Going for Guinness

[Sandy]

I just joined, only read a little so far, but it's so nice to find a forum for folks with similar problems.

Has anyone had Crohn's longer than me? In three years it will be half a century. I was diagnosed at 9 years in 1963 or so. I can't even remember back that far! Fortunately I have a mild-to-moderate case so haven't had any major surgeries. But years of drugs, including prednisone (years of that as a teen! Ecch), flagyl (I'd completely forgotten about that one till I started reading here), azulfidine (big brown difficult to swallow pills) have gotten me here, and I'm rather grateful to be alive.

Let me know if you've had it longer. We can award prizes! :^)

Sandy

On:
Asacol (that is one great name)
Azathioprine
Rowasa (ecch)
Budesonide (compounded)
Folic Acid
Calcium
Vitamin D

 

[IBD]

Whoa, that's a pretty long time!
How have you felt throughout these years?
Meaning, do you suffer from flareups, and are some years worse than others?
This is very interesting and I would love to know more

 

[Nica]

You have me beat! Welcome to the forums.

Maybe you have some tips for us on coping with the day to day of the disease?

 

[mario]

Heck! Didn't know that cohns even had a name before the 1990's! You are one year older than me but i didn't develop the disease until 2 years ago. Feel so very sorry for the young ones. You could be so helpful to them! Welcome to the forum

 

[Agent X20]

I'm close to 40 years since I've been diagnosed... can I have second prize?

 

[Lisa]

I'm close to 40 years since I've been diagnosed... can I have second prize?

I'm up there too X20.....think it is about 33 years for me...or thereabouts - would have to check with my Mom......

 

[Mountaingem]

:congratualtions:WOW, that is so awesome! You rock! I've got 24 years-I started having symptoms at 14.

I think you're gonna win, hands down! :medal1:

Agent, you win second place! :medal1:

 

[Sandy]

Gosh, seeing all your replies fills me with warmth. Well, it doesn't matter who wins, as long as we're all winning the fight against this damn disease!

Truth is, I didn't cope as a kid, really. As a kid, I just suppressed it all. Remember, this was the '60's and Crohn's (actually I was first [mis]diagnosed with ulcerative colitis), and things were rather barbaric. IBD was considered "psychosomatic", not a real disease. I went to therapy -- not to help me get through the day, but to try to figure what was wrong with me that I had this problem! My first couple of proctosigmoidoscope was done without anaesthesia. Fortunately I can't remember them. Barium enemas were the thing back then too. Oh joy.

So I guess I coped by becoming very analytical and burying emotions really deep. It helped with academics (I got through engineering school, all the way up to a PhD) and all the medical technology I was exposed to interested me in biomedical engineering. Of course, I've suffered more recently with depression -- you can't bury emotions indefinitely!!!!

And I've have had flare-ups -- but the worst problem was embarrassment and anxiety -- where is the nearest bathroom? I've been fortunate enough not to need to miss lots and lots of school or work. But I became a little agoraphobic I guess.

It's not so bad now. Even though I had a recent flare-up, it's a lot easier to deal with now. As an adult, I can tell other adults "Excuse me, hold that thought! I have to go down the hall." Most everyone is understanding.

I think young people have it a tiny bit better nowadays -- the disease is obviously not psychosomatic but a real disease of the immune system (although I can imagine the old tradition of parents hiding disease and being embarrassed by their kids illness hasn't completely died out); the meds are a little better; I think (hope!) that barbaric customs like metal proctoscopes used without anesthesia have gone away. But let me know if it hasn't! I'll have a word with your doctor!!!!!

And now we have support groups for fellow sufferers to help each other! It only took me 47 years to find one . . .

 

[Manimation]

Oh my god its PATIENT ZERO. GET HER!

Where were you when you were 9 huh? What were you eating? Roughage? AHA!

I'm at 15 years and counting, welcome to the boards. I'm hoping my mild to moderateness like yours will stay calm enough I don't need surgery down the stretch. Hell, the medicine felt barbaric just 15 years ago.. I was shoving a tube up my nose and down into my stomach nightly for "feedings." I have the worlds worst gag reflex. I think the medicine is getting better because more people are getting it. It's getting more rep and funding. Now its fibro/chronic fatigue that is the mystery disease some groups try to claim is mental and not physical.

Being a child of the 60s, I'm wondering you had any, you know, alternative medicinal treatments. Something a ton of people did for the heck of it but that may have really helped you, say, deal with pain?

Well thats enough prying. Welcome again to the boards, and thank god the internet was invented. I feel like support forums are one of the most positive things to come out of the ordeal.

-Drew

 

[Fnord]

Sorry Sandy, but you lose the first place to my mom. She was diagnosed sometimes in the late 50's (don't know what year). It took her ages go get diagnosed, because most doctors had no idea what it was. One told her to drink red wine to improve blood values. Medical science has come a long way. Just since my own CD peaked in the late 80's, it's interesting to see how much better treatment has become.

 

[mizgarnet]

19 years and counting for official diagnosis but in reality 40 years. Sometimes I think we are going backwards in treatment.

I am a product of alternative treatments. One of the best things for nausea is Blackberry wine or Blackberry juice. I would get nauseated and my dad would rock me and get me to sip on his homemade Blackberry wine. It settled my tummy and let me sleep a little. Peppermint tea was a biggie too. The list goes on. I still use a lot of my alternatives.

Remission rocks!

 

[archie]

Sorry Sandy, but you lose the first place to my mom. She was diagnosed sometimes in the late 50's (don't know what year). It took her ages go get diagnosed, because most doctors had no idea what it was. One told her to drink red wine to improve blood values. Medical science has come a long way. Just since my own CD peaked in the late 80's, it's interesting to see how much better treatment has become.

I like that treatment choice, more red wine please, should be on prescription

 

[CDDad]

I'm only at 26 years. My mother is at about 45 years with a few surgeries along the way.
She told me a story when she was first in the hospital (in the 60's) and she was screaming in pain, a nurse actually told her to be quiet, she is scaring the other patients.

 

[MADiMarc]

I'm only at 26 years. My mother is at about 45 years with a few surgeries along the way.
She told me a story when she was first in the hospital (in the 60's) and she was screaming in pain, a nurse actually told her to be quiet, she is scaring the other patients.

Oh good lord! What a compassionate individual that nurse was. Well, thankfully, I never had to deal with nurse Ratchet as Joe's mom did. I am at 26 years diagnosed, but who knows how long really. I was never "normal!" I am so glad that I did not have to deal with the it is all in your head garbage- well once but my husband shut him up real quick.

Hey, has any long termer looked into this parasite stuff? Started in the late 90's and the research is still going on. Just throwing it out here as it would only be long term sufferers that would consider this.

Michele

 

[Sandy]

Hi Fnord (like that name). OK, your mom wins! Wow, the '50's. So you both had it? My dad had some kind of intestinal problem, but he always called it an allergy to milk. I've always wondered if he had Crohn's too. I have a cousin who also had a case of it.

Michele, the parasite stuff actually makes a lot of sense to me. Our immune systems evolved when we had no hygiene at all, no treatments for worms and lice and bugs and ecch. It is actually very robust. But then we got really clean (which helped as far as reducing things like cholera and the plague), but I think the immune system was left with much less to do. Just to keep in practice, it attacks us, by mistake -- maybe after clobbering a genuine infection, it just keeps on going and going. Like the Energizer bunny. I don't use antibacterial hand soap and the like for that reason. But I think it will be a while before treatments based on it really work. I must admit the thought of swallowing worms to treat Crohn's doesn't appeal to me . . .

Sandy

 

[Sandy]

CDDad,

I am awed by your getting through all those surgeries. I hope that's the last of them! I only had one minor fix of a (my only so far) fistula, about 40 years ago, I think.

Sandy