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Should we ever have started Medication in the first place

Hi All

I have been doing a lot of thinking this last week, being off work I have a lot more time on my hands and I am beginning to question everything. Do any of you ever look back to when you first diagnosed with Crohn's or UC, for me it was 2005. I may be looking back with rosetinted glasses but I was not that bad, okay had a few symptoms. But looking at how I have been since I started taking medication, have tried, prednisolone, asacolon, pentasa, mercaptupurine, and flagyl. My experience with prednisolone, flagyl and 6-MP is that the side effects from these feel worse to me then a crohn's ex. Beginning to regret now that i didn't try the natural route first before my body got dependant on these bloody drugs. There rant over..
Hmmmm, I think if someone has very high inflammation and needs to lower inflammation then they need anti-inflammaroy. But to use anti-inflammatory for maintenance by surpressing the immune system...has been questioned by that study since it doesn't seem very smart at all, in fact it seems idiotic.

(anti-inflammatory that affect ROS like antioxidants is a different story)

Crohn is an immune deficiency state (it is not overreactive immune system or whatever, the extra TNF is they think from an underreactive first immune response, from AIEC or other pathogen release through macrophages, and from oxidate ROS stress).

So you know someone with crohn has an immune diffiiency as the study shows, and then you go lower the immune system even further which was the issue to begin with...wait what?
It is all very confusing. I thought it was suppose to be we that we have an overactive immune system which attacks our gut.
It is all very confusing. I thought it was suppose to be we that we have an overactive immune system which attacks our gut.
No, that's not at all the case.

We are immune deficient, they know this for sure (well the people that actually read instead of perpetuating stupidity like many GI)



Many studies have shown it and so does the genetic predisposition of ATG16L1 and NOD2, they make people disfunct in bacterial recognition and autophagy, read the multimedia section, Igor posted a new study like 10 hours ago about NOD2.

What does happen is that once you are unable to control a pathogen and there is an increases response to penetration of gut flora, you get high inflammation yes, it's a secondary effect that happens when someone loses intestinal homeostasis, but we have an underreactive immune system, not overreactive.
You can lower the inflammation by lowering the immune system, but that doesn't mean it's a good idea when the issue to begin with was that you had a weak immune response.

Let me explain it this way.

2 cities build a dam to stop the sea washing away their town.

City 1 builds a strong enough dam that stops the sea, it reaches homeostasis.

City 2 never cared to build a strong dam and one day the dam get's a breach, the whole town panics, and you get hundreds of people helping to build a dam.

Someone who knows nothing about what happened would say

"hmmm..there is something wrong with that second town, too many people are helping to build that dam back up, while in city 1 no one is helping to build that dam, if we remove the people building the dam in city 2, maybe we can help them become like city 1."

BUT, he is ignoring that the issue was the dam to begin with.

That's what that first article I posted is saying.

Yes you can fix the secondary effect of inflammation by lowering the immune system, but it's an incredibly stupid way of managing a disease when a weakened immune system was the issue to begin with.
I really have no idea if this thing is because our immune systems are too strong or not strong enough but what I do know is that immune suppressants haven't worked for me at all, humira worked for about 3 months before it just stopped working....currently doing a stem cell therapy clinical trial which seems to be helping although not quite the miracle I was hoping for (yet, I 'm still hopeful!)....I also never, ever get coughs or colds - like never, not even after a good 9 monthys in total on prednisone and a good few on azathioprine as well....it's all a bit confusing really, so hard to understand why certain drugs work so well for some people and not at all for others? Maybe some people just go into spontaneous remission and it's nothing to do with the drugs at all?

I agree that it seems crazy to be pumping our bodies full of things that dont work and have awful side effects....seems we're damned if we do damned if we dont! I must say it is really nice to technically be on no drugs just stem cell infusions whcih I dont really consider a drug, no side effects!
Want to add more cause it sounds confusing and so many GI are confusing people even more by calling the disease autoimmune (which has by now about 10 million definitions)

here are some studies showing we have much higher amounts of invasive bacteria:

Invasive Escherichia coli are a feature of Crohn's disease

High prevalence of Adherent-invasive Escherichia coli associated with ileal mucosa in Crohn's disease


Culture independent analysis of ileal mucosa reveals a selective increase in invasive Escherichia coli of novel phylogeny relative to depletion of Clostridiales in Crohn's disease involving the ileum

If the immune system is "overeactive" how come many of crohn are infested with AIEC (invasive E coli), even in places and times where there is no increased permeability. How come? The opposite should be happening, we should be the first to kill those pathogens. We are immune deficient like all the studies point out, that's why.

And yes, in the short term lowering the immune system will stop the inflammation and might look like it helps, but what are you doing in the long terms, you're only making the causative issue worse if the issue is an immune deficiency. You should be helping the immune system instead. That's why that study from Londen questions the wisdom of some current meds, they could (in the long run) make the disease far worse, the issue is the underreactive immune system.
It's not so confusing at all to see some of the things going on, but many GI were trained 40+ years ago and many haven't opened a single book or looked at a single study since then. Every GI who calls crohn and overreactive immune system or autoimmune disease probably has no clue what they are on about.

(what they do see is that T cells have a memory in mice, T cells direct the immune response, and if you break the intestinal barrier of mice and introduce a non-pathogenic bacteria over and over, the T cell remembers it, and it can promote an uncontrolled immune response that keeps attacking, but that doesn't mean it's an "overreactive immune system", it just means a misguided T cells response, and they have no idea if that is what is actually going on, since they have never seen that in humans, the more likely cause is pathogenic since they find AIEC all the time)
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Our own body also isn't "attacking our gut" like some GI making up fantasy stories to explain it to their patients say.

Oxidative stress and inflammation because of macrophage reactions to pathogens and commensal passing through the intestinal barrier yes, but our body isn't "attacking our own gut", it's a wound created from the inflammation and ROS or oxidate stress if you wish.

There is a pretty big and important difference between our own body attacking us or a pathogen or commesal or immune response causing inflammation.

If a bee stings you and you see a wound, do you say "ah my own body is attacking me", someone who knows nothing about bees would yes, but that's just a way for them to explain their ignorance concerning this disease.

And that same person say it's a good idea to lower the immune system so the inflammation goes away, completely oblivious to the fact that the wound is still infected from the bee sting, making the inflammation come back again and again. Many GI (and I have nothing against GI, but I have seen so many clueless ones, many good ones too who do stay up to date on this disease instead of taking money from big pharma) think exactly like that.
Even in disease in Africa, where they are dying from bacteria, they will sometimes use things to lower the immune system before they start antibiotics.

Why you ask when it would just increase the growth of the bacteria.

Cause of the inflammation and the response that is extremely high, if they don't, you can get organ failure and nerve damage in those people, antibiotics don't work fast enough.

So while they increase the bacteria at first, they only lower the immune response over a very short period, to prevent nerve damage etc, but they do no continue to lower the immune system, they stop and go over to antibiotics, or those people would end up dying from the bacteria.
Thanks for your replies kiny :) i will have to reread those articles to make any sense of them, the terms a bit a bit over my head! But basically you are saying its more the underlying problem and these immune suppresents are only short term bandages that do more damage in the long run? Bit depressed now because the Remicade/Humira are the only drugs i haven't tried and was holding out some hope that these might be the answer for me but if its not an autoimmune disease these drugs are not going to do anything. Can I ask what treatments are you currently taking yourself and if you are using something to combat bacteria growth? Are you of the believe that we need to promote good flora in our gut and kill the bad stuff?
Ok, atm I am on amoxicillin and use lactic acid probiotics, other than that a high protein diet. I don't recommend anyone doing anything I do, reason I take those is just because it works for me atm and because augmentin is low resistance and doc doesn't want me getting high resistance cause my eyes were a bit red lately and they're not sure what it's from, although it's not so bad atm (that's why I have that avatar with the red eyes)

I take probiotics so yes, I think good flora would help, bacteria can produce butyric acid when they ferment carbs and butyric acid (butyrate) helps lower inflammation and has some effect on IL-10. There are ways to lower inflammation without compromising the immune system, I feel personally that they should focus on that instead, it's far safer and it keeps the imune system doing it's job.
yes it makes sense, i don't like the idea of my immune system being shut down, i'm a teacher so am in touch with potential infections all the time.
Thank you for writing these posts. I will definitely read through the links you have added. I'm going in for surgery next week and I'm also trying to find ways to make life better without so many meds especially the immune suppressants. What you are saying does seem to make sense. I might even ask my doctor when I next see him.

Many thanks