Decision Time – Surgery?

Who’s David…

I`m single age 62 and retired from my working career of 40 years. Nine years ago I was diagnosed with UC. My father also had UC for many years before passing away at age 66.

David’s Story:

I was diagnosed 9 years ago with UC, now classified as severe chronic left sided UC. I`ve been through many of the medications available to treat UC including NSAIDs, ASAs, corticosteroids, immunosuppressants, and biologics. I`ve had short periods of symptom free remission albeit nothing long term. The longest period of remission was approximately 2 years while on Humira. Medications work for awhile then become ineffective when the flares return. I`ve tried the SCD diet, probiotics, and other methods to manage my UC without long term success.

At this time I am running out of options. My recent flex-sig exam shows a worsening condition and erosion of a larger area in the sigmoid colon. My GI is suggesting either participation in a clinical trial at the Mayo Clinic or surgery. The clinical trial would be 1 year with a phase 2 experimental drug. The drug would not be available upon completion of the trial until the drug reaches phase 4 and approval by the FDA. Obviously there are no guarantees with the clinical trial and there are risks and commitments that would have to be accepted.

I have consulted with a colorectal surgeon recently to discuss my surgical options. The recommended surgical procedure in my situation would be a total colon removal (protocolectomy) with an ileostomy. It is my understanding that it would involve 3 surgeries.

So the time is rapidly approaching to make a decision, the clinical trial or surgery. I feel that surgery is inevitable and possibly the logical choice. I do have concerns and anxiety with undergoing irreversible life changing surgery as anybody would. It would be helpful to know what life after surgery would be like and living with an ileostomy. Also the recovery time and difficulties after surgery.

I would appreciate any thoughts or insights that other people with UC might have concerning these topics and issues. Especially people who have undergone surgery.

Thank you so much.

David

Medications David Knows About:

Medications used over the past 9 years.
Mesalamine, Rowasa, Asacol, Azathrioprine, Methotrexate, Prednisone, Hydrocortisone Enemas, Remicade, Humira, Entyvio. Currently prescribed supplements; Folic Acid, Potassium.

submitted in the colitis venting area