Newbie....

[defgurl2004]

]Hello everybody!:sign0144: My name is Kelly I'm 28 and I have Crohn's disease. I found out October 2011 from a very unhelpful:voodoo: doctor that I wish I could forget about but then again he was able to tell me that I had this disease and things were going to get better :rof: but I was wrong really wrong about that. He made me believe that I take this drug and I'd be happy and health and go on with my life like nothing ever changed or happened. Needless to say I have had a long bumpy road this last year or so. I lost my job I am filing for SSI/SSDI I'm trying to find a new doctor ( GI doctor ) and in doing all this I'm trying to not get depressed or stressed or any emotional feeling that isn't good for my disease. I am taking Prednisone, Ondansetron HCL and Hydscyamine sulfate. They don't seem to be helping me at all any of it. I go back to see my family doctor on Tuesday to talk to her about how these medications are not really helping me but with out having any type of insurance I'm kinda out of luck. I had medicaid but since I just got my first denial letter from SSI/SSDI they took it away and I wont be getting it back until I re-appeal which wont be until Sept 18. So yea that's where things are at right now and yes Prednisone makes me crazy and a little all over the place. I could really use some friend and I feel like crap for even putting this. No one seems to understand what's going on with me in my life right now and all my friends have slowly diapered. If it wasn't for my partner I would be lost. I'm really glad I ran across this forum and I'm really looking forward to talking and meeting new people who understand....

:ghug:

 

[David]

Hi Kelly and welcome to the community.

Wow, I'm so sorry to hear about how much trouble you've been having. Since your treatment isn't working very well, you may want to take the shotgun approach and hit your Crohn's from all angles. For example:

- Western Medicine - Whatever your doctor suggests
- Dietary changes - Enteral/elemental nutrition, [wiki]paleo diet[/wiki], or [wiki]specific carbohydrate diet[/wiki]. Juicing is also growing on me a lot.
- Hydration - Dehydration and loss of electrolytes is common. Proper hydration and adding electrolytes back in can help you a lot.
- Alternative treatments - I'm a fan of Low Dose Naltrexone. Research it. Medical marijuana has been shown to help a lot as well if that's something you're comfortable with and is legally available in your area.
- Stress reduction. Do whatever it takes to reduce your stress levels. In addition, a weekly or even monthly massage if funds are tight is great. Studies have actually shown that massage can reduce inflammation. Give yourself self-massages as often as possible in between the professional ones.
- Exercise if you're able - a gentle yoga is a good one
- Vitamins and minerals - find out which you're deficient in and properly supplement. People with Crohn's disease are commonly deficient in vitamin B12, vitamin D, folate, and magnesium as well as a host of others. But those four first ones should definitely be checked.
- Supplements - there are a variety that help improve overall health. Check our our diet/fitness/supplements forum for ideas.
- Alternative medicine - This could be stuff like acupuncture, including a naturopath in your treatment team, etc.

Bring your doctor in on the conversation for all of this. Get their input and let them help supervise your disease state. Some doctors might need a little push on some of this stuff, but we can provide studies that showcase the efficacy of all the above.

 

[DennisD]

David, your response is perfect advice. Kudos to you.
I've a mild case and my treatments have been pentasa and Endocort since the bit.
I fluctuate my dosages according to how I feel.
What's have discovered this past year is that what I eat, and the amount I eat, greatly affect me.
I also have begun a regimen if smoothies every morning, always with the juice of two organic lemons,
Greek yogurt, veggie and fruit juices. The lemons, I use limes also, I've read they clean ya out.
I dunno bout that, but I stick with it.

I have insurance, but if I didn't I'd look for GI Nurse Practitioner for guidance.
I've seen three GI's, and they are nothing if not vague.

 

[Keepingfaith]

Just want to welcome you to the forum and inform you that you aren't alone in this struggle! You haven't even scratched the surface when it comes to possible treatments for Crohn's. Once you find a good GI hopefully he/she will hook you up with a treatment right for you. Hang in there!

 

[defgurl2004]

Thank you everyone and I will definitly look into the different treatment options. Some days are harder then others but I really am glad I found this place!