Remicade vs Surgery

[Ki3]

Hi so my terrible doctor has finally listened to me! YAY

So I used to be in remission in june, but now im getting symptoms. To start with it was a breeze, a little uncomfortable after eating and the loo wasn't fun some days, but my god has it got worse...
The other day I tried a packet of crisps, got half way through and dropped the crisps and curled into a ball. TERRIBLE pains now. I am reluctant to being admitted as tomorrow im flying to Dublin for a concert. We booked to see Jessie J at the O2, we thought London O2 but last week found out its in Dublin! so only away for a day but I have to survive until I get back!

Anyway,
My doctor says according to my symptoms it sounds like I have a stricture, if I do have a stricture she doesn't want me to start remicade as it could make it worse, so I would have surgery to remove the stricture. If its not a stricture and just a flare then I will start remicade. According to my bloods its only a "mild case" (yeah ive been worse, but its pretty bad) so I might not be allowed to start remicade?! I cant go on like this, im scared to eat because of the pain, I wont play outside with my neighbour (childminding practise, im not a creep im 13 lol) and my parents are starting me in an online school until im well enough to return to my school.

We are waiting for a phonecall to say when I can have an ultrasound to look if I have a stricture, but if it not enough I might have to have a MRI (my mortal enemy) so yeah. If I continue to get worse then on Thursday after Dublin we are going to hospital as I have a passport to the childrens ward due to Crohns. If you could please share any advise that would be amazing thanks <3

 

[DustyKat]

Hey Ki3,

If you have a stricture (scar tissue) plus inflammation then the problem with Remicade is that it can heal inflammation very quickly which is good but in the process of doing that it creates scar tissue. So overlaying more scar tissue on what is already there could create the issue of obstruction for you.

If it is a stricture only then no amount of medication will do a thing. Scar tissue is scar tissue and it will need surgical intervention. If bloods have always reflected the way you felt and this time they aren't matching up...so okayish bloods but awful symptoms...that may well point to scar tissue as well as you won't get the extreme indicators that inflammatory markers give you as there is very little inflammation present. The pain is from the narrowing of the bowel and if scar tissue it becomes even more inflexible.

It sounds as if your doc is on the ball and she is doing all the right things in determining which course of action to take. Good luck with the tests and please let us know how you get on. :ghug:

Dusty. xxx

 

[Ki3]

Thank you for the reply,

yeah my doc said things along those lines but we still aren't sure about finding out if It is a stricture.. Nobody has told us about any scans or tests, yet my doctor said I should have got it done by yesterday... so it seems nobody is really getting anywhere. We have decided if we have no news by Tuesday we are going straight to the hospital so then they cant forget my exsistance. Will let you know if I hear anything xx