What are odds I need surgery?

[heartofwisdom]

I'll meet with doctor on Dec 18 to decide if I need surgery. Its driving me nuts. Dr said they will probably remove part of my colon but depend on Enteroclysis Guided CT results.

How do they make this determination? Several narrowed high pressured ares in my small bowel. The narrow areas stop food, build up pressure. At the time I didn't know enough about narrowings to ask the right questions.

The camera test showed several ulcerated area, several areas scalloped villi, and a few hemmorrhagic (bleeding) foci and clumped mucosa. And several area of hold up, bile entrance, and retained fluid. He just kept pointing to photo saying that fluid shouldn't be there.

Go ahead. Take a wild guess. What are the odds? 50-50? 80-20?

Thanks,
Robin

 

[soupdragon69]

Unfortunately for you Robin not one of us here can make that guess..

The doc needs all the available info to be able to make the appropriate choices for YOU as an individual.

It depends on the level of severity, how much your quality of life is impacted on, what meds they could use either with or without surgery and the possible impact they may have both positive and negative. At the same time he must look at preventing an emergency situation occurring down the line as planned surgery when you are more stable is much much better than as an emergency, fighting infection and possible perforation for instance.

Surgery itself can bring relief but remission is not guaranteeable for any length of time. Also being an autoimmune disease means it could re flare again at any point and then again it may not! That is the nature of the disease we live with - sorry!

Your doc may feel surgery is a viable option for you and you still may need meds afterwards to maintain a decent quality of life so these are things you need to ask him about.

Each of us plays the waiting game (me too at the minute) in various ways so you are definately not on your own in relation to being frustrated and feeling you are in a kind of limbo waiting for the answers that impact on you.

Just take it one day at a time Robin ok?

Thinking of you..

 

[heartofwisdom]

I know its just a guess. Just frustrating. I felt if I was more prepared I could have asked the right questions to get a better feel for how the dr was leaning.

I need to learn patience. I am probably more nervous becasue of my heart condition. HOw can they do any surgery when I can't come off plavix??

I'll be talking to the cardiologist.


Thanks for listening guys and understanding!
Robin

 

[soupdragon69]

On the Plavix aspect they will manage that as and when you go for surgery. It is possible to put you onto heparin injections or an alternative whilst you are in hospital and then return you to your Plavix (Clopidogrel is the generic name) post op once they are happy with your clotting levels.

As Pen says trying to guess the move/thoughts of your consultant can be a difficult and frustrating thing and its best to avoid it purely because he wont know himself until he talks things through with you based on all the test results and how you are clinically.

Try to look at it as an "option" for now and have a look and ponder about some of the meds you could end up on too. That way if he mentions any of them you will have a LITTLE bit of an idea what he is on about!

Dont leave your consultation until YOU are happy with all the answers and take a list of questions with you too!

 

[drew_wymore]

I am weighing surgery right now myself. The doctor laid out the statistics, 80% of people who have the surgery that is being proposed for me is remission maintained at 5 years. The numbers are different obviously depending on where your CD is. Mine is confined to the ileum so those numbers speak to that.

I have an appointment with my GI today, then the Surgeon tomorrow. So I'll know more then.

I hope you get some answers and find treatment that works well for you and get relief.