New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

ALI9
Regular Member


Date Joined Jan 2008
Total Posts : 95
   Posted 2/7/2008 2:59 PM (GMT -7)   
Hi i am a new member, I have been reading our post for awhile now, I AM SO GLAD i found this site it is nice to know that their are other people out there that feel the same way and most importantl y understand !!!!!!! I diagnosed in 1987 with crohns I know I had it before that,but we did not have any insurance so i waited it out and when we finally got it you had to wait 6 months otherwise it was considerd a prexsisting condition (go figure) and when I finally got to a DR they diagnosed me with gallstones, I had my gallbladder out in july of 86. I never felt any better so I went back to the Internist and got no answers so i went on and on and on to many DR's.    I finally found a internest in aug of 87 and was diagnosed a few weeks later, I really thought I was going out of my mind !!!!!! The radioligst showed me the x-ray and assured me that i was sane. I had had the same tests done when they found my gallstones, that took me awhile to understand how that worked but.......anyway I have been on all kinds meds have had 2 resections the first one was in 92 I wasnt reponding to prednisone any more and was refered to a GI DR and she suggested I go on TPN bowel rest so i did 3 and a half weeks later I went home with it for another week, set up an appt for surgery right after easter and my bowel perforated. and i was back in the hospital another 10 days.MY son was only 18 months old and had to live with my mother and father for all this time thet lived about 2 hrs away my husband had to work so he couldnt be home. I was in remission for about 7 yrs then it hit me agian my GI Dr did everything he could steriods,immuran,pentasa,encort,some remicade treatments but the insurance wouldnt pay to have every 8 weeks, the colonoscopy showed narrowing he couldnt even get a ped scope threw it, The surgeon i saw had the nerve to tell me i didnt LOOK SICK ENOUGH for surgery Ha!! Jerk so we repeated the colonoscopy and no change i wasnt responding to the meds at all after many tests ect... finally in sep. 02 i had surgery (i guess my apperance changed) I weighed about 97lbs . when you have had this horrible disease you get tired of people saying you dont look so good today that you try and make yourself look better so they dont know or ask. In feb 03 i came down with what i thought at the time was the flu......well it was a flare and i have been struggling ever since i got the remiocade approved and was on that for 2 and a half years. My GI ordred a test because my labs kept showing I had no Immuran in my system ( immpossible) come to find out that i am missing an enzyme to break it down and was becomming toxicThe remicad stopped working and I was having major infections anyway, Including respitory sepsis urinary infections not to mention MRSA enough being sick is enough I tried humria and had an allergic reaction to it ,Ihave a vey sensitive latex allergy , know i am without any thing sad   there is more but this is already long enough.

bentwistle
Regular Member


Date Joined Jul 2006
Total Posts : 330
   Posted 2/7/2008 4:10 PM (GMT -7)   
Welcome! It sounds like you've had a rough time of things. I have also had medication problems - but not as bad as you! Does your GI have any ideas for your treatment since you can't use remicade or humira? Can you get involved as a test subject for one of the new trial medications?
I'm finding this site helpful for great tips from others regarding medications, diet and what signs to watch out for (and a great place to vent when necessary ;) Plus as you say, it's nice to be able to correspond with others who are in the same boat.

I hope you can find some way to ease your symptoms soon,

Bev

bentwistle
Regular Member


Date Joined Jul 2006
Total Posts : 330
   Posted 2/7/2008 4:10 PM (GMT -7)   
Welcome! It sounds like you've had a rough time of things. I have also had medication problems - but not as bad as you! Does your GI have any ideas for your treatment since you can't use remicade or humira? Can you get involved as a test subject for one of the new trial medications?
I'm finding this site helpful for great tips from others regarding medications, diet and what signs to watch out for (and a great place to vent when necessary ;) Plus as you say, it's nice to be able to correspond with others who are in the same boat.

I hope you can find some way to ease your symptoms soon,

Bev

Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 2/7/2008 8:16 PM (GMT -7)   
Welcome to HealingWell! (Sorry you have to be here, but ther IS no place BETTER for a Crohnie).
Interesting, I actually started having mysterious ailments years before, but that is the same time frame (1987) that I started having rectal bleeding. We may be long lost siblings!

Sincerely,
Matthew

ALI9
Regular Member


Date Joined Jan 2008
Total Posts : 95
   Posted 2/7/2008 8:52 PM (GMT -7)   
Thank you for the replies, I have been working with mayo clinic in Rodchester Mn they are very good there. I am going back in march to see a surgeon. I have been sick all summer and winter, Ive also tried the TPN agian and kept getting infections in the lines so we gave up . I cant seem to gain wieght and i am becoming very malnutritioned and other things are starting to happen , like my heart is in a sinus tachycardia and we cant get it slowed down. I of course I am always tired and have a tough time getting through work every day but find it good theraphy. luckly i have a boss that understads how it feels to be sick. I have been researching, the clinical studies there are few going in my area U.W Madison. My goal was to reach 100lbs and I made it to 101 yippie!!!!!!!!!!

broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 2/7/2008 9:37 PM (GMT -7)   
Wow...what a story ALI. Like so many of us you struggle just to get though each hour of the day. Welcome to healingwell and I hope this post finds you having a victorious moment of peace tonight.
Dx'd Jan'06, 1st Resection 7/06, Predinsone, Humira, Imuran, B12 injections, Nexium. Secondary conditions: Psorasis, Acne, Fatigue, Joint Pain, Lactose Intolerant, gallstones, fibroid cysts, peri-menopausal.


stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 2/7/2008 11:11 PM (GMT -7)   
Good Morning
Welcome to HealingWell and the Crohn's Forum.  You will find the members here warm and caring.  They also have the most info on the net as they live with this illness daily. :-) I am glad you have been reading the threads and I hope you stay with us.
Respectfully
Kitt
 
Kitt, Moderator: Anxiety ~ Panic  ~ Crohn's
*~* http://www.healingwell.com/donate *~*
It is health that is real wealth and not pieces of gold and silver.~Mahatma Gandhi~
 


teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 2/8/2008 3:42 AM (GMT -7)   
Hi and Welcome, You have been through alot. This is an oustanding place with good ppl here. I hope to see you around.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital
in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.
 My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
My Internest doctor has me on Lisnopril-HTCZ and Folic Acid. Diagnosed
with Osteoarthritis July 2007
 

New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, December 10, 2016 5:42 AM (GMT -7)
There are a total of 2,735,801 posts in 301,336 threads.
View Active Threads


Who's Online
This forum has 151439 registered members. Please welcome our newest member, owillie.
176 Guest(s), 7 Registered Member(s) are currently online.  Details
scifigal2k, Rebel_runner, summer16, Loutucky, ChickenArise, kodaska, Not-there-yet


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer