How to treat UC other than as an auto-immune condition?

Hello,

I am in my second round of UC, diagnosed in December 2015. (First round was about two years prior.) My GI has been treating it as an auto-immune condition -- initially with Uceris & Lialda, then Prednisone & Lialda, then Prednisone, Lialda & Mercaptopurine, and now with Prednisone, Apriso & Mercaptopurine. My understanding is that most people have a good reaction to Uceris & Lialda, achieving remission in "days or weeks" according to the nurse. So here I am in the seventh month of my UC, improving veerrryyy ssllooooowwwlllyyy and no where near remission. (I have left side moderate, formerly severe UC.)

Since I'm not responding well to the auto-immune course of meds, it suggests to me that my UC may not be an auto-immune issue. So how else to treat it? I had a stool sample done early on that confirmed it wasn't bacterial or parasitic.

Thanks,
JP

I agree the "days to weeks" stuff is crap. Some people (I think mostly mild cases) have responded quickly. I took most of a year for Lialda to get me where I could function well outside the home. In the mean time, I used a lot of public restrooms.

It is good you are trying to think through your slower response and starting to frame questions that invite a larger understand of colitis, UC, symptoms, food issues ....

Let me suggest some distinctions and vocabulary.

But as to autoimmune, I think you are asking if you symptoms could be something other than UC. Ther is no such thing as non-auo-immune UC. By definition UC is auto-immune.

It is possible you have acute colitis (not UC) and there has been some misdiagnosis. Generally if biopsies form a scope show specific histological change, specifically deformation of some of the cells in the mucosla lining, it is IBD/auto-immune.

It is also possible you have UC, with a secondary effect that you gut microbes are dysfunctional. They help digest many foods, so you could have temporary food sensitivities that produce symptoms that are related -but not direct results- of UC inflammation.

It is also possible that left-sided (and lower) UC is going to need some treatment from both ends.

I hope you find a combination of meds, lifestyle changes, nutritional approaches to symptom management, other anti-inflammatory foods/supplements .. etc that get you in solid remission. But, be very careful about thinking you do not have auto-immune if you have been diagnosed as such. Likely you will need some things to manage symptoms, but you likely also continue to need meds to manage auto-immune.

I agree that IBD is autoimmune, not everyone responds to the meds (I didn't until finally Humira) but that doesn't change the fact that it's still autoimmune just because you don't respond to the meds....that must be how rumors get started lol. There's lots of reasons why people might not respond to the meds used to treat IBD (often allergic reaction) or it's just not strong enough of a med to do what it needs to do and you can only have so much of a med prescribed to you otherwise it could become toxic to your body....some docs do under-medicate their patients, it happens, not all GI's are good ones.

I went 23 years not responding to meds, either allergic or just non-responsive to them (as I said, until Humira last year) IBD is autoimmune until there are enough facts by enough reliable sources that say it's not and I have a hard time believing that will happen.

I agree with the previous posters, but maybe what you need to think about is "What is the root cause?".

In my case, I fully believe that my UC was instigated by gut dysbiosis - caused by antibiotics, high-dose PPI and NSAID exposure, artificial sweeteners, chemical herbicide exposure in food and water yada yada. This somehow triggered the autoimmune part of it. I keep hoping that, by "resetting" my gut microbiome and avoiding the above, the autoimmune part of it will be mediated.

I haven't had antibiotics since high school, and I contracted uc at 34. I've had little, infrequent exposure to artificial sweeteners. I'd take nsaids for pain relief before uc, but only extremely rarely (I have a couple headaches a year at most). None of the theories discussed here seem to apply to my case.

Yes, I understand that, geeker I was talking in general though, meaning I don't get why certain exposure to certain things will have such a negative impact on one person but not another in the sense that I'm really starting to wonder about what researchers say when they talk about "environmental triggers" for IBDers, and if it's not genetic for every IBDer then that makes me even more confused (actually the fact that it's not genetic for all has always stumped me)...it's scary actually that in this day and age they really seem to still no nothing concrete when it comes to IBD and it's also frustrating.

Marauder93 said...
... If you have colitis, you have an auto-immune disease. There is no way around it. ...

just to be super-anal about this but if you have ULCERATIVE colitis, you have AI disease. "Colitis" is not AI, even thought it can sometimes be treated with the same anti-inflammatory meds.

DBwithUC said...

Marauder93 said...
... If you have colitis, you have an auto-immune disease. There is no way around it. ...

just to be super-anal about this but if you have ULCERATIVE colitis, you have AI disease. "Colitis" is not AI, even thought it can sometimes be treated with the same anti-inflammatory meds.

Ya, figured on a UC forum everyone would know that and I could just shorten it. Id pull myself out of med school right now if I didnt know that at this point : p

Your question about "how to treat UC other than an auto-immune condition" is a good one.

I have had UC for 15 years and have given up trying to figure out "why" or "how" I got it and respond with appropriate treatment. I just try to minimize the symptoms so my life can be normal (as it was pre-UC).
For me this worked because my last c-scope showed minimal inflammation (what GI's want to see) and minimal symptoms (what I want to have).

So how do I treat it?
Rx meds did nothing to help me for the first 10 years except for mesalamine enemas which helped bleeding. I tried and tried diets and alternative methods and supplements (too numerous to list here) and they failed but I kept trying anyway. Finally in my 10th year and again trying diet mod., but this time keeping track of what my gut symptoms were, things began to get better slowly. And a few supplements helped. Kept taking RX but the same RX as before which did nothing before.

Some percentage of us with UC do not respond to RX meds. Some of those non-responders have surgery and others have to cobble together a treatment that helps them but the cobblers seem to get their remission in many different ways: diet mod.'s of many kinds, supplements of many kinds, FMT, pot (MM or DIY), etc.

There is no short, easy answer.

JohnATX said...
Finally, what's this about artificial sweeteners? I drink a ton of diet soda. Is there any medical research to support a link?

Thanks for the replies everyone.

JP

First of all, regardless of UC, diet soda is one of the WORST things you can drink. The regular stuff while still unhealthy is infinitely better for you. It goes without saying that all soda/pop, but ESPECIALLY the diet variety are terrible for your gut...

My firm belief that is the "auto-immune" label is mostly garbage. Modern medicine labels things as auto-immune because they don't know what causes UC, just like they label things as "genetic" when they can't find the cause. Did you know that before they discovered the bacterium h. pylorii, they would tell people that their gastritis and stomach ulcers were due to genetic causes? They do this all the time when causes are unknown. When I was in the hospital in April due to my acute flare, a GI specialist of 20 years actually said to me that diet has nothing to do with healing UC. Nothing. I mean, doctors receive about 2 credit hours of nutrition in med school, the rest is pharmacology. Modern medicine saved my life when I was dying from the acute flare up, but their understanding of chronic conditions is primitive.

Most "auto-immune" diseases have effective alternative treatments that require long-term protocols and lifestyle modification. A good example is Dr. Terry Wahl's protocol for MS, which she came up with herself after modern medicine completely failed to address her deteriorating condition. Our immune systems are highly intelligent and adaptable. They have living memory, and the immune system doesn't just attack for no reason. That we don't know the reason doesn't make it "auto-immune".

It's rare that UC is caused by parasites, and if it is then you'll quickly know if you take something like metronidazole (flagyl) or another anti-parasitic. Meaning, you'll improve instantly. The symptoms of parasite infection are also usually very obvious. I realize alternative medicine likes to make it seem like we have all these hidden parasites, but that's mostly a wild goose chase and it keeps patients in denial about the real causes of their condition, and that their GI sensitivity is something that'll have to be thoughtfully managed for life. Most UC is caused by leaky gut and/or dysbiosis, which is your native gut flora going haywire, nothing foreign or pathogenic.

I highly recommend you turn your research to leaky gut and dysbiosis. Investigate the different diets like SCD, GAPS, and FODMAPS. Yes, it will take work on your part. If you aren't strong enough to do it, then maybe a caregiver can help you out with the food prep. You can't fix the GI without looking at diet, it's impossible.

Good luck :)

geeker said...
I tend to agree with you, Chiron. Of course, all of the genetic factors are not well understood...but my 23 and me analysis showed a "decreased genetic risk" for IBD. Yet, I have it. Decreased risk does not mean no risk, but still...

I am 100% positive that I did not develop UC due to a mesalamine or prednisone deficiency. I am also 100% positive that my microbiome has been repeatedly hit with the equivalent of Agent Orange. That's why I am looking at it the way I do.

Every person is different. I know I sometimes makes generalizations in the way I write, but it goes without saying that each person has to figure out their own individual needs.

You mention antibiotics. Like you, I was given antibiotics since I was a kid, for every little infection that happened. I also ate a lot of middle class luxury foods, like microwaveable dinners, instant foods, sugary cereals, etc... so I ate like crap as a kid. Those two things combined would just ruin the gut before it has a chance to even develop resiliency. I think it's a big mistake to give children antibiotics, or anyone really, but especially children. There are so many effective alternatives to antibiotics but because we have had natural means beaten out of us as a society, we always defer to MDs and their pharmaceuticals. I would only use antibiotics again if I had something like blood poisoning, an abscess, or something really major that nothing gentler could fix.

Chiron said...
My firm belief that is the "auto-immune" label is mostly garbage. Modern medicine labels things as auto-immune because they don't know what causes UC, just like they label things as "genetic" when they can't find the cause. ...

I stopped reading here because of the BS