Anyone on this board have Crohn's or knows someone with Crohn's?

May 7, 2002
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My 12 yr old daughter was diagnosed with Crohns one year ago. She gets infusions every 6 weeks (Remicaid sp?). After one year of getting infusions her blood work is coming back normal but her doc wants to do another colonoscopy just to get a close up. I know there is no cure but our hope is that she goes into remissions so that the frequency of infusions goes down. My question to everyone here is anyone currently taking remicade to treat crohns... if so how is it working? I have researched the disease a ton and don't like what I am reading. The doc that treats my daughter tells me I shouldn't rely on the internet for crohns info accept for a few accredited sites. So I am conflicted... is he telling me that so I don't worry about the horrible things to come or is he telling me that because he feels she will be fine. Some of the things I have read is:
1) crohns can lead to colon cancer.
2) It is worse than colitis because colitis can be corrected with surgery whereas crohns cant.

I hate that such an innocent girl has to suffer... I guess it could be way worse (she could have terminal sickness) but as any parent here can attest, any major sickness that happens to your child is heart breaking. Any input from those in the know would be appreciated.
I was crohn's diagnosed 4 years ago and tried several different treatment options before we got it under control with Remicade. If uncontrolled it can be a serious issue because your body stops digesting your food and just pushes it through undigested. I lost about 30 pounds and got the moon face from all the steroids. After my first infusion with Remicade things started to turn around and I have been in remission for 3 years now. Hard to believe how sick I was. Now much better. I believe that there are some promising treatments on the horizon with fecal transplants and such.
 

Supreme Lord Z

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Friggen epidemic on here. Who knew the Paddock was gastrointestinal ground zero? They're dropping like flies. I'm going to start a funerary thread and make some caaaiiissshhhhh.
 
May 2, 2004
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Strolled up to kroger to get my prescription. $700 for a 30 day supply. I was so taken aback that I don't even remember what it was called. Talking to doctor and health insurance on monday before taking that dive. This disease sucks.
 

Get Buckets

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Nov 4, 2007
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Who's arguing? I missed that

Lek and Beave primarily. Zencat last evening had a one sentence post feigning sympathy for the OP and then went on a 200 word rambling diatribe about how he is bullied on the paddock which resulted in some additional off topic exchanges.
 
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May 2, 2004
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Just got a ******* $2400 bill because my GI referred me out of network for a blood test called prometheus to determine whether I had crohn's or UC. $2400 for a ******* ******** blood test. On top of the motherfucking $3500 in medical bills I have paid so far this year and the $10k I have been paying on for the past 3 years.

I'm ******* absolutely done with this ****. Insurance is pointless. I'm on the verge of just canceling it and then never ******* paying the medical bills that I incur. Sticking you ******* saps with the cost.
 
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Ahnan E. Muss

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Just got a ****ing $2400 bill because my GI referred me out of network for a blood test called prometheus to determine whether I had crohn's or UC. $2400 for a ****ing ******** blood test. On top of the mother****ing $3500 in medical bills I have paid so far this year and the $10k I have been paying on for the past 3 years.

I'm ****ing absolutely done with this ****. Insurance is pointless. I'm on the verge of just canceling it and then never ****ing paying the medical bills that I incur. Sticking you ****ing saps with the cost.

Prometheus is the only place that does that test, so there is no other option, ie, no 'in-network' way to do the test.

It's totally normal to get a ridiculous bill for it, and then it's totally normal to appeal to the insurance company (and/or have your doctor appeal to them), and explain that Prometheus is the only place that can do the test. Also have the doctor explain to the insurance company why the test was necessary.

Once appealed, insurance will often pay for it in full.

Even if they don't, Prometheus themselves will often help with insurance payments and will make it so that your actual cost is only something around $200-300 (I'm not sure about that amount, but I know it's a fraction of your bill).

It's silly that this happens time and time again - get on some forums for IBD and see how many hundreds, if not thousands, of patients have to fight this and appeal it every single time. Insurance companies default position seems to be not to pay for it, but almost all of them give in some when questioned about it. I don't understand why they all put up the fight like they do. It really just makes the patient jump through more unnecessary hoops when they should be focusing on dealing with a serious new diagnosis.

Long story short, with work Prometheus, your doctor, and your insurance, and it's very likely the bill will get reduced dramatically.
 

Louis_Skunt

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About 15 years ago I got set up with a beautiful girl. She looked like Jennifer Anniston, I was thrilled. After our 2nd date she told me she had Crohns. I went home, learned about the condition, and canceled the date. Never saw her again. Something about nailing a girl with a colostomy bag by her side grosses me.
I was young, and I regret it. So many kinky things could've taken place. Honest story. I just wasn't thinking.
 

Ahnan E. Muss

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About 15 years ago I got set up with a beautiful girl. She looked like Jennifer Anniston, I was thrilled. After our 2nd date she told me she had Crohns. I went home, learned about the condition, and canceled the date. Never saw her again. Something about nailing a girl with a colostomy bag by her side grosses me.
I was young, and I regret it. So many kinky things could've taken place. Honest story. I just wasn't thinking.

Did she tell you she had a colostomy? Because even with Crohn's, the odds of her having one aren't all that high.
 
Nov 7, 2008
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Man. Came to this thread cuz it hits close to home and all I read is how big of an angry lil beyotch lek is. Seriously, she has serious daddy issues. Lek, ugly girls can still succeed at life. It will be okay. I'm sure we can help.


Back to the thread: wife has chrons and it effing sucks. She has had surgery once but looks like it's coming back. The only time she was symptom free was when she was pregnant. I fee for people suffering from it because it seems really debilitating.

I've been researching and I'm hearing that they might link it to cows. Some have a disease that gets passed on thru milk. Anyone else hearing this?


Lek. It will be okay. Even big fat red heads can find their own Willy and still get loven. You just got to find yours.
 

Ahnan E. Muss

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No biopsy results yet. Was diagnosed in april with UC. Latest scope showed extensive non-continuous/sporadic inflammation, which my understanding is a characteristic of Crohn's.

I remember your UC diagnosis. You are right that non-continuous inflammation is more characteristic of Crohn's (but not always so).. Biopsies will help determine. What maintenance medication have you been taking?
 

Ahnan E. Muss

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Man. Came to this thread cuz it hits close to home and all I read is how big of an angry lil beyotch lek is. Seriously, she has serious daddy issues. Lek, ugly girls can still succeed at life. It will be okay. I'm sure we can help.


Back to the thread: wife has chrons and it effing sucks. She has had surgery once but looks like it's coming back. The only time she was symptom free was when she was pregnant. I fee for people suffering from it because it seems really debilitating.

I've been researching and I'm hearing that they might link it to cows. Some have a disease that gets passed on thru milk. Anyone else hearing this?


Lek. It will be okay. Even big fat red heads can find their own Willy and still get loven. You just got to find yours.

There is tons of info online about Crohn's being similar, if not related to, Johne's disease in cattle and other ruminants -which is an infection with MAP. It's a highly controversial topic, however, and one that isn't accepted (or is only partially accepted) by mainstream medicine. Genes play a large role in Crohn's and in UC, but genes alone don't explain the diseases. There is an unknown environmental role (possibly an infectious organism(s) that most people can clear on their own, but those with certain gene mutations are unable to clear).

What med is your wife taking for her Crohn's? What surgery did she have - a resection?
 
Nov 7, 2008
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There is tons of info online about Crohn's being similar, if not related to, Johne's disease in cattle and other ruminants -which is an infection with MAP. It's a highly controversial topic, however, and one that isn't accepted (or is only partially accepted) by mainstream medicine. Genes play a large role in Crohn's and in UC, but genes alone don't explain the diseases. There is an unknown environmental role (possibly an infectious organism(s) that most people can clear on their own, but those with certain gene mutations are unable to clear).

What med is your wife taking for her Crohn's? What surgery did she have - a resection?

She is on humira. She also took remicaid(?) for a while and one other. Also iron infusions every so often.

She had about 4 inches removed and also gallbladder(?) removed.
 

Ahnan E. Muss

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Lialda is fairly effective as a maintenance medication for mild-to-moderate UC.

If you have more severe UC, you'll need something else instead of it (or along with it).

If you find out you actually have Crohn's, you'll need something else entirely. Lialda isn't effective in treating Crohn's.