Move to Biologics

History- UC for 50 years. Remission and flares (to many to count). Current flare since September (started about 4 weeks after colonoscopy). Pred used many times for the last 35-40 years. Don't want to have the oral pred anymore since such a high dose needed to start (80mg). Uceris for last 6 weeks no improvement. GI Doc was not receptive to LDN when presented with all the info I could find on it. Dr appt next week and I know he will push for Biologics. I might be open to 6MP but the issue is my age and length of time I have had UC. I'm thinking it might be time to go ahead with surgery before I get older rather than taking risks with Biologics. Any feedback on Biologics or anyone that has had this disease for a long time.

A couple of years is not going to alter surgery risk much at age 50. I think biologics could be worth the try. They do not seem to affect surgery options like pred can.

Are you only on rectal mesalamine? You could try adding oral. Maybe your inflammation is higher up than the enema is reaching.

I've had CD (crohn's colitis specifically...CD affecting my colon) constantly for 24 yrs, either allergic or non-responsive to traditional oral meds (cortifoam has helped with proctitis issues though) and I ended up developing complications with my CD so my GI put me on Humira and it put my CD in remission (still trying to get a handle on my IBS alternating C-D).

So maybe before surgery, try biologics...that's my input from a long time IBDer.

My GI says that Age is only a number, it really depends on your current health condition.

At this point maybe you want to get a second opinion with another GI to get another prospective and even an appointment with a surgeon to discuss your options.

What kind of surgery did you want? A colectomy with an Ostomy (that is easier to recover from) or did you want a j-pouch which is more involved, additional surgeries and takes much longer to recover from.

I liked both 6-mp and Remicade, they worked really well for me but Remicade after almost 5 years stopped working for me and gave me side-effects.

6-MP worked great for me, probably my best Remission. It did wear me out a little bit, my body didn't metabolize it as well as some other people. I could only tolerate it in 50mgs and then only 25 mgs.

I guess it depends on the person how "invasive" it is. I never had any long term side-effects from either Remicade or 6-mp. I probably did get sick a little easier with 6-mp but it wasn't that bad. Remicade after 4 years I ended up with joint pain and some neurological issues (scared me) but those went away after I discontinued using Remicade.

According to my GI both 6-MP and Remicade are well studied drugs and are safe for most people.

I could always tell when I was due for more Remicade because my symptoms would gradually come back right before my infusion, I never had an issue with that and 6-mp.

One of the reasons I chose surgery was that both of my Grandfathers had colon cancer and I was at very high risk for Colon Cancer with having UC and those genetics. I didn't want yearly Colonoscopies and flares any more. I feel so much better now that my colon was removed.

enjoygolf said...

If surgery I would probably have a colectomy.

I never played golf when I had my ostomy but it might have bothered me with the ostomy on my side while I played. There are ostomy products to help with that but I never used them.

If you decide on an ostomy then you may want to ask some people who have an ostomy and play golf. I know that there are people who play with ostomies.

I haven't played golf in 2 years (too sick) but I'm looking forward to playing again in the Spring.

enjoygolf said...

The pred over the years took a toll. I have had to have 2 cervical fusion surgeries C-6-7-8. Bone density is low also at last scan.

My GI says the most invasive of all the UC drugs is Predisione, he never wants to put me on it. It took me 3 office visits last time I flared of me begging for Pred before he'd write the script. He kept changing my Hurmira dosages and then switched me over to Simponi before he'd write the script Pred.

Don't be afraid of Biologics, the surgery itself is more worrying than the medications and their potential side effects. I wish you all the best regardless of what you decide. As a side note, try everything you can before surgery, even if your GI doesn't agree with what you're considering, work your way around it.

Let us know! Good luck

Bob,

How long did the GI want you on Pred for? Most-likely you will get side-effects from it if you stay on for longer than a week or two.

Where is your inflammation located? If it is just in your rectum then maybe a steroid enema instead of Rowasa and stay on Uceris instead of Predisione.