Enough is Enough.... But it will never be Enough....

[Star Girl]

Hi all,
I am new to this forum thing but thought i may as well give it a whirl. I was first diagnosed with Crohns in 2003ish all i remember was it was around December. I subsequently had a year of on/off steroids and trying every alternative medicine going. After a year of progressivly getting worse and saying 'well i have good days and bad days' The worst day came... I woke up and couldn't move for pain, couldn't stand walk anything. After getting taken to hospital and spending a week in there with intravenous steroids which as soon as they took them off me resulted in the same excruciating pain D Day came. I woke up in my hospital bed throwing up fecal matter! Lovely i know. I was in surgery by 1pm and a foot n a half of terminal illieum was removed along with a rather big abses which had subsequently exploded. Despite this horendous ordeal i became better with time and lived a pritty much normal life no drug therapy no symptoms until last July.... (6years)

Since last July i have had persistent symptoms of pain cramping and mixed dihorea and constipation. Since getting a new consultant at Cambridge I have had 2 MRI's, CT scan, Colonoscopy, Glucous Test, elemental diet and Fortisip. All since January. They have told me that i have a 5.8cm stricture that will need removed however they want to see if the azathioprene will work 1st but that surgery is enevitable.

Surgery i don't mind so much but if one more doctor says 'lets wait and see how it goes' I am in serious danger of being done for GBH.

Just really looking to vent and to see if anyone else is as frustraited as me? I would just like my nice symptom free life back a year is just too much.

NB - I am dyslexic and can't find the spell check button! Sorry

 

[David]

Hi there and welcome

Yes, there is much frustration to be found here. IBD is so frustrating! In fact, we have a subforum dedicated to venting that you're more than welcome to utilize as often as you like

Did they determine if the stricture was inflammation or scar tissue?

Again, welcome!

 

[Star Girl]

Hey thank you for the reply Well this is the problem/holdup. They say my MRI and CT show some inflamation but my bloods show none. Hence they are unsure if the Azathioprene will work or not but they are airing on the side of not. Three doctors 2 Gatros and 1 surgeon have all said it's more than likely i will need surgery. I don't mind the surgery and would almost welcome it at this stage to atleast try and return to my version of normal. Got to see the specialist sister and consultant again tomorrow. so that will be another 2 hours in the hospital to be told 'well lets jsut wait and see' I've been in once every 2 weeks on average since January and it's getting a bit too much.

 

[David]

So they're leaning towards scarring and surgery since there's no inflammatory markers. That makes sense.

We're here for you anytime you need us!

 

[Angrybird]

Hello and welcome to the forum :bigwave: Looks like your only up the road from me! I am personally not understanding the thought process of the doc here, if they go the Azathioprine route then you have a wait of up to 12 weeks to see if it is even working and to me if you have a narrowing down to scarring I cannot see how this is going to help. I would say to put your foot down today and tell the doc/nurse and say you are not happy to 'wait and see' and want a better plan put into place.

Let us know on how you get on.

AB
xx

NB Out of interest who is your consultant, I assume your at Addenbrooke's?