4 ms·

IBD is a catch-all for several different diseases, which are all poorly understood. There is still a debate over whether or not their cause is physical or psych

by blix 6y ago

IBD is a catch-all for several different diseases, which are all poorly understood. There is still a debate over whether or not their cause is physical or psychological. There's a big gap between observing inflammation or related markers and actually understanding the disease. Even within the same subdiagnosis, people respond vastly differently to treatments, which more or less can all be described as intentionally crippling the immune system to stop inflammation. It's not uncommon for people with IBD to have tried a roulette of medications with questionable efficacy and dangerous side effects. If you talk to three different doctors you will get three different treatments and/or lifestyle change recommendations. I know several people who have quit all medications after this experience and turned to and alternative/holistic approach. IBD shares this lack of understanding and heavy handed approach with many other autoimmune diseases. Being in this category is not a good thing. It's not unfair to lump IBD/IBS together; people who have these conditions share a lot of the same issues and struggles.

dialamac 6y ago
While I empathize with ibs sufferers, this is nonsense. Nobody with ibs poops large quantities of blood, needs their colon removed in many cases, or surgery because their bladder and bowel are now suddenly connected. We don’t fully understand most disease processes, even those for which we have some effective treatments. I don’t think lumping disparates diseases together simply on the axis of “understanding of disease process” is terribly useful.
- blix 6y ago
  I think there are many more similarities between IBS/IBD than the current understanding of disease process. People IBS/IBD (especially mild IBD) have more in common with each other than folks with other chronic illnesses. For instance, your sibling comments story about seeking treatment for IBS is very similar to many IBD stories as well. IBD is itself a lumping of disparate diseases based on very minimal understanding of disease process, so I'm not sure what your point is.
  - dialamac 6y ago
    My point is there is you’re providing very little of substance to show that IBS and IBD are related diseases. Just because we know little about either doesn’t mean much. IBS is unfortunately by its nature typically a diagnosis of exclusion while IBD of all forms is diagnosed strongly by both clinical history and laboratory/histopathological data.
deorder 6y ago
3 years ago I got diagnosed with IBS after I landed in the hospital with a stabbing pain just right next to my belly button (sometimes I still feel it lightly) what they first thought was caused by kidney stones. Nothing turned up on the xrays or echoes. Since then things have only gotten worse as if it has spread upwards first causing constipation, then silent reflux (causing a constant burning sensation in my throat, mouth and nose), pain in my neck, foggy brain (which started recently) and so on. The GP, which in my country decides if I have to be forwarded to a specialist to relieve the medical system, keeps attributing everything to my IBS. Once I got the diagnosis IBS it is as if they stopped taking me seriously and act as if I am just being a hypochondriac so I decided to just let it be.
- blix 6y ago
  You might have success in managing symptoms by modulating diet and lifestyle. I personally find that a limited diet, no caffeine, and ample sleep help me a lot (I have Chrons), but every body is different. Dealing with the medical system and outside advice in general can be very frustrating. Hope you can find a way forward! Good luck!
- trhway 6y ago
  [IANAD] what you describe might as well be SIBO (as far as i understand in my limited non-professional understanding the bacterial overgrowth can cause the IBS symptoms too though fortunately i was spared that). It took some years in my case to stumble upon definitive test - the lactose based breath test - with all these years doctors dismissing it as "just take the antacid" (which is actually no-no for SIBO), and even with the definitive diagnosis confirmed by the test it is still a struggle to get a right doctor to correctly treat it.
  - deorder 6y ago
    Yes, they gave me different antacids and so far nothing has helped. I wish it was just like a regular acid reflux, but best way to describe it is as if there is a cloud of aerosolized acid being released from my esophagus 24/7 that is spreading and causing an non-stop burning sensation everywhere it gets inside my throat, mouth, nose, eyes and I think it is damaging my larynx. None of the usual advice seems to help. Days that I am feeling better I can eat an entire chocolatebar, mint tea, lay / sleep flat, everything I should not do and it does not get worse. Something I noticed though is that it disappears everytime I go on vacation and actually eat worse than usual (McDonald's etc.) Never had any test done for SIBO I think. They did a stool test, sigmoidoscopy and found nothing. That is how I ended up being diagnosed with IBS.

by blix 6y ago

dialamac 6y ago

While I empathize with ibs sufferers, this is nonsense. Nobody with ibs poops large quantities of blood, needs their colon removed in many cases, or surgery because their bladder and bowel are now suddenly connected. We don’t fully understand most disease processes, even those for which we have some effective treatments. I don’t think lumping disparates diseases together simply on the axis of “understanding of disease process” is terribly useful.

blix 6y ago
I think there are many more similarities between IBS/IBD than the current understanding of disease process. People IBS/IBD (especially mild IBD) have more in common with each other than folks with other chronic illnesses. For instance, your sibling comments story about seeking treatment for IBS is very similar to many IBD stories as well. IBD is itself a lumping of disparate diseases based on very minimal understanding of disease process, so I'm not sure what your point is.
- dialamac 6y ago
  My point is there is you’re providing very little of substance to show that IBS and IBD are related diseases. Just because we know little about either doesn’t mean much. IBS is unfortunately by its nature typically a diagnosis of exclusion while IBD of all forms is diagnosed strongly by both clinical history and laboratory/histopathological data.

deorder 6y ago

3 years ago I got diagnosed with IBS after I landed in the hospital with a stabbing pain just right next to my belly button (sometimes I still feel it lightly) what they first thought was caused by kidney stones. Nothing turned up on the xrays or echoes. Since then things have only gotten worse as if it has spread upwards first causing constipation, then silent reflux (causing a constant burning sensation in my throat, mouth and nose), pain in my neck, foggy brain (which started recently) and so on. The GP, which in my country decides if I have to be forwarded to a specialist to relieve the medical system, keeps attributing everything to my IBS. Once I got the diagnosis IBS it is as if they stopped taking me seriously and act as if I am just being a hypochondriac so I decided to just let it be.

blix 6y ago
You might have success in managing symptoms by modulating diet and lifestyle. I personally find that a limited diet, no caffeine, and ample sleep help me a lot (I have Chrons), but every body is different. Dealing with the medical system and outside advice in general can be very frustrating. Hope you can find a way forward! Good luck!
trhway 6y ago
[IANAD] what you describe might as well be SIBO (as far as i understand in my limited non-professional understanding the bacterial overgrowth can cause the IBS symptoms too though fortunately i was spared that). It took some years in my case to stumble upon definitive test - the lactose based breath test - with all these years doctors dismissing it as "just take the antacid" (which is actually no-no for SIBO), and even with the definitive diagnosis confirmed by the test it is still a struggle to get a right doctor to correctly treat it.
- deorder 6y ago
  Yes, they gave me different antacids and so far nothing has helped. I wish it was just like a regular acid reflux, but best way to describe it is as if there is a cloud of aerosolized acid being released from my esophagus 24/7 that is spreading and causing an non-stop burning sensation everywhere it gets inside my throat, mouth, nose, eyes and I think it is damaging my larynx. None of the usual advice seems to help. Days that I am feeling better I can eat an entire chocolatebar, mint tea, lay / sleep flat, everything I should not do and it does not get worse. Something I noticed though is that it disappears everytime I go on vacation and actually eat worse than usual (McDonald's etc.) Never had any test done for SIBO I think. They did a stool test, sigmoidoscopy and found nothing. That is how I ended up being diagnosed with IBS.