Hi my name is Paula. My daughter Jessie who is 19 has been diagnosed in the last year with crohns/ulcerative collitus. Jess is a beautiful young woman who is full of life, intelligent and an amazing daughter and friend. My heart is just broken to see her go through this disease in which it is not under control yet. Jess is still in the process of getting the medication sorted to put her condition into remission. She has many many tough days but has kept smiling through the better days. I am incrediably frustrated watching her go through this and I wish I could trade places in a heartbeat. I would love any parent/friend or family member of someone who is going through this illness to please give me suggestions on how I can support my beautiful daughter. How do you keep the hope going for your loved one?
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New mum to this
- Thread starter jessiesmum
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Hello Paula and :welcome: sending :ghug: You definitely come to the right place there is lot's of support and advice on here. For me and my hubby our faith is was gives us hope/strength to deal with this disease.
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Hi Jessie's Mum. I feel every word of post and your pain. My Daughter has recently been diagnosed, she is 16 and is struggling to come to terms with what it means to have a chronic disease. She still smiles and when she does it lights up her beautiful face. I try to keep things light, I always talk about things she can do and not what she can't do, currently she can't eat as she is on modulen and we're only on day 4 of 57. We try to keep busy make plans for things to do, watch movies, go for walks and even housework. Anything to take her mind off of eating. I am also heartbroken, but we are trying to focus on the positive and plan to train to run/walk a 10k run to raise money for IBD ( obviously is she is not well enough, she'll train me lol ) . I felt it would give her something to work towards. Keep positive. x
DustyKat
Super Moderator
Hi jessiesmum and :welcome:
I am so, so sorry to hear about your daughter
and know exactly of the heartbreak and despair you are feeling. :ghug:
I am just across the ditch from you, there aren’t loads and loads of us Aussies and Kiwis on here but enough to give the Yanks and Poms a run for their money! :lol: Just joking guys!!! :ack:
Please do come and join us in the Parents of kids with IBD forum…
http://www.crohnsforum.com/forumdisplay.php?f=49
…it is a fab place…loads of friendly people, wonderful advice and knowledge and even laughs and lighter moments cause lord knows we need them sometimes! And above all else we would love to have you there. :heart:
I think the one thing, aside from this forum, that has kept me going is to become the best possible advocate I can for my kids. I have two children and they both have Crohn’s. Reading, reading and reading some more, questioning, questioning and questioning some more has given me the knowledge and confidence to tackle this disease head on. Having the power to do that goes a long way to feeling less helpless when the very thing you love more in life than anything else is suffering and you know there’s not a damned you can do to take the disease away from them. Nothing will ever fully take the heartache away but over time as your daughter responds to treatment and becomes well again the light and laughter returns and Crohn’s no longer overwhelms your thoughts 24/7.
Where is your daughter’s Crohn’s located and what treatment is she on?
:hang:
Dusty. xxx
I am so, so sorry to hear about your daughter
and know exactly of the heartbreak and despair you are feeling. :ghug: I am just across the ditch from you, there aren’t loads and loads of us Aussies and Kiwis on here but enough to give the Yanks and Poms a run for their money! :lol: Just joking guys!!! :ack:
Please do come and join us in the Parents of kids with IBD forum…
http://www.crohnsforum.com/forumdisplay.php?f=49
…it is a fab place…loads of friendly people, wonderful advice and knowledge and even laughs and lighter moments cause lord knows we need them sometimes! And above all else we would love to have you there. :heart:
I think the one thing, aside from this forum, that has kept me going is to become the best possible advocate I can for my kids. I have two children and they both have Crohn’s. Reading, reading and reading some more, questioning, questioning and questioning some more has given me the knowledge and confidence to tackle this disease head on. Having the power to do that goes a long way to feeling less helpless when the very thing you love more in life than anything else is suffering and you know there’s not a damned you can do to take the disease away from them. Nothing will ever fully take the heartache away but over time as your daughter responds to treatment and becomes well again the light and laughter returns and Crohn’s no longer overwhelms your thoughts 24/7.
Where is your daughter’s Crohn’s located and what treatment is she on?
:hang:
Dusty. xxx
It truly is heartbreaking at the beginning and the fear of the unknown can be overwhelming. But, once your daughter has found a treatment that works for her and she is in remission, it truly does become easier.
My son was admitted for a week when he was diagnosed and, in all honesty, it was often his strength and his positive attitude that gave me strength.
As Dusty said, I've also felt that learning all that I can about crohns has helped me come to terms with my son's diagnosis and has helped me be the best advocate that I can be for him. I know I felt helpless when given the diagnosis but through knowledge, I do feel I have regained some control over this and can help my son stay as healthy as possible.
Please do look through the parents' section - there are many wonderful parents there and there are a number with older children as well.
:ghug:
My son was admitted for a week when he was diagnosed and, in all honesty, it was often his strength and his positive attitude that gave me strength.
As Dusty said, I've also felt that learning all that I can about crohns has helped me come to terms with my son's diagnosis and has helped me be the best advocate that I can be for him. I know I felt helpless when given the diagnosis but through knowledge, I do feel I have regained some control over this and can help my son stay as healthy as possible.
Please do look through the parents' section - there are many wonderful parents there and there are a number with older children as well.
:ghug:
Thank you to all the beautiful responses I have had from so many lovely parents. To know that I am not alone in my thoughts is very reassuring. It gives me hope and to know that what I am doing is right. My heart goes out to each and everyone who is going or has gone through this. Thanks xxx