HealingWell
Search Close Search
☰

One of my worst nightmares

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 11/21/2008 7:12 AM (GMT 0)
My daughter (she'll only be 19 in January) is waiting to get a referal to see a GI cry ...she's had 2 occassions of incontinence so far, and terrible stomach aches that wake her up in the middle of the night at least a few times a week (she'll also get them when awake as well) and she has D more than anything eles for the most part and her stupid family doc (she sees a different family doc than I do) keeps trying to throw the IBS DX at her without the proper steps of sending her off to a GI, especially with the family history (my mom has UC)...

So her GP tells her to talk to me about getting her in to see my GI, ah Duh, like I can do that, as if it works that way!!!  Idiot!  Needless to say, I contacted his office...the receptionist that books appointments with specialists is waiting to hear back from them...the power of one phone call from an irate mom that happens to have CD is amazing.

Although I probably went a little far when I told the receptionist that if he doesn't give the okay for her to get a referal to a GI then he'd need one for a proctologist...didn't go over very well, but I don't care, don't mess with a mom, especially a CD mom with a kid showing those kinds of symptoms...imagine, he told her because she doesn't have bloody stools that IBS is more likely what's going on....I didn't bleed with my CD until almost 10 yrs into having it...nothing worse than text-book docs that don't have a clue to the individualism when it comes to IBD.

I just hope she gets in soon, our wait times here to see specialists are longer and longer all the time, so I'm trying to stay nice and calm for her.

:)

Posted 11/21/2008 9:50 AM (GMT 0)
Hi pb4, I am sorry what you are going threw with this stupid doctor. I hope you daughter can get into see a GI-doctor. My prayers are with you and your daughter.

teddybear
Posted 11/21/2008 10:18 AM (GMT 0)
(((pb4))) I hope you can get an appointment soon. I will keep you and your daughter in prayer. Blessings, Julie
Posted 11/21/2008 11:12 AM (GMT 0)
Hi Sure am hoping she doesn't have IBD .Please keep us updated.lol gail
Posted 11/21/2008 11:49 AM (GMT 0)
pb4 -

Give me that doctor's name and number and I will call. devil Like you, don't mess with my kid's health or you will be grabbing a bull by the horns. I have not yet had bleeding and have been in the hospital and ER for CD multiple times.

One little known fact that I stumbled across when I was a court reporter taking depositions on a case against an insurance company - a death caused by non-referral. Some insurance companies pay out to primary care physicians who keep their referrals under a quota. This is not a falsehood. I had to work hard to maintain my composure during this deposition... I was outraged. This was a few years back, but I suspect this practice has not changed. This insurance company was a large one, though I don't remember which one it was now. It is because of that deposition that I will ALWAYS choose PPO so that i do not need a referral.
Posted 11/21/2008 2:31 PM (GMT 0)
 i am new to this site so bear with me confused short version. my daughter was diagnosed with crohns in 2002 after her father passed away due to cancer. she was 18 and spirolled out of control and ended up pregnant.she had a very difficult preg. we went to the emergency room at least once a week. her gastro said they couldnt help her while preg. she had the baby in may this yr. shes beautiful but she ended up with a laserated bladder,lowr intestinal damage, and a vaginal hematoma. she cant work and has no insurance .she ended up bleeding out and they did emergency surgery to repair her insides. medacaid cut her off and we are reapplying but thats a slow process.meanwhile she throws up everything and i cant afford to pay for her dr. im single working and almost lost my job cuz of all this. im at such a loss! shes 24 now and we may be spending another weekend in the hospital getting her fluids and juggling the baby in between.my grandaughter is a true blessing but we worry about her getting this debilating disease. thanks for letting me vent.
Posted 11/21/2008 2:42 PM (GMT 0)
My son Andrew was diagnosed at 18..coming into his senior year of high school..He has had his first semester in college now..They did not mess around with him..I would have been furious if they had..He had every CT, blood work, ect within the first two weeks of a bad episode..He did not play sports his senior year because of it..I would press the issue, but I know how hard that can be..My first GI had no bedside manner & did not care..My regular doctor who was over a training clinic did most of my care and happened to be very schooled with IBD..I went back to a GI in Kansas now who actually seems to care..

Cindy 

Posted 11/21/2008 3:52 PM (GMT 0)
pb4, I'm so sorry you and your daughter are going through this! All I can say is thankfully she has YOU for her mom! You can help her deal with this in so many ways!

Somewhere along the line I think I realized we have kids the same sex and same age or very nearly the same age. My daughter is 18--almost 19, and my son is 16--almost 17. You also have a son around my son's age, right? (Just throwing that in for no particular reason.smilewinkgrin)

I hope your daughter gets the attention she needs very soon and waits are not a problem! Also keeping my fingers crossed that your worst nightmare is not confirmed!
Posted 11/21/2008 5:48 PM (GMT 0)
This reminds my of my moms stuggle with doctors when I was young. She's an RN too! I was constantly in and out of hospitals with diarrhea and severe stomach aches and vomiting. I missed 3 months of school my 3rd grade year and ended up having to have a tutor come to the house. She said she would always tell the doctors something else is wrong with my child! I was diagnosed with appendicitis one time.. but didn't end up having surgery because my bood work came back negative, I was diagnosed with pneumonia, the flu, ovarian cysts..everything.

Keep pushing for your daughter!!!! Trust me, it'll mean alot to her, and probably save her alot of the complications that I had in the long run from no treatment. Doctors have to realize that every disease is NOT TEXTBOOK. I wish you alot of luck and I really hope you get into the GI office!!!

Posted 11/21/2008 7:05 PM (GMT 0)
pb4 said... I didn't bleed with my CD until almost 10 yrs into having it...nothing worse than text-book docs that don't have a clue to the individualism when it comes to IBD. PB4, so sorry to hear the struggles with your daughter. I did not have bleeding for about 10 years too. that is when I finally got diagnosed cause the bleeding caused the need for a colonoscopy. otherwise I would still be sick and not have a clue I have CD. it frustrates me when Dr's don't look deeper into things. good luck! Karen
Posted 11/21/2008 8:50 PM (GMT 0)
(((HUGS PB4))) I hope and pray your little one is not following in yours and your Mom steps. Keep us posted.

Gail *Nanners*
Posted 11/22/2008 12:50 AM (GMT 0)
pb4 - My hopes that there is a non-chronic reason for her problems.
Posted 11/22/2008 12:53 AM (GMT 0)
Pb4, I'm hoping the best for your daughter. My eldest son has always had "tummy problems". They scoped him last year, so far a hiatus hernia
and gastritis, but I know that sinking feeling when it concerns your kids.

One more point, I have what is considered severe crohns, but never had a rectal bleed!! Lots of vomiting fecal fluid and the rest, but never
bleeding.. Go figure!!

I'm thinking of you!
Posted 11/22/2008 3:06 AM (GMT 0)
Pb4, I hope your daughter's OK. I have 3 daughters and try not to think about the possibility of any of them having to deal with this DD. I do my part by paying for their health insurance, even my adult daughter who has a job but doesn't earn enough to pay for her own insurance. She thinks she's invincible and that I'm wasting my $$ paying for her health insurance. I'm older and wiser and continue to pay, but hope and pray she's right. I'm thankful every single day that goes by that they are crohn's free. I hope your daughter gets in to see the specialist soon and that she'll be OK.
Posted 11/22/2008 3:15 AM (GMT 0)
I am so sorry!! That too is my worst nightmare. I pray my child does not have to live through this hell.
Posted 11/22/2008 4:12 AM (GMT 0)
pb4
I hope your daughter will be okay. Don't ever feel bad for advocating for her. We are our own best advocates, and doctors are not gods. Especially gp's, who often have no idea about the symptomology of Crohn's. I am my doctor's employer is how I look at it... he reports to me. If I am unhappy with his service I look for another. ( and I have "fired" a doctor before because she was incompetent). I'm also lucky enough to live in Canada, where I'm not beholden to insurance companies. I am in charge of my own healthcare. Keep advocating for your daughter... it can only help her to learn how to advocate for herself as she continues to live with this darnable disease. I hope both of you are learning everything you can (from credible sources about Crohn's) and not relying on simple family doctors to have all the answers! Knowledge is power and we are in control of our own treatment. Again, wishing you and your daughter good luck. Keep fighting!
Michael
Posted 11/22/2008 4:34 AM (GMT 0)
You go girl. Hope your doc knows you were going to put your foot where the sun dont shine if he didn't help. I'm hopeing your daughter is ok and doesn't have crohns. Maybe its something less troublesome and they can fix her right up....
Posted 11/22/2008 4:48 AM (GMT 0)
Oh no, that is my worse nightmare also. I hope they can get her in quickly and see what's going on. I also didn't have any bleeding for almost a decade. But I also heard that whole run around, complete with other lame excuses as to why it was just IBS with little testing or seeing a specialist.
Posted 11/22/2008 8:26 AM (GMT 0)
LOL. Proctologist. Serves them right. (wicked grin) Way to lay it on the line. You'll show 'em rectal bleeding if they don't get their nonsense in order, I'm sure.

Take care, and keeping my fingers crossed.
Posted 11/22/2008 7:12 PM (GMT 0)
pb, i am sorry to hear about your daughter. hopefully she doesn't have ibd but if it does turn out to be ibd, she will at least have you to help guide her. i have just the opposite, i have been bugging my mom about her stomach aches and her really bad c that she gets. her having 1 bowel movement every two weeks is just not normal. it scares me and so much like many people in their 50's, after doctor recommendations, they put off their colonoscopies.

my best to you and your daughter *hugs*
Posted 11/22/2008 7:37 PM (GMT 0)
((((hugs))))

This is my worst nightmare too. My older daughter is showing signs too, not the one I was worried about quite frankly. But for now, I have her watching her diet and taking things slowly. Since she just moved out a few months ago, I'm really hoping that she is just not eating right and that things will pass with some diet changes. BUT, if they don't you can bet that my Mamma Bear mode will come out just like yours and God help the doctor who stands in the way of making my baby better. Like you, my Mom had IBD and I have IBD, so some real family concerns and I am watching like a hawk.

Keeping you and your daughter in my thoughts.
Posted 11/22/2008 10:18 PM (GMT 0)
pb4 - I hope your daughter gets into the specialist soon.  You are definitely living most of ours nightmare, none of us ever want to see our kids go through this dd. I too watch my two boys like a hawk with any out of the ordinary symptoms. Your daughter is lucky to have you and your knowledge behind her, not to mention your foot in his a** if need be!

thinking of you both,

Shelley

Posted 11/22/2008 11:00 PM (GMT 0)
Hang in there pb4. I feel for those who suffer with IBS but I really really can't stand when people pass or mistake crohns symptoms for IBS. I hope you get in to see a specialist soon.
Sally
Posted 11/22/2008 11:08 PM (GMT 0)

Zanne said...
((((hugs))))

This is my worst nightmare too. My older daughter is showing signs too, not the one I was worried about quite frankly. But for now, I have her watching her diet and taking things slowly. Since she just moved out a few months ago, I'm really hoping that she is just not eating right and that things will pass with some diet changes. BUT, if they don't you can bet that my Mamma Bear mode will come out just like yours and God help the doctor who stands in the way of making my baby better. Like you, my Mom had IBD and I have IBD, so some real family concerns and I am watching like a hawk.

Keeping you and your daughter in my thoughts.

Interestingly that's when my symptoms really kicked in too. When I moved out of my Mom's house. I think those big life changes, and stress, can act as some kind of trigger sometimes. Either that it's just at that age that so many of us come down with it. That 18-22 range, seems like a common age to come down with this.

My son, who is 10, asks me here and there if I think he'll get it. I think he worries about it. I try to put his mind at ease, because there really is a good chance that he won't. But I can't deny that I don't worry about it for him. Scares me to death really. I want it to be one of those times where I can say I'm SO glad I can take on the burden of having this and not him.

Posted 11/22/2008 11:27 PM (GMT 0)
I hope your daughter does not have crohn's or UC.  I have had crohn's for 29 years, and I never have bleeding (touch wood).  I to was 18 when I was diagnosed with crohn's disease.  My symptoms were cramping and diarrhea, and it took one year to get a diagnosis.  Good for you for dealing with her family doctor. 

Take care,

Julia

 

✚ New Topic ✚ Reply
12