Thoughts on severity and when you were diagnosed?

[KWalker]

I've been talking to another member through PM lately and we both agreed that it seems like those of us who were diagnosed what seems like forever ago have less severe cases than those members who have been diagnosed more recently.

What do you guys think?

 

[SarahBear]

I'm interested in seeing the responses to this!

I was diagnosed in 2008, so not very long go. My Crohn's was mild to moderate at the time, and now has seemed to completely disappear (while leaving its symptoms behind).

 

[robbo87]

I'm not sure to be honest. I don't spend as much time on here as I used to though so maybe it's hard to tell.

Mine was moderate when diagnosed and then went towards the severe end of the scale before a perforation. where as a friend who I know is now at a point where he is coping without meds.

One thing I do think I have seen though is a sharp rise in the amount of cases. which could lead to longer waiting time's for gastros and therefore more severe symptoms being given time to develop before treatment.

Crohns and Colitis seem to be getting more and more common.

 

[KWalker]

Wow! Long time no see robbo!

It seems to me like those of us old diagnosis have gone (for the most part) without surgery but now its like a large sum of people come here AFTER having surgery and being newly diagnosed. When I was diagnosed at 2 doctors never said crohns can cause death and told us that as long as the crohns is under control surgery most likely wouldn't be needed either, and I've never had bowel, colon, etc surgery.

There's a few reasons I have, such as what robbo said with longer wait times, or with an increase in fast food/processed foods, polution, chemicals, etc. I'm sure there's no one reason but I just thought it was interesting.

 

[Dukeis]

I've been talking to another member through PM lately and we both agreed that it seems like those of us who were diagnosed what seems like forever ago have less severe cases than those members who have been diagnosed more recently.

What do you guys think?

I was diagnosed the same year you were, but I was a tad bit older then you. LOL! My case was moderate to severe. Disease was found from my mouth to my rectum. Yes, I said mouth. I've only meet a few other people who have had the mouth ulcerations from Crohn's. I never had inflammation all the way trough, it skipped. Strange thing I'm told about my case is the disease has never been detected in my small intestines. It's been found about every other place though. My biggest problem area is my colon and esophagus.

 

[2thFairy]

I've only meet a few other people who have had the mouth ulcerations from Crohn's.

I'm surprised at this, because mouth ulcers are VERY common in Crohn's. It's one of the top 5 things doctors will ask you about when they suspect IBD.

 

[KWalker]

Yeah I've also had mouth ulcerations. Over 20 at the same time!

 

[Dukeis]

I really only knew a couple people with Crohn's before finding this forum and neither of them have mouth ulcers. Guess this is a target rich environment when it comes to Crohn's symptom's. Thankfully I haven't had those for years. I had them so bad in my mouth and throat it was very painful to drink much less eat.

 

[hawkeye]

Interesting, I was diagnosed in 1990 and the first year was the roughest - a month hospitialization, but I finally went into remission and things weren't really active again on the Crohn's front until late 2009 except for a flare in 2006. In terms of symptom severity I'd say I am doing quite well / less severe. Not sure it it's possible to have no /few symptome, yet the guts are a mess when you scope them - I recall a GI mentioning this once.

 

[Hobbes650]

I'm surprised at this, because mouth ulcers are VERY common in Crohn's. It's one of the top 5 things doctors will ask you about when they suspect IBD.

Never had one.

 

[Hobbes650]

I've been talking to another member through PM lately and we both agreed that it seems like those of us who were diagnosed what seems like forever ago have less severe cases than those members who have been diagnosed more recently.

What do you guys think?

I would disagree. I've known people who were very sick before I got diagnosed in 1986 as well as now. I've never seen any pattern like that.

 

[KWalker]

oh, there's no doubt that there isn't. Maybe we just hear about it more now?

 

[Misty-Eyed]

Not for me. I've been diagnosed for 20 years now and I was in a bad way by the time I got diagnosed. Managed to escape surgery until last year but I was still bad enough that I lost my whole colon.

I think people just tend to come on here when they need support or have questions. That's mainly around diagnosis or when surgery is needed.

 

[superzeeman]

I was just diagnosed in February and I have mild, mild, symptoms. Mine is the kind that grows inside like a tumor and messes things up. Still, I feel lucky not to have the typical symptoms.

 

[Gianni]

Hmm very interesting. Now all I'm going to be thinking about for the rest of the day/week/month is the possible correlation and what could be the causing factors(s).

I would love to try to create a pattern for this.

I was diagnosed in 2010 and my case was severe.

 

[shamrock15]

I am not sure that I would agree with the premise. Mine wasn't extremely active at the time I was diagnosed, but certainly active. I was extremely sick before going to see the doctor. I remember when I was told it was crohn's, and thinking "at least it isn't ileitis or colitis". The learning soon set in! Why could it be more severe for some? I think lack of efficient and affordable medical systems has people putting off seeing the doctor sooner. If you don't have cash, nausea, vomiting and pain don't seem quite so bad. I am just speculating, but let's face it. Crohn's is an expensive disease to manage. If you have good health care, you catch it quickly and your illness may not get really bad. Without good healthcare, it likely will result in a serious case.

 

[Jennifer]

I was diagnosed 21 years ago at age 9 and it was a severe case.

 

[2thFairy]

Add in the fact that if you don't have obvious bleeding or drastic weight loss, many doctors fob you off as having IBS. That can create more time, even years, before getting an accurate diagnosis.