6 weeks since son's diagnosis -- how do you handle the emotions?

[Food4Thought]

Hi all,

I've been lurking in this forum for a few weeks (you all have helped me through the fears of Remicade and MTX), and just joined today.

I'd like to hear from other parents how you managed the few weeks/months after diagnosis. I feel like I'm still quite a wreck, and wonder how long this will last.

The short story is that my 12-year old son was diagnosed with fistulating Crohn's on January 25, 2015. We were in the hospital for 6 days, after two months of doctors visits and labs (he was originally diagnosed failure-to-thrive and put on a high calorie diet, but once his fistula started acting up and his calprotectin labs came back >2000 he was admitted to the hospital). He had surgery to repair the fistula (got a seton put in) and started Remicade the same day as his scopes/surgery/official diagnosis.

Since then, he has been doing amazingly well. His CRP is down from 5.2 to .56. He seems to be doing well on the Remicade/MTX combo. He's eating well, and I'm easing us into the AIP.

But the thing is... I'm still crying nearly every day. I can't cry in front of the kid, of course. But there are so many emotions tied up in this diagnosis. I'm so relieved that he's been feeling so good, feeling guilty for not recognizing how ill he was for all those years (he never complained of pain, just didn't eat much and had low energy), angry that this is happening to him, scared for future developments, all of that.

It also didn't help that we were referred to the Make-a-Wish foundation within 2 weeks of diagnosis. I mean, it's great and our experience with them so far has been really encouraging, but it also took away that level of denial I had about it "not being serious."

So, I'd love to hear how some of you handled the diagnosis and some of the ways you were able to find your "new normal." We're a pretty introverted family, and the excessive number of doctor's visits (we've got 5 we see regularly now) is exhausting. I have lots of friends who want to help, but I honestly have no idea what kind of help would even be helpful right now.

So... how did you survive the first few months after diagnosis?

 

[Clash]

For me, there was a sense of relief at having a dx for a month or so. It was like "ok we have a name for it and a treatment regimen let's move forward."

Because symptoms wise the remicade worked immediately I feel like it calmed and reassured me that we could find a way through this.

Even a year and half later, while still asymptomatic and on remicade, it was decided C needed a resection due to one area of inflammation that was not responding yet I still felt confident.

It wasn't until after surgery, a med switch to humira(9 months in to humira injections) and an increase of mtx that a scope revealed that his disease had spread that fear started to set in again. What is going to stop this disease. Sometimes, I let that overwhelm me, sometimes I let it control my emotions. But, even though C has active disease he is still asymptomatic and out doing all the normal college age things so I just have to appreciate that he is living well and happy now. I'll be ready to battle when we have to but I make an effort to enjoy the symptom free times while they're here.

 

[pdx]

So sorry about your son's diagnosis. I can empathize with how you're feeling--I was a wreck after my daughter's diagnosis. Like you, I had a lot of worry and guilt, and I cried easily and often. For me, it got better after about 3 months, once I knew more about Crohn's, had resigned from my job, and was finally sleeping enough.

It has never gotten easy, but things are so much better now. My daughter is doing well after a year on Remicade, and although I still worry about the future, it's much different than the overwhelming feelings I had a year ago.

Try to let go of the guilt especially--most kids take years to be diagnosed. My daughter had symptoms for 5 years before her diagnosis. It's not your fault for not figuring it out. And try to get as much sleep as you can!

Hope that your son continues to do well, and that you start feeling better too. :ghug:

 

[my little penguin]

Big hugs
Your going through the stages of grief
It's not a straight path
I was a mess for months
I was glad that he had a dx spent a year tell ing his Ped something was wrong
Thankfully we didn't need a referral for Gi
For me I had a:duh: moment at second opinion appt where the Gi wanted to know what Ds was on for inflammation .
I said pentasa - I had no idea what any drug was let alone what it did it why
After feeling like an idiot I decided. I would pull every paper I could on Ped crohns until I understood what the meds did and why as well as what the disease really was .
It worked
Ds Gi now asks me if I read the current study on xyz
Finding the right med was key
Once Ds was able to do most of the same things again
I knew things would be ok

Visiting here
Reading trashy novels / shopping / watching bad tv
Remember oxygen mask in yourself first otherwise your no good for anyone else
Crying in the shower helps
As well as screaming when no one is home

Hugs
4 years later things are ok crohns wise

 

[Food4Thought]

Visiting here
Reading trashy novels / shopping / watching bad tv
Remember oxygen mask in yourself first otherwise your no good for anyone else
Crying in the shower helps
As well as screaming when no one is home

Thanks for that. I've been sinking into Korean dramas, and it does get my mind off things for a bit. I guess I needed someone else to give me permission to just enjoy myself when I can.

And thanks for the encouragement. Even though it sucks to know you've all been going through this for so much longer than I have, it's nice to know we're not alone.

 

[Optimistic]

You've been given good advice but I wanted to comment on the introvert and being exhausted part.

I know some people love to talk about it but for me that was totally draining. It completely took the wind out of my sails when I was having a decent day, thinking this was chrinic but we were going to be ok, and then have someone ask me to tell the story, some random reminder or inquiry, etc. YesI know interims were good and I don't want to be ungrateful but I felt like I Became one dimensional and that was all people focused on. I wanted to scream no crohns talk, please tell me about you or the weather or anything else!

I wanted to compartmentalize And focus on crohns when I wanted to and only then. It wasn't denial but really just my way of keeping it from coming to surface because it was always running in the background. I really wasn't emotionally able to do that. I could get up for appointments and tests and phone calls with nurses but didn't really want any more crohns talk at random. I love coming here but it is on my time and my terms, when I am ready.

I don't know what the solution is. I didn't expect to rant like that! Im glad he has made such progress. Celebrate that and cry when you need to. It gets better.

 

[Food4Thought]

Optimistic, I've felt like that a LOT! When it's just a normal day with normal friends, everything's great. And then someone will ask, "How's the kid?" and I'm a wreck again.

I feel like I've pulled out of social events lately because I really don't want to talk about it. I know people are curious and want to be supportive. We've only made it to church twice since diagnosis, and we leave totally drained and usually crying. It's great to have good friends, but so hard to just be normal now. But it's hard to say, "If you want to be supportive, just treat us like nothing ever happened." You know? I just want to forget all about it for a few hours.

Except when I really want to talk to someone about it, like today. I'm glad I decided to sign on here.

 

[my little penguin]

Anyone who isn't a family or good friend
When they ask how Ds is
I say "fine"
Since it's better than the glazed over look like that can't really happen right
Family gets the modified version and true medical friends ( moms who know what it's like to wait for tests etc..) get the full version

Hugs it will get better and a game face with "fine" allows you to focus on something other than crohns ( says the mom who is always on here :lol: )

 

[Jenn]

Welcome, sorry to hear of your son. Same, it took many months to get through the stages of grief, lots of shower-crying, and also an introvert. Helped me to get as much information as possible, to be the advocate your child needs. You will find acceptance eventually and a new normal, which really doesn't come til the disease is better controlled. Friends and family can have limited tolerance, so dialed that back but it's great now when they ask, remember that they do care and don't really know how to help. Fear of the other shoe dropping still nags at me sometimes - I've become more withdrawn since it seems like something always goes wrong when I try to do too much, sigh! Never hurts to consider therapy if it gets too overwhelming. Best of luck to you!

 

[Sascot]

Welcome. Sorry you are struggling to deal with it all. I think it took few months of things being okay for me to calm down a bit. Now I just have those moments of terror that things will deteriorate again or I worry out the future but they don't last too long. Now if only they could sort child no. 2 I could actually relax

 

[malorymug]

Hi, I'm so glad you posted! And I'm glad you found us and I'm sorry you needed to find us.

Your statement "I feel like I'm still quite a wreck", hit me hard. My son's diagnosis was a huge shock to me. It took me about ~ 6 months to be nearly back to normal. But I still (sorry) really struggle with parenting him, recognizing signs he needs a doctor's visit, and negotiating with school 2 years later.

The advice that others have shared that have help me include:
Remember that you are grieving and it is a process, be easy on yourself
"My son is better, thanks", when friends ask, very few folks know the details
I come here and read, learn, commiserate, and joke. I feel like I have a team with this great group of parents.

 

[CarolinAlaska]

F4T, it took me a year to not cry easily, and now, 3 years into it, I look at myself and see it has played an awful toll on my own health. I am considering seeing a counselor myself, which I probably should have started doing a long time ago. I can usually keep myself together in public now, but I think the whole process has created a lack of trust of doctors, and I find myself crying non-stop when I have to advocate for my kids when they seem to be making mistakes - like wanting to put her on clindamycin after she just had c.diff, or waiting hours on end for my son to have surgery without a word from anyone about the wait. I feel like no one can see all her complexities except me, and that they think I overreact. I am very detailed about her history, but they still want to put her on meds she's had serious reactions to in the past. It's nuts. I think all my family is suffering from my stress. It really sucks.

 

[CrohnsKidMom]

Welcome to the forum, but so sorry you are going through this. Your feelings are 100% normal. Rest assured there are better days ahead though. Don't give up hope. Don't isolate yourself from family and friends. They will end up being a great support. But yes, sometimes you need to know when to step away from all the questions and concerned faces, and give yourself a break. We all want what is best for our kids-health, balance, success, happiness. It is so sad when our hopes feel dashed. But the reality is, every family goes through something and has issues to deal with. As morbid as it is, that thought has helped me cope. But above all else, don't give up hope. It may sound cheesy to some, but I remember that my child is God's child. I do all I can for him, and trust God to take care of the rest. It's hard to do, but it has brought me some sense of peace.

 

[Jmrogers4]

Welcome to the forum, it can still hit me out of the blue and I go in the shower and have a good cry. Most days are fantastic and my son is doing really well right now but it still feels like I'm always waiting for the other shoe to drop. I know you can go many many years with no issues, my husband has been in remission for about 14 years, he was diagnosed 23 years ago but I did not break down like I do with my child maybe it's because he's an adult and with my child it's my job to keep them safe. We try and make his life as normal as possible but when it comes down to it there are just things he needs accommodations for and extra things to think about when he is deciding his future. We are doing college visits over spring break (he is a junior in high school), how many others when looking at college figure out where the nearest hospital is? and where would he get his infusions?
Now 6 years later most days it's not at the top of my mind or even at all, he's living a pretty normal teenage life and is excited about the opportunities for his future but right now you are still in the midst of it all. You're in the middle of the battle to get back your child before Crohn's while there still may be battles we all hope for long times of remission and someday a cure.
Just remember with the forum that a lot of people come here when things are bad because they need extra support from others who understand and get it when you break down in tears because someone asked how your child was doing. When things are good you are out living life and enjoying the days and you don't want to think about Crohn's. That's why I try and stick around maybe not as much as I did in the beginning but I hope that my son's story can give people hope that it can be okay. I try and give back since everyone was so helpful with me and I truly care about all these kids and want to know how they are doing. Everyone here feels like family

 

[Tesscorm]

I want to welcome you and say I am sorry that you had to find us. :ghug:

I think almost every post above has hit some 'nail on the head' for me. There are lots of emotions involved when your child is diagnosed with a chronic illness. But, acceptance and 'normalness' will come once he has been feeling well for a while. Doesn't mean that fear of the future or of the 'other shoe dropping' leaves you completely; it took time to learn what to worry about, what to calmly wait-and-see and, sometimes, I still go to RED alert! :blush: But, you will learn and it does get easier.

For me, aside from time passing, what has helped me the most was learning and coming here. Learn, learn, learn! This so helped me - both from the perpective of needing to feel that I had some control and could still do my job of keeping my son as safe as possible (even if he had a chronic illness) and from Carol's perspective - making sure errors are not made! Unfortunately, I have come across a number of those (ie lost test orders/results, etc.). Learning has also opened my eyes to the treatments under development and gives me hope that better treatments are on their way.

Coming here truly is finding THE group of friends who understand completely!! And, not only do the parents/members always offer support, they are insightful and very knowledgeable. They have been a Godsend!

So, after almost 5 years, while a new symptom or abnormal result will still cause instant anxiety, I no longer worry 'daily' if he's really alright or even about his future.

:ghug:

 

[Food4Thought]

Thank you all. Your posts have been so helpful to me.

A few of you mentioned that constant anxiety -- and I think some of my grief is because I'm coming OUT of that phase. There were several months before diagnosis when things were just going wrong with him all the time. He was very ill, but no one knew what was wrong with him, and I felt like I never had a moment to breathe. The possibility of Crohn's at that time seemed very scary.

Once he got diagnosed, and was able to eat again so quickly after his first treatment, there was this... strange feeling where all the anxiety had been. It was relief, but also quite disorienting, because I'd really been on red alert for months.

But I think I expected that we would be "normal" again pretty quickly. And that's not at all the case. Lots of doctor appointments, infusions, medications, follow-ups... and every day keeping the food journal to figure out what works and what doesn't for him. And knowing he's gotta go back in for more scopes and to check on fistula healing, and the possibility of another seton being placed... anyway, it's been crazy in its own new way.

My husband and I have looked into counseling based on a recommendation from a friend, but so far most places are saying 6 months before we can get an appointment. So much waiting!

Anyway, that was more venting I guess. But thanks to all of you for sharing your experiences. I think I wanted you to say it was easy and you bounced back quickly, but these more realistic responses are really helping me feel like it's OKAY that I haven't jumped back in to normal life yet.

 

[my little penguin]

One thing about food journals
It's a good idea but....
Wait till his gut heals first
Since he just started meds it can take months for it to heal and what may seem like a not acceptable food - in fact can be ok after healing
So not worth changing things all at once

Just to have to do it again

We have found that most kids on here do not need a restricted diet since that just causes them to loose more weight that they don't have to lose
Some have tried various other diet but stopped quickly


Ds didn't try a true diet until last year since his crohns was under control with meds alone for three years


Diet in adults is one in kids it gets a whole lot trickier

Currently Ds eats a custom Gastroparesis diet and getting enough calories in is a daily struggle

Remember it's a marathon not a short race you will have time to tweak diet soon enough