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Son had his scopes today, frustrated

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Crohn's Disease
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Posted 1/11/2017 11:56 PM (GMT 0)
It was dejavu for me when our GI doc came out after doing my son's scopes. Took me back 10 years to my first scope. He said there was mild inflammation scattered through out his colon. So we would need to wait for the biopsies results. Which I know is the norm, but he didn't seem to be leaning towards Crohn's. In fact he said it could be nothing. Those symptoms he's having aren't nothing, and that's exactly the way my first colonoscopy looked. It took several years of not being treated and them waiting until was severe before they would admit to what I had. I don't want that for my kid. I thought with my history it would be a no brainer. He shouldn't have inflammation, and all these symptoms? I'm just baffled.
Posted 1/12/2017 12:29 AM (GMT 0)
Jen I am sorry for what your son is going through. As a parent I think we hurt doubly hard for our children and since you have already lived this it must be especially painful! I hope that the biopsies give you (and him) some clear answers and if not I hope your son can find another clinic / test/ doctor. No one should have to "wait" until the disease has progressed to a higher level of symptoms!
Posted 1/12/2017 12:44 AM (GMT 0)
So sorry for your son, Jen. Have been in the same boat as yours I can definitely relate. It took me 9 years until a fistula developed, diagnosis confirmed and I was put on Remicade. Def, for you it's hard as his mother and you know how much he's suffering.

Hope it's just something mild or a kind of infectious inflammation that would be cleared with medicine.

If you are that worried, can't you argue that Crohn's is genetic and that there is a 10% possibility that children might get it from their parents?
Posted 1/12/2017 1:20 AM (GMT 0)
Oh yes, I've definitely been going the genetic route with the GI doc. Being he's also my GI doctor I thought it would help. Unfortunately he's relatively new to me as well, although he knows how severe my disease has gotten from my chart and the nice referral my previous GI doc sent over. I expressed this exact concern to him because I know how many of us have had a hard time getting an early diagnosis. I think that would have saved me SO much had I had someone listen to me years sooner.

I was really hoping there would be some greater evidence right away since my son's been suffering for about a year now. It got slowly worse over the past year. I thought it was stress as he was struggling with graduation tests, our move and getting his first job. But it never seemed to go away and he's been in a lot of pain and lots of diarrhea. It's so frustrating that they just keep sending him home with nothing to help until we get more results. I don't know how the kid is working his physical job at Amazon the way he feels. Thankfully we have our follow up appointment on the 20th, and I have LOTS of questions. I'm not the naive 18 year old this go round that accepted their "It's just IBS" speech all those years ago. I can't accept that for him.
Posted 1/12/2017 1:39 AM (GMT 0)
So sorry to hear this. Hoping things work out quickly so he can get healing!
Posted 1/12/2017 2:17 AM (GMT 0)
Jen,

I'm so sorry that you're faced with such a stressful ordeal. I know first hand as a parent how frustrating the waiting is for answers, especially when you have to watch your child suffer.

I can only hope that you get some answers soon, and that it just might be other things going on. Even with the genetic code, it still might be something other than IBD.

I don't want to present you with wishful thinking, but more positive strength. I can't stress enough how important it is as a parent to remain positive and hopeful. I'm sure you're well aware of all of this, but in tough times, we all tend to forget the importance of that.

Thoughts and prayers coming your way. Best of hope on the 20th.
Posted 1/12/2017 2:54 AM (GMT 0)
Thanks you guys, I'd love nothing more for it to be something else. I think he just got me riled when he said it might be "nothing." Almost like it triggered leftover resentment that I've got down deep for the docs that always dismissed me.
Posted 1/12/2017 3:15 PM (GMT 0)
Best of luck on the 20th, Jen. I understand the resentment at being dismissed. I was lucky enough to get an early diagnosis, but then for years afterwards I might as well have had IBS for all the doctors took my disease seriously. I didn't help myself, I know. I was naive and made a lot of incorrect assumptions in retrospect. But on the other hand the doctors were the supposed experts and should have known I wasn't being treated adequately.

It's cold comfort to you, I'm sure. But even with a diagnosis you can still be fobbed off. However, with your knowledge, hopefully that won't happen to your son.
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