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Newly Diagnosed

I recently found out that I have crohn's disease. At the end of January I was woken up in the middle of the night with severe abdominal pain and it hasn't stopped since.

After about a week my mom took me to the Emergency room because i was feverish and pale and apparently a little green around the gills. They did the typical work up, blood work ultra-sounds etc. They thought my appendix ruptured. No such Luck.. I was sent home and told to come back if it got worse.. It did..

A few days later i was at work and from about lunch time on (2:30am - i work nights) i was super nauseated and feeling totally unwell.. I got home a little earlier than normal and was bawling my eyes out from pain. My mom took me back to the hospital and they repeated pretty much everything they did the time before.. Only this time i almost puked all over the doctor. oops!

Still no answer but i was referred to an urgent medical clinic. After seeing that doctor a few times with no luck i was referred to a GI clinic.

My GI specialist is awesome! The first time i saw him, he suggested 3 potential diagnoses, and instead of doing one test and seeing if that worked, he did a whole bunch of blood work and also ordered a colonoscopy.

In may i got the results back from my scope, and unfortunately it is Crohn's. So.. We started a course of Entocort 9mg for 8 weeks, 6mg for 4 weeks and 3 mg for 4 weeks..

We're into week 9, and so far I'm not feeling really any better.. so after a follow-up with my GI he suggested a few more drugs to add, but as of yet i have to make a decision about it.. so I am looking forward to getting some input and reading other peoples experiences..

He suggested either Imuran or Methatrexate. If anyone wants to share their experience with either of these let me know, Im really torn.

Thanks so much!!

Juie
 

Entchen

Chief Dandelion Picker
Hi, Julie, and welcome to the forum. I was diagnosed in May, too. Afraid I can't recommend meds (my first appt. since diagnosis is on Thursday), but others here are virtual experts on the topic. See you around!
 
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DustyKat

Super Moderator
Hi Julz and :welcome:

So glad you found us. Well you have certainly come to the right place for knowledge and experience! The people here are not only good at that but very friendly as well. My daughter is on Imuran, as a maintenance drug, following surgery and it has served her well. You will be approaching from a different angle and I have no doubt that there will be others along that have been in the same situation you now find yourself in. Good luck with the decisions you need to make.

Welcome aboard!

All the best, :)
Dusty
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Hi Julie, welcome!! I don't really have any med advice either. What are your concerns? the possible side effects? The docs should monitor you closely when starting a new med. Some have allergic reactions to some meds and have to stop them for that reason. I really think some type of maintenance drug is your best option though. I just wanted to say hello and good luck!!!
 
hi im new to the site im currently having symptoms of ibd i dont know which one it all started 10 weeks ago i woke with a burning pain in left abdomen followed by fast trip to toilet it really hurt it happened a few times after mostly at night it would be worse when laying on my left side,cramping pain that would come and go,i started taking buscopan and it helped abit,not long after whilst on holiday i started gettin dull achey pain mostly in left side,also felt tired early at night,soon after getting back off holiday i lost my appetite and lost weight nearly a stone in 3 weeks i couldnt be bothered to do anything,my stool are now back to normal and have been for the past few weeks,also ive been eating more, got my appitite back but im not putting any weight on at all,the cramping has eased but still get pain when i hold myself if im out and about or usually when i wake up,has anyone had pain in chest area it usually hurts when i lay down,ive got colonoscopy on the 16th aug ive had endoscopy blood tests and ultra sound all normal been to a+e twice but there all saying its ibd and told me there's nothing they can do till colonoscopy,any ideas guys? im just at my wits and its very scary going thro this
 

DustyKat

Super Moderator
Hi rob and :welcome:

I'm glad you found us. I'm afraid I don't have any answers you but you have come to the right place for support and information, heaps of friendly and knowledgeable people hang out here and someone will be along that has more answers than me which won't be hard! I hope you find some answers when you have further tests but unfortunately it is not uncommon to have normal test results.

I will contact Ding and ask her to move your introduction onto it's own thread so it doesn't get lost on this one. That way you will be able to receive your own welcome.

Welcome aboard!

All the best, :)
Dusty
 

Astra

Moderator
Hi Julie
and welcome

Entocort is a cortico- steroid, a 10% derivitive of Prednisolone, and whilst it's systemic, which means it only goes to the source of inflammation, it is mild in comparison, so Pred could be one option to try to blitz your current flare.
then there are the immuno supressors, Imuran (Azathioprine) and 6MP (mercaptapurine)
I've tried both, no success, Aza was toxic to my system
then there are the biologics, Humira, Infliximab (Remicade) and Cimzia, we have threads and clubs on these meds here on the forum, have a read thro them
then there are the amnio salicylates, these are preventative maintenance meds, Pentasa and Asacol containing mesalazine, an anti inflammatory like aspirin.
Each med is different, each med does something different, each Crohnie is different, what works for one, might not for another, it's a slow process of elimination I'm afraid.
My advice? try some Pred for a few months instead of the Entocort and take the Imuran with it, and Pentasa to maintain, leave the Metho as a last resort, when all else has failed.
any questions, fire away, lots of friends here for you.
lotsa luv
Joan xxx
 

Crohn's 35

Inactive Account
Hi Julie! There you are! Havent seen you in a while. I agree what Joan says, leave the methotrexate for a later time. Imuran does wonderful for some, but Pentasa is milder and stay on Entocort with Pentasa, best to add on rather go on two other drugs and change because then you dont know which on is affecting you or working for you. Imuran suppresses the immune system to make other drugs work better. Hope you get relief soon!

Glad you found a good and aggressive Gi, they are few in my experiences. Keep us posted and you can pm me anytime :kello:.
 
Thanks everyone for the replies and support! I will for sure be writing all of these names down and talking to my GI about it all.
 
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