Surgery or not??

[Seancuig]

Hey all
Just reaching out for advice/opinion
Have been diagnosed with crohns just over 2 years

Last 6 months I've had a good bit of activity
CMV infection with secondary pneumonia
UTI
Chest infection
Bad flare (up to 14 movements a day) which lasted 6 weeks till IV steroids got it under control (ish). As in the diahqreea has stopped
Now experiencing good lot of abdominal pain with irregular movements
Meds are:
Infliximab infusions( 2 so far another next week)
Imuran
Mezavant
Omezoprole
Predisonole (tapering down - currently 15mg daily)

Generally I feel poor. Very low energy and quite lightheaded and headachy

So,this was not just a moan . The option of surgery seems to be next
For me this would mean a proctecomy so I was wondering if anyone could share their views
Should I tough it out and hope the meds start to improve things?
Should I bite the bullet and go for surgery?

I've 2 small kids and I feel I'm missing them cause I'm too tired to do things

Any views welcome.
Cheers
John

 

[If*]

Hello, to have surgery is such an individual choice ~ super sorry I can't be much help there. I did want to mention that since you pointed out being tired which is often common with IBD ~ it might be a good idea to have your B12 and Iron checked if you haven't already. Ask your Dr.

Wishing all the very best.
Peace to you.

 

[Seancuig]

Hey
Thanks for that. Both normal apparently . Get bloods done every 2 months

Cheers
John

 

[QueenFox]

Hi John,

The decision of surgery is always a tough and conflicting one, I am also considering having some surgery and have to wait till February to get the latest review from the Doctors. This waiting period is full of frustrations, doubts and fears when all you want is to be healthy.

A few things I found helped is weighing up the pros and cons of surgery and med treatment. Not just short term either - think long term even though it is hard to. I have been asking myself which will give me a better quality of life now, in 10 years, in 25 years etc?

Also try to gather as much info about each treatment as possible, the more informed you are the less surprises you will have and can prepare yourself for any situation. This will also help when talking to not only doctors but also your loved ones so they can also support you before,while and after making your decision.

Finally some advice from my surgeon was make sure you fully accept that many surgical options to help treat crohns/colitis may become permanent. Do not go in thinking 'I can have a temporary ileostomy and reverse it later' etc. Now this may be scary and a bit harsh but I really appreciated a bit of honest perspective and I, after thinking a lot about this, know I would be a peace if I had to have a permanent ileostomy I could accept it, even if it were a little scary a first. This would also apply to meds as well e.g. continued use of prednisone can cause permanent havoc later on like induced osteoporosis.

I hope you find the right treatment for you and you can get back your best

 

[Seancuig]

Hey there
Thanks for that. I know that the surgery will be permanent and irreversable. Stoma will be there for good - I'm pretty sure I can handle that if it means feeling better and getting quality of life back, but am interested in all experiences - good or bad

Cheers
John

 

[lc31]

Hi John

Sorry to hear how weak u are feeling I have been there and don't wanna go back! Obviously surgery is a personal choice and some people prefer not to but I just thought I'd say I have been given a temp ileostomy one week ago and can't tell u how much better I feel to have no swelling on stomach, pain, fear of not making toilet etc I think the biggest hurdle is getting your head around the bag. Anyways hope things take a turn for the better

 

[Seancuig]

Thanks for that - yea - I guess my head is telling me that feeling better is well worth the inconvenience of the bag - My nephew has a bag after having UC and has no issues with it either, so I was looking to see what others thought.

Thanks for sharing - Hope you continue to feel much better

John