Crohn's Disease Forum » Your Story » My crohns kerfuffle


12-27-2012, 10:07 PM   #1
crazydaisy92
 
Join Date: Dec 2012
Location: rensselaer, New York
My crohns kerfuffle

i was diagnosed with crohns the summer after 6th grade, so 2004. i have been on medicines( mercaptopurine, pentasa, humira and Cimzia. prednizone, nexium, and other medicines to help side effects) i also have had the procedures. i even had a surgery in the fall of 2009. ive had flares and very short remissions. i am at the age of 20 and just want to be normal... not being weary of my digestive tract. i even had to drop classes at my college and lose my loans since i couldnt meet the attempted and finished ratio, then needing a job that no one wants to hire me for since i ahve no experience. all the little things seem to pile up and weigh down on me heavily, trying to crush and break me. but i dont want to break, i want to find and follow a passion, to be free of worry. I want to love, to live, to be myself and not have to worry.
12-27-2012, 11:28 PM   #2
LisaL
Forum Monitor
 
Join Date: Sep 2012
Location: Los Angeles
Hi Crazy Daizy,
I am sorry you are feeling so down right now. I know what it is like to be weary of you digestive system...I describe it to my friends by saying that even when I have no pain I am always aware of my stomach/intestines. I hope that ou can find some relief soon so that you feel better! This is a great place to get support when you are feeling down.
Lisa
12-28-2012, 12:44 PM   #3
Angrybird
Moderator
 
Angrybird's Avatar
 
Join Date: Nov 2011
Location: Cambridge, United Kingdom

My Support Groups:
Hello and welcome to the forum.

I am sorry to hear that the tum keeps giving your grief. What meds are you now on and what symptoms do you still get? Have you followed any type of diets and if does this help at all? How often are you seeing your doc and do you know if they have ever checked your vitamin levels and if so how recently?

Sending lots of hugs and best wishes your way.

AB
xx
__________________
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
12-29-2012, 02:29 PM   #4
SarahBear
Moderator
 
SarahBear's Avatar
 
Join Date: May 2012
Location: Charleston, West Virginia

My Support Groups:
Welcome to the forum, crazydaisy!

I'm sorry to hear you're having such a tough time. I can relate! It's definitely terrible.

I'm also wondering what you're taking now. Like Angrybird suggested, you might want to look into trying a diet (if you haven't already).

I hope things get better for you soon.
__________________


Sarah.
Diagnosed with Crohn's disease 12/6/08.
Have taken: Prednisone, 6mp, methotrexate, Pentasa.
Currently waiting for a new medication!

Check out the Crohn's forum chat!

12-30-2012, 12:35 PM   #5
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
Location: Naples, Florida
Hi Daisy and welcome. I'm sorry to hear of your struggles.

Let me also say that "kerfuffle" is such an underused word

What medication(s) are you on at present? What symptoms do you currently have?

All my best to you.
__________________
It's good to be back
12-30-2012, 07:47 PM   #6
Earnellzwifey
Senior Member
 
Earnellzwifey's Avatar
 
Join Date: Sep 2012
Location: Aberdeen, Mississippi
Hi Daisy I am sorry that you are having problems right now but I am glad that you are still fighting back. Don't ever give up you know they say that when one door closes another one opens. I hope that you open that door that reveals you passion and also the door that puts on the right track medically so that you go into remission.

Until then we are hear to always listen and help in any way that we can. This group has helped me through some dark times. Just being able to put your frustrations into words and then having a family of people that truly understands your pain is wonderful. So feel free to post anything at anytime.
__________________
Dx 8/31/ 2012 w/ CD
taking:
Remicade,Librax,Lomotil,Prednisone,Probiotic,
Iron,multi-vitamin, B12 injections, magic mouthwash,
Zofran.

32 medical conditions and counting. 22 pills a day with daily blood sugar testing and urinary cathing.

If you live in the loo , because you always gotta poo , then this is the place for you.
12-30-2012, 08:35 PM   #7
Mary:)
Senior Member
 
Mary:)'s Avatar
 
Join Date: Mar 2012
Location: Chicago, Illinois

My Support Groups:
Crazydaisy....what an awesome username
Im glad you found this forum because it is a great help and escape..I have a hard time also with having Crohns...In the back of my head Im always thinking about it. But in some ways Im proud of myself to be able to deal with this and every other thing thrown into my daily life. There is always hope and of COURSE you can pursue your dreams. Sometimes for ME I have to remind myself of others that have it worse and remember all the good things I have. I have never had surgery for Crohns but it seems to me alot of people who do are doing wonderful...Hugs to you xoxo
__________________
DX Crohns-2009

Fistula-2010


Humira-Every 2 weeks 40mg

Prednisone drives me nuts!!!!
01-02-2013, 03:25 PM   #8
crazydaisy92
 
Join Date: Dec 2012
Location: rensselaer, New York
thank you all so much im on 6mp and two anti biotics now, as well as doxepin. i take cimzia shots as well. and as far as diet go, i try t stay away from lettuce and broccoli as well as extremely spicey things. i see my doctor at least twice a year, but right now i have seen him every month or so. and i get blood work done every time i see him and now once every month i will visit the blood corp. the symptoms im having are intestinal pain every so often, i have a perianal abscess, i have been anemic for quite some time. (im bad at remembering my iron pills :/ ) i have a-v fistula . as for my frustrations i have recently had a sister diagnosed with ciliac. and let me tell you it was a HUGE releif having her to talk to that first conversastion we had. and again thank you all for reading and commenting
01-02-2013, 03:26 PM   #9
crazydaisy92
 
Join Date: Dec 2012
Location: rensselaer, New York
also everytime i go to the hospital im on a liquid diet for a week. so i have this great love for hospital food, its always so good to me
01-03-2013, 06:50 PM   #10
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
Location: Naples, Florida
Hi Daisy,

Have the fistulas developed since you've been on 6-MP and Cimzia or were you recently put on them? How long have you been on them?
Reply

Crohn's Disease Forum » Your Story » My crohns kerfuffle
Thread Tools


All times are GMT -5. The time now is 07:37 AM.
Copyright 2006-2017 Crohnsforum.com