New here

[duncs123]

new here

been dieignosed for 6 years now with cd been on asacol pentasa been put on preds 8 5mg tabletss a day reducing 5mg every week have had bearum meal scopes finally found out i had cd with a white cell scan and just going for my first MRI scan in march and doc thinks i will have to end up with surgery had heaps of blockages and lost lots of weight just getting fed up with it now. dont really no what gonna happen with the operation and hate being on this preds

 

[Manzyb]

Hi Duncs! Welcome Sorry you are having such a hard time right now. It sounds like they need to give you something other than pentasa/asacol, those are very mild medications. Prednisone sucks, but does help things for the most part (obviously doesn't cure you).

I really hope you get some better treatment so you don't have to suffer much longer. You found a great place for support.

 

[Angrybird]

Hello Duncs and welcome to the forum :bigwave: I can only agree that your current meds are not strong enough. The pred will do a great job at getting any inflammation under control but the idea is to be on this for as short a time as possible, has the doc got you on a calcium supplement? If not get onto this ASAP, you need to be on something like D3 Forte whilst on this med to help protect your bones. I would hope things are not blocked enough that meds like Remicade or Humira cannot perhaps be of help first before surgery, perhaps have a chat with your doc about these? For info about them look at our treatment forum, at least you can see if these are something you would even want to consider. It sucks that things have got to this stage and I will keep my fingers crossed that surgery can perhaps be avoided for a while yet. Please keep us updated on how things are going for you.

 

[duncs123]

my doc has never mentioned any thing other than the drugs that im on and that im in for a mri scan on the 12th of march and he said we will take it from there
been been really bad last couple of weeks and the preds arent doing much apart from being angry alot. i have lost 2 stone since december and not really eating much going to see my doctor on the 28th of feb ill ask him more about the options that you have said

ty duncs

 

[Angrybird]

Morning! I would perhaps get onto the IBD nurse at the hospital, the 28th is still a fair way off and as you are having a bad time I think they shoud try and see you sooner.

The pred has also made me more of an angrybird than usual too, I am quite astonished at how quickly I am losing my patience with things.

 

[guest9933]

I'm in the hospital right now typing this as i'm on hydrocortizone and my colon is severly inflamed I have been on methotraxate, humira, infliximab, imuran and so much other stuff I can't even remeber all of them all I know is I'm done with all the drugs as I have joint paint and I'm so over the infalamtion always coming back that I'm speaking with a surgeon tommorow and discuss my options as I'm over all the drugs and suffering

 

[duncs123]

Hey that's me been in hospital since Friday was on the preds for 3 weeks never done anything now in getting them injected and I'm on aza now just had a ct scan yesterday cause I haven't been able to go for 4 days now my doc says he thinks it a blockage so just got to wait and see what the ct scan shows up

 

[Angrybird]

Oh hun that doesn't sound good Do you know when the CT results will be available? Has the doc said what they will do if there is a blockage?

 

[littlemissh]

At least things will move a bit quicker now you are in hospital and they can control your symptoms better.
Good luck.

 

[duncs123]

Hi got the results back this morning and I'm getting a resection was ment to of had it by now but moved to first thing in the morning basically just getting open surgery and will see how bad it is and decide if I need a stoma or not so happy apart from fasting all day then getting told it will be in the morning so will lett you all no how it went in next few days

 

[Artificial]

Hi Duncs,

Hope your CT scan went ok today

Sounds like a similar situation to me, I keep having lots of partial blockages and have been told I need surgery.

Hope the hospital manage to make you feel better soon! x

 

[Angrybird]

Oh I hope things go well tomorrow :hug: Definetly keep us updated as and when you can.

 

[duncs123]

Hey that is me just having a bowl of soup and ice cream after my op yesterday morning was a resection they removed 2 half foot of my small bowle do feeling ok about I haven't got a stoma so that's a good thing. They are tapering me off the preds and I'm on 75mg aza from now on so things look to be doing good

Ty for your support

 

[Angrybird]

Hiya,glad to hear that you didn't need a stoma in the end make sure you take it easy and get lots of rest. How many incesions do you have? Can you see them at all?

 

[duncs123]

Hey sorry not replied beentook not well had to have my stomach drained all day and took a funny turn tapering off the steroids I only have the one scar wich runs right through my belly button up and down the way and he stitched it from the inside one continuos stitch he said I should hide it tho im not to fussed if you can see it or not

 

[Angrybird]

Sorry to hear you have had a turn for the worse How are things today?