I could of tried Humira or Remi but being they lower your immune system it was a no go.Im 60 which means immune system is getting weaker about now plus lost my spleen many years ago playing football and spleen helps immune system.So surgery was best choice i ever made,UC wasn't getting any better and i have my life back.No more slave to the dreaded UC
That's awesome, so they didn't even make you try a biological before surgery?
Is your whole colon removed now? How often do you go to the bathroom? Any pain / discomfort anymore?
Early colon cancer generally has no symptoms. More advanced colon cancer can have symptoms like bleeding, pain, diarrhea, etc - exactly the same symptoms somebody with active UC already has. So symptoms alone wouldn't help a person with UC know whether or not they have colon cancer.
So screening is required, usually annual colonoscopies. These are a pain in the butt, and can be expensive, but they do find most cancers early (assuming you get the scopes done yearly). But they are more likely to miss early cancers when there is a lot of inflammation - the weed gets lost in the forest.
And when colon cancer is advanced, it can be very difficult to treat.
Lymphomas and leukemias are serious, of course, but often treatable. I'd take a very small risk of a fairly treatable cancer over a higher risk of a less treatable cancer.
Well yes, you need to get screenings. I get a colonoscopy every 1-2 years which is why I figured it would be detected. But you're right the inflammation could skew findings.
My understanding of lymphomas and leukemias is once you get them you're more likely to get them again but I haven't looked into them much specifically.
Also, the Vedo study you mentioned was only six weeks. That very question came up here recently. Vedo takes a long time (months) to reach full effectiveness. Six weeks isn't long enough. At six *months,* the numbers are better.
As for the heart issue, talk with your cardiologist. Remicade has a *small* risk of heart issues. Vedo probably doesn't, but I'm not sure if there's solid data on that.
Yea, that may be the scariest part. I haven't heard of too many heart issues on biologics but I know some cases exist. I've already got so many problems at 27, it's concerning.
Hi i didn't experience that the biologics stopped working because they never really started working...or at least, they helped a bit but not enough for a satisfactory quality of life. So i had to move on to the next thing (xeljanz).
Steroids worked at high doses but symptoms would return when i tried to wean off them. Added to which i got osteoporosis from long term use so they are no longer an option for me. I would choose surgery over going back on steroids again - they are much more dangerous than biologics.
Not sure entyvio is less effective than infliximab as there arent many head to head studies (and I had a better response to entyvio than double strength infliximab), but it does take longer to work, minimum 6 weeks and up to 14 weeks. So depending on how much you're suffering you may opt for infliximab which works much faster (can be even the same day as the infusion).
Sorry to hear your experience.
Yea it seems the reviews from people on Entyvio are pretty good so I was surprised the stats were so poor but hopefully that's just a function of not enough time in the study
-Proctitis 10/2010. Later diagnosed with Crohn's. Then Pancolitis. Now they call it 'indeterminate colitis'
SCD Diet. Asacol HD. Pentasa. Lialda. Rowasa enema. Uceris. Entocort. Hydrocortisone.
-Hydrocortisone enema. VSL#3DS. Canasa. Slippery elm bark. Astaxanthin. l-glutamine. Psyllium husk. Bee Pollen. Peppermint Oil. Oregano Oil.