Sick of this disease!!

[mareeclaire]

Well, Hi! my name is Claire. I am 32 years old and are currently going through the worst flare up I have ever had!! I first noticed symptoms of Crohns when I was 16, I was diagnosed when I was about 22 and then told it was Proctitis....so I dont know what I officially have..but its Bad!!
I am currently on my second course of Prednisone this year, taking 40mg daily. I am supposed to be taking Pentasa tablets and Pentasa suppositories and Predsol suppositories as well, however I havent started on those yet (my history of Suppositories isnt that great as I have trouble keeping them in.)
I have to rush to the bathroom 10-20 times a day and cant actually remember the last time i had a solid movement, its usually just a bloody explosion. My worst nightmare came true last week when I didnt get to work in time one morning and had an accident....That would be the most humiliating experience of my life!!
Last time I took the Prednisone it worked within a day, I have now been on it for about five days and its not really doing anything and the blood is still really bad so I now have to do some stool tests to check for parasites.
I live a very healthy lifestyle. I eat fresh healthy food and I exercise regularly (although I've been a bit a nervous about running lately as theres not a lot of bathrooms along the way!!)
I am heading to hospital this week to have a 6 hour iron infusion, I'm sure that will make me feel better I have also been told I have a blocked fallopian tube due to the crohns and doctors have reccomended IVF, so this has added to my stress lately.
Well that is my story...I am trying to keep a positive mind and tackle this disease for good!!

 

[mikeyarmo]

Welcome to the forum Claire!

I am sorry to hear your going through such a bad flare now.

Your accident is nothing to be embarrassed about as it is a common issue many of us have had to deal with. It is certainly not ideal, but you should not feel bad about yourself for it.

I hope the iron infusion does help a lot. Let us know!

 

[kateel]

Welcome Claire! Thank you for sharing your story!! I'm so sorry to hear of this terrible flare!

I'd like to hear more about the iron infusion...I have been dealing with anemia for years and am unable to keep my iron up. I wonder if that would help for me??

 

[Jennifer]

Oh yes iron infusions can be a big help. I hope it works out well for you Mareeclaire (talk to your doctor about it Kateel). Sorry you're in such a bad flare and I hope it gets under control soon. Welcome to the forum!

 

[ameslouise]

Hi MareClare and welcome!

Sorry to hear you are having such a rough time right now and the pred isn't working as quickly as in the past! With losing all that blood, no wonder you need an iron infusion!

Do you and your doc have any plans to try something stronger than the Pentasa? Sounds to me like you need to step it up to one of the big guns like Remi or Humira.

Good luck, hope the iron makes you feel better and hope you can get this flare under control soon!

- Amy

 

[mareeclaire]

WOW!! Just popped on quickly and found responses to my post!! What a wonderful welcome...I feel apart of this special club now
I will let you know how i go with the iron (like most of you probably, my body does'nt absorb it when I take the pills) I cant wait...Looking forward to getting a bit of coluor back into my face!
Ameslouise, the next thing they want to put me on is IMURAN.....not really liking the sound of the side effects though! But we'll just see how we go in the mean time.
Thanks soooooo much for the warm welcome!
Claire

 

[DustyKat]

Hi Claire and :welcome:

I'm so glad you found your way here! There's Loads of friendly and knowledgeable people and we would love it if you stayed around. Anyway, it's always great to add another Aussie into the mix!

Hope you baked a cake for lizzie's birthday! :ylol:

I so hope the infusion has you feeling better and the docs can get things sorted for you again. My kids are on Imuran, super scary making that decision I tell ya but they are both doing well and have had no side effects.

I've been back and forwards to Sydney numerous times in the last 6 months, I grew up there but it's too busy for me now! :eek2: :lol:

Good luck hun and welcome aboard.
Dusty. xxx