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Husband & 2 daughters with Crohn’s.

L

Lang3

Hi everyone I’m new to forum.
Just wondered if anybody is going through what I am.
Husband has Crohn’s diagnosed at aged 6 - total colectomy aged 6.

My 13 year old daughter diagnosed aged 10.
Stormy 2019, 3 emergency surgeries.

sepsis & blood transfusions. Ended up with an ileostomy like her father. She was on infliximab & aziothyoprin however built antibodies, numerous infections so she was switched to adalimumab.

My second daughter aged 10 diagnosed yesterday! Started high dose steroids calcium and omepraz.
We know the problem is genetic X-linked.

I’m feeling very anxious about their future.
I also have a 4 year old who is likely to have Crohn’s to just a matter of time.

I’m heart broken, worried sick their life will be spent mostly in hospital or on tons of medication with lots of side effects.
 
my little penguin

my little penguin

Moderator
Staff member
My kiddo was dx at 7
Now almost 18
On Stelara and methotrexate -has been on biologics since age 8
No surgeries -no issues -so it is possible
All good
Does have juvenile arthritis which is harder to control than his crohns but Stelara/mtx is doing that
Finding the right med combo is key

Stelara has a very low risk for infection
Much lower than remicade and humira
But you use what works
 
Jo-mom

Jo-mom

Location
Toronto, Canada
Hello, and welcome to the forum. Please feel free to vent, express, ask questions anytime. Sometimes having an outlet like this can be helpful. Sorry to hear of your struggles. I agree with my little penguin. It can be challenging to navigate this disease, as you know, but most of the time, a pretty normal life is lead, but as a parent, it is painful to watch your children not have a "normal" life. You've got this. Hugs.
 
L

Lang3

Thats great news about your Son, I hope he keeps well.
Jo-mom, Thank you ❤
Feeling really sad today, going through the motions.
I am now wondering if prednisolone is the way forward.
Is that what others have started with 1st.

my eldest was on steroids then needed surgery 1 month post diagnosis.Took weeks to heal because of steroid use.

I will ask about consultant about Stelara, I know she wasn’t keen on methotrexate just yet.
They have mentioned bone marrow transplant as well.
I know I need to take it day by day, just can’t help worrying.
 
my little penguin

my little penguin

Moderator
Staff member
So steriods are typically started the same time as a maintenance med (methotrexate,remicade ,humira etc..) so the steroids can bring down the inflammation and then be weaned once the maintenance meds take over
We never started with just steriods
Een is exclusive enteral nutrition meaning formula only no solid fooods
This done for 8-9 weeks again with the start of a maintence med so when Een is done the maintence med takes over

Een is used instead of steriods to reduce inflammation
We ended up doing both
Een with 6-mp fir 6-8 weeks at dx
Then once Een stopped -his lover wasnt happy with 6-mp so steriods
And on and on mtx next
And finally remicade after a year
It’s hit or miss
But every kid is different
 
my little penguin

my little penguin

Moderator
Staff member
They no longer recommend 6-mp or aza (imuran) for kids due to the increased risk of lymphoma
They use methotrexate instead
Also lower the risk of t-cell lymphoma when mtx is used with a biologics
 
S

Sammysmom

You have a lot on your plate right now, and I can't imagine how overwhelming it must be. My daughter was diagnosed right after she turned 5. For about a year prior to her official diagnosis, I was extremely lost, scared, and every other emotion. I was dealing with a toddler who was having 12 - 15 times a day bloody bowel movements, many during the middle of the night so sleep was nonexistent for both of us. I was repeatedly told by my daughter's pediatrician that this was just constipation and would resolve itself eventually. It didn't, and we ended up in the ER. It was a 2-month hospital stay consisting of daily blood draws, blood transfusions, infusions, feeding tubes, etc. She is currently on a combo of Remicade infusions every 3 weeks, and methotrexate every week. In the beginning, our GI recommended I attend a virtual support group with families of kids who were also diagnosed very young. This was a time when I wasn't sleeping, was constantly searching on the internet, etc. There were families who went/were going thru similar issues as my daughter, but also families who were dealing with medical issues I could even begin to fathom. The one thing everyone said to me was "in the beginning, it's awful, but it gets better". I couldn't stand to hear it. I couldn't imagine a scenario where that would be possible. We are still struggling, but I have come to slowly realize that she can have a great life. Not every side effect of the medication is guaranteed, and the chances of them actually happening are very slim. I am still learning how to navigate all this, and there are days that I fail miserably. The crazy thing is that with all of my daughter has been thru, she is one of the happiest kids I have ever known. She has adapted well to all of this (which is great and heartbreaking all at the same time). Remember to take time for yourself, celebrate the small victories, stay off the internet, and take some small amount of comfort that you are not alone. Be vocal with your GI, reach out whenever you have concerns, don't be afraid to question things. Life itself is already complicated, full of nuances, then you get dealt a chronic disease on top of it. Being a single parent, I have found online support groups, and this forum to be extremely helpful. Sending you and your family light and love.
 
L

Lang3

I’m so sorry to hear this! You must have been out of your mind with worry.

Your message means a lot thank you very much 🥰
it definitely does help talking to others who understand. It can be complete torture the worrying of what might happen next. Taking each day as it comes is good advice.

My girls are exactly the same, so happy & positive. Children are so resilient.


I really do appreciate all your messages. Thank you ❤
sending lots of love back to you. Sincerely hope everyone stays well.
 
J

Jbungie

Sammysmom said:
You have a lot on your plate right now, and I can't imagine how overwhelming it must be. My daughter was diagnosed right after she turned 5. For about a year prior to her official diagnosis, I was extremely lost, scared, and every other emotion. I was dealing with a toddler who was having 12 - 15 times a day bloody bowel movements, many during the middle of the night so sleep was nonexistent for both of us. I was repeatedly told by my daughter's pediatrician that this was just constipation and would resolve itself eventually. It didn't, and we ended up in the ER. It was a 2-month hospital stay consisting of daily blood draws, blood transfusions, infusions, feeding tubes, etc. She is currently on a combo of Remicade infusions every 3 weeks, and methotrexate every week. In the beginning, our GI recommended I attend a virtual support group with families of kids who were also diagnosed very young. This was a time when I wasn't sleeping, was constantly searching on the internet, etc. There were families who went/were going thru similar issues as my daughter, but also families who were dealing with medical issues I could even begin to fathom. The one thing everyone said to me was "in the beginning, it's awful, but it gets better". I couldn't stand to hear it. I couldn't imagine a scenario where that would be possible. We are still struggling, but I have come to slowly realize that she can have a great life. Not every side effect of the medication is guaranteed, and the chances of them actually happening are very slim. I am still learning how to navigate all this, and there are days that I fail miserably. The crazy thing is that with all of my daughter has been thru, she is one of the happiest kids I have ever known. She has adapted well to all of this (which is great and heartbreaking all at the same time). Remember to take time for yourself, celebrate the small victories, stay off the internet, and take some small amount of comfort that you are not alone. Be vocal with your GI, reach out whenever you have concerns, don't be afraid to question things. Life itself is already complicated, full of nuances, then you get dealt a chronic disease on top of it. Being a single parent, I have found online support groups, and this forum to be extremely helpful. Sending you and your family light and love.
Click to expand...
This basically reads like I wrote it myself. We were diagnosed in Jan'21, 5 years old. Currently in clinical remission on Remicade and Methotrexate. Pediatrician told us the same, ended up in the ER, 19 days over a month at CHOP. New scopes scheduled for 10.15, which I hope will let us drop the methotrxate. My son is doing very well, completely normal poo schedule, all formed. Putting weight on is a bit tough, but he's tall.

I am a complete and utter mess, and I have gotten worse. Its feels like my life is over. Searching the web to soothe myself constantly. Questioning whether we caused this be feeding him formula. Sleeping to be awaken by horrible dreams and panic attacks. Just overall disbelief, and constant fear. I get stuck on if this is an issue, and a big one, what will it cause, or what else is going on that I dont know about.

And I am already in weekly therapy, and medicated :(
 
L

lukesjr

unlike the past promises of medical help, I think us IBD people have a reason to feel optimistic about the future. I know COVID has been bad with the all deaths, etc, but it has brought about a medical revolution and we are on the cusp of life changing medical science and the rapid covid vaccine acceleration had something to do with that. There are so many drugs in the pipeline, so much more research being done on so many different diseases.

Again, the next 5 years is going to be a wild ride for the field of medicine. Assuming the country and the world doesn't tear itself apart first!

There is good reason to have hope and be optimistic about the future for a crohns cure!
 
L

Lang3

Jbungie said:
This basically reads like I wrote it myself. We were diagnosed in Jan'21, 5 years old. Currently in clinical remission on Remicade and Methotrexate. Pediatrician told us the same, ended up in the ER, 19 days over a month at CHOP. New scopes scheduled for 10.15, which I hope will let us drop the methotrxate. My son is doing very well, completely normal poo schedule, all formed. Putting weight on is a bit tough, but he's tall.

I am a complete and utter mess, and I have gotten worse. Its feels like my life is over. Searching the web to soothe myself constantly. Questioning whether we caused this be feeding him formula. Sleeping to be awaken by horrible dreams and panic attacks. Just overall disbelief, and constant fear. I get stuck on if this is an issue, and a big one, what will it cause, or what else is going on that I dont know about.

And I am already in weekly therapy, and medicated :(
Click to expand...
Jbungie said:
This basically reads like I wrote it myself. We were diagnosed in Jan'21, 5 years old. Currently in clinical remission on Remicade and Methotrexate. Pediatrician told us the same, ended up in the ER, 19 days over a month at CHOP. New scopes scheduled for 10.15, which I hope will let us drop the methotrxate. My son is doing very well, completely normal poo schedule, all formed. Putting weight on is a bit tough, but he's tall.

I am a complete and utter mess, and I have gotten worse. Its feels like my life is over. Searching the web to soothe myself constantly. Questioning whether we caused this be feeding him formula. Sleeping to be awaken by horrible dreams and panic attacks. Just overall disbelief, and constant fear. I get stuck on if this is an issue, and a big one, what will it cause, or what else is going on that I dont know about.

And I am already in weekly therapy, and medicated :(
Click to expand...
I feel your anxiety & pain. Nightmares sleepless nights worried about what happened or may happen!
This disease is unpredictable, we have no control over it, other than being pro active, watching signs & acting quickly.
It’s nobodies fault why our children have Crohn’s it’s nature & we have no control over that either.
Please don’t blame yourself for what you did or didn’t do!
take each day as it comes, you are going to be ok. And if things do go wonky, you can get through it, stay strong for your son he needs you to be & in turn he will be!

Sending you hugs 🤗

I don’t know if anybody is going through genetic testing?
my daughter has a spelling mistake x-linked, had inactivation testing. Drs don’t understand why she was so poorly.
dad & I have had testing waiting on results.
My middle daughter is awaiting blood tests.

I also heard someone mention a vaccine for Crohn’s disease, don’t know how true it is.
 
D

Delta_hippo

There is a vaccine being developed in the UK but still in early stages, they have done safety tests and now recruiting people with mild Crohn’s to see if it works. It has been very slow as they have largely relied on patients fundraising I think. They have s website (Crohn’s map vaccine) and Facebook group for updates.
 
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