How long to sink in?

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Firecaptain2009

Firecaptain2009

Joined
Jun 19, 2013
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My son (11 yrs) was diagnosed with Crohn's 2 days ago. It's hard to even type that. It is a fistualizing type, and he begins Remicade treatment on Monday. (for some reason, I thought this would be easier to type...)

Since then I've been busy researching my medical coverage, and trying to pick & choose what to read about his disease. I'll tell you, this has me going on a roller-coaster.

Tell me, for you parents, how long did it take to sink in, and what helped?
 
Last edited:
I'm not a parent, so I can't tell you how long it will take to sink in, just wanted to show my support. I hope that your son does well on Remicade and he can continue his childhood as close to normal as normal can be.
 
Hi Firecaptain and :welcome:

I am so very sorry to hear about your lad and hope more than anything that the Remicade pulls his disease back into line. :ghug:

Where is his disease located?

I assume only being diagnosed two days ago he has had no other treatment?

What have his signs and symptoms been?

I would like to stick around just now and give you an in depth response but I have to head out the door to soccer! It's Saturday afternoon here.

I shall return this evening but just want to let you know that you are not alone in the way you are feeling. You have found a fab place here for support, info and laughs...yes I know, hard to believe just now but the laughter and light will return and when it does you appreciate it more than ever! :) I have two children and they both have fistulising Crohn's.

Catch you later and welcome aboard!

Dusty. xxx
 
Hi, I'm sorry to hear of your son having crohns. My daughter was diagnosed 2 years ago this month, shes 16 now. I don't think it has sunk in yet, sometimes I feel like I'm living someone else's life and I'm lost.

What has helped me is doing hours of research, it made me feel like I am doing the best I can with the knowledge I have. Doctors as much as they try do not know your child like you do and they don't have the time to research the drugs they put out there. I have found more information on this forum then in any other place. You have to be an advocate for your son, research and ask questions, listen to your son.

no one in our family has crohns and from what we know no history. When I first heard of her diag I couldn't read to much as it just made me ill to think of what she might have to go thru.

I have found an awesome homeopathy doctor as well as a GI doc. There's a lot of important information a homeopathy can give you that the GI doctors just don't study or believe, such as vitamins and food allergies and or food sensitivities they are important.

My daughter is doing better these past months and we take advantage of every single good day.

I hope this helped some, we're all here for you.
Hugs
 
HI Firecaptain2009, and welcome :)
We're glad to have you join us, even tho we all wish you didn't have to :(

I have a daughter 20, who's been (officially) diagnosed since she was 16, but she was suspected of having Crohn's at 9 years.
I also have a son 18, whom is lying right next to me in a hospital bed waiting on biopsy results for his (official) diagnosis as I type this.

Honestly, I must live in a wonderful world of (pretend) denial most days ~ either that or I must be on autopilot because when I do get a moment to just stop and take a breath, I still don't feel like it's "real".

I also do a ton of research when I am able, and I love to come here; Somedays I just read, and some days I contribute ~ either way, it helps to know that I am amongst others who can relate.

I hope your son does well on the Remicade, I have read some wonderful stories of it helping tons of people here !
Take a deep breath, and don't try to rush your feelings if you can ~ baby steps. :hug:

Please look around to the Treatment sections as well, there's a wealth of information here that may just ease some of your worries ! And also, don't be shy and ask, ask, ask away anything you feel the need to!
Hope you stick around !
 
Back again. :ybiggrin:

I will be honest and say that when my daughter was diagnosed not only was I totally clueless about Crohn's but I was also relieved. Sarah was diagnosed when she was 14 (2006) but had been unwell for the previous 18 months and leading up to her diagnosis was getting increasingly worse. She was eventually diagnosed during emergency surgery and it was such a relief to finally have an answer to all her pain and suffering. It was then that I went into a honeymoon period, the surgery put her straight into remission and although she was in very poor condition all her symptoms disappeared and she went from strength ot strength so off I went into sunny dreamworld for a couple of years.

In her last year of school she started to go off the rails a tad, in the psychological sense, and it was then that I started to really delve into this demon called Crohn's. I started reading and researching and haven't really stopped since. Not only did reading about Crohn's provide me with focus and information but it also allowed me to become the best possible advocate I could be for her. It was also just after this period, when Sarah moved away to university, that I found I had more time on my hands and that is when I found this forum and what a godsend it has been! The support and ability to touch base with others that know exactly what you are thinking and feeling has been priceless. :)

Then at the end of 2010 my son (17 at the time) was diagnosed. The second time around was far worse for me. It was then that I realised that part of my coping mechanism was knowing that I had one healthy child. What I mean by that is, if Sarah became sick again I could drop everything and focus on her and her alone and I knew my son would be fine. One of my darkest times after Matt was diagnosed was not only that my heart was breaking for him but how in God's name was I going to cope with two children with Crohn's, it seemed insurmountable. Thank goodness the ability for a parent to cope with whatever befalls your children is endless!

Now that is not say to say that I didn't curl up in a ball and cry because I did and I still have what I call my black dog days and cry, but that is okay. :)

With Matt there was no sinking in time and I continued to do what was already in place, that being reading and the forum, but I needed more this time round. The control wasn't enough because I no longer had that healthy child to fall back on, the child that put perspective into my life. The one biggest thing that has helped me through this second diagnosis is my music. Yep, I rediscovered my ipod and nothing matches putting the headphones on and losing myself in the music that I love. It takes me to places far away and when I take those headphones off I am ready to face my reality again. :)

Just one last thing Firecaptain, i want to link you to a thread about grieving...

http://www.crohnsforum.com/showthread.php?t=22520

Thinking of you, :heart:

Dusty. xxx
 
Hi and welcome! My daughter was dx'd feb of last year and put right away on Remicade. There were about 6 months of tweaking dosage and schedule and a stints with EEN and predinisone but since August of last year it has been pretty much smooth sailing and she is doing fabulously well.

Typing the word Crohns...ugh! I remember two days after my daughter's dx (she was in the hospital) she went for a bone scan and I had to fill out one of those sheets that ask health history and meds. It was such a surreal moment that from that day on I was going to have to write Crohns. Now I have to write the long list of meds, dosages and supplements etc. School field trips when they go away are super fun when I march into school carrying her "med bag".

As for coping, it was easy for me but I think more because she was on death's door and I was scared it was something much more serious and to have an answer and a doc that had a lot of experience and good meds available...it was a relief. The gang here is awesome. Don't put yourself on any timeline of healing. Go with the flow.

I also found that researching the heck out of this disease helped me cope. Reading other's stories...knowing what to look for...seeing the promise. I know you have been told to read this and that but also please try to stop by the success thread. It is awesome to read about those who come out on the other side and many many do!

Good luck and keep us posted.

I am going to go delete all my posts about my affection for firefighters now;)
 
My daughter was diagnosed ~6 months ago.
My 2 cents on top of the previous posts - take it step by step.
No need to plan the next 20 years at once...one step at a time and every small step counts and helps understanding what to do or not to do next.
I would put as 1st target - to bring him into remission - any way is valid and would assume that current medicines are a good option to start with - the sooner he can move back to normal life - the better - in parallel - start checking alternative / complementary options. Crohn's medicines by themselves do not cure the disease and in long term might have negative effects - so would put as an objective to try and find alternative ways to get similar or better results. Option that we are checking (and many others) - are via diet - in our case - SCD / GAPS. Its not easy, its lifestyle change for all - but I believe that for the long term - at least it worth a try. Good luck and take care of the kid – step by step, success after success, measure the progress even if its few ‘millimeters’ – and results will come!
 
Welcome Firecaptain... you're going to find a lot of support and resources on this board. Ask lots of questions here and we'll help you get through this.

My son was Dx with Crohn's when he was 8, but went untreated for almost 3 years. Big mistake. Had I known then what I know now, I'd never have let that happen. So, like the others have said, research, research, research. That being said, not everything you read (i.e. the scary stuff) will apply or happen to your son. Research Crohn's just like you would any other subject of interest, but if it gets too overwhelming, take a break. I think the hardest thing about being a worried parent is accepting that not all the big, bad, scary things are going to happen. He might start Remicade, go into deep remission and live a happy, healthy childhood. It's possible!

Once you start seeing positive outcomes with meds, diets, etc, it becomes a little easier to accept the diagnosis, but it takes time.

You will learn the art of patience very quickly. Waiting for lab results, waiting for the nurse to call back, waiting for meds to work.

Are you seeing a GI at Mayo? We are in the Twin Cities. Started at MNGI then switched to the U of M. I've heard lots of good things about the ped GI's at Mayo.

Hang in there!
 
Welcome firecaptain. I'm sorry to hear of your sons diagnosis :( My daughter is 11 (12 in Aug) and was diagnosed in 2009 at 8 years old. She was diagnosed with Crohn's disease at first. Her diagnosis was changed in 2012 to Ulcerative Colitis. It was and still is very hard. I can't remember how long it took to sink in. A while for sure. She had been ill since she was about 18 mos old. She had recurring stomach aches, joint pains, diarrheah/constipation, mouth ulcers, rashes, fevers etc. I was always told it was a virus. She got very sick in May 2009 and ended up in the hosp for 2 weeks on morphine for pain. They did a battery of tests and ended up finding inflamed lymph nodes in her abdomen, and her white blood count was *through the roof*. They sent her to a leading Children's hospital, where they did upper and lower scopes and her first diagnosis of Crohn's.
When she was first diagnosed, she was put on Pentasa. She was a different kid within a week. She was feeling well! No more stomach pains, no more diarrheah, and no more tantrums.
You have come to the right place. I wish I would have found this forum when she was first diagnosed. I found it about a year ago. This place is so full of information, helpful people, support etc.
Good luck! I hope the Remicade puts him into remission.
 
Hi and welcome - really hope the remicade it works for your son. My daughter was diagnosed two years ago at age two. Tbh I was relieved when I was told because she was in such bad shape and had been unwell for so long. Having said that the reality of what crohns means didn't really sink on for a long time.

The most important thing for us has been the relationship with our GI team and particularly our GI nurse - it is do important to your own peace of mind that fully trust that they know what they are doing. Researching yourself is also great for extra information and ideas around treatment options. I hope your son starts to see benefits from the remicade quickly
 
Hi and welcome,

My girl is 4. For us it's one day at a time. Step by step and learning as we go kind of thing.
Some days it feels like it all sunk in and other times it feels like it hits like a ton of bricks.
It will get better.

HUGS
 
Hi and welcome. Sorry to hear about the diagnosis! Waiting for it to sink in is very different for everyone. I guess the more I know the more "comfortable" I feel about dealing with Crohn's but I will forever wish my son doesn't have it.
 
Hi my daughter is 15 and was diagnosed just over a year ago. At first l didn't think life would ever go on but slowly it does.The thing l found helped the most was coming on here and realizing there are other people in the same boat.... and they understand exactly how you feel. Take one day at a time.:ghug:

Good luck with the Remicade.
 
Welcome Firecaptain,
I think some days it still hasn't sunk in. My son will be 14 next month and was diagnosed when he was 10.
We just take one day at a time, one treatment at a time. I do lots of research now but honestly the first year or so I did not. I wish I would have and found this site then.
I did know all to well about Crohn's as my husband has been diagnosed with it the past 20 years so in some respect it was like okay if we do xyz everything will be fine but what works for Dad isn't always the same thing that works for my son.
You have found a wonderful spot to come to for support, to vent, to laugh, to cry. Hope the remicade works well for him and he is soon feeling well
 
:welcome: Firecaptain

Sorry to hear about your son't diagnosis. My son is also 11 and was diagnosed last year. I'd say it took me a good 6 months for my son's diagnosis to sink in. Even then I still have bad days where I feel like it isn't fair (because it's not) and feel very upset by it all. For me the bad days were everyday at the beginning and then they started to get fewer and farther between. I found that it was all a lot easier to accept when my son started to feel better. My bad days are usually triggered by my son not feeling well but when he is feeling well I can almost forget that Crohn's is there.

:hang: it does get easier.
 
Hi FireCaptain,

I am sorry you've had to find this forum, but it is a great source of info and support.

My son was dx'd just after turning 12. I had already been reading some before dx and suspected it was Crohn's, but to hear the GI come out and say it made my heart sink. I actually resented him for confirming it for me. Learning about it helped me, but be careful...you can get information overload. There's no set amount of time, but I know that I started feeling better about things after his treatment started working and my active boy came back to me. Not to say he isn't different because of it, but he is becoming a new person with a new normal. There is a grieving process too that goes along with losing the "normal healthy child" you thought you had and embracing the "new normal" that comes with Crohn's.

There are many treatment options and hopefully going on remicade will get things under control and he can begin to feel better. Once that happens, you will feel better about things. Just take it a step at a time. You're not alone!
 
Thanks, everyone. Think I was having a bad day Friday!

I think that this is just all surreal for me. Cb doesn't really seem that ill. He has been struggling with some sores on his butt (fistulas we now know), and some abscesses. That led to the colonoscopy and endoscopy, MRI etc. However he has still been playing soccer and baseball and such.

So, to hear from the docs/nurses how sick he is really is strange. I don't disbelieve them - I don't think I'm in denial - but then mebey I am!

I guess I just want to wake up and find it was a bad dream!

Trying to learn about the disease and recommended treatment (remicade) is frightening by itself. Everywhere I turn I find complications, reactions, and so forth. I'll just have to place my faith an trust in God that he has Cb in his hands!
 
Welcome Firecaptain! My 8 yr old son was dx'd in March. He is on Prednisone and Methotrexate injections. He is doing quite well now, but Crohn's is sneaky and you'll likely find there are lots of ups and downs. We have. And yes, the risks of these meds are scary. I think that bothers me as much as the disease itself. But options are limited. I try to educate myself about Crohn's, but I have to stop the reading sometimes. I don't want this to totally rule our lives. You'll find wonderful advice and support here. It has helped me. And like you said, trust that God has this. We keep saying we don't know what tomorrow holds, but we know Who holds tomorrow. Take care of yourself and your son! I'll be praying for you!
 
Hey Firecaptain,

Welcome to the forum - so glad you found the group, yet so sorry you needed to look for us...

My son was diagnosed 3 years ago at the age of 13 - he had been pretty sick for a couple of months, but I had assumed (and initially doctor's confirmed) that he simply had a stomach bug that wouldn't go away (everyone else had it!?)...

I remember our Pediatrician asking if Crohn's was in our family - I remember saying, "No I don't know anyone named Crone." (doy! laughs...)

It takes time and I do believe it can be harder when you do not see the obvious signs of illness. But hold on tight to your faith - I too have a strong testimony that God is in control. I pray the remi does the job for you. We do not have experience with that med but there is a forum on here that talks about it.

And remember: EVERY CHILD IS DIFFERENT! You will find what works best for your son! And I wish you God's speed at every turn!
 
Good luck!!! My son recently started remicade (February) and it is tough to come to terms with when they don't appear sick. My son felt and looked good, it was only MREs that showed continued inflammation and the need to treat it.

So far, treatments have gone well... he's had no adverse effects from the remicade at all. He's scheduled to have another MRE in August, so we'll see how it's working but, it hasn't been a difficult treatment for him.

I have read that remicade is one of the best treatments for fistulas, hopefully, it will bring your son some relief very quickly! :ghug:
 
Welcome, we were in the same boat 3 years ago, same symptoms, diagnosis. I'd say it took me a 2 year grieving period to truly find our new normal with lots of ups and downs along the way. Having real health helps a ton. I never thought my son was that ill until he was well, what a difference. The slow decline is so deceptive because you naturally adapt to it. Hope the infusion went well today and you see some results quickly.
 
Remi going in nicely, thank God! No adverse reactions, and Caleb is doing great! Still in denial about it being needed, thanks for the post about grief, DustyKat!
 
Well, today's visit went VERY well. We are at Mayo (in MN), and received such wonderful treatment. He was given a dose of Zyrtek prior to the Remicade, then they gave the med at a slowly increasing rate until it was done, starting at 3.2 ml/hr for 15 min, then 6.4 ml/hr for another 15 min, and so on. No allergic reactions, and Caleb had a good experience -thankfully!

DustyKat said:
Where is his disease located?

I assume only being diagnosed two days ago he has had no other treatment?

What have his signs and symptoms been?


Dusty. xxx
Click to expand...

Dusty, he has some "erythema" in the stomach, erosions in the duodenum, anal fissures and a perianal fistula. In addition, there is inflammation in the ileum...

(takes me a while to look all the medical terms up)

We have been giving antibiotic treatments, trying to heal his bottom - before finding out the Dx of Crohns. Some things he has been complaining of is stomach pain, lots of other non-specific ailments, and a loss of appetite. We had been thinking this was some sort of "growing pains" earlier...
 
Aw, I'm sorry to hear about your son. I'm glad they were able to figure out what was wrong. I was in bigtime denial for a couple weeks (maybe a month or two?) but as time has gone on, I think it has sunk in. It was one of the most stressful times of being a parent for me, but my daughter is doing fairly well now. I found that article about denial to be very helpful at this point in the game too. I'm glad to hear the Remicade treatment went well.
 
Welcome Firecaptain. I'm glad you found us, but sorry you had to.

My 17 year old son was diagnosed in October with Crohn's. When Reed was diagnosed, it instantly hit me like a ton of bricks. When I heard the diagnosis, immediate comprehension seared into my brain and soul. I liken it to the "flash" some people claim to have when they die. I saw instantly the medical, financial, social, emotional, physical, etc. ramifications. I don't think it's great to absorb it all so fast. Perhaps denial is a coping mechanism, and the brain does what it needs to do to protect itself.

There is no right or wrong way of reacting. Don't fight it if you need outside help (family, medication, meditation, counseling, etc.). Sometimes I have to stop researching and I even give myself mini-vacations from this wonderful site, just because I need to swim up for air every once in a while.

Be kind to yourself.

We will be here for you. I have found only love and compassion on this site. I feel honored to have met so many wonderful people, and those same people are here for you, as am I.

Kimberly
 
So, I guess my denial needs to be over. His Fecal Calprotectin level came back from the lab...ended up at 686 mcg/g. Seeing as the level should be less than 51, I can't be on the denial wagon anymore!

Poor guy is being woken up at night with stomach aches...sure tears my heart out!
 
Hugs
Fecal cal for most Ibd needs to be less than 200-300
At least for three gi's DS has seen.
In the thousands means flare 300-1000 less than a flare or getting over a flare.
Less tgan 51 is gor normal dissnt have ibd people .
Sorry to hear about the stomach pain we have that here as well.
 
Right! No more denial but did he have a fecal cal test prior? Was that number significantly higher? If so, it is moving in the right direction so good bye denial hello acceptance and positive mental attitude! Wish his tummy felt better? When is his next infusion?

Sorry to hear about your fellow fire fighters in AZ...So tragic and sad:(
 
That was his first fecal cal test. Taken the morning before his first remicade infusion.

Symptoms seem to be worsening…next infusion is on the 8th.

Gonna look at some diet info to see if that will help also…
 
My son's first fecal calprotectin was taken before we had tweaked with Remicade, he had been on it for four or five months and would have no symptoms right after the infusion but he couldn't make it the full 8 weeks, so we did the fecal calprotectin and it came back 1700, I nearly fell out!

We upped the dose of Remi then had to tweak the schedule and eventually had to add methotrexate. After being on this for 3 months we took another fecal calprotectin the level was 300.

We just recently took another fecal calprotectin 3 months after the last and his level was 48. It has just taken some time for all the meds to start working at their optimal therapeutic level.

I hope Remicade work for your son and he is feeling better soon!

We have a Diet Forum(<--click here) that has some great info from various members and different diets they have tried if you are interested in diet changes.
 
If you thought he would do it you could try Exclusive Enteral Nutrition. You can look it up in the treatment form. There is also a thread in the parents section Kids On EEN. Remicade can sometimes take a little bit to work fully on it's own. Most start with a steroid and then Remicade then wean off the steroid slowly while the Remicade is getting up to speed. EEN is an alternative to steroids and has just as good if not better success rate at getting kids to remission. Just not as successful at maintenance which is why you need a drug like Remicade. My daughter was on Prednisone for three months and every time we tried to wean her symptoms came back. All this was while on Remicade. We shortened Remi cycles (she does every 5 weeks) and increased dosage (a little over adult dose) and did 8 weeks EEN. The EEN got her to remission and by that time the Remicade was doing it's thing.

Good luck! I hope you find what works for your boy!
 
It's amazing that it has already been two months. Caleb is doing SO much better. He has had three doses of Remicade, and it seems that almost all symptoms are gone. I guess I've quit thinking about the future "possibilities", and am enjoying the current situation. His stomach pains are gone - and he is back on a full diet - not lactose free, or anything else. He is gaining weight, and height also.

Thanks to ALL of you for your support, encouragement and thoughts.
 
Well this calls for some dancing you know what! :poop::poop::poop:

Love to hear when these kids are kicking Crohns Butt!

Long may it continue!
 

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