I'm New From The UK I Have Child With crohns

[Lizzyg]

Hello everyone I am new to the group I am from the UK. I have a 13 year old daughter who was diagnosed with Crohns when she was 12 years old in Dec 18. My daughter had not been well for several months prior to diagnosis. Started with mouth ulcers, then fatigue and loss of appetite followed. She was always very pale and was always cold, that was even on a hot summers day. We had several trips to our doctors surgery. My daughter had blood tests which revealed she was anemic. The doctor should of picked up from that that something was wrong but didn't he just prescribed iron tablets. The iron tabets did absolutely nothing for her. Luckily our dentist referred my daughter to the dental hospital to have the mouth ulcers Checked out. Straight away on looking in my daughters mouth the dentist suggested Crohns. So he had her referred to the Gastro team at our local children's hospital. We had a wonderful consultant who did all the test colonoscopy, endoscopy etc. From that Crohns was diagnosed. So my daughter was put straight onto steroids as it was Christmas and didn't want to ruin her Christmas putting her on a liquid diet. Within two days she was so much better. She had the most amazing appetite, colour back in her cheeks and was just generally so much better. We were able to have a great Christmas. She did put on a little weight on her face but to be honest she had got too thin so it kind of suited her. Other than that she had no other side effects from the steroids. Once she was tapered off the steroids she was then put on Azathioprine. However within two weeks she had an awful reaction to it with stomach pain and vomiting. So the consultant took her straight off it! She was then put on Humira injections, she had four loading doses and then onto 40mg fortnightly.

So fast forward to now my daughter went straight into remission and has been for 12 months. She has had no side effects from the humira, she injects those herself and feels no pain or stinging from those at all. She is very active doing gymnastics, trampolining twice a week. In February she went skiing in Switzerland with school for week and had a fantastic time. She has had no time off school for the crohns except for appointments and those are just once every 3 months for a review. She has just had an annual MRI and is soon to have a review with the consultat to have her bloods checked out. A nurse comes out to our house to take the bloods and collect a stool sample 4 weeks prior to the 3 monthly review. That is so the consultant has everything in front of him ready for the review and a treatment plan in place if needed on his findings of blood tests.

I must say I was terrified on finding out the diagnosis, I had read some awful stories which really frightened me. Then I joined a children's support group for children with IBD here in the UK. The group has been my lifesaver and I am in a much more positive place. We are enjoying our daughter being well. We totally understand that the disease is for life and very unpredictable. However we will be strong and cope with whatever is thrown at us. My daughter has been given this vile disease so we are sure as hell not going to lie down and give in to it!

Thank you for reading I am looking forward to being part of your group.

 

[my little penguin]

:welcome: sorry you had to join the group
But so glad to hear your dd is doing well on humira
Biologics can be life changing for most kids here with ibd
Ds was dx at age 7 and started biologics at age 8.
He had 5 plus years on humira .
He is now on Stelara at age 15.

Ask any questions you need

 

[Jelly loves Peanut butter]

Thank you for sharing your daughter’s story and welcome to the group! Glad she is doing so well

 

[Lizzyg]

Thank you both for welcoming me to your group you are very kind.

My Little Penguin can I ask why did your ds Come off humira? Can I also ask what is Sterala? That is something used a lot on this site but I have never heard of it in the UK.

 

[pdx]

Welcome! My daughter was also diagnosed at age 12 and she's also on a biologic--Remicade in her case. She is 16 now and still doing well on it. I'm so glad to hear that your daughter is in remission, and I hope that Humira continues to work well for her for a long, long time!

 

[Lizzyg]

Welcome! My daughter was also diagnosed at age 12 and she's also on a biologic--Remicade in her case. She is 16 now and still doing well on it. I'm so glad to hear that your daughter is in remission, and I hope that Humira continues to work well for her for a long, long time!

Thank you so much. That's so good to hear your daughter is doing well. Has she had many problems along the way? I am coping so much better than I was at first. I do find I have days where it is constantly on my mind. I soon pull myself together and refuse to let the disease take over our lives.

Thankh once again.

 

[emmaaaargh]

Hello and welcome! I'm so glad to hear your daughter is doing well. Feel free to ask any questions you might have here!! I was diagnosed when I was 9, and I'm 20 now, so I've been through it from your daughter's perspective. My mum has always been my rock through everything medical, and it's thanks to her support and encouragement that I'm living independently at university - so you're doing a brilliant job, and your daughter will very much appreciate your care over the years

 

[my little penguin]

He had to stop humira for 6-8 weeks due to removal of a cervical lymph node .
Once he restarted humira it no longer worked for him.
Stelara is a biologic (Il-12/il-23) that is approved for psoriatic arthritis as well as Crohn’s disease in the US and I believe Canada .
It’s newer
I think it’s available in the U.K. but limited at this time
Only approved for adults with crohns in the US but approved for teens woth PsA
Humira and remicade are anti tnf biologics
So Stelara is slightly different in how it attacks
Ds was on remicade first for 8 months then had two allergic reactions
Before he switched to humira .
He also has juvenile arthritis so drugs like Entyvio (biologic only treats the gut )
Were not a good fit .

At high dose 90 mg every 4 weeks things seem to be at baseline .
Ds is different since his crohns is on the milder side but his EIMs are far worse (hence the biologics)

 

[Lizzyg]

Hello and welcome! I'm so glad to hear your daughter is doing well. Feel free to ask any questions you might have here!! I was diagnosed when I was 9, and I'm 20 now, so I've been through it from your daughter's perspective. My mum has always been my rock through everything medical, and it's thanks to her support and encouragement that I'm living independently at university - so you're doing a brilliant job, and your daughter will very much appreciate your care over the years

Thank you for the lovely welcome. You sound like you are coping really well. How have things been for you over the years? It's great to read other stories from people with a positive attitude. X

 

[Lizzyg]

He had to stop humira for 6-8 weeks due to removal of a cervical lymph node .
Once he restarted humira it no longer worked for him.
Stelara is a biologic (Il-12/il-23) that is approved for psoriatic arthritis as well as Crohn’s disease in the US and I believe Canada .
It’s newer
I think it’s available in the U.K. but limited at this time
Only approved for adults with crohns in the US but approved for teens woth PsA
Humira and remicade are anti tnf biologics
So Stelara is slightly different in how it attacks
Ds was on remicade first for 8 months then had two allergic reactions
Before he switched to humira .
He also has juvenile arthritis so drugs like Entyvio (biologic only treats the gut )
Were not a good fit .

At high dose 90 mg every 4 weeks things seem to be at baseline .
Ds is different since his crohns is on the milder side but his EIMs are far worse (hence the biologics)

It amazes me how all our children are put on different treatments. I still wonder how the consultants know which treatment plan they suggest for each child.

 

[crohnsinct]

Welcome! Thanks so much for sharing your good story. Too often people (myself included) forget to come on post the good news and only come on when there are problems and we need advice. This could sometimes give the view that everyone is always suffering when in reality when things are good we aren't thinking of Crohn's and are off living our very full lives. So thanks again for sharing a good news story. It helps when things aren't going well to be reminded that there are years of good remission.

To answer your question about deciding on which meds to use the GI's have a decision matrix. Disease location, severity, symptoms, other diseases or conditions, patients delivery (IV, injection, pill, liquid etc) preference and patients risk tolerance etc.

 

[Lizzyg]

Welcome! Thanks so much for sharing your good story. Too often people (myself included) forget to come on post the good news and only come on when there are problems and we need advice. This could sometimes give the view that everyone is always suffering when in reality when things are good we aren't thinking of Crohn's and are off living our very full lives. So thanks again for sharing a good news story. It helps when things aren't going well to be reminded that there are years of good remission.

To answer your question about deciding on which meds to use the GI's have a decision matrix. Disease location, severity, symptoms, other diseases or conditions, patients delivery (IV, injection, pill, liquid etc) preference and patients risk tolerance etc.

Thank you lovely welcome yet again, you all sound like great people.

I totally agree with you it is so good to hear success stories. When my daughter was first diagnosed I scared myself silly with the stories that I read. I had got it into my head that that is how things will be for my daughter for the rest of her life. I had to pull myself together as I knew I would be no use to my daughter if I was in such a state. It was the wake up call that I needed.

Yes our consultant did tell us the treatment plan that he suggests depends on the severity of the disease within each individual. I believe humira is more for severe crohns. It's difficult for me to understand that really because my daughter was never really poorly that it stopped her from living her life. Although plodding on was difficult for her at times. She never once lost any time off school with the symptoms. I guess that's why they call it an invisible illness.

 

[Lizzyg]

Adding a little humour to my post when my daughter was first diagnosed I think I drove her crazy with the daily questions.

Have you been the toilet? What was your poo like? Was there blood in it? Do you have an appitie? Oh my poor daughter. I am so much better now and only ask her every couple of days now!! Only kidding hardly ask at all now!!

 

[emmaaaargh]

Thank you for the lovely welcome. You sound like you are coping really well. How have things been for you over the years? It's great to read other stories from people with a positive attitude. X

I've not been doing too great honestly. I had a couple of good years of remission after surgery nearly 10 years ago, but when I was about 13 I entered a low-level flare that was sort of controlled by azathioprine, but not really well enough.

With the stress of my GCSEs and A-levels I buried my head in the sand and didn't want to believe things were getting worse but they were! I finally bit the bullet and asked for more help after my old doctor retired in my first year at university and I got a new one. I was on Humira for over a year and it didn't help at all, but now I'm on infliximab and hoping for better results!

But I'm still chugging along despite the flare and mostly okay on my own. I do as much as I'm able to do just to spite the disease :thumright: (even if going abroad for internships/placements isn't an option!)

PS on driving your daughter crazy with the questions - my mum did that too, now we've reached the point where she doesn't even need to ask any more because I will gleefully tell her when there's any change in my bowel habits, as easily as I'll tell her the rest of my daily news :lol2:

 

[Jo-mom]

OMG- I did the same when asking my son about his bowel habits. I now refrain and hope that he tells me if there is anything that needs attention. He is an adult and I can't drill him on his bathroom habits or question him when he isn't as hungry.

Emma - thank you for sharing your story, and welcome Lizzy. I haven't been on this forum long but I can say it's probably the best on-line support system available.

 

[Lizzyg]

OMG- I did the same when asking my son about his bowel habits. I now refrain and hope that he tells me if there is anything that needs attention. He is an adult and I can't drill him on his bathroom habits or question him when he isn't as hungry.

Emma - thank you for sharing your story, and welcome Lizzy. I haven't been on this forum long but I can say it's probably the best on-line support system available.

Hi Jo-mom thank you. I feel the warmth of the group support already. I also have a great support group in the UK which is a children's charity for children with IBD. I wanted to join the group as the support does seem pretty solid.

 

[Lizzyg]

Emmarrrrh I am so sorry you have had some tough times. You do however sound like a very strong positive young lady. I really hope my daughter grows up with the positive attitude that you have.

 

[crohnsinct]

Wanted to add that often kids with moderate disease also need biologics as the goal with kids is to control disease quickly so they can catch up on growth. Also, many studies have shown the sooner you control disease the more affect you will have on the need or lack there of of surgery down the road. Since our kids are diagnosed with the disease so young and have a life time ahead of them controlling disease early becomes important. So I have one daughter with moderate disease who tried immunomodulators (mid line therapy) for a year. It didn't fully heal her so we went to biologics and found our success there. MY other daughter was very sick and in patient so there was no question she needed to go right to biologics.

 

[crohnsinct]

I've not been doing too great honestly. I had a

emmaaaargh thanks for sharing your story. It sounds ridiculously similar to my daughter's story and it encourages me to know we are not alone. My daughter was in good solid remission for 4 years then at 16 also started to flare. We played around with dosing and interval of her Remade and methotrexate for 3 years and never quite got her back into good remission. She has now been in an all out flare for the past 6 months and we just made the decision to try another biologic. But all in all it hasn't stopped her. She is at university, getting great grades, playing sports etc. I think you kids are a great example of living with and overcoming chronic illness. God bless you!

 

[Lizzyg]

Wanted to add that often kids with moderate disease also need biologics as the goal with kids is to control disease quickly so they can catch up on growth. Also, many studies have shown the sooner you control disease the more affect you will have on the need or lack there of of surgery down the road. Since our kids are diagnosed with the disease so young and have a life time ahead of them controlling disease early becomes important. So I have one daughter with moderate disease who tried immunomodulators (mid line therapy) for a year. It didn't fully heal her so we went to biologics and found our success there. MY other daughter was very sick and in patient so there was no question she needed to go right to biologics.

That makes a lot of sense. I guess at early teen stage it is vital to get the kids treated with the right treatment to enable them to hit puberty.

My daughter although doing great at 13 she still hasn't hit puberty. Well I say that but what I mean is she has not yet developed and is quite slim. However I do now stop comparing her with her friends as I didn't really develope until I was 15 years old. So with or without crohns my daughter could be a late developer.

 

[RobShamrock]

Hi Lizzy, nice to read your story, what caught my eye was the Azathioprine reaction, we had a terrible reaction with 6MP similar vomiting etc (and I mean Exorcist vomiting up the walls), my son diagnosed August '17, and treatment commenced Dec. '17, then onto Biologics Remicade Feb. '18, as other have said its was straight to biologics due to his age and puberty being slightly delayed.

The similarity to all our stories is scary, but heart warming that other have had and are fighting Crohns, most of us successfully.

Like others our aim to get our kids thru school, puberty etc. healthy and happy.

My hope is to get as long as possible from bioligic 1 Remicade with the hope if it fails
another will easily replace it.

Our son has been in remission since starting the biologic, he's put on nearly nearly 20kg since he was diagnosed. Thinks he's obese, but forgets he was skin and bones for so long he looks great. Gets some joint pain but thriving,

Long may it last

 

[Lizzyg]

Hi Rob,
.
Thanks for your reply. I am so pleased to read that your son is doing well on his treatment, really hope it lasts for him. How have you coped with the diagnosis? I find that I have good days and bad days. I can be really positive about the whole thing one day but then other days I find I am still struggling to come to terms with it!

It's great to hear other parents stories so thanks again for getting in touch.

 

[crohnsinct]

Aw hun! Cut yourself some slack. It takes time. The first year is the toughest. You will get to a point where you don't think of Crohn's for days or maybe even weeks at a time. Then something will happen and you will be back to obsessively refreshing the portal for lab results. Ask me how I know.....

It has only been 3 months....it gets better. You get better.
:ghug:

 

[Jo-mom]

I am a relatively new to this as well - it's only been about 8 months since my son was diagnosed with Crohn's, and I am still struggling with it, especially when he is exhibiting more obvious symptoms, but I find that as time goes on, and I understand it more, and learn about the pattern, and all the rest of it, it is a little easier. I still don't like how this disease has changed our lives though. It's like before Crohn's and Arthritis/ and the after.

Love this support group though - thank you all and good luck.

 

[my little penguin]

Hugs Grief takes a while to process abd adjust to your new norm
We are 8 years in
Crohns is there but in the background
Arthritis is a bigger pain for ds now but still not as big of a presence
It does get better
1-2 years is typical from dx

 

[Lizzyg]

Thank you all for your support. I have just noticed that I stated in my opening post that my daughter was diagnosed in Dec 2018 it was Dec 2017 sorry about that. So its actually 15 months since diagnosis. It has definitely got easier to cope with, I was a total wreck to start with. I couldn't function right and was having panic attacks. That was frightening as I had never experienced those before. I was in that state for several weeks, crying all the time. Then one day I felt this enormous amount of strength and thought to myself... No more this will not destroy me my daughter needs me. I have never looked back since and have kept that strength going. However occasionally it hits me like a ton of bricks and I weaken for a short time. I think it's because my daughter more or less went straight into remission and has had signs of a flare what so ever for 15 months. So it's like I am on the side line just waiting for it to happen. My daughter only has to mention that she is tired and I go into a mad panic thinking it's the start of a flare. I will spend a whole day on a downer and then feel annoyed with myself when the next day she will get up full of energy and I realise she was genuinely just a bit tired the day before just like any other teenager. My husband copes so much better and just gets on with it. His attitude is very much don't sit waiting worrying about something that could take months or even years to happen and just enjoy all the good days. So yes 15 months on I am so much better and enjoying our family ife again. I am not going to lie but my daughters illness is the last thing on my mind at night and the first thing on my mind in the morning. I do look forward to the days when those feelings are always at the back of my mind.

Thank you all again for your support.

 

[Jo-mom]

Lizzyg - when reading your last post, it felt like I wrote it! My son still is not completely in remission, but for example today, he is in the middle of university final exams and when he gets nervous, he experiences nausea, loses his appetite, and goes to the washroom more. Sure sounds like his crohn's, so then many thoughts and worries are going through my mind. He is getting remicade infusions every 4 weeks and it is not lasting for weeks. His next infusion is on Apr 16 and he will be getting his blood tested. I think he needs an increase in his dose.



Celebrate your daughter's remission. My son has yet to experience a full month of feeling great but he is pretty close. He also has arthritis to deal with and remicade is really helping with that as well. My husband also seems to be less affected. I think mothers tend to blame themselves (though we should never do that) or are just more aware of what is going on. It's probably just mother nature for women to be that way. We think we could have prevented this somehow.


Thank you for your story - it makes me feel like I'm not alone. I have too wasted time worrying when there was nothing to worry about, and am always waiting for the other shoe to drop when things are going well. It's only been 8 months although his arthritis exhibited itself a few years ago. What we wouldn't do for our kids!

 

[my little penguin]

Just remember to take it one day at a time
Some data will be better
But eventually it all gets easier to deal with
Hugs

 

[Jo-mom]

Thank you My Little Penguin. Just like lizzyg, my first and last thought of the day concerns my son's health - how will he be today - will he eat well - will he feel well. Today, although he didn't say anything, i can see he is struggling with his appetite and I think he is experiencing nausea which typically is not a good sign when it comes to the way his symptoms exhibit themselves. I'm hoping he doesn't get into a major flare by next Tuesday (Next infusion). He has another exam tomorrow so I am hoping it is just the stress of that making him feel "crohnie".

 

[Maya142]

Lizzyg - when reading your last post, it felt like I wrote it! My son still is not completely in remission, but for example today, he is in the middle of university final exams and when he gets nervous, he experiences nausea, loses his appetite, and goes to the washroom more. Sure sounds like his crohn's, so then many thoughts and worries are going through my mind. He is getting remicade infusions every 4 weeks and it is not lasting for weeks. His next infusion is on Apr 16 and he will be getting his blood tested. I think he needs an increase in his dose.

Celebrate your daughter's remission. My son has yet to experience a full month of feeling great but he is pretty close. He also has arthritis to deal with and remicade is really helping with that as well. My husband also seems to be less affected. I think mothers tend to blame themselves (though we should never do that) or are just more aware of what is going on. It's probably just mother nature for women to be that way. We think we could have prevented this somehow.

Jo-Mom, does he have accommodations set up at his university/college? My daughter is in college and one of her accommodations is "stop-the-clock" bathroom breaks. So she does not lose any time if she has to go to the bathroom many times.

He would need to register with the school's Disability Services office, if he isn't already.

My daughters both have AS and one has graduated college and the other is in college. Both had many accommodations for their arthritis too.

 

[Jo-mom]

Maya142 - he has not had issues so far with exams and needing to go to bathroom often (so far). They should have something similar here in Canada though. Thank you.