16 y/o daughter newly diagnosed with Crohn's

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Lisamumofmeg

Lisamumofmeg

Joined
Feb 14, 2014
Messages
28
Hello Everyone. I'm new here my Daughter (16yr) was diagnosed last Thursday (6th Feb) and has be started on Modulen. unfortunately my mother died 35 years ago due to crohn's complications, this had made this already emotional time even more emotional. My daughter is terrified the same will happen to her. I just need some friendly advice. And encouraging words. I hope everyone else's children are doing well.

P.S Hope I'm doing this right. I've never used a forum before :)
 
Welcome Lisamumofmeg!
:welcome:
Sorry to hear about your mother. It must be so scary for you. I will say that medicines have improved by leaps and bounds from 35 years ago. My husband was dx'd over 20 years ago and the medicine from even that time has greatly improved. My husband was in and out of the hospital numerous times when first diagnosed but has been in pretty solid remission for the last 12-13 years.
There are a lot more studies done out there figuring things out so when our son was dx'd nearly 4 years ago he was started on a medicine which brought the disease under control fairly well in that regard he has not ever had a hospital stay (throw salt, knock on wood and all the other good luck charms).
So many people are doing well and just enjoying life. One thing to remember about this forum is many come here when they are doing poorly as when they are feeling well they tend to go off and live their life.
Please feel free to start your own thread and tell us about your daughter, what meds she is currently on, what you've tried, etc.
This is a really great group of parents who offer tremendous amounts of support and it becomes like a little family. I worry about all these kids when they are having problems and cheer just as much for all their accomplishments.
Have a poke around there is a lot of information and it can be overwhelming. If you have specific questions be sure to ask them and we can either point you in the right direction or just give you a straight answer.
Look forward to hearing more from you.
 
Thank you so much jmrogers4 for your encouraging words. It really means a lot! Everything I read about Crohn's terrifies me a little bit more, but hearing how well your son and husband are doing gives me hope. Although my mother had crohns I have little or no experience or knowledge of the disease other than its name. I was only 3 when my mother passed away so I have no memories of her battle with the disease. Thanks again for your support it is much needed and very appreciated. x
 
Ditto to all Jacqui said. :)

There are so many new tests and treatment that not only can crohns can be brought under control with the new meds but problems can be found so much sooner which, hopefully, allows recovery/remission that much earlier.

My son was 16 when diagnosed and his treatment was similar to your daughters. He didn't use modulen, his formula was tolerex. He did six weeks of the formula only and then continued with the formula on a supplemental basis for the next two years. It immediately took him into clinical remission (no outward symptoms), however, some inflammation continued for the two years and remicade was eventually added. But, throughout this time, he has done very well, with only small signs of crohns.

Also, as Jacqui suggested, do start your own thread in the parents section and introduce yourself and your daughter's story. More likely that all the parents will see you and will be able to offer their support and suggestions. It really is a great group to lean on when you need help, advice or support! And an enthusiastic cheering section when things are going well! :D

Welcome to the forum! :D
 
I remember how hard it was to hear the diagnosis, even though I knew it was coming. It must be harder having your previous experience losing a family member. Even though we have a far way to go, we have come so far over the last 40 years. I just met a woman the other day that has had crohn's for 30+ years and was telling me all the things they did to treat her that now they don't even need to do and how hopeful she was for all that do get diagnosed that they have a much better chance for quality of life than ever.

Also not everyone has the same issues with their crohn's. Some achieve remission and have very little complications around the disease, while others aren't as lucky. Realizing she has it now will hopefully get her on the path to remission. As you start to read hear you will see how similar & how different many of our stories are. Fell free to share your fears and worries & victories. We are all here for support, and everyone is great!
 
Hi Lisa and :welcome:

In case you haven’t already seen the notification I have sent you a PM about why I moved your post and responses here. :)

I am so very sorry to hear about your Mum and your beautiful lass. :ghug:

My own daughter very nearly died of this disease but she was undiagnosed at the time and I truly believe that in this day and age when you have a diagnosis, and are closely monitored and stay vigilant, that death is a very, very rare thing indeed. I can surely see though why your daughter is terrified of what happened to your Mum happening to her, bless her. :heart:

Tess and Jacqui have given wonderful advice and links so just one question, what has been discussed regarding medication once the EEN stops?

I have two children with Ileal Crohn’s and following surgery both have been in remission for extended periods of time, my daughter for 7.5 years and my son 3 years. They have both just finished their undergraduate degrees and my daughter is starting her Masters this year and my son his Honours year. So it certainly can and does get better mum! :) I know it is damned hard to see the light at the end of the tunnel just know but it is there and it will get bigger and and it will get brighter. :hug:

I hope your daughter responds well to the EEN. Good luck and welcome aboard!

Dusty. xxx
 
Hey SupportiveMom,

Sorry you must have been posting when I created the new thread, so have moved your post here.

Dusty. :)
 
Hi Lisa - welcome although I am sorry you have had a reason to find us. Ditto to what Jacqui and Tesscorm have said. Have a read of the success stories they really are uplifting. My daughter was dx's at 12 (now 14) and after about 6 months of figuring out what worked for her she has been in remission for a year and a half. She hasn't missed a day of school sue to Crohns and keeps up an active life as a competitive runner and swimmer.

Dusty I think touched on this but I will also...EEN is very good at helping get our kids into remission. Even better than steroids in some instances as it also helps with mucosal healing. However, they have found it really only works while you are doing it. Once you introduce food it is only a matter of time before symptoms start to return. The amount of time varies by patient. For some it could be 3 weeks, some 3 months and some up to a year. However, no amount of simmering inflammation is good and it could take time before the inflammation is recognized. For this reason, most docs like to start a maintenance med that will pick up where EEN leaves off. Some of these drugs can take up to 3 months to get to therapeutic levels so docs like to introduce them as the patient starts EEN. You are very early in the diagnosis so it could be your doc is waiting to see if EEN is going to work, compliance wise before making this decision.

Have a poke around in the EEN threads and let us know if you have any questions.
 
Welcome to the forum, Lisa! So sorry to hear about your daughter's recent dx. Sorry too, to hear that your mom passed away from complications of CD. It is a terrible disease, but I am sure there have been huge strides in treatment and such over the last few decades.

My 9 yo son was dx last yr. It took some months, but we are confident he is in remission now. I hope your daughter starts feeling better soon. The folks on this forum have been a wonderful support and a wealth of information to me, and I'm sure you will find the same. Take care!
 
Hi Lisa,
Welcome, sorry you had to be hear but glad you found us. You have already been given some great advice. I suggest going over to the treatment section and begin by reading about the different treatments available so you will know what is available and what to expect. Please keep us posted and let us know how we can help!
 
Hi and welcome. I can't imagine how scary this must be when your mother had it. I had never even heard of Crohns when my son was diagnosed. However this forum has been fantastic with so much support and information.
My son went straight onto Modulen after diagnosis. He hated the taste so had to have the NG tube for 8 weeks, not great but less stressful for him. No one at high school made fun of him and he didn't seem bothered. It is really worth persevering!! By the end of the 8 weeks my son was symptom free for a few months - he was a mild case though. He is now on Mercaptopurine as a maintenance med and doing quite well apart from tiredness.
I hope things go well.
 
Thank you everyone for your support. Its much needed. Megan is currently on day 7 of Modulen. She is doing pretty well all things considered. She is obviously complaining about wanting food, but not excessively and I think we're lucky as she is old enough to understand the benefits. I can't imagine how hard it must be with a younger child, when they are unable to rationalise it.

Just before her diagnosis she got offered a job and McDonalds and is going for her induction day on Wednesday. I'm worried this is a bad idea as there is so much temptation, and it'll be unbearable for her. She is adamant that she going to try though (so proud of her toughness) Some days I think she's doing better than I am :)

I Feel like I'm grieving for the life she should have had, un complicated and WELL one. She amazes me. I think its all just going to take a while to sink in.
 
Lisa, I know exactly how you feel when you say you feel like your grieving for the life she should have had... without health issues. I have felt the same so many times. One way I look at it, and it's probably just a coping mechanism, is that every family has something that must be dealt with. If it's not physical health issues, it would be mental health issues, or learning problems, or behavioural ones. Again, I probably just do this to make myself feel better, but maybe it will help you too. And it will get better, once treatment starts making a difference and she starts feeling better. Thinking of you!
 

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