Mum struggling emotionally

[LilyRose]

Hello,

This is my first post in here. I am really quite anxious.

I have really struggled to find any parent support for parents with a child with crohns. I live in Australia and and there doesn't seem to be anything for me.

I generally don't cope with worry/stress well.

My 5 year old boy was diagnosed with crohns last year. He only has minor problems at the moment. But I worry terribly for the suffering ahead of him.

I would love to hear some supportive words, I know there with be difficulties ahead, but perhaps some comfort from parents who have been learning to cope with this.

Sometimes I think my heart will break - I guess no-one wants their young child to have a life long illness. I keep hoping although the illness is lifelong, that he will have plenty of periods of remission in there and will continue to have fun despite what the crohns throws at him.

I'm trying to find ways to keep positive.

Thank you for your thoughts.

LilyRose

 

[Dexky]

Welcome LilyRose! My son is coming up on 2 years with crohns and I still have those fears you mention. But they no longer define my days(most days) like they did early on. I keep clinging to the hope that due to his and your son's youth, medical advancements will give them a long, pain-free life.

I don't know why, but coming on this forum and reading about and speaking to others facing similar situations has been very therapeutic for me. I hope you find the same thing here!! Nice to meet you

 

[dannysmom]

Hi LilyRose, (pretty name!)
Welcome. I also find forums very helpful. A few years ago, my oldest son had worsening back and other neurological issues and it was a forum that helped me deal with that (and get the right treatment I should add). While Danny does not have an official Crohn's diagnosis, his symptoms match those suffering here and I have received so much support on this forum. I am not sure how much you've read yet, but you can see we are parents of kids of all ages ... and there are moms of younger children like you too. What I do when worry and stress increase, is to focus on just one day at a time ... or even a smaller time interval (hours) if need be.

 

[DustyKat]

Hi LilyRose and :welcome:

I'm glad you found your way here 'cause it is a fab place for info and support.

You will find many kindred spirits here hun, we understand your fears, worries, concerns, heartbreak and the feelings of being overwhelmed that having a child with Crohns brings to your life. We understand that you wish more than anything that you could take this disease away from your child and bear the burden yourself and your constant fears about the future and what it may bring.

Things will settle down, things will never quite be the same but you do and will fall into the new normal and you will find yourself thinking a little less about it each day. I don't know that we will ever not have it as the last thought on our mind as we go of to sleep at night or the very first thing we think of when we wake in the morning but over time you will find yourself spending less time thinking about it and probably surprise yourself in the process! When my daughter was diagnosed 5 years ago I wondered how I would get through with the thought of her having this disease but I did and it did become a background thought. Then my son was diagnosed last December and it all came back with a vengeance and more, how the hell was I going to cope with two kids with Crohns? I am still working my way through it but I am getting there, slowly but surely.

I think over time you find you stress less about the little things, your priorities shift and you focus on the things that really do matter. I take each day as it comes, savour each day my kids are well and in remission and each day they able to achieve this it brings them closer to better treatments, should they need them, and most of all a cure.

Hang in there Mum cause you are doing just fine, what you are feeling is natural and understandable and the future will have many, many positive, fulfilling and lengthy periods of remission in it.

Much love, :heart:
Dusty. xxxxxxxx

 

[Tesscorm]

Hi LilyRose,

You will find lots of support here from parents dealing with the same worries, concerns, frustrations. I have been so grateful to have found this site; the other parents have answered questions for me lessening some worries, have reminded me that my worries are valid and that it's okay to sometimes feel overwhelmed by them! :ghug: Ask questions! - There are so many knowledgeable people on this site, I find that my worries are often alleviated once I have some 'experienced' information!

My son, 17 years old, was diagnosed in May. Luckily, so far, his symptoms have been very manageable but, like you, I so worry about what the future holds! But, as Dexky said, I am confident that advances will be made and new, better treatments will be found. Understanding of Crohn's and treatments have certainly improved over the last 10-15 years so, I believe there's absolutely no reason to think that this will not continue! :sun:

Wishing all the best for your son!

 

[LilyRose]

Thyank you so much for the lovely replies. I have sat here in floods of tears reading the lovely warm words. I don't think I realised what a relief it is to have found some people to share with. I have tried to find support locally but I haven't found anything. And I started to feel very alone. So thank you or the warm welcome.

I noticed how each of you - Dexky, Tesscorn, DustyKat and dannysmom said how helpful it has been to join in this forum, I shall definitely stay involved now I have discoveed the site.

I hope that my fears can, as you say Dexky- no longer define my days. I shall try to stay hopeful for the future, be thankful for what we do have and remember to take one day at a time.

Sometimes I forget to take each day as it comes, and spend hours worrying about the future and imagine terrible suffering for my little boy. But really I know that it is pointless. I think I should stick up a note - just deal with today, and let tomorrow happen tomorrow!

Thank you again.

LilyRose

 

[Dexky]

What's his name Lily? What meds is he on or has been on?

 

[Gwen pippy]

Hi Lilyrose, I just wanted to say that you are doing a great job, I was dx with crohn's at 11, my poor mum thought her world had ended, I am the second of five and the youngest was only a couple of months old, my older sister has asthma since she was a baby and my dx was just another weight on my parents, but they took each day as it came and we are all grown now, I have two children of my own, I had my flares, my times in hospital, my challenges in school and work but I came out with very high marks, got good jobs, got married and have a lovely home of my own. Crohn's should not stop your son's life or yours!!! it has just taken a different course.
I send love and respect to all the parents and I'm here prove to you all that you are doing great job as have my parents.

Love Gwen xxx

 

[Tesscorm]

Thanks Gwen for posting! As much as we all try to keep our worries at bay, they are always lurking... its wonderful to hear a story likes yours! Warmest wishes!!!:rosette2:

 

[LilyRose]

Thank you again for the lovely posts.

It was wonderful to read your post Gwen. I have felt a bit like my world has ended! But it was great to read your story - that although you've had plenty of challenges that you've been able to get on with enjoying life and following your hopes and dreams. That was really inspiring to read.

My little man is just on metronidazole (Flagyl) at the moment plus some supplements - fish oil, multivitamin, and a probiotic powder. He has perianal problems, which don't seem to want to go away. But I am trying now to not dwell on it and focus on the fact he is happy in himself.

Thank you again for your support. I hope in time I will be supporting others.

LilyRose

 

[dannysmom]

I hope in time I will be supporting others.

LilyRose

You already are!

 

[Crohns08]

LilyRose,

I don't know how aggressive your son's condition is, but when I had a milder form of the disease I know the diets helped more then, maybe they could help your son in combination with his flagyl and supplements? Just a thought =] I know some of these medications can be scary, but I would try to go as holistic as you can for as long as it'll work for the little guy.

 

[Brian'sMom]

LilyRose,
Welcome to this forum. It has helped me soooo much. There are so many children battling this disease and since we all have different situations, doctors, etc...I'm able to get lots of good advise here. There's been times- before this forum- that I would worry myself silly about something...because I had no one to ask (and we all know how hard it is to get questions answered outside of our scheduled office appointments), Now I'll post the question here...and in no time there's a wealth of information and advise and support. And when you need that spiritual pick up...that's here too. In a way, its a bunch of people who have never actually met, but need each other, and have become a family!

 

[AZMOM]

Hi Lily Rose - We are glad you are here. But sure sorry, that your son has IBD. You have found yourself some A-1 Worrywarts so you are in the right place. Let us know how we can support you and how he's doing.

Welcome & a BIG hug,

Julie

 

[GloMom]

LilyRose-
I also joined just recently. My son is 13 so a little older, diagnosed in Feb 11 and my 18 year old daughter who was diagnosed with Celiac at 16 we were told today more then likely has Crohns as well. I too worry about their futures, what each day will bring. My son uses humor to cope and we laugh and make jokes but I know when he wants to cuddle he is hurting. Take your cue from your son and take one day at a time in coping. Wishing you support, and times of peace in dealing with his disease. Remember not to let the disease define his character but to let his character define how he copes with the disease!

 

[LilyRose]

Thank you agin for the replies. It is great to have found this forum. I had felt so alone here in Oz - I couldn't find any local support.

I loved your comment GloMom about not lettling the disease defind his character. And i can see my son has a relaxed nd happy nature which I hope will help him deal with the problems that arise.

And I am trying to take things one day at a time, and not waste time imgaging the future when it hasn't happened yet!!

Sorry must dash- have to take kids to school!

LilyRose

 

[kimmidwife]

Hi LillyRose,
My daughter was 11 when she was diagnosed and is now going on 14. It has been a difficult battle for us a lot of ups and downs but she is still the same wonderful person as always. I have had a rough time emotionally dealing with her illness and my getting sick as well. (diagnosed with Fibromyalgia and RSD). we are trying to take it day by day. This summer she had an awesome summer the best since her diagnosis. Then she came home from camp and got very sick again. Her meds seem to have stopped working. Now she has pneumonia. She has already missed the beginning of school. She was only there for 2 days. I feel like we are starting everything from the beginning again!

 

[LilyRose]

I am so sorry kimmidwife that your lovely daughter is unwell again. I can imagine the shock when she has had such a great summer to then come down with pneumonia and feeling unwell and not at school.

I think the rollercoster would be the hardest thing, as you start to feel relaxed that everything is OK, and then it changes.

I hope you and your daughter are in good hands with a great medical team. I know I keep saying to myself 'Deal with one day at a time'.

Take good care,
LilyRose

 

[kimmidwife]

Thanks

Thanks For your support LillyZRose.We are going through a tough time right now.

 

[vness1208]

welcome lilyrose, just know that you are not alone. I felt the same way when my daughter was diagnosed, I thought the world was going to end. as parents, we will always worry but with time it gets better & you learn to be strong & get through it all during your sons time of need. if your son is doing well right now, then just focus on that. try not to worry about the future because it will only drive you crazy, try to stay positive & live in the moment. I know its easier said than done because I am working on it myself best wishes.