I have now destroyed son #2

I think your son is very lucky to have a dad whose so smart and knowledgeable about uc, and who can help advise and guide him through. As a contrast, I'm the lucky very first person within my family to get uc, so my parents are totally clueless.

Sorry to here that noelhelp. my #1 son does not hold it against me.

But now riddle me this.
#2 son goes to board certified 16 year experience gi.
All I know right now is he went for blood test, I asked how many tubes,he said only 2.
I asked son what is he looking for, he said hemoglobin.
Also scheduled for scope next wed.
Gi says to him does not think it adds up to UC. I say huh, what.
I said did you tell him family history, said yes.  I again say,huh,what.
Lets see about 25 pounds weight loss, in less than 2 months, D with blood.

I would be grateful for a parasite, but no stool testing, and cant be comprehensive blood work
with only 2 tubes. I hope it does not add up to crohns,he did have some mouth ulcers until
he started to smoke again, which healed them. Crohns symptoms not all that different
from UC, but I have not looked at them too much.
So he will have to go without meds at least for another week.
Oh one more strange symptom he has not slept much for the past month.

This is why you have to stay on top of these docs, I don't know what they are thinking
and of course they wont talk to me.
Will have to get my son to give some sort of permission, I guess.
But the lack of multiple, blood tests and stool and other quick tests, also bothers me.

Well all the symptoms sure add up to something, what, if not UC.
When my other son was going down hill fast he lost 25 pounds just like that.

He also did mention to me I guess cramping/blockage up higher which I thought was transvers colon.

But that was when he was somewhat constipated, so hard for me to tell what is going on.

Heck I have been able to feel with my hand my own colon,on the right side when it is not real happy.

Old Mike

Post Edited (Old Mike) : 4/6/2016 6:26:12 PM (GMT-6)

Jujub:
I am not sure where I said ruined, I did say destroyed.
None of my comments are directed at anyone here with UC or anyone else with UC.
At least I don't think so, they were not meant to be.
These are strictly my feelings about the disease and what it has done to me and my
family.
But feel free to openly comment.
Just so the thread does not get locked for some reason.
Thanks for your input.
Old Mike

So sorry to hear this OM. Please do try not to beat yourself up about this.

I'm with you in that I'd be worried he is not having a comprehensive enough screening quick enough. I think it is a shock though for people not used to chronic illness to find out that health systems can let us down and most probably enter the system optimistic that everything is being done in a timely and correct way.

Here there always seems to be this very slow process of a test, followed by another test rather than just going for it all at once (for cost reasons I presume). I know here that for a true comprehensive stool test that includes inflammatory markers, microbiology and parasitology the quickest way is usually to go private. We have some US companies over here in the UK offering such tests so I'd presume they can be accessed there? I know they get criticised as not reliable by some but I had a good experience from them. The cost is around 400 - 500$

Also, good that scope soon. The only thing that diagnosed my c diff was a scope where the ulcers were the familiar yellow as the samples kept coming up negative (I suspect they were not stored and transported properly).

Wishing him well.

jujub said...
I'm not trying to throw shade, Old Mike, but I somewhat take exception to your characterization of a person as "ruined" because they have UC. I've had moderate to severe UC for 15 years, and I don't consider myself ruined.

Just sayin'...

Thank god I'm not the only one who feels this way.

That said, OM is entitled to his opinion and I certainly don't want to get the thread locked. But even for me this is all a bit too extreme - I don't see myself as ruined, or "destroyed", by my IBD either. It's been a massive pain up the arse and I'd much, much, much rather have not had it, but I'm not gonna throw myself off a cliff because of it.

To be honest, I feel like autism, and the resulting secondary mood disorders such as depression, have "ruined" my life a lot more than Crohn's has. My mum passed on the Crohn's through her side of the family, and my dad the autism/asperger's, but I don't blame either of them for that. I blame them for being bad parents, but not for the genes they passed on - that's something that was entirely beyond their control.

Please mods, don't lock the thread because of this post. This is literally my own opinion and I'm not telling anyone else what they should believe.

I was quite close to death with my disease too.

"I'm glad not everyone feels that way but maybe some people should stop reflecting comments inwards and not take things so personally like they do on this board...not to mention, letting an opinion go so that it doesn't get locked (I've seen the pattern here lately of this happening a lot and it's a shame that people don't learn and instead keep instigating non-issues)"

Thanks EWA: They cut a lot of raw meat in the restaurant, not sure anymore if he actually does it.
But I let him know, I also told him to tell them, he may have a lot of raw meat contact.

Thanks OM

It the weight loss that I find concerning. My nice had all of those symptoms minus the weight loss, and she was diagnosed with IBS. She's much better now, but still not back to where she was.

Anyway, out of all the symptoms that one stood out - depending on how much weight loss over what period of time that is. Happens with all intestinal issues but I find it seems more dramatic or pronounced with IBD.

Well, hopefully he get's both the answers and the treatment he needs. That's some dramatic weight loss...

Hey Mike,

Got two brothers... me and older one have severe Crohns, younger one has mild UC. Father died from Parkinson's complications long time ago... We never cared about lineage as far as illness was concerned. All we care is that he is not here with us.

Enjoy your time with sons, and know that all they need is your company and obvious love.

take care.

Could only pry a bit out of the nurse, hemoglobin a little low, serum WBC normal, stool WBC, many.
Since serum WBC normal might rule out c diff, also might rule out chance of mega colon hopefully.
Stool WBC high leaves a zillion things open.
OM

Hi OM,
I don't have answers but thinking about u and your son. You are a very caring dad and that combined with your knowledge and experience has to be a big help to your son. We are praying for some answers and a nice healthy recovery.
B