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I can't do this again


Trying
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My DH was diagnosed with Chrohn's Disease when I was pregnant with our oldest though he showed symptoms when I met him at 20.  My middle son was diagnosed was Chrohn's Disease  and an associated untreatable liver disease at age 12, he will need a liver transplant at some point(hopefully far in the future).  DH died of a neuroendocrine cancer that started in his colon at age 45.

 

Today my oldest was scheduled for a CAT Scan, colonoscopy  and endoscopy because of severe weight loss and constant diarrhea and they are thinking it's Chrohn's. 

 

I can't do this again with someone I love.  I took him to DHs doctor instead of the pediatric GI his brother goes to because he is 19.  Same office I was at so many times with DH.  Same doctor who stuck by us through his cancer and had the whole hospital jumping through hoops for DH. 

 

I'm not strong enough and I feel so alone and scared.  How do I reassure him when he knows as much as he does?  He's been so emotionally fragile, how can he handle all of this?

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Trying,

 

I wish I had something to offer. Nothing. Spent time last week with DH's older brother in the Cardiac care unit that my DH was in a few weeks before he passed away. Not a nice walk down memory lane and had us both shaken up a bit. Fortunately BIL will be okay but it does just really take one's breath away.

 

I am so sorry. I read everything you post and I don't reply often, but I couldn't let this one go by without letting you know I was thinking about you.

 

M

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Trying, I'm so sorry you are facing all of this angst.  I wish I had a magic wand, really.  You, your husband and your boys have been through enough.  Maybe if we all shout out "UNCLE!"

 

Overall, I think the only answer is just one bite at a time...how we eat this damned elephant.

 

Hugs,

 

Maureen

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Truly, I am sorry. I don't have a whole lot advice, these days, other than to say just take things one step at a time, remember to breathe, and try your best not to panic, unless the doctor tells you that you should. I know this is so hard. (((Hugs)))

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Thanks everyone.  I can't seem to stop crying.  My kids have all been through so much.  My middle son is not only faced with the same disease his Dad had before cancer but also a much more serious liver disease.  He told me last night that I was irresponsible when I decided to make babies with DH knowing he could pass this along.  Wow.  I was pregnant with oldest when he was diagnosed and they don't really know the genetic link so it never occurred to me to not have more children. Now I feel responsible on top of everything else. 

 

I don't want my kids to suffer any more than they already have.  I don't want this hanging over them, always wondering if cancer is in their future too, but I can't change that.

 

I finally told my mom and sister tonight.  I really don't want to tell my inlaws until we know what we are dealing with.  My MIL has never handled medical problems well and now it's understandably worse.  I hate worrying and upsetting everyone and to be honest, my role has always been to comfort and reassure everyone else and I just don't have it in me right now.  I want someone to comfort and reassure me but there is no one here for me.

 

I need to stop crying.

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I know it's probably hard, but please do not blame yourself. Genetics is never a certainty. Your thirteen year old is just being a teenager. They lash out and have an immature thought process. ((hugs))

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Trying,

 

You bore those children because they were wanted. You couldn't have known that they would become ill.  Of course, you didn't want them to suffer, but genetics and nature are beyond your control.  Still, as a non-parent, I can't know what this feels like in your shoes. 

 

I know that my first in-laws struggled their entire lives knowing that each gave my husband a bad gene that lead to his SMA.  There wasn't even any history in the family.  They couldn't have known, yet the feelings of guilt remained.  Obviously, they are valid feelings, and any attempt to say that you shouldn't feel this way might only lead to you feeling invalidated.  You feel this.  You are heartbroken.  You deserve support and hugs right about now.  I wish I had more for you...

 

Maureen

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SHIT!

 

HUGS...more HUGS..... and more HUGS

 

NO in depth wisdom here......just the standard advice. "do what you can....enjoy when you can.....ignore when you can .... and proceed"

 

Onwards and forwards

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Well shit!  I wish I could say something to better help you cope.  Just take it one day at a time.  Medical advances are being made all the time.  Hopefully, your sons cases will respond better to treatment in the upcoming months.  Sure wish there was something I could do to make you feel better.  Just know I'm praying for you and your boys.

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  • 2 weeks later...

Yesterday was his CT scan, no results yet.  Sitting in that same waiting room that I sat in so many times with DH was a huge trigger. Other unrelated stressful events yesterday piled on and had me crying a good part of the afternoon, not able to focus on anything well.  He really deserves a stronger parent, I was so much stronger when I went Through this with my middle son because I had DH by my side.  I was always the calm one in control of the medical stuff for the family, reassuring everyone, doing my research, being in charge.  I hate that my son is seeing me fall apart, as much as I try to hide it, he's 19 and he sees the difference.

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I know this is difficult waiting on results.  You are stronger than you feel right now.  Praying for a good report.  Sending cyber hugs.  I'm so sorry you are going through this again.  What an awesome Mom you are. 

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Tight hugs, Trying. Waiting for results is so nerve-wracking - no wonder the stress overwhelmed you. Please try not to be so hard on yourself. Of course, you won't be able to stand as tall through the storms without your husband there to help buffer and support you.  I know you are doing the best you can, which is enough, because you are his mom. No one else could ever fill that role.

 

More hugs...

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So sorry -- I am so possessed with my kids health, they have horrible genetics from their dad's family -- cancer, diabetes, thyroid... a regular little buffet of 'crap to deal with'  ** sigh **

 

Somehow, I worry more about it all than the kids do...? 

 

Breath deep, repeat.  And have some chocolate -- you also need to look after yourself.

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  • 3 weeks later...

I wanted to update everyone and thank you for your support.  My son had his colonoscopy and endoscopy today and there was no sign of Crohn's disease!  I am sure you can all imagine the incredible relief for him and for me. After walking into the same day surgery unit that I took DH to every year, and seeing his old Doctor who I haven't seen since his final hospital stay, I really didn't think I would be able to keep it together.  I feel like a huge weight has been lifted and I hope that this will ease his stress.  We are going to look at dietary triggers, starting with eliminating dairy and see what happens.  He still has to go back in 6 months for an MRI to follow up on some enlarged lymph nodes but the Doctor is really not concerned.

 

 

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I'm so glad for the good news. I know you felt that you weren't strong enough for your son but I"m guessing you have an internal strength that showed itself when needed. You got through that - all those triggers and memories compounding the anguish of your son's health risk - and you emerged. What is that saying...tempered by fire? We've all been tempered by fire, making us stronger even if we don't know it.

 

Feeling thankful for you and your son.

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