My daughter has crohns

[karlea]

my daughter has crohns

I am writing this because my daughter has crohns disease and also slightly special needs I say slightly because she has trouble retaining information and acts quite young for her age but in other areas she is ok. It has been hard for her because she has perianal crohns and also an ileostomy which she has had for 3 years. She was diagnosed when she was 19 because she had abscesses and fistulas and a seton tube which drains the fistulas to prevent recurance of the abscesses.
She got the ileostomy when she was 22 which is hard for her also as it leaks quite a lot and this is making her scared to go out without me.
I feel for her and take on a lot of the disease to take the stress of her. I try to let her go it alone as family complain I do to much for her, but as she finds retaining information hard I have to go to the hospital with her all the time. I would like to let go but I don,t want her to get stressed which happens and the disease flares up as it has now in her small bowel, and she is now going to have further tests to see how severe it is and what treatment they can give her.
I am worried about this now and I am trying not to let her see that I am worried because then she will get scared.
I am pleased to have found this site to air my worries

 

[Crohn's 35]

:welcome: Karlea, I am so sorry your daughter is ill. It is difficult to see your child ill and with this disease it is worse. It isnt always bad, she just has to find what the best med is for her.

My opinion is to avoid Prednisone, only in emergency cases, it does more harm than good long term. Remicade is a scary drug for some but it may help her, or even Humira. Just know that you are not alone, many people from the UK and parents alike.

Take care, one day at a time! Hugs

 

[rygon]

Hi im on infliximab (remicade) aza and mezavant (stronger version of penatasa) and find it really helps me, I was in so much pain until istarted infliximab. Not quite perfect at the moment but defo getting there.

I also find diet plays a big part, normal healthy things like onions, corn, wholemeal etc plays havoc with me. It may be worth getting her to keep a diary of how she feels, what shes eaten and drank and see if theres any correlation.

Also if she has an iphone or any phone with android theres a great app called "GI Monitor" which allows you to input what youve eaten, how may times youve gone to the toilet and how they were, plu what meds you are on and when you need to order some more. Its a bit time consuming writing using a phone, but if i didnt i would totally forget all that info

 

[kyi]

sorry to hear that, your doing the right thing for your daughter if she needs help, then your the right person for the job, as horrible as it is to see our kids ill. Im 23 with a young son, im also scared cause hes 18month old and i believe hes showing signs of it. I leak some times, i just bring extra clothes wipes and spray out with me on every outing, not much help to the situation, i like to think im in charge of my own life, dont let it ruin your happyness (yours or your daughters) or control you, she will learn with your help.easier said then done i know, like Pen said one day at a time. Your doing a fab job and dont let anyone steer you differently, big hugs hope you get the answers your both looking for xx

 

[kyi]

and thanks rygon that app is one for me to download once the blackberry network is up and going again grrr lol

 

[xJillx]

Hi Karlea! I am sorry about your daughter struggles with Crohn's. I can't blame you for wanting to do "too much" for your daughter; I really can't imagine any parent holding that against you. And I bet your daughter really appreciates it. It means so much to have supportive family and friends.

As far as her leaking stoma, I suggest checking out this thread. I think it may be helpful as it discusses the different products people have success with.

I wish your daughter (and you) good luck with her upcoming tests.

 

[Carolyn P]

Hi Karlea,
I've just joined this forum and saw that your daughter has Crohns. My daughter's 23 and was diagnosed earlier this year and I feel so guilty because I have Crohns and blame myself for passing it on to her. Before I had children I had asked if it was hereditary but was told it wasn't, all these years later we now know different. I think you're a wonderful support to her and don't feel bad when other family members think you do too much for her. My daughter had an appointment today and I went with her, she does'nt have the extra complication of having special needs but she was so grateful to me for going with her, it's just what Mum's do is'nt it? When other family members need us we'll be there for them too.
Keep Strong
Carolyn P

 

[Jin]

Hey Karlea!

I'm sorry your daughter is ill. You're doing the best thing for her, though. Which is helping her through a tough time. Like mentioned prior, trying which meds is right for her is the best bet. Being supportive of her condition is the best as anyone going through a hard time. You're doing what mothers do best, and that's to provide comfort to their children
My mom is always accompanying me to the hospital/doctors. I appreciate more than she will ever know!

Stay strong and keep positive. There's many on here that will help you and your daughter through this journey.

Take care!

 

[karlea]

thankyou

Thankyou for all your support it makes me sad to read these stories and how this disease affects peoples lives.
My daughter had hospital the other day and needs a camera through her stoma to see how far the desease is in her small bowel and then see what medication she will go on. They said infliximab as she has had it before but became ineffective which they said was unfortunate as you can stay on this for years. My daughter liked this before as it was a one of infusion and then she didn,t have to remember to take her medication whilst I was at work.
She is seeing the surgeons today about her seton which is causing irritation, but after reading other peoples stories this seems the norm so they will probably leave alone and I will just help with cleaning the area. (she has had this for about 3 years)
Thankyou again it is so nice to write about what she is going through and reading other peoples stories xx

 

[DustyKat]

Hi karlea and :welcome:

I'm so sorry to hear about your daughter Mum...:hug:

I know it's hard when family question and remark about the care we give our children but you know your daughter better than anyone whether it be a doctor, a friend or a family member. They may mean well but she is your baby and if she want's you there and you want be there then that's as it should be.

I so hope that things settle for her very soon and she can find some lasting relief. Please keep us posted on how things go.

:hang: Mum, you are doing a fab job!

Dusty. xxx