How do you know when it's time for surgery?

[Hermione]

Hi all,

I am currently on humira 1x/week, and 3 imuran pills/day.

I'm getting cramping and I have inflammation going on.

Other than that, I'm overweight, and feel fine physically.

Humira seems to not really be working anymore, is it time for surgery?

 

[nogutsnoglory]

Surgery should always be a last resort. In my opinion it's only time for surgery when you have exhausted all medical options and your intestines are closing up and/or you are unable to function. If these meds aren't working please talk to your doctor about tying another.

 

[vivaelbirdo]

I strongly disagree with the assessment that surgery should always be a "last resort". It's unpleasant, it's costly...but there are many cases where it can go a long way to accomplishing what medications cannot. There are cases where you can get by with medication, but feel actually good with surgery...which is better? In a case where your disease is extremely localized to one area of you intestine, surgery may be a vastly *superior* option. Again, it's scary and certainly shouldn't be the first option, but if other treatments aren't working then it should absolutely be on the table.

Talk to your GI (preferably one who does a lot of work with Crohn's patients) about your case. Does he/she recommend surgery? What do they think the long term effects of it will be? Do they think it will be a better long term solution than just medication (ie: is your problem scarring or controllable inflammation?). Then seek a second opinion. Doctors should always be questioned...but when doing so, remember that your are still experts in medicine. Be sure you are seeking the best treatment for you, not just the answer you want to hear.

 

[Astra]

In my case the Humira stopped working and couldn't penetrate the thick scarring and narrowing in my TI.
This is the question you need to ask, is my active Crohn's due to scarring or inflammation?
Before I went ahead with surgery I saw the results on the CT scan, I was totally blocked and in agony.

 

[wakenda]

I strongly disagree with the assessment that surgery should always be a "last resort". It's unpleasant, it's costly...but there are many cases where it can go a long way to accomplishing what medications cannot. There are cases where you can get by with medication, but feel actually good with surgery...which is better? In a case where your disease is extremely localized to one area of you intestine, surgery may be a vastly *superior* option. Again, it's scary and certainly shouldn't be the first option, but if other treatments aren't working then it should absolutely be on the table.

Talk to your GI (preferably one who does a lot of work with Crohn's patients) about your case. Does he/she recommend surgery? What do they think the long term effects of it will be? Do they think it will be a better long term solution than just medication (ie: is your problem scarring or controllable inflammation?). Then seek a second opinion. Doctors should always be questioned...but when doing so, remember that your are still experts in medicine. Be sure you are seeking the best treatment for you, not just the answer you want to hear.

I'm sorry but your info is incorrect and I can honestly say outdated.
I have crohns(I don't capitalize this disease)for 38 long years and I'm a nurse for 32yrs. I have been told since 1975 to have surgery and every other Dr. will advise the same...why? Because my crohns is located entirely in my ileum ( ileitis) and it WAS assumed this would eradicate the crohns and all my symptoms. NOT!!

Throughout the years research has proven that in many cases, enough to matter, when the diseased area of intestine is cut out...the disease returns to a new unaffected area. Then that area is cut out until the spread of crohns has taken too much intestine to survive. There are cases where the symptoms will improve with surgery but they ate not followed thoroughly enough to know for how long AND if further surgery was needed.

Bottom line: Not enough validated current research to prove effectively that crohns bowel reconstruction is the most beneficial treatment plan. Every case is unique and most be weighed separately. There are many new advances in probiotics and new meds with combination treatment plans that do work well but must be done with all factors involved: diet, lifestyle, stress levels, other complications with crohns like lactose intolerance, anemia etc.....

A registered dietitian must be advising diet as Dr. is prescribing meds. Never should a med be continued if there is any adverse reactions ( non emergency) for longer than 2 weeks ( is; persistent pain or worsening pain, severe vomiting or/and nausea, unusual headaches severe, and many others).

All I'm advising is to keep that thought that surgery should be a last result after all..ALL else has been tried and do the Research.... Its your life and your decision. Surgery is not without all the dangers of infection and GI surgery has one of the highest possibilities of septic shock and infections. Do your own homework and ask lots of questions. Never do anything you feel rushed or cohersed into. Nobody should go through this process alone. Assign someone you trust to help you through these processes. It will be alright if you take a deep breath, breath and go step by step. My prayers are with you.

Ps...If I had the surgery back in the 70's- 80's or 90's I would doubt very much I would still be alive and my 5 children would certainly not be here either.

 

[Hermione]

Thank you so much for your kind words everyone. And you are right, I'm the one who has to live with this for the rest of my life. I want to try everything I can before even considering surgery. Just the thought of it scares the poop out of me!