Surgery and meds concerns!!

[kimmy86]

surgery and meds concerns!!

hi everyone
Were do I start I have so many questions!
after being in constant severe pain with vomiting
almost every other night and weight loss because
of this I was finally given a CT scan and x ray and
told they could see a narrowing in my small intestine!
since the end of november I have been on pred I
started on 6 a day tapering down to me it was like
a miracle!! I felt healthy and well for the 1st time in
months! Since then coming off the pred has been
impossible for me I am now getting by on 2 tablets a
day but after a MRI scan have been told I need surgery!
I am still unsure how much of my small intestine they are
planning to cut out I have my pre op on the 21st of this
month but still no surgery date I met with my surgeon
who told me it would be march if possible! how long after a
pre op is surgery roughly? also I am still so worried im not
doing the right thing here as I've been reading all your stories
and there are so many people whos symptoms have come back
months after surgery it's a scary decision to make I have never
even had an overnight stay in hospital so as you can imagine am
absolutely terrified! another thing worrying me is I have been told
I will need to stay on meds for the rest of my life! other than the
pred I am on pentassa and azathioprine I was hoping I'd be able
to come off the azathioprine surely long term this isn't safe to take
I have read about the many side effects of the drug including different
types of cancers I'm so confused about it all at the min any advice wud be
really helpful

thanks everyone
Kim xx

 

[Manzyb]

I think it depends on where you live when your surgery will be. I'm here in the states and had my surgery 2 weeks after my pre op appointment with the surgeon.

Is the narrowing because of scar tissue, or is it because of inflammation? It is inflammation I believe that they can treat it with steroids or maybe biologics to help calm that area down.

I ended up having strictures from scar tissue and then an obstruction when I had my surgery. If I wouldn't have agreed to it, they said it would have ended up happening anyway in an emergent situation.

Some people don't have to take meds for ever. Some of us have to be on meds all of the time in order to stay somewhat healthy. I was doing great a few years ago and stopped taking my meds and a couple of months later was in a dire situation.

I really hope you get answers you are looking for and some relief. Hang in there!

 

[Manzyb]

Also, the risks of cancer and all of that from the drugs can be scary, but your chances of cancer are increased from having active disease for long periods of time as well.

 

[kimmy86]

Thankyou for the advice!

The narrowing is caused because of inflammation
I think I have been on pred since november and
while it is working wonders my consultant keeps telling me I can't stay on it and
every time I get to the point were I have to stop it I flare and am really ill!
I have been told that is a sure sign the narrowing isn't getting any better so surgery is my best option I think I would feel so much better about it if I thought it was guaranteed to give me a few years of feeling healthy and happy again but I no there's
every chance the symptoms cud come back straight away or within months. also do you
notice any major changes in yourself after a resection like with eating etc?

 

[archie]

Hi I had a resection for the same reasons as u and I also was dreading it but long story short they wouldn't take me off the pred til I had it as it was the only option. I have been very fortunate as the surgery really helped and I have been good since. I still get the odd bad tummy day a bit like IBS. So far I haven't been told to take any meds but I'm not sure if this is the right decision after hearing other people's experiences on here and i wouldnt therefore recommend that option. I had to make a few lifestyle changes like resting more watching my diet etc but nothing too drastic. Although surgery can be daunting it can also be very successful