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Crohn's Disease Forum » Your Story » Diagnosed 9 years ago


10-18-2012, 04:37 AM   #1
Jer
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Diagnosed 9 years ago

Just wanted to give a brief bio on myself, I'm sure a lot of you can relate.

In the winter of 2003-2004 I noticed a lot of stomach discomfort and increasing BMs every couple days. After a few weeks of those BMs containing blood and the fact that I was going 12-15x/day, I reluctantly made a visit to my doctor. After a colonoscopy, my situation was confirmed, I had Crohn's Disease.
In these 9 years or so, I've been on 8-10 different meds, some worked for a little while, some didn't work at all.
In 2011 I spent a little over a week in the hospital with a micro tear in my intestine. Heavy dose antibiotics saved me from surgery.

Like everyone else, I have my good days and bad. I try and stay positive, even after all these meds coming up short.

At this point, I'm looking for something outside the box. I've trying all the BIG PHARMA meds that my doctor has pushed my way and they aren't cutting it.........well, execpt good ol prednisone, I basically live on that crap.

Every dr visit I hear how the next great drug is right around the corner, well, its been years now and I still haven't seen it.


I hope today is a "good" day for those of you who need one.
10-18-2012, 07:26 AM   #2
Angrybird
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Hello and welcome to the forum.

I am sorry to hear that you are still struggling to get on a working med, out of interest what has been tried so far? Have any type of dietary changes been suggested/tried? Are you just on the pred at the moment and what syptoms do you continue to get?

There is a lot of helpful info and support here for you so do have a good look around

AB
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Angrybird

DX: Crohns July 2002
Surgery: Ileocecal Resection Sept 2011
Now:Tummy behaving itself and new mummy to baby Nicholas
Current Meds: 6-MP 75mg,B12 injections every 3 months
Previous Meds: Budesonide, Prednisone, Remicade, Pentesa,Hydroxychlorequine,Azathioprine (tried twice) and Methotrexate
10-18-2012, 01:43 PM   #3
David
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Hi Jer and welcome

It sounds like you've been through a lot If you're looking for alternatives then here are my two biggest suggestions:

1. Low Dose Naltrexone - Two small studies and lots of people here have had wonderful results.

2. Stem cell therapy - If you've failed the biologics, you may be able to be accepted.

We're here for you anytime you need us
10-18-2012, 05:18 PM   #4
Jer
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Thanks for the welcome.


Lets see....Have tried.....

Asacol
Entocort
6mp
Trial Drug
Remicade......(worked great for about 2.5 years)
Humira......(horrible reaction)
Cimzia
Prednisone
There were a couple others in there, but I can't recall what.


Currently on cimzia, 6mp and prednisone
10-20-2012, 12:24 PM   #5
Judith
 
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Welcome to CrohnsForum Jer. I hope you find help here with us. Angrybird and David had some excellent suggestions. I was wondering what your Vitamin levels were? Specifically Vitamin D and Vitamin B12.

If your Vitamin D levels are too low it can impair your immune system's ability to fight Infection.

Although it is new, Fecal Transplant therapy has shown some positive results too.

Welcome!
10-23-2012, 04:43 AM   #6
Jer
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I was wondering what your Vitamin levels were? Specifically Vitamin D and Vitamin B12.

If your Vitamin D levels are too low it can impair your immune system's ability to fight Infection.

Welcome!
Actually, I had noticed over the years, that come late fall/winter time I tend to get more symptoms. I did have my Vit D levels tested last winter and they were on the low side.

Thanks for the reminder, I'll get it checked again and see if supplementing will take a bit of the edge off if it is low.
10-24-2012, 02:17 AM   #7
Judith
 
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I hope Vitamin D supplementation or sunshine is a quick and easy fix to help you feel better. I dont know what your exact levels were but David particularly emphasizes the threshold for "Low" is often actually "Really Low".

If you do choose to supplement always use D3.

Hope you are feeling better quickly.
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