Surgery is not always a cure

Which part of your body is it targeting now?

Hey Andrina,

Do you continue to have UC type issues? I agree, surgery isn't a cure for every ailment, but for UC it usually works a lot more often than not (definitely not a cure since it doesn't work 100% though...). Cuffitis and pouchitis are common, but easier to treat if they were to happen.

If you're referring to other autoimmune diseases such as RA etc. then it's not necessarily a fault of the surgery. The surgery did what it was supposed to (as long as that's what you're referring to), it "fixed" the UC. No guarantee that these issues wouldn't have popped up even if you didn't have surgery. Autoimmune diseases are known to strike in multiples, rarely do people ever only have 1. In a lot of people it's a matter of when the next one hits, not if.....

You remind me of what my GI told me once,
after removing the colon of one his UC patients, her immune system started targeting her small intestine!
Wish you all good health!

He said she never had any issues or inflammation outside her colon!
I asked him about surgery, he told me he did it only for two of his patients, one doing good after surgery, and one came back with new problem!

I think it’s good you said it, I met with a few surgeons back when I was really struggling and the one surgeon I really liked was quite honest with me about that. She said for some people it’s great, but in about 1/3 of her patients will have other issues from UC still. Even my GI told me it’s not a cure, but sometimes it is needed. Still an autoimmune disease, colon or not, but no colon means there is a chance you’ll feel great, but doesn’t mean you will. It can save lives and increase quality of life, but people should know they still may have other things to handle or keep an eye on. I hope you get to feeling better soon!

I believe in some people UC is an infection, which is why they fail all drugs and even surgery doesn't get rid of all their symptoms. I had a long talk with my GI doc one year about this idea that if you develop small intestine problems after colectomy then you must've had Crohn's all along. In his experience that is not usually true.

If an infection is involved then it will just jump from one organ to another, usually fast because it wants to survive no longer having the colon to live in. If you're one of those people who had zero small intestine involvement until after a colectomy, then you might be one of those hidden infection cases. It's the only logical explanation.

They call it auto-immune because it's an infection that they can't detect, but I don't think the immune system is so stupid. If medications suppress your immune system then maybe you have something going on but if you fail all immune suppression then that suggests an infection is going to town.

People cite genetics a lot but genetics don't prove anything. A lot of people with IBD genetics don't get IBD, and a lot of people with no IBD genetics get the disease.

There's an entire GI community around the world still researching the infection angle and there have been some interesting results. Borody, the man who helped discover that h. pylori causes stomach ulcers, and that MAP likely causes Crohn's, believes that fusobacteria are likely responsible for many UC cases... but his research is preliminary.

The fact that big pharma won't even look at this all that much is really messed up. Even if it's a dead end path, they owe it to patients everywhere to pursue the truth.

Well for the colon part it's good it's gone. No more annual scopes. No more colon cancer. My j-pouch itself is doing well.

Now my joints are inflamed and swell. Also I have 99-100 degree temperature. Since I started azathioprine it's gotten better. But I'm back to regular blood work to check my liver. It just never ends.

It isn't the worst thing to have to take aza for arthritis. At least you know you're in the clear of future flare-ups of UC, drugs, and hospitalization from that condition. That was always a huge weight on your back. There is no perfect solution to UC, but you did run through the majority of options and it wasn't working well enough for you to live life with predictability. I know it's not ideal to end up needing to treat another condition, especially immediately following colon surgery, but I do think you will get it under control and at that point, you will appreciate being done with UC.

quincy said...
UC isnt an infection. It might be triggered by an infection (viral, bacterial or fungal), however.
I would assume that if it were viral...like herpes...it could coincide.
q

There's lots of interesting research happening on this question right now. I don't claim certainty in anything, but you also can't say absolutely that it's not an infection. They're still investigating.

No, it isn’t necessarily a cure but it can help people live a better life when they are sick and suffering from severe UC that can not be controlled. I don’t know where I’d be right now without having my j pouch surgery. The way I was going I’d probably be dead. Just giving MY honest opinion on surgery for UC. It’s not perfect but I’m extremely grateful to have my life back even if I still have some issues. Issues I’d have anyway surgery or not.

I’m sorry if any doctor gave you the impression that surgery was a cure for UC. It is irresponsible for a doctor to call surgery a cure for UC because it is not a cure.

Somewhere in the 7-10% of jpouch patients have ongoing issues with an IBD/pouch issues. I was made well aware of this going into surgery and when I devolved chronic pouchitis I was not surprised because I did not think I was cured from UC.

Pouchitis isn’t nearly as bad for me as when I was living with UC.

"What is our immune system attacking?"

It's a complex question and answer. Short version, we are not 100% entirely certain.

Maybe our immune system is going crazy and attacking normal bacterium that everyone has.

Maybe we have some sort of gut mucosa barrier dysfunction or weakness. In a healthy person, the defensive mucosa barrier lining the intestines in impenetrable wall (like the great wall of China) keeping the bad bacteria out of our bodies (like a horde of invading Mongols kept out). In UC/IBD, we suffer from a Dysbiosis meaning that wall is more like a sieve/colander which allows some baddies into our internal tissues and the immune system is waging a war against it. They get inside the body through the sieve and into our blood and internal tissues, so the intestine might be the gateway, but the skin, joints and eyes can quickly become inflammatory battle grounds as well.

There's also a lot of really smart bacterium like MAP, that are antibiotic-resistant and immune-resistant. Maybe our immune system cannot kill it.

We know we have a higher mix of bad bacteria than good, and a lack of bacterium diversity compared to a healthy individual. Do these bacterium cause the problem we know as an UC? Or these bacterium just a symptom of a genetic-deficiency we have from birth, with the bacterium being merely opportunistic? It's a whole did the chicken come first or egg first kinda question.