New To All This And Finding It Very Difficult To Come To Terms With :(

[AmandaxXx]

Hi all.
I am new to crohns disease and finding it very difficult. I was advised to this group by my consultant so going to give it a go.
I am 23 years old and have a 3 year old son.
My problems started in February 2012. And iv never had a good day since. Every day I use the toilet around 6 times a day, but on a very bad day it can be anything over 10. Since feb iv never had a day where my stomach isn't in pain. I was diagnosed with IBS in april bt was taken to hospital in severe agony shortly after. I have had a barium test, colonoscopy, ecg scan, x rays, endless amounts of blood tests, and so many trips to hospital in an ambulance that iv lost count. In may I was diagnosed with crohns disease and put on pentasa for 3 months which never worked for me at all. On 29th aug I was in the worst pain iv ever had of a flare up and was rushed to hospital where I was admitted for 6 days undergoing so many more tests. I was on a drip and put on steroids. I'm now taking steroids for 8 weeks and will start my new medication after that and hoping that will work. For 7 months iv never had a day of no pain and no rushing to the toilet and I find it so hard to deal with. Days and evenings out just arnt the same. Sometimes I even put off going out just because I'm scared I won't find a toilet. And I hate living like this. I cry over it every day. Its still so new to me. I don't know what foods I should or shouldn't eat or anything. Any feedback at all will be much appreciated. Thank u.

 

[xSophiexx]

Hi AmandaxXx sounds like your having a really bad time at the moment! Im 22 and also only recently diagnosed and trying to work out what meds work and what doesn't and diets and things. I don't have much advice other than this is a great place to find information and theres alot of very knowledgable people here! Hope you feel bit better soon! x

 

[AmandaxXx]

Thank you for ur post sophie. Reassuring to see someone of a similar age to me as I havnt as of yet. Wish u well too xx

 

[Angrybird]

Hello Amanda and welcome to the forum.

I am sorry to hear you are having had such a tough time of it, there is certainly a lot to take in when first diagnosed (I was 17 at dx but had had symptoms for at least a year before that). Just know you have come to the right place for lots of helpful info and support :hug:

Out of interest can you recall the name of the new med they are starting you on?

AB
xx

 

[AmandaxXx]

Hiya, thank u for the message. Hope ur ok
The new meds I will b starting on is called azathioprine :s x

 

[xSophiexx]

AmandaxXx I was started on Azathioprine too, they started me on 25mg to see if I could tolerate it, I was on this for 3 weeks having weekly blood tests and all was fine (the doc said 25mg is pretty much as if your not taking anything it just means they can see if your allergic etc) then they ramped the dose up to 150mg and all of a sudden omg the side effects hit, made me violently sick within an hour so Ive had to stop taking it for a week then after a week only take 50mg a day :S from what Ive read its a wonder drug if you can tolerate it so fingers crossed youll be fine!! Are you on Prednisolone as well??

 

[Angrybird]

Hiya, thank u for the message. Hope ur ok
The new meds I will b starting on is called azathioprine :s x

I am doing well thank you, I am on 6-mp which I suppose is the 'sister' drug to Imuran. We do have a forum dedicated to this if you want to chat with others who have been on this for a while: http://www.crohnsforum.com/forumdisplay.php?f=64.

 

[Tenacity]

Hi Amanda - welcome to the forum.

I am so sorry to hear about all you have been through over the past 6 months!

The azathioprine can take between 6 - 12 weeks to work, so you can't start it after your Prednisone. Because you are feeling so poorly, I personally would ask for something like Remicade - but that's just my opinion. I think its better to hit it hard right from the beginning, instead of going through a whole array of meds that don't work.

Also see if you can supplement your diet with drinks like Peptamen 1.5. You will be able to absorb the nutrients better as it is specially formulated for an impaired gut.

If the runny tummy gets bad, ask your doctor to write a script for Lomodil, and drink Metamucil.

Please let us help you with any questions you may have - or if you just need some support - this is a great place to come to.

Hope you feel better soon - but definately get onto some long term meds asap. You will need it in your system by the time you start weaning down off of Prednisone.

 

[AmandaxXx]

Thank u sophie. Have read up on side effects etc n they don't sound good at all! Hopefully I can tolerate them. Fingers crossed.

I was also told they take a while to work so will speak to my doctor about something in the mean time.
Thank u
X

 

[Catattack]

Hi Amanda, it is tough when your first diagnosed...I was like you, running to the 6-10 times a day, stopped going out etc. Have hope though..the medication for Crohns is pretty good and should work eventually. I was put on Prednisolone initially which is working (only go to the loo once or twice a day bow!) the only problem is getting off it..every time I taper the symptoms return, so I have also started on Azathioprine whilst still being on steroids (Ive been on the Pred for 12 weeks and Ive got to continue on 20mg for another 8 weeks-to give the AZA a chance to kick in). The AZA has been ok for me...Im only the fourth week in and its just making me feel a bit queezy/tired.

So hopefully you will be on the mend soon and enjoy less frequent loo breaks! Good luck with the Azathioprine. If that doesnt work for you then there are other drugs they can try such as the Biologics such as Humira so dont give up!

Catherine x

 

[David]

Hi Amanda and welcome to the forum I'm sorry to hear you're struggling so much, my heart goes out to you

First off, you may want to give this thread a read.

Second, you mentioned dietary advice. We have a forum dedicated to diet. Personally, I'm a fan of both the paleo diet and specific carbohydrate diet for people with Crohn's disease. They seem to help some folks quite a bit. I'm also a huge fan of enteral nutrition to help get things calmed down and maybe into remission believe it or not. Since it will take awhile for the Azathioprine to kick in, you may want to discuss the idea of enteral nutrition with your consultant.

We're here for you.

*hugs*

 

[AmandaxXx]

Thank you catherine and david.
I have looked on the links of the meds and diets.
They r very interesting to read. All information is great atm
As its all so new to me.
I'm also gonna go back to my consultant with my new information about diet and meds.
Thanks again all for been so helpful and welcoming.
Amanda