Not sure i can cope

[Clarej121]

Hi
I'm a mum of a son with Crohn's, he is in pain everyday & i find myself feeling at a all time low.. i'm not that way inclined & i'm usually a very srong person.
I go to bed early & find myself struggling to get out of bed in the morning, i do oviously, but feel very tired & permantly holding back the tears.
I think of nothing else but crohn's whilst i'm awake! I feel totally powerless for Bailey, aswell i have 2 other son's.
I feel a real failure as i have no right to feel this bad, Bailey holds it together so why can't i??
I don't want anyone i know to find out how i feel, definetly don't want meds for this... I feel this illness in our lives is eating away at me...scared they'll be nothing left soon...
Sorry everyone
Clare

 

[EveB]

Hi Clare,
I really hope your okay
If you don't mind me asking but what age is your son? And just maybe tell a little about his Crohn's as I'm sure you know everyone is different with it..
I know I'm only 19 but I have crohn's aswell as my dad who has a complete change in his life and I know how it feels to be affected by someone else's illness! Its heartbreaking I know.. If you want to talk or just get anything off your chest, I'm here to have a chat with you about absolutely anything!!
Best thing to do it just relax, take a deep breath!
Don't be afraid to talk!
xx

 

[Clarej121]

Hi
Thank you so much for reply, Bailey has just turned 14, diagnosed Nov 10.
He has Crohn's throughout & they have given him so much treatment to no avail. I know it's a very long road, but can't see an end at all.
He did the Modulen diet via ng on & off for 8 months, no remmision.
Currently on
Pentasa 2g
Azathioprine 100mg
Omeprazole 40mg
Remicade every 8 weeks (3 so far)
Omega fish oil

Just seen a chinese herb doctor ( herbs on way)

I just feel so low at the moment, can't shake it.. But like every mum, my children are my world & when they hurt we hurt..
I'm also surrounded by people that don't understand Crohn's... Saying get well soon to Bailey. Even in laws said will he grow out of it!! i don't expect our family to be experts but to try & understand a little.
Iv'e given up my job to care for Bailey so i guess i have lots more time to think & dwell.

It's very sad that both you & your dad have Crohn's...
How do you cope?
What age were you when diagnosed...
You sound like a very positive, strong woman..
xxx

 

[EveB]

I forgot to mention that my cousin also has it and he has it throughout so I know first hand what you have to deal with on a daily basis..
I have it in the terminal ileum so although its the same my symptoms are limited!

Do you know what foods cause a flare up or are you still finding your feet with that one?
Does he do anything that gives relief? I always find that although other types of pain you may use heat but I find a cold compress always helps! And stress aswell, does he get very upset when he is in pain?

I find that aswell, that those who do not have Crohn's will never fully understand what it is or what things you have to deal with on a daily basis.. It can limit your activities greatly and at a young age you don't want to keep them from enjoying themsleves!
I know its been a year since he was diagnosed and this may not be comforting to you but it does take time to be able keep it all under control but when it does the feeling is just amazing!
I love to dance and be on stage and when I first starting feeling unwell I could not be on the stage for two minutes without having my tummy turn and having to leave! And now I cherish the moments I get on stage

My dad has it severe but he was left undiagnosed for years so thats the reason my dad has suffered, but your son will never be like that!
I was diagnosed when I was 15 and it was only when I was about 17 that I felt like I could be happy and relax about it, so it does take time but it will be worth it xx
Its just after going through it and then seeing all my dad had to go through, although the pain was severe and I thought I wouldn't be able deal with it, it really has just made me stronger!
And also, although I'm not a mother or anything don't forget about yourself.. You deserve to treat yourself! xx
My mam has to stay at home with my dad and connect him to drips every night and when she relaxes and treats herself she is extremely happy so just look after yourself too!
xxxx

 

[DustyKat]

Hey Clare...:hug:

But like every mum, my children are my world & when they hurt we hurt..

That's why at times in our lives these feelings become overwhelming and all consuming. What we wouldn't give to take away their pain and suffering, the medications, the hospital stays, the doctors visits, the tests and everything else that goes along with disease and give them back a normal, healthy childhood. You love your son with all your being and that's why you feel the way you do.

Don't deny yourself your feelings, you are grieving Clare, it is normal and nothing to be ashamed of. I wouldn't close down my options either, there is no shame in seeking help hun and if that comes in the form of a pill then so be it. If it helps you to find some peace and level ground to face this disease head on then I see no harm in that, it can only do Bailey and your other boy's no end of good.

As so many wise and knowledgeable peeps here have said so many a time...it is easier for me than it is for the ones looking after me. I also see a strength, determination and drive in my children that astounds me and leaves me feeling lacking at times (my black dog days). You aren't alone in the way feel Mum but I know it can feel that way when you are surrounded by people that don't understand what it is like to live this day in and day out.

Above all else there's no need to apologise for the way you are feeling, it is honest, heartfelt and just. Keep talking to us Clare, we are here for you.

Much love, :heart:
Dusty. xxxxxxxx

 

[Dayz]

Thank You EveB for your kind words. I dont have chrons disease but smatization disorder with a lot of the same symptoms as chrons and I was a complete mess when all of this started. On the brink of tears every day and just not wanting to wake up because the pain was unbearable. I have slowly begun to accept my condition and I am much stronger and wiser because of what I have endured. I wish you and your family the best- I definitely can understand why you would be so hurt to see your child in such pain but from what I have read it sounds like he is a trooper and that he is a very strong person.

 

[Brian'sMom]

Clare,
Hang in there! I had a few months awhile back where I just couldn't deal with the whole totality of it in my brain-I didn't want this life for me or my son...and so I cried and cried when my son wasn't looking. Lots of crying and doom and gloom...but... unfortunately, they have it and we don't get a choice in the matter, so we have to incorporate a new way of life. A friend on this forum told me, "Find your new normal". We have no choice but to hang in there. Our kids need us and actually we need them to show us how to cope too. As for family members...I come here for support with my feelings and fears. Family/friends can't understand and probably think they are helping when they say things that, to us, seem insensitive. My son gets a shot every other week...my own mom has said..."Well, its just something he has to do." She would've felt waaaay differerent if it had been one of her kids. But I think because I'M her kid, she thinks she's helping ME by coming across so tough. Does that make sense? Only parents here can relate. I consoled myself in realizing I myself don't know what it like for others facing different scenarios...for example my sister has a child with down's syndrome. So I give family members and friends a 'Pass' because they are probably giving me one here and there.
Grief and feeling helpless is normal. Parents walk in the shoes of their kids.

 

[whereisjoe]

Most people with Crohn's go through some difficult times, but my understanding is that it's a quite manageable disease, with many advances in treatments over the last 10 years.

You didn't mention anything about surgery. Last year I was having lots of problems and ended up having surgery. Fun? No. Easy? No. Fast recovery? Not really. After surgery they got me on remicade immediately and in my 13 years of having Crohn's this last year since surgery was the most symtom free, and I'm hopeful it will continue to be.

I waited too long for surgery. Had I gotten it earlier, they could've done it laproscopically, which is much less invasive and easier to recover from, and less expensive cause you're in the hospital less time. If the doctor is suggesting surgery, don't be closed to it.

 

[Slim Johnson]

+1

I came across an interesting quote recently:

"We don't cry because we aren't strong. We cry because we have been too strong for too long."

You have people on this forum to share your experience with now, you aren't alone.:rosette2:

Hey Clare...:hug:



That's why at times in our lives these feelings become overwhelming and all consuming. What we wouldn't give to take away their pain and suffering, the medications, the hospital stays, the doctors visits, the tests and everything else that goes along with disease and give them back a normal, healthy childhood. You love your son with all your being and that's why you feel the way you do.

Don't deny yourself your feelings, you are grieving Clare, it is normal and nothing to be ashamed of. I wouldn't close down my options either, there is no shame in seeking help hun and if that comes in the form of a pill then so be it. If it helps you to find some peace and level ground to face this disease head on then I see no harm in that, it can only do Bailey and your other boy's no end of good.

As so many wise and knowledgeable peeps here have said so many a time...it is easier for me than it is for the ones looking after me. I also see a strength, determination and drive in my children that astounds me and leaves me feeling lacking at times (my black dog days). You aren't alone in the way feel Mum but I know it can feel that way when you are surrounded by people that don't understand what it is like to live this day in and day out.

Above all else there's no need to apologise for the way you are feeling, it is honest, heartfelt and just. Keep talking to us Clare, we are here for you.

Much love, :heart:
Dusty. xxxxxxxx

 

[vness1208]

aww, I know how you feel.. You are definitely not alone. I also battled w/ depression once my daughter was diagnosed. I didnt have anyone around who understand CD either & I found myself falling deeper&deeper into a slump & had to get help. I realized that it was only making things worse for my daughter. I started doing my own research and looking for others who deal w/ the same situation and it made me feel alot better and prepared for the future. I still struggle sometimes but not nearly as much as before. I have talked to many people with CD that have grown up to be very successful! for instance, my daughters GI actually has CD and liver disease PSC. I hope you feel better knowing that our kids can still have a good future just try to stay positive and focus on the good things, it can always be worse. I havent posted on here in a while but I just wanted to give a few words of encouragement & support because most of us (parents) have been there and felt like giving up. but whenever you feel like giving up, remember why you held on for so long in the first place. Our kids need us to be strong for them! hope you find a way to get over this. its always better to let things out then to hold them in..were only human. hope everything works out for you. Hang in there

 

[LilyRose]

Hello Clare,

I wanted to let you knowthat I understand how you are feeling. I think it is just heartbreaking for a child to have a chronic condition, to be in pain, to be suffering. It is entirely understandable that you would feel so low. I think sometimes we do have to allow ourselves to feel sad and upset.

I hope posting in this forum is helping a little. I know I felt such a relief to have connected with other parents. I felt so alone and a little desperate!!

I hope when you feel up to it, you can seek out some support. Whether that is enlisting support from family, talking with friends, finding ways to nuture yourself, discussing options with your own doctor such as having a few sessions with a counseller, especially one that deals with families of children who are unwell, even discussing if medication is suitable.

You sound like a wonderful, caring Mum that needs some taking care of. Don't give up hope, I do believe your son will start to feel better, and so will you too.

Keep in touch, let us know how you are going.
take care,

Lily Rose

 

[Dexky]

Hey Clare, I agree wholeheartedly with all of the above! Also, if you haven't already found them, there are two pioneers on here who, like Bailey, had problems that meds just wouldn't address. They have gone through stem cell therapy with amazing results. There is a bright future for our kids!! Keep well and welcome!

 

[Clarej121]

Hello Everyone,
I am completely overwhelmed with the amazing response i have received.
Thank you from the bottom of my heart.. Quite a fitting qoute!

I went to bed after posting on here the other night feeling like i wouldn't have the courage to carry on the following day!!
I woke up & from my i phone got an email notification from EveB... Wow what a couragous young woman..

Although i still felt tired & fed up, i felt like the weight off my shoulders was lifting....
Iv'e been quite productive around the house, & Bailey's chinese herbs came yesterday!!!
I have to put them in capsules myself as new ruling in the uk since April is that they can not come in tablet form..
Quite funny really me sat there making up these pills... Looked rather dodgy....

It gave me a sense of helping Bailey more than the normal....

Such wise words from every single one of you, & knowing that you all totally understand.
I guess being surrounded by people that don't was having an effect on me..
I certainly can't blame them for that...
Although the one that sticks in my mind the most is " It's all the fast food these youngsters eat nowadays"

They don't know that my kids eat very stable diets!! It's ignorance


Regards operations Whereisjoe
Bailey hasn't had any yet, only 2x scopes, next one is November 3rd.. Because Bailey is not getting any relief from Infliximab they want to see what's going on..
I know we are lucky that he hasn't yet, & hope he never does.. but i know that is prob going to happen one day.. He has CD from mouth to Anus, & the nurse specialist has talked about Colostomy! Bailey said " He would kill himself" So cross that bridge when/if we ever get there....

I asked about stem cell therapy & his Nurse shrugged her shoulders!!!
So will research myself.. Thank you Dexky x

Well it leaves me to say Thank you to each & everyone of you as you have given me the strengh to get on with it.. Keep on being the best mum i can be, & remain strong, but also if i feel like shedding a tear... It is aloud x

Love
Clare
xxxxxxxxx

 

[Brian'sMom]

Clare,
It's Ziggy and Effdee on this forum that have done stem cell transplants successfully. They see Dr Richard Burt in Chicago. It would definately be worth your time to read their threads.

 

[dannysmom]

+1

I came across an interesting quote recently:

"We don't cry because we aren't strong. We cry because we have been too strong for too long."

Love this quote!! (I instantly cried when I read it.)

Hi Clare. We all feel like you do ... some days are worse than others. This forum is so supportive.