Share Facebook
Crohn's Disease Forum » Your Story » 7 Years Down...the rest of my Life to go...


12-27-2011, 02:03 PM   #1
~Manders~
Member
 
~Manders~'s Avatar
 
Join Date: Dec 2011
Location: Ontario, Canada

My Support Groups:
7 Years Down...the rest of my Life to go...

Well...where to start?? It's been a rollercoaster of a decade that's for sure. Many ups & downs (my bathroom is on the second floor! )

I guess I'll start at the beginning. I was having issues for about 3-4 years before I was diagnosed. After many visits to my uninterested GP, many packages of immodium and many procedures, I still had no answers but the standard "you have IBS". I was finally sent to a gastroenterologist where i went through my first colonoscopy which was a terrible experience. Prepping for the test was nothing short of torturous after a bad experience (vomiting & diarrhea all at the same time) prepping for a barium enima, then during the procedure I felt a lot of pressure & was really uncomfortable. The test results showed nothing...but I do remember in my foggy state that the doc stopped the test because I was in pain (seriously? Shouldn't that have been an indication that something was wrong & they should investigate further!??) That was in Feb of 2004. I was not treated for anything & nothing was done until I finally took matters into my own hands & started doing my own research. I finally "suggested" that my doc send me for a CT scan. I was scheduled for 4 months later...which in my mind was NOT good enough so I phoned my doctor's office every day for 2 weeks until they moved my appt up closer. I think it was moved 2 months to the beginning of Dec. '04. I had the CT scan, and the next day, I just happend to have a follow up appt with my gastro for the colonoscopy I had done earlier in the year. I told him about my CT scan and he phoned in to the results. He got off the phone & said "you have crohn's"...I was floored. I had no idea what this meant, what to expect, nothing. I was there by myself because it was just a routine follow up. Oh, and I should mention that I was 24 at that time. Anyway, the doc gave me some Rxs for prednisone & azathioprine & sent me on my way. I was in a complete daze....I remember sitting in my car for a good 10mins before I even turned it on. I didn't know what to do, or where to go...so I went to my GPs office for some reason. I told her what had happened & she had the audacity to say "oh, so there really was something wrong with you". I couldn't believe she said that!!! Did she think I was just going to her office for fun?? Needless to say I never saw that doc again.

That's my diagnosis story.

I've moved provinces & cities over the last 7 years, so I've gone through a few doctors as well. Some good, some bad! But I'm happy to say that I am currently seeing a fantastic doctor, and despite the current flare up I am experiencing, they are fewer & farther between than they have ever been. I am lucky in that I do have have an extreme case of Crohn's. I have never had surgery, and I can eat almost anything in moderation. It's stress that is my largest trigger. I am currently on 3.5 tabs of Azathioprine, plus I take a multivitamin & more recently folic acid. Which leads me to the main reason for joining this forum. My husband and I are looking at trying to conceive mid next year & I'm looking for women's experiences with Crohn's disease & pregnancy. I have heard that some women go into remission after having a baby, or that they can experience complications during pregnancy due to their crohn's. I'm also looking for information on pregnancy while on Azathioprine. If anyone has any information on this, please feel free to post here, or PM me. I am off to search the forum! Wish me luck!!!

Wow...sorry for the novel! lol

__________________________________________________ _

Update...Sept.20/12

It has been confirmed through MRI that I have fistulas. My husband and I have still not tried to conceive since I've been going through testing to make sure my CD is stable. Our TTC date was supposed to be Dec. Now that may be pushed off depending on what we are going to do about the fistulas. My doc is sending me for a second opinion. He's on the fence about surgery because my CD seems to be relatively symptom free. I have flare for 1-2 days every 3-4 months. And lately I've been able to ward off oncoming flare ups through a change in my diet.
And the waiting game begins again....

Last edited by ~Manders~; 09-20-2012 at 09:43 AM.
12-27-2011, 02:22 PM   #2
Jessi
Moderator
 
Jessi's Avatar
 
Join Date: Jul 2011
Location: Ogden, Utah

My Support Groups:
Welcome to the family, Manders!

You were so persistent with your doc in getting that CT scan moved to a closer date! I'm highly impressed. I'm glad that you were able to figure out what was wrong, and that your GP was a completely careless doctor. I'm also really happy for you that you now have a good doctor. That's half the battle right there.

You definitely came to the right place. This is a fabulous forum where we can all be ourselves and feel accepted. It's also the best place I have found online for gathering trusty information for our diseases.

Take a look through our Parenting sub-forum. You're sure to find answers to your concerns about pregnancy there.

Good luck to you and make yourself at home here.
__________________
~Jessica

Dx'd with Psoriasis in 1993
Dx'd with Psoriatic Arthritis in 2004
Dx'd with Ulcerative Colitis on May 18, 2011

"Life isn't about waiting for the storm to pass... It's about learning to dance in the rain." ~Anon.
12-27-2011, 02:28 PM   #3
~Manders~
Member
 
~Manders~'s Avatar
 
Join Date: Dec 2011
Location: Ontario, Canada

My Support Groups:
Thanks Jessi! If I'm nothing else, I'm persisent!
Frankly, I was just tired of being sick!! I am 5'7" and a fairly big boned person. My "normal" weight is about 140lb and I was down to 115lb when I was diagnosed. If that's not the sign of a sick person, I don't know what is!?

I'm very strongly opinionated when it comes to not settling with a BS diagnosis, but I will try & tone it down a little while here
12-27-2011, 02:37 PM   #4
Jessi
Moderator
 
Jessi's Avatar
 
Join Date: Jul 2011
Location: Ogden, Utah

My Support Groups:
LOVE your tenacity!

I'm 5'8" and small boned. I was 130 but got down to just over a hundred before my diagnosis. Very very similar to you. I'm in remission and up to 135 now.

What multivitamin are you taking?
12-27-2011, 03:00 PM   #5
~Manders~
Member
 
~Manders~'s Avatar
 
Join Date: Dec 2011
Location: Ontario, Canada

My Support Groups:
I'm up to about 155...eek! I want to lose about another 10lbs then I'll be good with that!

I'm just taking a regular women's multi...pretty much whichever brand is on sale at the time!
12-27-2011, 03:11 PM   #6
Jessi
Moderator
 
Jessi's Avatar
 
Join Date: Jul 2011
Location: Ogden, Utah

My Support Groups:
Yeah, weight is a tricky thing with IBD. I guess it's tricky for a lot of normal people anyway, but we seem to fluctuate a lot more than the average Joe. Prednisone took me to 142, but I've brought it down since stopping the nasty little drug. Good luck with yours.

People with Crohn's disease often have a very difficult time absorbing vitamins. I take mine in a liquid form. I get stomach sick if I try the pills. The most important vitamins are a good B complex and vitamin D. There are others that many are deficient in like magnesium.... But I don't take anything other than B and D. Have you been feeling well with your multi?
12-27-2011, 03:16 PM   #7
~Manders~
Member
 
~Manders~'s Avatar
 
Join Date: Dec 2011
Location: Ontario, Canada

My Support Groups:
Yeah...everything has been fine! I've been taking it for over a year now with no issues. I have had issues when trying to introduce other vitamins though. I tried taking just a vit D pill on it's own, but that was a no-go. I just starting taking folic acid last Friday, and I'm still not 100% sure if that caused this current flare up, or it was just the recent stress of work & getting ready for xmas. I will keep an eye on it for sure though. Thanks for all the advice!
12-27-2011, 03:17 PM   #8
~Manders~
Member
 
~Manders~'s Avatar
 
Join Date: Dec 2011
Location: Ontario, Canada

My Support Groups:
Oh, and I should mention that I get bloodwork done every 6 wks so my doc is keeping an eye on my vitamin levels too! I have an appt with him in May & we're going to talk babies...eeeek! So exciting!! (but after reading a few posts in the Parents thread I'm already scared sh!tless! lol)
12-28-2011, 12:53 AM   #9
Jessi
Moderator
 
Jessi's Avatar
 
Join Date: Jul 2011
Location: Ogden, Utah

My Support Groups:
It's normal to feel butterflies over having a baby. I really hope you and your hubby are able to conceive. Good luck.
12-28-2011, 09:32 AM   #10
xJillx
Your Story Forum Monitor
 
xJillx's Avatar
 
Join Date: Jan 2011
Location: Pennsylvania

My Support Groups:
Hi Manders and welcome! Boy, good thing you suggested that CT scan! Who knows how long it would have taken you to get a diagnosis.

I want to start a family next year, as well, and I have done a lot of homework on the subject. This article on the CCFA is very informative. As you will see, Aza "appears to be safe during pregnancy." And you are right, many women's crohn's improve during pregnancy. The reason being that the body naturally suppresses the immune system to protect the fetus. However, the fact is, it seems to work in 1/3's: 1/3 of women get better, 1/3 stay the same, and 1/3 get worse. The goal is to be as well as possible (ideally in remission) when getting pregnant.

Good luck to you!
__________________
Jill

Diagnosed with Crohn's Disease - July 2010
Diagnosis of Crohn's Disease Retracted - October 2011

I am still sick and so confused...
12-28-2011, 09:38 AM   #11
~Manders~
Member
 
~Manders~'s Avatar
 
Join Date: Dec 2011
Location: Ontario, Canada

My Support Groups:
Thank you Jill!! That is my plan in the next 6 months. Lose a few "extra" pounds, load up on viatmins & get as healthy as possible!! I will check out the article! All the best! xo
Reply

Crohn's Disease Forum » Your Story » 7 Years Down...the rest of my Life to go...
Thread Tools


All times are GMT -5. The time now is 03:54 AM.
Copyright 2006-2017 Crohnsforum.com