Hi, this is my first post to the forum. My 7 yo daughter was diagnosed with crohns earlier this year. Had a perforated bowel during the colonoscopy followed by laparoscopy to repair it. Tear didn't heal, had more surgery nd ow has an ileostomy. Still in hospital. Been nearly 3 months in hospital now. Totally drained!!
7 y/o daughter diagnosed with Crohn's
- Thread starter Crohnmum
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CrohnMum - Welcome - sorry about your daughter 
( So miserable. We spent 6 weeks in the hospital when my son was first diagnosed. Though long and time, better in than out with problems. Hope you get out soon!!
( So miserable. We spent 6 weeks in the hospital when my son was first diagnosed. Though long and time, better in than out with problems. Hope you get out soon!!
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Thank you for the support and thank you this forum. I don't feel so alone in this battle now. My daughter had a barium X-ray and a ct scan this week which has shown that she still has leaks inside. They coudn't tell where though
She has been spiking fevers for the past week spite being on vancomycin and gentamicin. Surgeons suspect further surgery may be required(
Stoma working well though. We are to have reconnection of the bowel later in the year anyway. She is slowly gaining weight and is on both enterel feeds as well as normal foods.
The hardest part is not knowing where the leaks are from. She currently has three sites now her tummy with fluid/poo coming out and it's very scary for her. One is the stoma, one the drain site from then previous op and the middle is where her stitches were that opened up as she was so malnourished and not able to heal. Fingers crossed all will heal quick and there is a long shot that the small hole where the leak is may heal too.
@ Catherine - we are at the children's. Great staff here. Haven't met anyone else on the wards with crohns though.
She has been spiking fevers for the past week spite being on vancomycin and gentamicin. Surgeons suspect further surgery may be required
(Stoma working well though. We are to have reconnection of the bowel later in the year anyway. She is slowly gaining weight and is on both enterel feeds as well as normal foods.
The hardest part is not knowing where the leaks are from. She currently has three sites now her tummy with fluid/poo coming out and it's very scary for her. One is the stoma, one the drain site from then previous op and the middle is where her stitches were that opened up as she was so malnourished and not able to heal. Fingers crossed all will heal quick and there is a long shot that the small hole where the leak is may heal too.
@ Catherine - we are at the children's. Great staff here. Haven't met anyone else on the wards with crohns though.
Catherine
Moderator
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crohn'smum I am going to call dusty to help set up a thread of your own. Have you found the victoria support groups? Could bring sarah to see her? If you think that would help. We are still very new to crohn they were dx around the same time. Are you a melbourne family?
No Catherine. Haven't joined anything yet. I have looked them up and do intend to do so though. We are from melbourne but have been here at the children's since January this year. Would love to see Sarah. Perhaps once this acute phase is over? We are from the northern suburbs. Thank you for being in touch
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:bigwave: to the group.
Very new here as well.
Glad you joined in.
Everyone here has been so supported and answered all the questioned anyone has asked.
:soledance:
Very new here as well.
Glad you joined in.
Everyone here has been so supported and answered all the questioned anyone has asked.
:soledance:
David
Co-Founder
Hi there and welcome to the forum I'm so sorry to hear about your little one That must be unbearable. My heart goes out to you, her, and your entire family.
We're here for you.
*hugs*
I'm so sorry to hear about your little one That must be unbearable. My heart goes out to you, her, and your entire family.We're here for you.
*hugs*
DustyKat
Super Moderator
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Hi Crohnmum and :welcome:
Oh my goodness! What are difficult and heart breaking time for your little girl, you and your family...:hug:...I was drained after spending 4 weeks in hospital with my son so I can only begin to imagine what you are feeling!
My daughter had a ruptured bowel but not through a colonoscopy and she was older than your little one. Luckily she had no post op complications. I do wish more than anything that things turn around for you very, very soon. Hopefully as her nutrition improves and the medications kick in so will her physical issues resolve.
What other medications is your daughter on aside from the antibiotics?
Good luck hun and welcome aboard!
Dusty. xxx
PS. Thanks for the tag Catherine!
Oh my goodness! What are difficult and heart breaking time for your little girl, you and your family...:hug:...I was drained after spending 4 weeks in hospital with my son so I can only begin to imagine what you are feeling!
My daughter had a ruptured bowel but not through a colonoscopy and she was older than your little one. Luckily she had no post op complications. I do wish more than anything that things turn around for you very, very soon. Hopefully as her nutrition improves and the medications kick in so will her physical issues resolve.
What other medications is your daughter on aside from the antibiotics?
Good luck hun and welcome aboard!
Dusty. xxx
PS. Thanks for the tag Catherine!
Welcome! Glad you found this forum. I think you will find lots of wonderful information and support here.
Sorry your daughter is going through so much right now. Hoping for better days ahead!
Sorry your daughter is going through so much right now. Hoping for better days ahead!
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Hi
Im sorry to hear your daugther is going through this, I hope the doctors and surgeons can get her back to normal health.
My mum and I lost a friend last year who was 54 years old who had a perforated bowel and it continued to leak she was sick with other health probs before hand. Im sure this wont be the case for your daugther.
I will keep your daugther in my prayers
Im sorry to hear your daugther is going through this, I hope the doctors and surgeons can get her back to normal health.
My mum and I lost a friend last year who was 54 years old who had a perforated bowel and it continued to leak she was sick with other health probs before hand. Im sure this wont be the case for your daugther.
I will keep your daugther in my prayers
Hi everyone, thank you all for your support. My daughter had surgery last night and has had 20cm of her small bowel removed. The surgeon and gastro specialist are confident on her recovery this time round. There was no leak inside but it was from the actual stoma itself that fecal material was going back in her abdominal cavity. It may have been due to the crohn's in the part of the bowel that had been cut to make the stoma.
All good now. We may be started on mesalazine but for now it's just TPN and then enteral feeds. Another few weeks in hospital!!!
All good now. We may be started on mesalazine but for now it's just TPN and then enteral feeds. Another few weeks in hospital!!!
David
Co-Founder
Here's to a speedy recovery for her
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This will sound weird but I WISH for surgery for Violet. Her disease is so confined I just want them to take the area out.
I hope this is a permanent fix for your girl; many hugs :ghug:
I hope this is a permanent fix for your girl; many hugs :ghug:
