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06-25-2013, 10:17 AM   #1
Aphrodite_x
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Location: Scotland, United Kingdom

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My Story :) Hi Everyone

Hey guys,

Came across this forum after googling (in desperation!) something that will help me with my complete loss of appetite during this horrendous flare up!

I'm a 26yo female and was diagnosed April 2010. I was lucky in the way that I had only really started getting bad symptoms about December 2009, and had a really good gp who spotted it right away, and got me started immediately on 40mg (is that right, 8 tabs?) of pred.

Roll on April, I was feeling really ill, sent to hospital, quick sigmoidoscopy later and I was diagnosed. (It was supposed to be a colonoscopy, but I completely freaked out during it so they had to cut it out short). Back on pred, pentasa and a lifetime supply of buscopan.

I was fine for a few years until I had a mini flare up about January 2012, when I was put on azathioprine along with my pentasa and buscopan. These worked brilliantly, so brilliantly in fact that I actually forgot I had the disease and decided stupidly to stop taking them! This was around August 2012. Regret that now....

Now in the middle of the worst flare up ever I was put back on the mighty pred about 8 weeks ago, but it wasnt working. Started azathioprine again about 2 weeks ago but that takes 12 weeks to get to its maximum. So I'm basically stuck in agony until it starts working the way it should. Just spoken to my consultant who says if it gets worse I'll have to be admitted for IV steroids, which is my worst nightmare. HATE being in hospital.

I must be going to the loo about 16-17 times a day. I am up all night every night, in total agony. I have burns on my tummy from using my hot water bottle so much. My poor wee bum is in agony!! I have some tramadol that I've been taking to try dull the pain but its not really working either.

Anyway, thats my story! Sorry just realised that might not all make sense or different medications because I'm in Scotland?

Looking forward to reading about everyone's experiences.

K
06-25-2013, 10:15 PM   #2
Ginger is her name
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Join Date: Jun 2013
Location: Reading, Pennsylvania

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I'm so sorry to hear you're in a flare! When I would flare, I remember the food, and it makes me sick to even think of eating it again... Protein is helpful to get... Whether its a shake, eggs, or creamy nut butters (no whole nuts!). That's what drs suggested to me and also to help gain/stabilize weight and promote healing. I recently had a resection that resulted in a colostomy; my stoma is named Ginger. Since surgery I feel golden! No flares, no difficulty maintaining weight! I still need to be mindful about what I eat, but I feel like a new woman! Good luck to you and welcome!
06-25-2013, 10:51 PM   #3
723crossroads
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Hi and welcome to the forum! Hope you get your meds all straightened to where they used to be and you get some relief. You will love this forum, full of really helpful people with alot of knowledge and heart! Glad you came aboard!!
06-25-2013, 11:34 PM   #4
afidz
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Location: Mckinney, Texas

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I hope you start feeling better and you can avoid the hospital.But if you do have to go remember that its to feel better. IV steroids would probably be a good idea to bring down inflammation and maybe lessen your bathroom trips. Keep us updated on how you get on in the next few days.
__________________
Crohn's since 2007
15 Abdominal Surgeries since 2008
Severe Non-repairable abdominal hernia
Ankilosing Spondylitis
Inflammatory Arthritis

Failed meds:
Humira
Remicade
Asacol HD
Cimzia
Methotrexate
06-26-2013, 03:21 AM   #5
Aphrodite_x
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Join Date: Jun 2013
Location: Scotland, United Kingdom

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Hey everyone!

Thank you for your replies its nice to have a place to come to where people actually understand how you feel, I dont think a lot of people understand just how difficult and painful and horrible having crohns is.

Had a better night last night thank goodness, only woke up once the whole night! And I managed to eat some last night which is also good. Feeling ok this morning as well, so hopefully upping my pred again for a few weeks is going to help until the aza kicks in.

I've been reading a girls block Ginger, about her having her stoma surgery and getting her bag. Hers is called Margaret! Glad to hear having yours is helping you.

I havent been able to leave the house after about 8pm for the last 8-10 weeks so this wee place will give me somewhere to come and chat to people hopefully!

Thanks again for your support have a nice day everyone!
06-26-2013, 03:56 AM   #6
Aphrodite_x
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Just realised! The girl whose blog I read is on here too it really is a small world! Think her username is GEC? Hi Gabi!
04-23-2014, 05:27 PM   #7
guest78
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Hello!! Yes it's me!
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Diagnosed Jan 2008, aged 16
Now 21
Currently on:
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Aza 125mg

New Ileostomy, 'Margaret' born June 6th 2013

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