Surgery/Other Options for Crohn's??

I have had Crohn's Disease (actually Crohn's Colitis) for the past 25 years and read this site frequently but have rarely posted anything. I am so appreciative of the information that everyone posts. I have had mostly what I consider to be minor flares (mostly with the big D and some proctitis) that have responded well to Entocort or short courses or prednisone along with a maintenance dose of Colazal. I had one major flare that required massive doses of pred for 6 months, then another for which I went on Remicade and then another for which I went on Humira. With the major flares I did go into remission for periods of 5-6 years with only minor flares in-between, but had an allergic reaction to the Remicade the second go-round and gained 80 pounds on the Humira and took almost 8 months to go into remission.

A year ago, my mother got really sick and died. I immediately developed a flare along with intense nausea, which I had not experienced before with any of my flares. The nausea continued for several months and the minor flare progressed to a major flare with cramping, bleeding and pain that I had never experienced with any of my previous flares. I lost 35 pounds. I have had multiple tests, colonoscopy and endoscopy, extensive lab work, 2 CT scans and all of the specialists have ruled out anything other than a Crohn's flare. I did a round of pred over the summer which helped but the symptoms have started again and I am back on pred. When I saw my doctor today, he said it was time to try another biologic or look at surgery. Here is the issue:
my mother died of lymphoma and my brother has multiple myeloma, both of which are blood cancers and seem to have a higher probability of occurring with the biologics. In addition, I have a blood clotting disorder, which makes any surgery more risky than normal. I know that the surgery is not a cure and the Crohn's usually comes back just in a different place. The doctor is suggesting either Cymzia or Entyvio. I am scared and overwhelmed and not sure what to do.

Is your Crohn's still limited to the colon?

Lisa,

I would also say that you are presenting as a very unique case. I'm no expert here, and just wanted to offer my support.

I know that some can achieve long term remission from surgery. I have a friend who did exactly that. She was suffering with flares and symptoms for quite some time, and had one surgery. The second surgery removed quite alot of her small intestine. That was 12 yrs. ago, and she's still in remission.

If it was just a matter of some removal of your small intestine as well, that would be one thing, but are you considering having your colon removed? That is a huge decision of course.

Hopefully the newer biologics end up being worth the risk. Especially since you had success with Remicade and Humira. Good luck. Hope things start to improve soon, and you make the right decision for you.

Thanks to everyone for their support. I see the hematologist next week and he may be able to help reduce the options, i.e. he may decide that given the family history, the biologics are absolutely not an option, in which case the surgery would be it. At this point, we would be looking at only removing the part of the colon that seems to be consistently inflamed- always seems to be in the same place. No one has said anything about strictures. I have tremendous respect for the hematologist and his expertise and also know he can refer me to a good surgeon who could work with him with my blood clotting disorders.