he knew that I had been taking budenofalk for a year.

Now that I take the hydrocortisone I have a few problems. I wake up at night, sweating and I look as if I gained a lot of weight, but I haven't. The thing is, my weight is very sensitive for me since I've lost 20 kg last year and I finally felt good with the way I looked, and now, I look as if I gained 5 to 7 kg.

Tomorrow I will see my specialist (who let me quit budenofalk cold turky). I have a few questions for him and for everybody here:

- Every time I complain about feeling nauseaus and having pain in the abdomen and having D, he says it's IBS and not LC. I whonder what the difference is between IBS and LC in symptoms, so that I don't start budenofalk for no reason and to avoid the horrible episode of LC I had last year. I couldn't eat properly for weeks. According to him, you don't feel really sick if you have LC. You just have D. Is that true?

- He said to my GI that my LC occurs in a mild form. I didn't know there were different kinds of LC. I just thought that LC is about having infections.

Thanks

Julie