My dear patients!
How to start on I.M. IFORMATION MATTERS now? I really had a hard time to figure that out.
What is most important for you as a patient in the beginning? What`s the very first piece of information I should share?
Another option: go straight ahead and write on the newest medication: the JAK inhibitors.
Another possibility (and I really thought about that..): how about writing the first episode on lifestyle factors? For example nutrition ! (That (*) would be a good one. 100.00 follower right away! Nutrition is always something to talk or write about, especially on the internet – would have been no less than an excellent choice!)
Or maybe vaccination under immunsuppressive therapy? It`s kind of fitting the season and everybody is always unsure when to do it and how to do it. Some colleagues might even read it and gain knowledge.
Seriously – to start this, I asked myself : How does IBD start for my patients ? When do they hear about the terms “ inflammatory bowel disease“, “Crohn`s disease“ and “ulcerative colitis” for the first time ?
Of course it all starts with abdominal symptoms. Abdominell pain, diarrhea, sometimes blood in the stool, gas, to list only the most common symptoms. These symptoms can differ in intensity and it might take a while from there until diagnosis is established. Because when you recognize the symptoms you don`t know you have an IBD yet.
And then diagnostic procedures start, leading to endoscopy sooner or later. And I know for some of you it is not just one endoskopy . It is one and another one and maybe even another one until the diagnosis is established.
But actually it is the appointnent with the doctor one or two weeks after endoskopy, when you discuss the results.
Let`s start right there.
In that situation I always ask my patients : “have you ever heard of inflammatory bowel disease, IBD? Do you have an idea of what the character of the disease is and what this disease is about?”
And sometimes, they do know a little bit. That is mostly the case, when I am already pretty sure about the diagnosis while doing endoskopy, thinking: “…that looks definetly like an ulcerative colitis.” or “… this ist really typicall for ileocecal Crohn`s disease.”
“. And when I am sure – lets say about more than 80% – I visit the patient after endoskopy and tell them : well, I think what we will be talking about on our next appointment is inflammatory bowel disease. Sometimes I even mention the name Crohn`s disease or ulcerative colitis. I write it down on a piece of paper and tell the patient: “go ahead and read on the internet if you want to, information is pretty good. If you read something, that frightens you – stop reading and wait until our appointmet next week.”
So some of them already do have some information on IBD when the diagnosis is established.
But when I say nothing (mostly because I feel that the certain patient would be rather frightend and getting nervous while getting information on a certain disease without having the chance to ask upcoming questions right away and get answers) .. so when I say nothing to the patient the answer to the question : “have you ever heard of IBD ? Do you have an idea on what the character of the disease is and what it is about ?”…
…is ( and we are talking about 2020, 100% of my patients with access to internet and smartphone) either : “No !” or : “well heard of it I think, but …” or it is just a sad head shaking.
Inflammatory means: there is inflammation in the gut. It s not always taking place in the whole gut, mostly just in some short parts. It is possible though, that the whole gut is affected, mostly in ulcerative colitis when the whole colon is affected.
And my patients often ask me: “You talk about inflammation … isn`t there some infection then, we need to treat ? Some bacteria or some virus ?”
And the answer to that is: “Well …yes and no !”
IBD is not an infection. There is a clear difference to an infection. The reason for inflammation on IBD is not a certain bacteria or virus you catch somewhere that makes you sick. You catch it, you treat it, you get rid of it, it`s gone. That`s not IBD.
And it is also not about some bacteria or virus you catch, which is difficult to treat or can not be treated at all. You catch it, you can not treat it, you don`t get rid of it – it end´s up as a chronic desease. That`s not IBD either.
Yet the inflammation on the gut has very much to do with something in the gut – and especially the immune system and the immune cells of the gut – have to deal with something which is not familiar to them. For example: A wrong or unhealthy microbiome that it gets in touch with – which is bacteria after all. Or nutrition specimen (which also effect the microbiome).
And these are just two aspects of a huge picture with many other aspects. I just want to give you an idea.
And even more important : the inflammation always has something to do with the gut barrier which is not tight anymore. The wording “leaky gut” describes it quite well. It leads to a situation, where the immune cells of the gut mucosa get in contact with components, they actually should not get in contact with and they do react to it.
For today: “inflammatory” does not mean infection because of a certain bacteria or virus hitting the gut from the outside. It means infammation which developes inside the gut for a longer period of time, you do not have one certain reason, ist a combination of reasons.
Bowel – well that´s easy, isn`t it ?
(Do you hear me sigh?)
It is not. And some of you will know by heart, that in some cases the symptoms which are affecting the patient the most, have nothing to do with the bowel or the gut or the abdomen – as it seems – at all. You might have painfull joints that really bother you and the reason for that ist your IBD. Your stomach is fine by the way.
But we all continue to agree on : “bowel disease” since the organ, which is affected by IBD most often and where the diagnose is established is the intestine, the gut, the bowel.
But let´s also have in mind right from the beginning: IBD can and will affect other organs such as joints, liver or even more bile ducts, skin, even eyes. And that is an important aspect of inflammatoy bowel disease.
Disease. Really means disease. And its a chronic disease. And that is something I want to mention here right away: there is no healing for IBD. It`s a chronic disease, there is no healing, you will have to deal with it for years and even decades. I actually don´t like to emphasize it that strong, because it might take the confidence, which I consider as one of the most important things, but : INFORMATION MATTERS. It is a chronical disease.
Fortunately it does not worse in a way that makes you get more sick and even sicker every week, month and year. The illness takes place and proceeds in episodes. And even these episodes do not automatically worsen the overall prognosis.
And the very good news I want you to have always in mind is: We do have good possibilities for treatment and therapy. We do know so much about the desease, today more than ever. And not just about excelent medication but also about what you as a patient can do, to improve your situation.
So that is – I think – a good start on the issue of IBD !
Take care and good bye for today,
Dr. med. Susanne Weyrauch
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