22 years...Really?

[becca38]

Hello all and thank you for being here. I have been in denial for a couple of decades, i suppose thinking that I was all alone.
I was hospitalized & diagnosed with Crohns disease 22 years ago. At that time Crohns was difficult to diagnose and there were few resources in Anchorage AK.
I was 17 years old and wasting away. I was literally watching my self lose weight daily, 40 pounds in two months (never buy a house that has a mirror in front of the toilet!)
My poor mother was desperate to find adequate health care and I saw every kind of doctor imaginable. One fine day a proctologist determined that it was a psychological condition or eating disorder. Jerk! So much pain and no help! I was having 15-30 BMs in a 24 hour period. No sleep and terribly malnourished at 17. Finally I was reffered to a GI Doc. Next day scope, same day admitted to the hospital.
TPN, Prednisone (LOTS), Flagyl and who knows what else. I was encouraged to have a radical elective surgery but I was 17 and not anywhere near comprehending that option! It took two years to ween off the prednisone but I had a few "normal" years before another hospitalization at 22. This time, TPN, Prednisone, Flagyl, Immuran, Asacol.
While hospitalizations have rescued me I have yet to gain control of this disease. Everytime I have a scope I think that they are going to tell me there is something that can be fixed. That I no longer have to be a slave to the toilet and waste costco TP at an alarming rate. Never. Scope says Crohns & sometimes they throw is a little UC to further complicate my absorbtion issues. I have taken so many meds and spent insane amounts of cash on perscriptions, supplements, doctors (allopathic and naturopathic).
Today I am taking 40mg injection of Humira per week. I wish I could give it a thumbs up but I still have diarrea every day of my life. I do not understand how I can even be functioning after 22 years of this crap!
At this point I am interested in trying LDN which led me to this forum 2 years ago. I never persued LDN because I opted to try Humira first. Now, I feel like I have given humira a chance and I feel desperate for SOMETHING to help. I excercise, eat well and practice yoga, I am not sitting around waiting for a fix but I do need some new kind of kick!
My story seems like nothing when I browse posts, but that is more of me being in denial of my experience. Having a disease sucks and I still do not know how to take care of it!
Thank You all for this forum. Hopefully getting involved will help me to open up and come to terms with this disease.
I am excited to see this wealth of information and community.
Namaste,
Rebecca

 

[xJillx]

Hi Rebecca and welcome! It is certainly difficult accepting a chronic illness. You are not alone in your thinking. Though it was hard to accept, I am glad that you still kept up with your treatment through the years. I have read many say they were in denial and stopped taking their meds; this never goes well. But I am sorry your current treatment isn't really doing the trick. You should definitely speak to your doctor about other options. Start your research by going through the Treatment forum (there's a whole sub-forum on LDN) and make yourself an appointment with your GI. Good luck!

 

[CDDad]

Hi Rebecca,
I was in denial for many years. I think denial can take many forms - for me it was just thinking that no one could help me, so why bother. I just gave up on the docs, but the only one I hurt was me in the end. I never had much pain over the years, just constant diarrhea and urgency.

I don't have any advice, it sounds like you're doing all you can already. My "cure" was radical surgery.

With your experience, you'll be a great addition to the forum - welcome!

 

[AndiGirl]

Welcome to the forum Rebecca. This place is wonderful. The members are very friendly and supportive. Before joining, I felt all alone. Please make yourself at home and join us in the various threads.