Where to go from here!!!

[Sharon76]

Well i had a follow up appointment today with my consultant and it didnt go too well.

Im staying on the pentasa and steroids but he has now put me on azathioprine. Which im not happy about, but this is my only chance to see if they work before surgery. Also he is keeping me off all food for tow weeks and has put me on fortisip instead. He wants to rest my bowel.

They are keeping a close eye on me with me being on the azathioprine, having regular blood tests done. Got to go for a blood test next week and see the specailist nurse.

Im quite scared of the moment, scared of going on these tablets.


I was hoping for better news

[Angela22F]

Hi Sharon

Day by Day...

Hopefully the azathioprine will do the trick. Did he say how long he was going to let you try this regime before offering surgery as the next step??

Fortisip is supposed to be used in conjunction with food... not as a replacement (to my limited knowledge)... did he offer any other supplements to ensure you don't develop any deficiencies? or just to keep levels up?

I can only imagine how scared you must be. But it seems you are in good hands. Did he explain to you how quickly they will be able to detect any damages caused by the azathioprine? From what I have read, with regular screening you will be fine, they will be able to detect and alter the dose before any harm is done.

Is surgery becoming more of an option for you now?? I am assuming then that the stricture has still not responded.

Take each day, and it's symptoms, as they come. I'm sure you are going to be fine.

Sending out comforting hugs

Angela

[Sharon76]

Hi Angela

No, he didnt say how long he wanted me to go on the tabs or how long it would take for them to work. I should have asked but i was so fed up at the time it didnt enter my head. They are keeping a close eye on me though.

He said when i had my recent batch of blood work done the results wasnt too good because the crohn's is flaring up again.

The fortisip tastes vile, ive had it before and he wants me to drink 8 cartons a day!!!

The thing with this when it flares up is that not only do i get the pain but i also get mood changes as well, so it must alter my moods. At the moment im just feeling really low, aching, pain on and off and fed up of this this not being under control.


Have you had any more tests yet?

[Angela22F]

Hey

I hear you on the mood changes... I have them frequently... and know how frustrating it can be... it still amazes me how much digestive issues really messes with your body as a whole.

Is there an alternative to the fortisip maybe? there must be something else that doesn't taste so bad. And fortisip, from what I've seen, has many different flavors... would that make a difference? or are they all just as bad?

I have not had any more tests... I'm still waiting on the new gastro to get back to me with an earlier appointment. I don't think I can wait until November! I have to see the GP though on the 16th for another B12 injection, and he then wants me to have more bloodwork done - to check my iron and B12 levels. What does your doc check when he does bloodwork? I'm thinking mine is not checking for what he should be...

I'm having a hard time these past few days again... I've returned to diarrhea, absolutely no appetite, and raging stabbing pains mostly on the right along with a bad flare in my joints. Plus I have a sinus infection on top... just lovely.

[Sharon76]

Hi Angela

When my doc does my bloods he does a full blood count, renal profile, liver profile, ESR, Iron profile and CPR. Sometimes he does my B12 checks as well.

The fortisips are horrible regardless of flavour to be honest, they are really thick and leave a horrible after taste in my mouth.

The joint ache isn't nice, i've been getting that alot lately and sometimes that is worse than the crohn's. I still haven't found anything to relieve the joint ache. Have you??

November seems ages away to wait for more tests, surely they can bring it forward?