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Discussion Starter #1 (Edited)
I know I don't post very often, but the last few days have been really hard for me. My beautiful daughter is very sick, she has severe ulcerative colitis and is just a shell of her former self. She was diagnosed 6 years ago after her first child was born, before that she was perfectly healthy. She went into remission using a drug called Remicade and was doing well and then she got pregnant with her second child and was sick through the whole pregnancy and now he's a year old and she is still very sick. We went to Cedar Siani on Tuesday of this week as she is going to start a clinical trial for a new drug and if that doesn't work she will need to have her colon removed.

She is just devastated, she cries every day, it's so diffcult for her to even function. She goes to the bathroom about 20 times a day and she's just skin and bones. She told me yesterday that if she doesn't get better she doesn't know how she can continue to live like she is. She has the best Dr's and they are doing the very best they can for her, she started to see a therapist yesterday so maybe she can help her with some coping skills, and grief and loss. She has a great husband and everyone is doing the best they can to help her, i just feel so helpless and sad for her. Please everyone, Pray that this clinical trial will help her and she will go into remission. Thanks for listening.
 

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Oh Tanna. I am so sad for you. What an awful thing to go through. For your daughter as well as her husband your whole family! I hope that the therapist will help along with the new medication. I will be thinking of her and wishing her all the best.

(( hugs ))
Tracy
 

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I understand your sadness Hon.
My older son Kelley has been going thru the same thing.
Please watch her for signs of suicide.
I will pray for you and her and that she is led
to the right doctor who can help her.
Its terrible when we cant help our children.
You are not alone.
 

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I'm so sorry, Tanna. Your poor daughter, that's so much to go through. It must be so hard on everyone. :( I'll be keeping her in my thoughts. I hope the clinical trial goes well for her. Please keep us posted. x
 

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I'm very sorry to hear about your daughter. Chronic illness can definitely take a toll. I know a man who had to have a colostomy (I believe he had Chron's disease) but he was able to have it reversed a year or two later. Might this be a possibility for her?
And I know the surgery is a worst case scenario but she might feel some relief from not having to go to the bathroom 20x per day. Going to therapy is probably the best thing she can do for herself right now. Are there support groups for UC--maybe in your local area? I'm sure it would help her tremendously to know that there are others who are going through what she is and how they deal with it.

Interesting to me that she developed UC after the birth of her first child. Having my first and only child left me with IBS-D. I wonder how many other women have been affected like this from childbirth.

I sure hope the treatment works and things turn around for her ASAP.
 

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Discussion Starter #7
I'm very sorry to hear about your daughter. Chronic illness can definitely take a toll. I know a man who had to have a colostomy (I believe he had Chron's disease) but he was able to have it reversed a year or two later. Might this be a possibility for her?
And I know the surgery is a worst case scenario but she might feel some relief from not having to go to the bathroom 20x per day. Going to therapy is probably the best thing she can do for herself right now. Are there support groups for UC--maybe in your local area? I'm sure it would help her tremendously to know that there are others who are going through what she is and how they deal with it.

Interesting to me that she developed UC after the birth of her first child. Having my first and only child left me with IBS-D. I wonder how many other women have been affected like this from childbirth.

I sure hope the treatment works and things turn around for her ASAP.
She has been in denial for a long time and is resistant to going to a support group, both her Dr and I have been trying to talk her into to going. According to her Dr it's common for women to develop UC during pregnancy or more common than you would think.
 

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Sorry to hear about your daughter I was also going to suggest a support group, if she won't go maybe you can arrange to have them come to her sort of like an intervention?
 

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What is her diet like? My hubby had issues with chronic diarrhea/colitis (one Dr thought he had IBS), his Dr put him on a Grain Free/Sugar Free (Anti-inflammation) diet, and while he has bouts of diarrhea (mostly due to the drug Glucophage) they are no where near what he was having before.

I'm sorry your daughter is having to go through this, how frustrating for her.
 

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She has been in denial for a long time and is resistant to going to a support group, both her Dr and I have been trying to talk her into to going. According to her Dr it's common for women to develop UC during pregnancy or more common than you would think.
I don't see how you could be in denial if you're going to the bathroom 20x per day but whatever...maybe an online support group? Maybe she'd be willing to go that far for now. It would at least be a start. :thumbright:

I definitely feel your pain too. There isn't a much worse feeling than having to stand by and watch your child suffer and know that there isn't anything you can do about it. I'm sorry for you.
 

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I'm so sorry! As a Mom myself I know how hard it is to watch a child hurting, and feel like you can't do anything to help. You'll be in my thoughts.
 

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My father had this at the same time he had to have open heart surgery. It was terrible...he never recovered because of complications from the heart surgery, but having the problem at the same time with his colon was so miserable for him. I know what your daughter is going through...
Sending healing thoughts and prayers that she will get better soon...
 

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Tanna I feel so bad for your daughter. I sent you a PM.
 

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My heart goes out to you and your family who must all be suffering so much. I can't offer any advise but will be praying for her recovery x x x
 

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I'm so sorry to hear about your daughter. It's so hard when your child is ill. I hope she gets better soon and that you find the strength to be there for her!!

Kat
 

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So sorry to hear this, I hope remission is around the corner.

A friend of mine had colitis which nearly killed him, finally he had to have a colostomy and it gave him back his life. It was a huge adjustment but eventually he was just so happy to feel good.

I hope she will recover without the surgery but if she needs it I hope she can see the positive in it.
 

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Discussion Starter #19
Thank you everyone, for your replies it means alot to me. I'ill keep you posted on her progress, there a 4 other people in the trial and they are all doing well in different degrees of healing. This really needs to work for my daughter she deserves some peace. Thanks again
 

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Poor thing..I sure hope the trials will work out for her. How frustrating for her to feel well for so long only to have a dang relapse. Keep us updated. I'm sure there will be a light at the end of the tunnel:)

Lori
 
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