Hi I am Kate

S

Spring

New Member
Joined
Oct 24, 2016
Messages
2
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 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.

 
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

 
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☺

 
Last edited by a moderator:
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.

 
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,

 
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.

 
Spring said:
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
Click to expand...
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. 

 
AngryBird said:
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.
Click to expand...
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. 

 
Last edited by a moderator:
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.

 
Jools said:
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. 
Click to expand...
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.

 
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  1. xenxra @ xenxra: @WTF7218 it may as well be that way with how little effort some of the people on here make to find information that's exactly where you would expect it to be.
  2. ontovzik @ ontovzik: When I had long term shingles, lasting two months. All he could give me was a 10 day supply of dilaudid. He looked at the ground while we were talking about it. I could tell he was ashamed but it was the legislature and the governor that tied his hands. He was very upset that non-medical political people, the media, and the scared public were controlling how he treated his patients. Someday those people will need meds and a hospital bed and they will be gone.
  3. ontovzik @ ontovzik: I had a great doctor, he had the true gift of a healer and he stayed on top of all the science. He straight up told me that for many people opiods work for managing short and long term pain.
  4. ontovzik @ ontovzik: He peed it in the snow in my backyard.
  5. WTF7218 @ WTF7218: @xenxra 😆😂. Yes, but only a few brave souls will ever find the number. You must first order a Dirty Shirley from the bartender. Then you must discreetly take the cocktail napkin from under your drink and unfold it. There you will find the map to the location of the phone number, and clues to decipher the code that it is written in.
  6. xenxra @ xenxra: he left his phone number scribbled in a stall at the pub three blocks down
  7. N @ NYStateofMind: @Alkazar I would try one of those easy online ones .. reddit gives useful info about that
  8. Alkazar @ Alkazar: @NYStateofMind I dont really have a history of abusing things, my docotr is just really stingy. I am thinking of switching.
  9. C @ Cheesus: Thanks xenxra
  10. xenxra @ xenxra: @Cheesus yeah, use snote
  11. P @ psychedpsych: Trump is cracking down….
  12. P @ psychedpsych: Hackers are the scum of the earth
  13. N @ NYStateofMind: so it was easy bc of my history
  14. N @ NYStateofMind: I didnt really tell him but he knew I needed a new script since my dr went to jail
  15. N @ NYStateofMind: @xenxra I was on Adderall since 15 years ago so my dr prescribed that w no problems and then when I lost my best friend my doctor rxed the valiums but
  16. C @ Cheesus: Temp.pm down for anyone else?
  17. xenxra @ xenxra: @NYStateofMind my doctor's have always been pretty open minded if i can actually come in and explain the pharmacological action of the drugs im seeking instead of just telling them why i think i should be prescribed. the only time it didn't work out for me is when i was trying pharmaceuticals for depression ten years ago and suggested they let me try testosterone instead (turns out i was hypogonadal so they made a mistake denying my request at face value)
  18. T @ Testisthebest: Even down here in Florida when the pill mill docs all switched over to Suboxone and/or retired you can still find some pretty liberal docs but you gotta know what to look for. Mine does "pain management, detox, anxiety,etc. And no insurance. My doc writes me 60 5mg Valium, 14 2mg Xanax and asked if I had ever tried adderal to get more focus at work as I told him I run my own business.
  19. N @ NYStateofMind: @Alkazar do they know your history? Like I dont tell my doctor anything about myself except what they need to know,...I was able to get my dr to rx the highest dose of adderall along with valiums ..... if they dont know your history or there is no history I would just come out and ask what is the reason for their mistreatment.... they have no problem billing your insurance or taking a payment for the visit
  20. T @ Turbo259: @Layne_Cobain Thank you fam
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