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Crohn's Disease Forum » Your Story » I've had UC for 25 yrs, daughter recently diagnosed with Crohn's


02-04-2017, 07:06 AM   #1
Oz lady
 
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I've had UC for 25 yrs, daughter recently diagnosed with Crohn's

I have had symptoms of UC for 25 yrs but it took years to get a diagnosis. At the time I was living in the UK and it frustrating not knowing what was going on. Eventually I was given a sigmoidoscopy and told I had UC which showed 5cm of disease. Over the years I had 6-12 month check ups (with a nurse) with blood tests and was put on Asacol tabs and occasionally foam but no other care or checks. I just plodded along during flares, etc and some how managed to cope, although at times it was really hard.

I moved to Australia 6 yrs ago and my doctor refered me for a colonoscopy through Medicare. It took 1 year to come through. I then went for private care (through my husband's company health insurance) and saw the doctor who treated me in the public system. Eventhough appointments were faster, he was quite dismissive to some of my symptoms. Turns out he should have investigated. He moved and I was referred to another specialist. She is my angel.

It has taken a long time but for the first time, I feel like I am listened to and also getting the correct care. My large intestine is diseased and I have GORD but my doctor is keeping a close eye on me. At present I take 3g pentasa daily and 1/2 dose of Azathioprine (full dose once my liver improves)

My 18 yr old daughter was having occasional abdominal pain but no bowel problems. I took her to my doctor thinking she may have reflux ( like me). After the doctor checked her blood tests, she was admitted for a colonoscopy and gastroscopy within 5 days. My daughter was diagnosed with Crohn's 6 days ago with 7cm disease at the beginning of her large intestine. We are waiting on an MRI. She is still processing it all but I am devastated. I cried the rest of that day knowing what she may have ahead of her and that it has come from me. She has been put on 40mg prednisolone and then will be on azathioprine. The only positive is she has a great doctor who will give her the best treatment. Follow up appointment in 10 days.

It may/will be a long and bumpy road ahead but we will get through it.

This has been the first time I have written my story down so thanks for reading.

My
02-04-2017, 12:18 PM   #2
ronroush7
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Hi. I am sorry for what both you and your daughter have been through. Glad you both have a great doctor. Sending support and prayers.
02-04-2017, 01:40 PM   #3
cmack
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OZ lady,

It isn't your fault that your Daughter was unlucky enough to have this disease. I think you actually helped her by getting her treatment sooner rather than later. Don't take it out on yourself, I'm sure you wouldn't wish it upon your worst enemy.

wishing the best for your family,

cmack
02-04-2017, 08:21 PM   #4
Oz lady
 
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Thanksfor the replies.

Deep down, I know that there was nothing I could have done to prevent D from having this disease but it is still hard coming to terms with.

Hopefully, we have caught her quick as she has only been getting pain since October 16 (increased stress from college, death, friends, etc) but had an eye infection 1 month previous which the doctor thinks could have been the start.
02-04-2017, 09:05 PM   #5
cmack
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[QUOTE=Oz lady;964322]Thanksfor the replies.

Deep down, I know that there was nothing I could have done to prevent D from having this disease but it is still hard coming to terms with.

Hopefully, we have caught her quick as she has only been getting pain since October 16 (increased stress from college, death, friends, etc) but had an eye infection 1 month previous which the doctor thinks could have been the start.[/QUOTE


A few years ago, several now, I had Iritis. Did she as well? I had bad things happen after that too.




Sending prayers,



cmack
02-04-2017, 09:40 PM   #6
Oz lady
 
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All I remember was that the GP said it wasn't conjunctivitis (will check with GP) and she was given drops which cleared it up but it looks like it may have been iritis. Gastro doc says that it would be a Opthalmologist who could diagnose this.
02-05-2017, 08:45 AM   #7
my little penguin
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We have a parents group here
http://www.crohnsforum.com/forumdisplay.php?f=49

There are a lot of parents of kids who are almost adult (late teens and early 30's) so feel free to join in
Your kids are always your kids

Glad you are getting proper treatment /screening and they found the issue for your dd
Ds was dx at age 7 and now is 13
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02-06-2017, 12:00 PM   #8
Msmith
 
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I have also had crohns for 25 years. And I have a daughter that is 28 and every time she has stomach issues I cringe because I am afraid of the same thing. I will be praying for you and your daughter. It is a hard road but we somehow make it through! Having you to talk to about will help your daughter tremendously! It's hard when no one understands what you are going through. Just keep her talking to you about it and let her know that it's something we deal with everyday but she will get through it. Especially with her mom by her side! Prayers sent your way!
02-06-2017, 12:35 PM   #9
ronroush7
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I have had Crohns for twenty seven years. My son has some issues with his stomach. I am not as concerned as before but wondered if he might have IBD. He has not gone to the doctor yet.
02-06-2017, 03:29 PM   #10
eleanor_rigby
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I'm 28 years old with Crohn's that I've had since a teenager and my dad has UC. I'm sure he could have literally wrote your post. I just want to reassure you that Crohn's hasn't stopped me doing anything. I have been with my boyfriend 6 years, I have travelled the world for months at a time, I have always worked full-time, I studied for my bachelors, masters and I am currently studying for my PhD. Yes there are bad days where I experience pain, but there are so many health issues out there that people are fighting that I could have also easily ended up with. I understand this must be awful for you but remember you didn't ask for this and it is not something you could have prevented. You will be a great source of support and knowledge for your daughter that I wish I had as although my dad has UC his symptoms are completely different and very mild. I don't think he even knew it was a type of IBD, he knows very little about it. It can feel isolating knowing no one understands.
There are new treatments coming out all the time and long periods of remission are possible.
02-06-2017, 07:51 PM   #11
cmack
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I'm 28 years old with Crohn's that I've had since a teenager and my dad has UC. I'm sure he could have literally wrote your post. I just want to reassure you that Crohn's hasn't stopped me doing anything. I have been with my boyfriend 6 years, I have travelled the world for months at a time, I have always worked full-time, I studied for my bachelors, masters and I am currently studying for my PhD. Yes there are bad days where I experience pain, but there are so many health issues out there that people are fighting that I could have also easily ended up with. I understand this must be awful for you but remember you didn't ask for this and it is not something you could have prevented. You will be a great source of support and knowledge for your daughter that I wish I had as although my dad has UC his symptoms are completely different and very mild. I don't think he even knew it was a type of IBD, he knows very little about it. It can feel isolating knowing no one understands.
There are new treatments coming out all the time and long periods of remission are possible.
Elanor,

You hit the nail right on the head. Good for you, I appreciate your kindness and couldn't agree more.
02-06-2017, 07:53 PM   #12
cmack
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OZ lady,

I hope things are going in the right direction for you and your family. Hang in there.

All the best,

cmack
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