Brand new... to the forum and crohns

[furiousrose]

brand new... to the forum and crohns

hello
I am 26yrs old, and havn't even had a proper diagnosis for Crohns. After ruling out everything else, it was brought to my attention that the crohns aspect of the colonoscopy was done incorrectly, so I was sent for a small bowel follow through... also now brought to my attention was done incorrectly. I just started seeing the internal medicine specialist for Vancouver Island, and after much talk, discussion and old test result reviews, he put crohn's back on the table yet again, and started me on Pentasa while we wait for more test results. Since starting the pentasa, I am far from feeling awesome, but I have to say I feel better then I have felt in a long long time. I believe that if this is what I have, then its mild, and in the earlier stages.
I am glad I found this site, its been great to read peoples stories and what they go through, i didnt realize that this would be the cause of my joint swelling, armpit pain!, shin rashes... things that made me believe that it was possibly my thyroid and not an IBD.... but as my doc said, thyroids dont make you bleed from your bum.
I was reading about how many hours people work on average, I have been sick for about 3 years, I have been unable to work more then 30hrs a week, or I will burn out, and have to spend several weeks in bed, I am currently on sick leave at the moment, due to severe swelling in my legs. I deal with the diareah, and bad pain and cramps, cause i believed it was just a part of my life, and was to embarrassed to tell work why i wasnt coming in.... and 'i dont feel good' just doesnt cut it 99% of the time. My solution is to get up several hours before i have to leave the house, and suffer until my body cant possibly pass anything else, and then try to get through the work day.
I feel overwhelmed to read everyones stories, and would like to become apart of this community, i am looking for conversations, companionship and understanding from those who know what its like.
xoxo

 

[Daisy G]

Welcome to the forum
I was diagnosed in July 2007 and leading up to that time things were pretty hectic healthwise - it was the most overwhelming time of like not knowing what on earth was happening. Since then I've gone through different stages i.e. denial, grieving about been diagnosed with a chronic disease, "I just don't care anymore", crying crying and more crying!! Anyway, time doesn't exactly heal everything but things seem to be going a bit better now, I feel as if I have lost a bit of myself so to speak because I feel as if I'm only 80% normal if you know what I mean? At present I'm on Mercaptopurine meds and things are stable enough and I'm living in hope that the next flare up is in the far far distance.
I wish you well in managing your Crohns and remember that there are folk on this site who know exactly what you are going through so you are not alone!!
Take care......

 

[teeny5]

Welcome to the forum! You have come to the right place for what it sounds like you are looking for.

 

[furiousrose]

i went to log in this morning, and it wouldnt let
i recieved an email saying i didnt meet the requirments... I am very confused, and re registered..
does anyone know why i wouldnt have met the requirments?
thank you so much for your welcomes
x

 

[Sojourn]

I don't know, but if you look up at the top of this thread, your name is in lower caps and it doesn't show your post count. And now it's showing this, your second post, as your first post.

It looks like you should be okay now. You might message one of the moderators and let them know.

My solution is to get up several hours before i have to leave the house, and suffer until my body cant possibly pass anything else, and then try to get through the work day.

That's what I used to do and it can be very draining and wear you out. I hope you can get the proper diagnosis and some treatment soon that will help you. They usually would put you on steroids, Prednisone, to help calm it down to give the Pentasa a better chance of doing what it's supposed to do. And steroids have their negatives also. But, at least, usually it gives those who are first diagnosed some much needed relief.

 

[furiousrose]

i had an appointment with my GP today.. she is so amazing
it was to reassess me going back to work... which is not happening for a long while
so after all those blood tests.. she had the results of some
i came back positive for rheumatoid arthritis, and connective tissue disease(I think those go hand in hand) and my antibodies are kind of all over the place.. good ones are low, bad ones are high.. from my understanding
you would think that would bum me out.. but I went to EI today, and had a 2hr wait to see an actual person, to figure out what the hold up was... during that 2hrs i decided to go for lunch, cause i had to take my meds, and was stuck downtown longer then expected. My server was the most incredible woman in the world.. shes 26, her name is also lindsay, and she is little just like me... the thing with lindsay is.. she's had cancer 5! times.. she just had one of her kidneys removed. She bought me a glass of wine, and I sat at the bar and had the most inspirational conversation ever... I admire her, and think we will become friends.
AND we got my EI figured out, so I should be getting income assistance soon.
so all in all today was great
i made a new friend, got my EI figure out, and now we have definite test results on paper.
i am smiling
i hope you all are too

 

[DGS]

i had an appointment with my GP today.. she is so amazing
it was to reassess me going back to work... which is not happening for a long while
so after all those blood tests.. she had the results of some
i came back positive for rheumatoid arthritis, and connective tissue disease(I think those go hand in hand) and my antibodies are kind of all over the place.. good ones are low, bad ones are high.. from my understanding
you would think that would bum me out.. but I went to EI today, and had a 2hr wait to see an actual person, to figure out what the hold up was... during that 2hrs i decided to go for lunch, cause i had to take my meds, and was stuck downtown longer then expected. My server was the most incredible woman in the world.. shes 26, her name is also lindsay, and she is little just like me... the thing with lindsay is.. she's had cancer 5! times.. she just had one of her kidneys removed. She bought me a glass of wine, and I sat at the bar and had the most inspirational conversation ever... I admire her, and think we will become friends.
AND we got my EI figured out, so I should be getting income assistance soon.
so all in all today was great
i made a new friend, got my EI figure out, and now we have definite test results on paper.
i am smiling
i hope you all are too

Woot! Having wonderful Docs is FTW! I luv my GI and his Nurse!

Thats great that you got some things figured out and then to top it off your making a new friend outta a "bad" situation.

 

[furiousrose]

So.... after the million and one tests I had done this month here is where we are at:

I dont have lupus, I dont have whipples, I dont have c-diffilic(?)......
What I do know: my white blood cells are reacting to some sort of infection/disease... my immune system is reacting to some sort of infection/disease.....

If anything I find it funny that my Doc was SO sure that he would have me completly diagnosed by yesterday... he was pretty blown away that he didnt.
He is leaving crohns fully on the table.. and now I have to swallow one of those camera pills, and keep taking the pentasa, cause i am seeing results from it.
I found a naturopath/acupuncturist, with really decent prices, so I plan to start seeing her around the 15th of March.
I am not giving up on the doc's.. but I have been through something very similar before.. where I seen every doctor, had every test, and the problem was lost on them.. went to physio, he had it figured out after the consultation, stabalized me, and got a surgeon convinced to go in and fix my shoulder. They said after if they wouldve waited any longer I would have permanently lost use of my arm.
So.. I have given them 8months, and went through with every test.. and now its time to go off this path and start looking into other options available to me...

I also got a great book lastnight

Hard to Stomach - Dr. John McKenna. I am super excited for it.

I have two really inspirational thoughts to share

'the people that talk about sickness the most, are almost always sick'
'if you continue to repeat actions, you will not get different results.. in order to get the results you desire, you have to change your perception or your procedure'