NY Times: Five Things I Wish I’d Known Before My Chronic Illness [principally about IBD]

[Andy]

Seven Thanksgivings ago, I got sick and I never got better.

What I thought was food poisoning turned out to be Crohn’s disease, a form of inflammatory bowel disease (IBD) that doesn’t have a cure. It fools my immune system into attacking my digestive system, resulting in what I can only describe as the attempted birth of my intestines through my butthole. It’s a cruel and often debilitating disease.

https://www.nytimes.com/2019/02/18/...-knew-chronic-illness-crohns-disease-ibd.html

 

[Peter T]

I normally ignore articles with arbitrary numbers in the title (x things abou ... ). However this is not as bad as most.

 

[Sasha]

Good article, I thought.

 

[DokaGirl]

Great article. Completely familiar issues. Non-fluffy advice which is a real relief to see. A good reminder that many others share similar issues, up to a point.

 

[NelliePledge]

Would be great to have a well controlled chronic condition- not that I would wish her illness on myself or anyone.

 

[shak8]

Would be great to have a well controlled chronic condition- not that I would wish her illness on myself or anyone.

Friend of mine (ex-friend really) has ulcerative colitis (belongs to the chronic inflammatory, crohn's family). Her risk of bowel cancer is 37x normal. She has immune attacks on leg vessels, random, who-knows-where next attacks.

So, not well controlled. Also has scar tissue in rectal area which interferes with sexual pleasure. Has a rectal pouch for feces that she has to flush out (like wiping one's butt).

No picnic. Not under control except for the moment, at times. Does vary per patient how extensive the disease is.

 

[Arnie Pye]

Has a rectal pouch for feces that she has to flush out (like wiping one's butt).

A rectocele? https://en.wikipedia.org/wiki/Rectocele

 

[shak8]

A rectocele? https://en.wikipedia.org/wiki/Rectocele

No, not a rectocele. A surgically made pouch because of getting rid of much of the rectum due to the severe inflammatory process there (and elsewhere in the colon).

 

[Arnie Pye]

No, not a rectocele. A surgically made pouch because of getting rid of much of the rectum due to the severe inflammatory process there (and elsewhere in the colon).

Poor woman!

 

[NelliePledge]

@shak8 yes I realise other conditions can be tough even ones where there are effective medications there are folks Who still have a very rough time of it when they have a more severe version of their condition less able to be managed. But for example I know someone who has gout and had terrible episodes of excruciating pain for a while but then got an effective medication regime and hasn’t had an episode for years. Similarly well controlled diabetes. Compared to ignoring your symptoms/think yourself better and taking amitryptiline/ other random painkillers which is all I’ve ever been offered.

 

[shak8]

@shak8 yes I realise other conditions can be tough even ones where there are effective medications there are folks Who still have a very rough time of it when they have a more severe version of their condition less able to be managed. But for example I know someone who has gout and had terrible episodes of excruciating pain for a while but then got an effective medication regime and hasn’t had an episode for years. Similarly well controlled diabetes. Compared to ignoring your symptoms/think yourself better and taking amitryptiline/ other random painkillers which is all I’ve ever been offered.

I hear you. Point taken!