Hi I am Kate

[Spring]

Hello All, I am kate, I am 28 and have severe crohn's disease. I have tried everything and everything does not seem to work. I am constantly on predisone, like crazy making amounts (60mg-120mgs). So I need benzos to help counteract those and I bc the doctors here are ALL seeming to stop prescribing pain meds, I *really* need help with this if anyone would private message me bc I still don't *totally* get how this site works. I also don't want to break any unknown social rules so please let me know if I am jumping the gun or being rude somehow.

Crohn's is awful. I feel like my life is over. I have MA in psychology but I lay in bed all day. When I am on pain meds, I can function and feel ALIVE. I am doing everything I can-exercise, Chinese herbs, supplements, western meds (poison, basically), acupuncture, neurofeedback and biofeedback, sound therapy, and em pulses to the belly. MJ does not help. Also connecting with the crohns support group here and really reaching out to my friends. Can't find a good therapist though Chronic illness is a tough one. Humanity! Sicknesss,, old age, and death...hard things to deal with. If anyone can direct message me or tell me what to do so I can learn more about the site, will you? I am happy to donate to get more info as well. 

Thanks for listening and letting me join your group! 

xoxo

kate

 

[2earls]

I am happy to help you, but we don't suggest asking for pms. I'm afraid that there can be scammers who would take advantage of a new member. I will pm you, but I will suggest that you read the forum after I give you some guidance and make your own, informed decision.

 

[FlyingSquirrel]

Welcome Kate.  I know that it can seem overwhelming when you first get on a new website.  But it really is true that if you take some time and read and read some more that you will find all kinds of great information on DBG.  The people on here are friendly, kind and very helpful, but as @2earls said, please be careful in talking to people in pm (private message) - not everyone is a good egg and since you are fairly new here, you need to get your feet wet and get a feel for things.  It will become easier to navigate over time and if you do need a little help, you can post a question and I'm sure that someone will chime in and try to help.

Hope everything works out for you.  Take care,

FS

 

[PTFC]

Indeed, sage advice! You're only a PM away from somebody shilling for a vendor or "vendor" or being scammed. Once you are more familiar with the place, you will be more comfortable here,  and hopefully physically also! Welcome @Spring☺

 

[AngryBird]

Welcome @Spring. I'm a crohns pt also. There are a few of us here. I'm sorry to hear you're having a hard time. Too bad the mj doesn't help. There has been some research on it for crohns, and it's one of the tools in my chest. Perhaps edibles could help, or a different strain.

I also use many alternatives, including kratom and several of the same thing you do. Steroids....yuck! Last round I was on over 200mg a day. Made me a special kind of crazy.

I'm doing better for now. Hopefully you will find what can help you best. 

There is a bunch of useful information here and good people looking out for us.

If you can, a donation will open up other areas that may contain what you are seeking.

Good luck.

 

[ElectroNymph]

I don't blow, I mean know much about Crohn's disease, but there are some wonderfully knowledgeable and kind people on this forum. And also vendor's who are regularly 'vetted'. Just go for what suits you, and check reviews. 

E.N. x,

 

[bud]

Welcome!  When I first was welcomed into the site I spent about an entire work day reading everything I could.  Then at some point you just need a leap of faith with your first order and more likely than not everything will be fine, thanks to all the great members and vendors.

 

[Jenny]

Welcome aboard  

jenny

 

[Jools]

Hello All, I am kate, I am 28 and have severe crohn's disease. I have tried everything and everything does not seem to work. I am constantly on predisone, like crazy making amounts (60mg-120mgs). So I need benzos to help counteract those and I bc the doctors here are ALL seeming to stop prescribing pain meds, I *really* need help with this if anyone would private message me bc I still don't *totally* get how this site works. I also don't want to break any unknown social rules so please let me know if I am jumping the gun or being rude somehow.

Crohn's is awful. I feel like my life is over. I have MA in psychology but I lay in bed all day. When I am on pain meds, I can function and feel ALIVE. I am doing everything I can-exercise, Chinese herbs, supplements, western meds (poison, basically), acupuncture, neurofeedback and biofeedback, sound therapy, and em pulses to the belly. MJ does not help. Also connecting with the crohns support group here and really reaching out to my friends. Can't find a good therapist though Chronic illness is a tough one. Humanity! Sicknesss,, old age, and death...hard things to deal with. If anyone can direct message me or tell me what to do so I can learn more about the site, will you? I am happy to donate to get more info as well. 

Thanks for listening and letting me join your group! 

xoxo

kate

I have Crohn's, Wegeners granulomatosis and 2 discs herniated and pressingnon the main nerve going through my buttocks, groin and legs. 

Have you been offered infliximab ?  It is fantastic if it works for you and no more steroids. I've been on azathioprine, methotrexate, mercaptopurine, cyclosporine, cellcept and tacrolimus. I am now back on 200 mg azathioprine plus 10 of prednisone. I had great results with infliximab ( remicade) but it stopped working. Now there is also humira. Please ask about these drugs. They are brilliant if they work and live changing 

PM me if you have any questions. I was diagnosed May 07 but had it for years prior to that. I e never been on higher than 40mg oral prednisone but have had IV steroids and cyclosporine. 

There is much more to help you. I am stunned you've not been given them. Flabbergasted to be frank. 

 

[Jools]

Welcome @Spring. I'm a crohns pt also. There are a few of us here. I'm sorry to hear you're having a hard time. Too bad the mj doesn't help. There has been some research on it for crohns, and it's one of the tools in my chest. Perhaps edibles could help, or a different strain.

I also use many alternatives, including kratom and several of the same thing you do. Steroids....yuck! Last round I was on over 200mg a day. Made me a special kind of crazy.

I'm doing better for now. Hopefully you will find what can help you best. 

There is a bunch of useful information here and good people looking out for us.

If you can, a donation will open up other areas that may contain what you are seeking.

Good luck.

200 mg of oral prednisolone ? That's unheard of in the U.K.  Sorry for doubting you but the professor Chris Probert ( Google him) would go to 60 max and then go to IV. Unless you are big and I mean huge then I find this very hard to believe. The effects that would have on the endocrine system doesn't bear thinking about let alone the bones. 

I think you maybe mixing up azathioprine with prednisolone as I jjsy did a web search and 200 of pred is just not done. It could kill you very quickly. Sorry but I feel a need to question this as it could lead to people self medicating by reading this and dying and I'm not being dramatic 

the adrenal gland would close off and you'd be in dire danger. 

Please, anyone reading this, don't try this at home however bad it gets. 

 

[2earls]

Or maybe a typo @Jools ? Maybe meant to say 20mg? I have a lot of experience with Prednisone and even when in the ER for a severe asthma attack I was not given anywhere near 200 mg.

 

[AngryBird]

200 mg of oral prednisolone ? That's unheard of in the U.K.  Sorry for doubting you but the professor Chris Probert ( Google him) would go to 60 max and then go to IV. Unless you are big and I mean huge then I find this very hard to believe. The effects that would have on the endocrine system doesn't bear thinking about let alone the bones. 

I think you maybe mixing up azathioprine with prednisolone as I jjsy did a web search and 200 of pred is just not done. It could kill you very quickly. Sorry but I feel a need to question this as it could lead to people self medicating by reading this and dying and I'm not being dramatic 

the adrenal gland would close off and you'd be in dire danger. 

Please, anyone reading this, don't try this at home however bad it gets. 

You are correct @Jools,It's a very high dose, to be sure, and not a first time dose. I've had many issues with other crohns meds. This is part of a physician induced treatment and is closely monitored. Remicade was amazing for a time, but stopped working. I've had courses at that dose on average once or twice a year. My goal now is to find healthier alternatives i can manage. We have both taken many similar meds, but I will definitely look into any you mentioned that I haven't tried and am open to any other suggestions from you @Jools or other crohns pts.

Thanks for speaking up and letting me know there are others out there like me.