Worried mum

[bindi's mum]

worried mum

hello everyone,i have been reading these threads for a few days and decided to join.hopefully i a can get some advice.my daughter is 21 and been diagnosed with crohns early this year.she had a short burst of prednisone then put on Imuran.last week she had an abdominal ct.this is when i became quite distressed because it shows she has an inflammed aorta.the gp has made an apt for a vascular specialist to see her next week to monitor and ascess her.i have just been so worried ,we have never been told that the crohns could affect her heart.we saw the GI last week[he ordered the abdo ct] to make sure she was okay to start humira in a week or two[depending on the authority from government]most of the posts i have read has been about bowel problems,bindi does have pain,fatigue and mild diahrea,thankfully no bleeding since early this year,i am curios as to wether anyone else has experience with thickening of the aorta. i just love lishyloo's sense of humour and determination, thanks

 

[shazamataz]

Welcome Bindi's mum!
Sound scary. I can't help with any info, but just wanted to welcome you and say i hope you get some answers soon. there are likely others here who can be of more use than me!
Shaz

 

[Jennjenn]

:welcome:
I hope everything gets better for your daughter...I do not have heart problems but when I tried Humira for a short time. The lady from Abbott came in to explain how to inject myself when my doctor was there. She also asked me some questions about my medical history. One of the ? was do you have any of the following because it can possibly make it worse.....One ? was do you have any heart conditions.....Just to make sure I would research a little more before she takes it just to be on the safe side....not trying to make you worry more just saying to make sure you look into that.
But I hope she does start to feel better soon and that you find helpful information on this site...

 

[Crohn's 35]

First of all you need a ((hug)), I can't even fathom what you are going through. I haven't heard of the heart being specifically linked to Crohns but everytime something bad erupts, it seems to be Crohn's related. I do know Crohns affects the Gastro system for mouth to anus, that pretty much covers your whole body.

I seem to notice that most people get their worst systoms at the ages of twenty something, not sure why.

Crohns and UC and IBS runs heavily in our family and my daughter who will be 22 soon also is very aware of this and tries to eat as good as can be in University. I do worry she will get it, she is a strong person and very good health wise but with the hereditary factors, I think about it from time to time. Are there any other family members with IBD or Heart disease? I know I could tell you not to worry but it is a mom's job, goes with the territory. Maybe she could come on here too and get some insights on her condition, everyone is here to help, with our experiences and trial and errors.

Please keep us updated, and let us know what the tests results are. Good that she is not bleeding, one less thing to worry about.

Welcome to the forum!

 

[Tan]

Hi Bindi's mum, I can't really help you with the heart question but wanted to welcome you to the forum from another aussie! Good to see you are trying to find answers to your daughters health problems. I am only new to crohns as I was only diagnosed in mid Sept so am still learning as Im sure your daughter is.

I was actually also put on Imuran but got taken off last week due to a reaction. Am waiting to find out what the next course of action is.

Good luck and I hope it all works out for your daughter and her heart.

 

[bindi's mum]

thankyou everyonefor your reply,hey tan,how far up north are you and do you have to go to townsville or cairns to see specialist?we go to the gi at the sunny coast which is a 3 and a half hour drive.but now we may have to start going to brizzy for the vascular surgeon.bindi just says ,great can we go shopping?she is nearly 22 and has struggled for 4 years to finish nursing at uni,and next week she graduates from tafe as an een,she just found it to hard at the moment to continue with uni.but hopefully everything will startlooking better now her studying is over.some say the stress of uni could affect her crohns,all i know is we will take a day at a time at this stage thanks karen[bindis mum]

 

[Pirate]

Hi Karen and welcome to the forum. I'm not sure if the CD plays a part in your daughter's heart condition. I have had CD since 1986 and I had a heart attack in Febuary of 08. I can't really blame it on the CD and none of my doctors has ever said they are related. I think it would be hard to say that they are connected to one another, but who knows.
I hope Bindi the best of luck with both health issues and that she doesn't withdraw to much from the CD issue. I have found it best to be able to talk about it just to avoid becoming to depressed over it.
Good luck with everything, Karen.

 

[lifelover]

Hi Bindi's Mum-

I have heard conflicting opinions from doctors about lots of things regarding Crohn's, but from what I understand, it is a disease of inflammation. I know it can affect the eyes and joints, so I don't know why the heart would be necessarily excluded. But I also don't know that it would necessarily would be affected. Ask your daughter’s doctor lots of questions and make sure you both feel comfortable with the answers. Trust your gut and if you don’t feel like you’re getting answers you feel comfortable with then get a second and third opinion. I think that doctors get accustomed to patients just going with whatever they tell them and sometimes you have to be persistent and you end up feeling like a broken record asking the same question over and over. I also have found that doctors who specialize in areas other than the GI don’t always know much about Crohn’s and the effects it may have on the body as a whole. I wish you and your daughter the best of luck and I hope she joins the group! Your daughter is so lucky to have a mom who cares so much about her.

 

[Tan]

Hi Karen... I live in Townsville so that makes it heaps easier to get access to a good specialist and not have to travel. I feel for you, it would be hard to have to keep travelling for your daughters specialist appointments.. bloody 3.5 hours and then if you have to go to brissy that will be another hour on top that is a big day!
Im really struggling at the moment I as Im only new to the disease and am currently on no drugs until I speak with my GI over the next few days. Have my good days and bad ones. Yesterday and today weren't good ones but will get there. I find stress doesn't help with the symptoms mine seems to get worse if Im stressed and I can only imagine studing wouldn't help with stress levels. I used to work my butt off at work and stress heaps but now have taken a back seat and realised it not worth my health!
I hope you get some answers soon I know how stressed out you must be seeing your daughter go thru this, my mum was only telling me this morning that my poor dad was worried last night and saying its not fair, I think he is struggling seeing me so sick and not the happy vibrant person I normally am... but thats life and we have to make the most of the hand we are dealt.
Keep us up to date with how your daughter is going and any results she gets.

 

[pewpewlasers]

Welcome! I don't know anything about the heart unfortunately but as Jettalady said, "everytime something bad erupts, it seems to be Crohn's related."
It really does seem to be that way.

 

[imisspopcorn]

Welcome Bindi's mum

I hope you two will get some answers and relief from this disease. I googled Crohn's disease and inflammation of the aorta, because I was curious as to how common that problem is. There were quite a few research articles and cases noted...I learn something new about this disease everyday.

Try to look at it as a good thing, that they found the aorta problem now. Hopefully it will be something that is very treatable. I hope the doctors can get everything sorted out quickly for her. She is very fortunate to have you for a mom. Please keep us posted. Good luck to the both of you.

 

[bindi's mum]

thankyou all for your concern and well wishs,i too googled the aorta and crohns and found a few very rare cases.the gi rang yesterday and said he didnt think they were related[i felt like telling him to google] he wants to hold off starting the humira until we see the vascular surgeon on monday.but my gp says the treatmeant for aortitis is the same as crohns.so monday cant come soon enough.will let you know the outcome thanks karen[bindi's mum]