Full of saddness and fear today

[Mom2oneboy]

I feel so overcome with saddness and fear today! I have cried on and off all day...struggling to focus on anything....trying to maintain a sense of normalacy so my son doesn't get concerned. I'm not sleeping well and have lost 6lbs in the past 3 weeks because I have no appetite.

He had his CT small bowel follow through yesterday and did way better than I thought he would with drinking the barium. Tech says his ileum is still inflamed and shows some narrowing and a stricture. She said once the inflamation goes down the stricture may as well. No way to tell at this point. He's been on Entocort for 12 days. I was secretly hoping and praying that the inflamation would be gone by now. I dreamed of hearing that this was all a big mistake and it was some sort of infection that has resolved itself. The good news is that the crohn's appears to only be in the ileum and she saw no fistulas. Somehow I left there still feeling like I had been kicked in the teeth.

I want my old life back. My son doesn't deserve this! My job has always been to protect him and I can't protect him from this. I want him to have a normal life! He is 10 for goodness sakes. How will he handle this emotionally as he moves through these critical adolescant years? What battles do we have ahead of us?? I am scared and feel so weak right now.

The logical side of me says to take it one day at a time. This is all new and I am totally overwhelmed with information. I never do well when things are all up in the air....I need a plan. We meet with the doctor next Tuesday to develop a plan. Maybe that will help settle me some? Maybe I need anxiety medication?

What I SHOULD be doing is enjoying this beautiful day that God has given me and rejoicing that my son at the moment feels great. While I sit here crying as I type this, he is outside riding bikes with his friend and playing on the playground at the school. He can't wait for 6pm when he will be going to another friends for a sleepover tonight.

If you have made it this far in reading, I appreciate it. I know I sound pathetic and I need to "cowboy up". Please tell me I'm not the only one who has had such feelings of despair and that it gets better!

Shelley

 

[KellyMom]

Shelley,
I just joined this forum today. I am feeling a lot of the same feelings you mentioned. Despair, hopelessness, just lost and hoping they are wrong. I just wanted you to know you are not alone! I wish I had more advice on Crohn's but that is why I came here, as I just got diagnosed last week. I hope someone out there has some answers for you to put your mind at ease! This is awful enough at 33, I can't even imagine trying to help one of my children through it. My heart goes out to you!

 

[Sascot]

Sorry to hear you are having such a hard time. I totally understand how you feel! I am still have that hope that they will phone me and tell me they made a mistake.
It took a few weeks for the reality of this to sink in. My son is also ok at the moment (apart from nausea from the Cipro) and going to school/ playing with friends but last night I was up half the night stressing because he felt sick from the antibiotic and I am soo worried it will cause a relapse.
The medications seem to be such a stressful minefield! I agree with you that we should be able to protect our kids from this but we can't. All we can do is put on a brave face and help them as much as possible. I try to cry at night once he is asleep.
I hope you manage to get a plan sorted so that you may feel slightly more in control. I am sure we all feel the same as you! Good luck.

 

[Lisa]

Hi Shelley and all.....

I was diagnosed with UC when I was 7 years old...with the diagnosis then going back and forth between UC and Crohns over the years (finally settled on Crohns Colitis).....

Anyway - things CAN and will improve.....I went through many periods of flares and REMISSION...the key is having a good medical team who works with you, and of course, getting a child to adhere to their medicine regime!

If you look at my profile picture - that is my daughter, who just turned 7 herself.....I am 33 years into this disease and I haven't let it slow me down at all!.....

Oh - and YES - my Mom still worries about me lol.....

 

[Crohn's Mom]

First off Shelly...Big giant {{{{{HUGS}}}}} :hug:

I'm so sorry you are feeling so down I have been there so many times, and it really is hard to think positive sometimes, especially when this is all so very new to you. I want to reassure you tho, it DOES get better ! My daughter, and so, so many others can attest to that.
Just one short year ago I couldn't see a bright light ahead for anything. I kept trying to tell myself to stay positive, one day at a time, enjoy the good moments, etc. etc. It is easier said than done, but it CAN be done.
Things will get better, and they will turn around, and you will look back at this all someday with a breath of relief
These kids are so strong and resilient, and as I you can probably already see with your son outside and enjoying his day, that they have a tendency to "handle" this better than we mommy's and daddy's do

You are not alone what so ever in your feelings right now !
If you have a moment you can read through my daughters surgery story (there's a link in my signature) and see what a roller coaster of emotions I lived on through our darkest days, and now into wonderful days of remission and her living her life to the fullest !
Yes, I still have my moments of tears and worry, even tho she is healthier right now than I ever remember. We can't help that part, they're our babies for life no matter how old; and like you said, we feel like it is our job to protect them and we can't from this.
You're doing a fabulous job tho in doing everything you can to help him! You're learning, and loving and guiding every second of the day even when he doesn't know it.
Hang in there mom and please don't ever think you need to apologize here ! That's what's so great about it ~ we all know how you feel and we all ride on the same roller coaster at one time or another !
:ghug::ghug::ghug:

 

[Tesscorm]

Aww Shelley,

You don't need to "cowboy up", we've all felt the same way. You need a bit more time to accept all these new issues. The fears and uncertainty for the future are overwhelming when it is so new! I felt all the same emotions - literally, your post could have been written about me. We've always taken care of our babies, protected them and tried to shield them from unfairness and now, suddenly, we've lost that control and it's so unfair. It's not easy to accept. And, while I have accepted that my son has Crohns, there will always be a little flicker of hope that there's been a mistake.

I know it seems so much easier to say but try to take one day at a time, one issue at a time. Research diets, supplements, other treatments, etc.; you don't need to make any changes now but, the more you learn, the more in control you will feel. Have a list of questions prepared for your apptmt on Tuesday. It will help you to not dwell on 'what if's' and will help you gain some control over this.

I know that regardless of what I say now, your concern will not diminish but as time passes and your son continues to play with his friends, goes to school, and responds to his treatment, you will come to terms with this.

Shelley, we're all here for you and we all understand. My heart breaks for you because I remember the pain but, believe me, it will get better. :ghug:

 

[Johnnysmom]

Sorry Shelley that you have had a bad day. But I promise it will get better. And chances are he will have a very normal life. It takes a while to sink in and adjust to so many changes. It is very hard sometimes, especially when all the "what ifs" start working on your mind. But the truth is there are lots of medications that can help your son live a normal life and there are lots of medications coming out that give us all hope for our kids. By the time our kids our 30 there will be drastically different treatment options.

I remember firmly believing this was all a big mistake. That somehow my son really didn't have crohn's. I walked around in tears the first weeks. Friends would complain of their kids having the flu and I would just not be able to relate to anyone anymore. I felt my life was completely different from theirs now and it would never be the same. I think everything you are going through is completely normal.

Don't give up believing that your son can accomplish anything he sets his mind to. Don't give up on all the dreams you had for him. It gets much easier with time and my son took 4 months to reach remission so that takes time too. It was a bumpy road but he is doing really well now.

Let us know how your son is doing.

((((hugs))))))Tiffany

 

[CLynn]

Shelley, you will need those times to vent, and that's what we are all here for! My heart breaks for your son having this at such a young age, and then it also made me realize that even though I was in college when I got it, my parents must have felt much the same way. I have a 10 year old son myself, so it really tugs at my heartstrings. I will say that although I had many times during the first 10 years of my diagnosis, maybe even 15, when I got down. But also, being young and fearless when diagnosed, I continued all my normal activities, worked full time, college full time, and went out with friends, etc. That's the beauty of being young, the young find a way. And I am confident your son will as well. God will help him with that too. You are in my prayers. Hugs to you both!

 

[Twiggy930]

Hi Shelley,

Just wanted to let you know that you are most definitely not alone in feeling sadness and fear about your son having this disease. My son is also 10 and he was diagnosed at the beginning of February. Some days I feel ok about everything and other days I just want to wake up from the nightmare. Most of all I wish that I could just make it all go away. I have been off work since the end of January, partly to care for my son but partly so that I can cope with how all of this has changed our lives. I have no words of wisdom I just really wanted you to know that I too am feeling the sadness and fear.

:hang:

 

[kimmidwife]

Hi Shelley,
I just wanted to chime in and say I also know what you are going through. You are right it is rough but it will get easier with time. There will be ups and downs but hopefully mostly ups!. I also remember being in denial about my daughters diagnosis. She accepted it better then I did. (she was 11 at the time) She actually was the one who got us through a lot of the difficult times with her smile and upbeatness. I know it is rough but we are all here for you any time you need to talk.

 

[dannysmom]

Hi. This is a great forum as you can probably see! You got some very good advice and it was nice to read everybody's replies. I've felt the same way ... and many days still do. I almost always just live in the present day ... even just the next few hours. I, like you, feel better when there is a plan. I spend a lot of time educating myself (my son is undiagnosed so my research is not just limited to Crohn's). Life is different with a child with a serious health issue. It is sometimes hard to relate to people that just cannot understand.

 

[izzi'smom]

Just wanted to say hello, and that it *is* tough! It's hard for your IRL acquaintances to understand, and it's perfectly normal to sit and sob at your screen..we all have done it!! It gets easier, though. THere are still tough times , but they are fewer and farther between, and a year after Izzi's diagnosis (even though her crohn's is still uncontrolled) I don't remember the last time I cried about her crohns. (((HUGS)))
Hang in there, mama!!!

 

[imaboveitall]

I wish I could say I have no understanding at all of what you describe...but sadly, I do.
V was so close to death at dx, that I still have PTSD from that time. Still wake up with nightmares about it, still feel a panic when anything changes with her, still relive and carry it with me. She was dangerously ill, and additionally I have guilt and pain from not "realizing" how sick she was sooner (dx took seven weeks).

Those first days are the worst, by far. It IS hard to accept, especially when the kid was formerly quite well and it all came on so suddenly...I too thought it cannot be IBD, must be bacterial/parasitic/somehow infectious, this kid was like a horse, always healthy never sick, always normal height and toned muscular body, never even had a gastroenteritis, I swear it. Had antibiotics TWICE in her LIFE by age TEN. How can she be close to death in a few weeks from a chronic illness of which there had been NO SIGN?

When your boy stabilizes it will get MUCH easier. Never easy, I won't lie. But life will go back to normal, and he will have his childhood.
The thing is to find the treatment that worls for HIM (stating the obvious), in V's case that was enteral nutrition, but others are living active lives on any of the drugs you can name, all have success stories.

All I can offer beyond that is...much understanding...I have been there, and still go there sometimes...:heart:

 

[AZMOM]

Shelley - (((Hugs))). We have ALL been there - different ways and different times but I promise you aren't alone! I tell my good friends that I may have to accept this but I will NEVER like it. None of us will. How on earth can you cowboy up?

You can always pour your heart out here. Take care of you so you can take care of your baby.

J.

 

[momoftwinboys]

Shelly,
Tess is right...No need to "cowboy up". It is ok to feel all the things you are feeling. It is not fair, it stinks.
I can get really down if I focus on what may go wrong down the road (and sometimes do). I try to keep focused on what I can do to help things go as well possible and be grateful that he is playing and being a ten yr old boy.
There was a book I read early after the diagnosis The First Year: Crohn's Disease and Ulcerative Colitis by Jill Sklar . It is a good overview about the disease. What jumped out to me was the discussion of grief and about moving through the 5 stages of grief denial, anger, bargaining, depression, and acceptance. I realizing the author was right, I was grieving for our life before the diagnosis. I still wish for that and am working on accepting our new reality. As I say to my son, they are reseaching for cures and treatments and there has been alot of progress in the last twenty years. My hope is our children benefit from advances in the near future. It does get easier..
Hang in there

 

[tots]

I am sorry that you are feeling the way you do. The first time I was diagmode my dr called me into his office and handed me a bunch of perscriptions. Said here ya go- the cure is as bad as the disease. Thanks for that!! Anyway- all this is hard to deal with- medications can affect it- if you think you need help with it 1)call your dr 2)turn your computer on and log on here!

Feel better soon and do somrthing nice for yourself!

 

[Dexky]

We've all been there Shelley! And live in constant fear of returning!! Once you get him in remission and watch him just get on with life, it will get better for you. There will eventually be hours(probably not days) that you won't think of crohns at all. Hang in there Mom!!

 

[Mom2oneboy]

Thank you all SO much for your support and encouraging words. I appreciate it more than you will ever know. You gave me hope yesterday when I felt I had none. I wish we didn't all have these feelings but it's nice to hear that I am not alone.

I am feeling much better today. I ended up taking an anxiety pill yesterday which really kept me from going off the rails and then I went to bed and slept a straight 12 hours. I think I was just emotionally drained. Got up this morning and had a good hour workout, chatted with some neighbors, and now my son is home from his sleepover and has a friend over. Not sure what tomorrow will bring but I'm enjoying where I'm at today.

Shelley

 

[ehs8998]

Hi there,
I am so sorry that you are having to deal with this. I have a daughter who was diagnosed in 2008 at age 6. She was perfectly healthy, played hard, etc., and then wham she was deathly ill, and we lived in the hospital for an entire summer, only to end up with a complete colectomy in August of 08.
I too was overcome with sadness, anger, and frustration.. why MY child? My GIRL child? As there isn't a cure, I also worry non stop about what we can do to make this go away!!
I don't think we can ever be completely the same again, and if we don't allow ourselves time to be angry, sad, panicked, etc.. I think we will implode.. I try never to cry or freak out in front of Caroline, as she worries more when she sees me upset.
I think having people to vent to and scream to are a great thing! I also have learned to FORCE myself to look for a positive in every thing.
I won't say it gets Easier... as they grow, and if the disease progresses or changes, then all we can do is sway with it, instead of fighting against it. Saying that is certainly easier than doing it.
Please know that I am very sorry for you and your child having to suffer this disease.. AND that you can always send something out and get responses...
Take Care,

 

[DustyKat]

Oh Shelley...:hug:

You have certainly found the right place not be alone hun. We are scattered to the four corners of the Earth and yet here we all are with one thing in common, our kids. I can't speak for everyone else here but I reckon I wouldn't be too far wrong in saying that we all found our way here because of fear, heartbreak, loneliness, anger, the desire to learn and most of all our intense love of something we hold so very dear.

This is all so new and raw Shelley and what you are feeling is natural, normal and just. Knowing that doesn't make it easier but it can at least give comfort in knowing that you are not crazy, you don't need to suck it up and deal with it and it is perfectly okay to cry, scream and yell.

Having a plan is good. You have a name for the enemy, Crohn's, and soon you will have a plan of attack. It is hard when you don't have something to hold onto, a direction to take as it really does leave you feeling so very helpless and overwhelmed.

I have been where you are twice now and it was certainly no easier the second time round. The worry and fear never really leaves you but when your child is in remission it does start to take a back seat. The thoughts and fears that once consumed your every waking moment slowly start to fade into the background and you eventually catch yourself thinking one evening..."Hey, I haven't thought about Crohn's since this morning!"...Your child is again living life to the full, laughing, playing, fighting, sulking and amazing you with their resilience, drive and determination.

It does indeed get better Shelley. Both of my children are in remission and are achieving as any other child does. I sometimes think that they may even be achieving more, perhaps they are because they have a deeper understanding of how tenuous life can be and that in turn gives them a desire to not waste a moment. I still have what I call my black dog days and I guess I always will. Sometimes he nips at my heels and I can usually out run him but other times he catches me and well and truly settles on my shoulders for a few days but hey, that's okay, I figure a good cry never hurt anyone and often times it allows you shake off the grief for a while and start afresh again.

:hang: you are doing just fine.. .. and we will be with you every step of the way.

Take care and be kind yourself, :heart:
Dusty. xxxxxxxx

 

[Momof2EW]

Although I don't have a child with this, I do have two boys and know what it feels like to see your innocent child hurt and in pain. Shelley, hang in there and lift your voice and prayers to the good Lord. I hope everything starts to smooth out for you and don't stress to much because your child can sense the sadness in you. Be strong and know that once the doctors get a plan down, things will smooth out and calm down. Thinking of you, stay positive..I know its hard.


Hugs!!

 

[Jenn]

Shelley, so sorry to hear you feeling this way, but thanks for sharing it. I have been there many times. This board helps so much knowing we are not alone! And it's OK, it's only natural to feel what you feel. goodness, it's an overwhelming burden at times. But know that there will be easier times, and harder times again, and easier. But you will continue to be strong for your child. Keep in mind it's worth a depression screening if you can't seem to get out of the rut any time.