Ass backwards, semi New to forum

[pennywanna]

Hi, I am semi new to the Forum and never told my story cause I did it ass backwards, no pun intended. I have read alot of everyone's stories and I am not new to Crohns. I was having symptoms since I was a teen and was not diagnosed until I was 32. 8 months of testing, CT scans, drinking barium, colonoscopy scopes, and I was in extreme terrible pain and on my own raising my 4 year old daughter. I started with the surgeon taking out my appendix and said I should be fine, and went back for results and he basically looked at me like I had 3 horns and from another planet, and there is nothing wrong with me. So I gathered up all my records and was sent to Toronto Western to see a teaching doctor that found out how bad I was, after losing 40 lbs in two months and was on enough drugs to choke a horse,,, I had the barium scope down the mouth and they knew right away, it was crohns. Back then, computers were not like today everyone has one. I went to libraries, and looked up all these drugs and I was not getting better. I went to bed sick and woke sick. Then I met someone who never looked after me, I was too busy looking after him, mistake number #1. I had surgery about 1 year later and the incision was so small and I was on Cipro and Flagyl for one week before and after my surgery on an IV. I was put on at that time a new drug called Entocort and was on that and other drugs for 5 years. All seemed good. Then it came back with a vengence, just after my last relationship break up, in 2000. I moved a few times and moving was stressful and caused me more pain and went for surgery number 2 after having major flare ups and another obstructed bowl mistake #2. After that surgery I was so sick, and the doc didnt believe in Antibiotics and my incision was so badly infected, I literally thought I was dying. I has been 5 years ago, and on more drugs, Pantasa, Imuran, prednisone, then mexotrexate, then back to Entocort and then Remicade which I was highly allergic to and a year later, now I am on Humira my 6th shot and started that on Mar 28th of this year. So far I am was fine, until I had a major stress factor and caused my crohns to act up. So far now, I am doing pretty much ok on humira. Sorry this is so long but I have kept this very brief. I am so glad I found this forum, everyone here has the same problem and fully understands what I am going through. I hope I learn more....

 

[jed]

drugs... tick
stress.... tick
pain...... tick
misdiagnosis..... tick
bad reactions to meds..... tick

yup, your in the perfect place here
hi Penny!

 

[Jeff D.]

I hope everything starts to click soon and you get better. Try to learn the things that lower the stress in your life. I would say that anything that makes you feel happy to try and keep doing those things. Best of luck

 

[pennywanna]

Stress...

Thanks Jed and Jeff, it is so good to know that people actually understand and know about everything I talked about. I guess my worst thing that people say is "Keep Positive", I wish they could be in my body for 5 min. I know some people mean well, but I find stress hard to let go at times. Like everyone else I have my moments. This site helps destress me, sounds canny but true.

 

[Jeff D.]

What are your favorite things to do? I find when I get stressed I start to play my guitar and I feel better. When I'm not flaring I go for a run and pray. I watch stand-up comedy or a funny show. You can't get rid of stress by saying I'm not going to be stressed today. You have to work at it and it may be a little stressful to figure out what works for you but when you find out what works you will be so much happier. Of course your going to get stressed out. My parents stress me out to the point I feel like I'm going to cry sometimes when they drive, my mom decides she like to not look at the road and my dad is one of those mobile phone maniacs drifting towards cars or the side of the road as he answers a call. But you have to make it a priority to not let stress take over your life. Thats when you will run into trouble.

 

[jed]

I guess my worst thing that people say is "Keep Positive", I wish they could be in my body for 5 min. .

yeah, they mean well, but it is hard to hear that all the time. sometimes we dont want to keep positive, and thats no the worst thing we can do.

shout, cry, break something, just let it out! Always keeping positive for me kept a lot of anger bottled up at times. getting annoyed actualy helps me in the long run some times.


ha! when i was hospital for my long stay. i started making a list of things i never wanted to hear again

keep positive
this will only hurt a little
at least your in the best place
have you been to the toilet today? (LMAO, yeah, about 15 times so far, i'll let you know what happens after lunch!)
it could be worse (really? no sh**! i know it could be a hell of a lot worse, but i'm bloody sick of it at the moment!!!!)
we're going to try a new drug this week

:tongue: :angry-banghead:

 

[michels1]

Hi and welcome! Your story reads like so many of ours. I hope the humira keeps working for you. Keep your head up and like Jeff D says keep the stress level low.

 

[Jeff D.]

Hey jed that was my mental list while in the hospital and everday life as well.lol

 

[jed]

ha! i made monday to wednesday in hospital good news only days!

if family or friends came in and wanted to discuss some fear or worry they had then they were banned from talking!

i just got so sick of people thinking the worse (i know they were only concerned), all i wanted was some good news days

 

[Jeff D.]

I'll have to try that as well. It's like the GI comes in and tells me I have an abscess and I tell him, "Your banned from talking till Thursday, don't you know it's good news day from Monday till Wednesday."lol

 

[jed]

if family or friends

can only work on family or friends Jeff, if you can get the doctors to agree your going to be my hero mate!:dog:

(sorry penny, we hijacked your thread!)

 

[Jeff D.]

Yeah sorry for the hijacking but I think it would be pretty amusin if I told my GI that.lol

I'll use it on my parents and friends and people who like to butt into my life but whom I don't know. Wow I'm a bit loopy, goodnight.

 

[Keara07]

Welcome Penny - stay positive if able and to reiterate, the less stress is better for sure - whatever the reason seems to hold true. Sorry to hear things have gone the wrong way but sounds like they may be on the upswing now with a dx - know hat route (hindsight being 20/20) - I am also in my 30s and just dx'd and with kids so know the hassles being *sick* can impond on all of that - best wishes!

 

[pennywanna]

Thankyou all very much and dont worry about the hijacking, I am laughing and I need that. For a stress reliever, I have 3 Golden retrievers, and a 4 wheeler and take them out for a run on my property...and watch reruns of "all in the family" and laugh til I cry. LOL . I am now in my mid 40's and realized I have had this disease officially diagnosed, 15 years, and before that since I was 17. In the beginning I used to put it on the back burner, and you can't you have to deal and plan to "come what may". It has been hard on my daughter who is now 20 and in University, she says she lived with my disease as since she was 4. Sometimes I forget what she must of been thinking, that I was dying. Scary as a kid. I know we can't get away from all stresses, but my problem is not to sweat the small stuff. When I do, I just look at my dogs and laugh because they always love you and calm you down. Please hijack, no problem, it makes me laugh and they say "laughter is the best medicine" even when you dont want to. The crohn's life is a "crapshoot'!

I am Canadian!

 

[Kev]

Hey Penny Is that your nationality, or just your brand of beer?

 

[pennywanna]

Kev, you are funny, but no, I dont drink beer, only if it is really really cold and the first two sips, hahaha. I lived most of my life in GTA Toronto but the last 10 in the North, now in Thunder Bay, Ont., I live in the sticks, clean air and very quiet.

 

[Kev]

never been to T.B., but spent 2 years living in Toronto (way back in the 70's) on St George St..

 

[pennywanna]

Kev, I know exactly where that was, I was a courier in Toronto for 7 years, and at that time I wished there was such thing as a car porta-potty, especially when stuck in traffic. I christened every Mc Donald's bathroom from Scarb to Brampton LOL.