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Well, i wish i could have slept until it was time to go, because i really want to have a drink and can't, but that's alright. :p I'm headed out in about an hour and a half. If everyone could please say a little prayer for some answers for me. :)

I'll let you guys know how it went when i get home. :)
 
*good luck* Pam - prayer said and hopes in place. Hope you are taking someone with you that can translate what doc says to you in the drunken hangover state afterward ;)
 
I am, i've got my girlfriend who's an RN coming to pick me up. I love my husband dearly, but the doc. might as well speak German to him, so i figured this would be a better match. :)
 
Well, they found nothing. Which is good and bad......I just want answers, i'm so frustrated right now. I go see him in a few weeks and we go from there i guess. He didn't really stick around for me to ask him any questions about what the next step is.
Feeling, again, like it's all in my head. :(
 
I am happy and sad for you at the same time...What a let down after all the prep. My colon is always normal as my disease is in the terminal ileum. Did you have a Barium swallow with small bowel follow through yet?
 
Nope, i'm going to ask for that next time i see my GP, as it will be longer before i can see the GI. That's the thing, a colonoscopy doesn't get the whole picture, i want them to take a look in the small intestine, stomach, etc.

My pain is lower right, and in the middle, so maybe a sbft would be the best look.
 
Oh hon. I'm so sorry. I know how frustrating and upsetting this is. PM me if you want. We can talk since we're sitting in the same boat. I'm so sorry though. I wanted you to walk out of there with the answers you deserve.
 
Tamesis, I was initially diagnosed by accident. I had an emergency CT scan because they thought I had appendicitis.....You can really see it by both methods.
 
My CT scan in February last year showed nothing, and I was/am fairly sick. Dr. really just ordered it to make sure nothing nasty was happening outside the intestines/colon. Hopefully the Colonoscopy will give you some answers.
 
Sorry, it was a colonoscopy that i had today that didn't show anything. :(
I just don't know where to go from here.
 
Yeah def get a SBFT as my are also in the terminal ileum and I was just luck that he manage to see a couple in the colonoscopy but then on the SBFT he found heaps more. Its not all in your head Crohns is just so hard to diagnose... don't give up my dear you will get some answers soon enough.
 
Oh Pam, after all that and no news? I'm sorry to hear that, but you must keep pressing on because there is SOMETHING going on! Could they give you a pred taper to see how you respond?
 
*Sorry* Pam!!! I would definitely see if they will do the SBFT as well. Like I have told Jess, sometimes it just has to get sooo bad before that stupid diagnosis comes through - so frustrating!! ((HUGS))!!
 
Okay hon, now that I'm actually on a computer rather than my phone, maybe I can actually get a more meaningful reply out.

First, take tonight to scream, cry, kick, punch (pillows!), throw things, whatever you may need to do to get your frustration out. Heck, take tomorrow if you need too. Get it out. Let it all go so you can come back to everything with a clear head and start really trying to understand it all. Right now, emotions are overwhelming. You probably feel let down... dejected as I put it. Hopeless. I promise you, you're not. We'll walk this walk together and find answers somewhere. No matter how long it takes, I'll stand beside you and we'll find answers.

Second, don't hesitate to question. Write them down. "Well, if it's this, how does that fit in..." and stuff like that. Just tonight, I remembered something from my mom's wedding 3.5 years ago. The day after, I was rushing to the bathroom and commented to my grandmother something like, "I must have a spastic colon or something." I don't know if it fits, but it's worth discussing with the doc. It's worth it because it shows there's more history than perhaps even I was accounting for.

Also, remember the tests don't show everything. Look into the SBFT, but even if that doesn't show anything, don't be discouraged. I was last year after I had mine. My colonoscopy had already shown some abnormality. Granted, I don't know what we're taking that for now, but whatever... that's not the point here. Anyways, I'd had a small bowel series of Xrays done, and they were normal. The doc told me that he doesn't put too much into that. A positive test means yes, it's definitely there. A negative test doesn't necessarily mean it's not. Much like a home pregnancy test... false negatives are possible. False positives are not.

See if they can do the capsule endoscopy. It's possible something is going on, but it's in that nether region that neither an endoscopy or colonoscopy can reach. From what I've gathered, only a capsule endoscopy can give you a view there.

Keep notes. It's hard for me at appointments to express exactly what this does to me on a daily basis, but notes may help. A journal of some sorts to record symptoms and such on a daily basis.

It's not all in your head hon. The answers are somewhere they just haven't found yet. But they will. And I'm here fighting the fight with you while they look.
 
Thanks so much everyone. I didn't realize how much i was putting into this one test showing something. I will be pushing for a pred. taper, because as someone said, what the heck else is there that a pred taper could help that isn't Crohns. i say that because colitis likely would have been found today, because it is only in the colon.

Thanks so much Jess, you have some great points in there, especially about false negatives being possible but not false positives. I wish they would have the follow up appt.'s quicker! I don't want to wait six freaking weeks, i want to know now! LOL.

Well, i'll keep you in my thoughts, and one day, we will both get better!
 
Im sorry to hear this!
But I agree with everything everyone else has said. You have to keep pushing! There will be a diagnoses it just meens you don't have it today. Keep your head up :)
x x x x x
 
Pam, I'm sorry you didn't get the answers you were looking for. Do like Jess says, she has said it better than I can and she has offered something that you can't refuse. To be beside you all the way. We all will be there, but Jess is a fighter and when she gets in that fighter mode look out. I think I have just seen the beginning of a great friendship.

Jess, its good to see you back in the drivers seat. I knew you would be once you got all the frustration out of you. I'm glad to see that by another's frustration you have the compassion to hold out your hand and offer your hand to help Pam get back on her feet. Just because they haven't found your answers yet doesn't mean nothing is there. It is there and together you both will get the answers.

Good luck to both of you young ladies and keep fighting. Take the advice of an old man that has been down the same road.
 
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