How do you cope?

Crohn's Disease Forum

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Still waiting for a pedi gastro appointment for my daughter. Her symptoms seems to be getting worse, and I'm terrified she has crohns disease. She's worried about getting blood tests even, and it just makes me cry to think, if she has crohns, the meds/blood tests/ symptoms, on going pain. She was just calling herself stupid just now, and it tears my heart apparat. Im trying dairy free then wheat free, but I feel like her ongoing pain, even when she doesn't eat first thing, and has cramps, just didn't sound like food intolerance. I told her of its chronic there's lots of meds that can help, but to see her in pain, hurts more then crohns. And I feel like there's nothing I can do. Just wait for a pedi appointment, try diff diets, while being terrified that it's crohnic and that at 8, she has to cope with horrific pain.
How do you parents cope? How do you not break down and cry. I bite the tears back when she says she's sore but sometimes I just cant. I know if she has crohns, I've got to be strong for her, make her feel like its ok, but it's not ok! Shes 8! Why do I feel like I'm to weak to handle her having crohns? I just want her to be well.
 
Sorry to hear about your daughter i don't have much advice as i am in the same position i find it very hard not to cry a few months after diagnosis. I think the first few weeks were the worst. This forum has been a life saver for me as i realize we are not going through this alone. Take care . I hope you get some answers soon.
 
Sorry to hear about your daughter! I know how you feel, it took over a year to get my son diagnosed and it was incredibly frustrating taking him back and forth to the doctors and getting no where. Even my son said what is the point of going to the doctors. I hope you get some answers soon, even if it is Crohn's at least you will know what you are dealing with and they can start coming up with some sort of plan. My daughter is 9 and in the middle of getting tests done - she is a wimp :D when it comes to tests, so I am dreading that too. She cries at the thought of a blood test poor thing.
The emotions are hard to deal with, I do try to cry once the kids have gone to bed so that they don't see me. Things have got better - more good days than bad now. Good luck with the tests, hope your daughter copes well with them.
 
You feel the way you do Irene because your daughter is the most precious thing in the world to you and wish more than anything you could take it all away from her...:hug:...BUT even when you are at your lowest and most vulnerable you will be strong for her, you will be there for her, you will hold her in your arms, you will soothe and stroke her and you will hold her hand and her heart and you will do that because you love her more than life itself.

You will wonder where you will get the strength, you will wonder how you will cope (just as you are now), you will wonder how you will get through the endless worry, stress and dread but you will. You will stay strong through the waking hours but come night time when you have laid your daughter to sleep the tears will come. But every single thought, feeling and worry you have is normal, natural and just hun.

If your daughter does have Crohn's Irene I don't have to tell it will be hard but as time moves on and the disease is brought under control those feelings of dread and despair do start to fade. You settle into a new normal, it won't ever be like it was before but it is normal just the same. You suddenly find that you haven't thought about Crohn's for a whole hour, then before you know it is a whole morning, then a whole day. I don't know that it will never be the last thing I think of at night but hey that's okay.

I know it's hard when you are where you are now but the light and laughter will and do return. :)

These kids with IBD are so very strong hun. They never cease to amaze us with their tenacity, strength, compassion, intelligence, compassion, humour and warmth. We can't ever imagine them coping with what they have to endure and yet they do. They take it in their stride and move on. I often think it is we that have more trouble adapting to what has to be faced than they do, we feel it all so acutely and intensely. Believe you me Irene your daughter will amaze you, bless her...:hug:

Sending loads of love and well wishes your way!

Dusty. xxx
 
Oh I feel for you. My girl is three and were still trying to figure out IF she has IBD?
She has been ill since 6 mo. old. It is hard to watch.
But......................Things I've learn so far is
her amazing abilities to handle sickness is far better than me.
Her amazing smile she has when she's well.
Her compassionate touch she has for those who are ill.
Her inner strength far exceeds mine.
You might fear what the future holds but in time you will be blown away by what your girl will overcome.
Hang in there. :heart:Where all in this boat together. Just to bad I hate boats!:D

:kiss:Farmwife
 
Hi Sweetheart x You sound like such a wonderful caring mother..we are both from Australia so I don't have to send hugs far! My 9 yr old son was diagnosed with Crohns last week, I have gone through emotions - up and down all week, one minute I'm so positive and the next I'm crying in a heap...when my son wants to know if the kids will tease him at school..my heart breaks.

We will all go through emotions like this, its natural but as someone said to me last week, "you will have a new normal" and it will be fine xoxoxoxo
 
Just sending some hugs :ghug: It is heartbreaking to not be able to take away any pain from our children! :( But, as terrible as it was to hear the diagnosis, it was the first step in moving forward to better days! As was said above, I don't think the 'worry' ever completely leaves but, as she begins treatment and you begin to see improvement, the worry does lessen! :ghug:

Thinking of you!!!!
 
It must be so hard for you having Crohn's to fear your child will too. The first year or so, I cried everyday in bed - either before sleeping or early morning. I found it helped keep the tears away during the day. I also try to focus on the present, have a plan in place, think positive, and do something fun each day with your child.

AND ... this forum is a great place for support!
 
Hi Irene,

Hugs and hang in there. The waiting to see a doc is hard I know.

I wouldn't tell your little one too much about what you suspect or what to expect in the way of medicine or blood tests. Do your best to show her that you are confident she (and you) can handle whatever difficulties life brings. That is what you want for her in the long run - to know that she can overcome any obstacle and thrive. Helping her learn that lesson begins now.

Things I have found helpful over the past six years include writing/journaling, drawing pictures, working with clay - working with my hands to express those feelings in a concrete way. I asked my spouse to come along to medical appointments and share the load. I did my best to stay in the moment - to focus on what was real right now not what might happen in the future. If what was real right now was not so great, well then I tried gratitude since there is always something to be grateful for like having medicine and doctors to go to.

I know that many people who have a faith community find it helpful to share their worries with their minister or rabbi and to ask for prayers.

It is hard to see them in pain and feel helpless to fix it. Practical things you can do to help combat that sense of helplessness will keep everyone feeling better.

Try to keep a normal schedule as much as possible. Go to school, after school activities, church - whatever you usually do - as much as possible. Do not keep her home if you can avoid it and get her back to those activities as quickly as you can. Keep the whole family to it's usual schedule of bedtime, rising, etc. even when she is not able to. This reassures everyone that the family will be OK. Reassuring her that the doctors will get this sorted out and get her feeling better without getting any more specific is best in my experience.

Do not warn or try to prepare her by giving her information about blood tests and such. Do not burden her with your worries or fears for her. She's too young for that kind of information to do anything but make her feel terrified of the future. I tried to keep this kind of information from my 10 y.o. son but it's hard for them not to hear at least some of it and I think I was not as careful as I could have been. I didn't discover until he was 13 or so that he was convinced he was going to die for at least the first year after his diagnosis because of some of what he overheard. I was heartsick.

I realize that your experience of Crohn's has been pretty bad so far. I imagine it's pretty hard not to expect that hers will be the same. But you don't know that for sure and if you can hold on to that thought perhaps it will help you through this time. After all tens of thousands of people with Crohn's live a normal, happy and full life. They have children, go to school, play and laugh and jump for joy. They may not do it every single day of their lives - but who does? If she does have Crohn's she may respond to meds fast (especially if they go to biologics quickly) and have a sustained remission which will mean she can avoid the kind of complications you are experiencing.

I hope this helps some and that you get answers soon. Waiting is hard on everyone.
 
So sorry about your daughter. I hope you get some answers soon.

I hate it every day that my son has Crohn's. I do cry. I have to release my hurt, anger, and frustration sometimes. I come to the forum for support. It is definitely not weakness. But then I pull myself together, find the strength and keep going. I think it's important for my son to know that it's okay to be upset, but he has to be strong in spite of those feelings. I can't take his disease away, but I reassure him that I will be there to go through anything that comes. I research the disease and let him see me very active in discussion with his Drs. school, etc. He knows that even though he has this to deal with, he is not alone. We can only take it one step at a time.

That being said, there are some amazing drugs. There are times when he is sick but there are times when he is in remission and he can live a "normal" life in most ways. We have learned to really appreciate those times. It is possible to deal with this and, just like farmwife says, you'll be amazed at how strong both of you can be. My son's strength and compassion blows me away, and it comes from dealing with this.

If you can get your hands on some Bentyl before her appointment, it takes the cramps away. We keep it on hand all the time. It's prescription that our GI gave us. When Ryan's cramps are constant, he takes it twice a day continuously until we can get to the office.

Sending hugs your way!
 
Just wanted to send some hugs. As everyone else has said it is hard but we are all in the same boat. We are here for you and will support you as much as we can. I know for most of us on here it has been a long rough road and we help each other as much as we can.
 
Thank you all so much for your responses. I just wondered how am I going to not cry if she has got crohns, seeing her day by day in pain. You all seem like such strong parents, and I truly appreciate your advice. I've only said to her, that she will need a blood test, but didn't speak of other tests, but she's afraid of even that. As far as meds, I told her that there are great meds, and she may only need an anti inflammatory, as many who get diagnosed early only do. As far as the biologicals, as one of you wrote... Last night one of the things she cryed about, was not wanting a needle in the tummy. And that's because I have humira fortnightly :/ so I just said there are many other medications. It's just heartbreaking to hear her say she's in pain. Or she tells me she goes to sick bay while the other kids are playing at lunch time. I just pray it isn't crohns.
Thanks again xoxoxoxoxo
 
Or she tells me she goes to sick bay while the other kids are playing at lunch time. I just pray it isn't crohns.
Thanks again xoxoxoxoxo

That's so sad x When my son said to me "what if the kids tease me at school" I thought my heart was going to fall out of my body!!!

Hugs x
 
I'm probably not the best person to talk of coping with my child's illness. As she is very recently diagnosed the emotional highs and lows on my end have been pretty hard. A friend did tell me, and it's very hard to actually do, to take time for myself. As a mom we want to be there and be everything for everyone. If we don't take care of ourselves we really won't be of any good to the people we are trying to support and be strong for. It helps me to know I'm not alone - there are people, like the incredible people here on this board, who do understand and who want and are willing to help you and your child. Our doctor has told us this many times over the past few weeks and I'm starting to understand: "these things don't happen to people to punish them, but to enable them to be stronger and to overcome more than they, and you, ever imagined."
Maybe I'm being naive but in my heart I have to believe that in some way going through so much pain and sadness will enable Ellie to do things and help others in her life that she never would have otherwise.
Sorry if I'm rambling....I feel your pain :)
 
NMmom is so right! While I really hate it that Ryan has Crohn's, I am so very proud of the person he is becoming because of it! The strength and kindness he possesses was always there, but this really made him use it! If there could possibly be a silver lining, that would be it.
 
I am so sorry to hear that your daughter is unwell. Watching my son go through this is definitely the hardest thing I have ever had to cope with. I have found this forum a great help when I am feeling down. I also have found it helpful to have a good cry now and then (when the kids aren't around), go for a run (a great way to release some fustration) and I also sometimes try to escape the reality every now and then by reading a really good book or watching a good show. Obviously, none of these things change the situation but they do make me feel better in the short term which allows me to face all of the challenges this disease throws at us a bit better.

I really hope you get some answers soon. :hang: You can do this!
 
Our children seem to cope a LOT better than us parents. It's so emotionally painful to watch our children physically suffer. You would think I would have gotten used to my son's illness by now, but I have not. My son is now 30. He has had the disease for 15 years and I still cry almost every day about it. It took two years for the doctors to come up with the proper diagnosis. I am still basically my son's care taker because although he no longer lives with me, he is not married and I am the only one he can turn to when he needs help going through his flare ups, testing, surgery, etc. which sometimes feels never ending. I can't believe how strong these children really are. My son has tried to live a normal life and has succeeded considering his disease is so severe. He has constantly reassured me over the years that he will be/is OK. Of course, he was a lot older when he was diagnosed then some children, but it doesn't make it any easier as a parent. I can't offer much advice besides praying for the best. I sometimes think it is harder when you have an older child with this disease because they are old enough to make their own decisions regarding their treatment and a lot of times, it's not the route you want them to take. I have to believe, with all the research being done these days, that there will be a cure in our lifetime and we will no longer have to see our children suffer. Best Wishes and prayers to all the parents and children dealing with this horrible disease and also to the parents who have not gotten a true diagnosis yet for their children. Just know that you and your child are not alone and we are all here to help each other cope.
 
Sorry to hear about your daughter its hard to watch our kids in pain, my son is 12 and has just been diagnosed with CD, the doctor says he will probably need surgery which i am terrified about. Like you it breaks my heart when he goes through these horrible pain spells, I just feel so helpless and it's hard fighting back the tears. I just wish I could take the pain away from him.
 
my son was diagnosed with CD in october of 2011. I wish I could say its gotten easier for me, but it just hasn't. He takes it, for the most part, in stride. Except every other Friday when its time for the dreaded Humira shot! UGH! I hate it too. I'm tired, I'm mad, I'm everything under the sun! Helpless, hopeless, heartbroken. I cry every time I give him the shot. We've never kept the truth about this disease from Coltyn. It seems to make it easier for him to stay strong about it. We know what we have to do and we do it, not with happiness! But it gets done. This disease sux! I wish the best to all of you! I pray they find a cure and no one has to ever go thru this again!
 
Thank you all so much!!!!
KTA...wow, 15 years and you still cry every day :( that was how I felt a few days ago...like if it is crohns, how am I not going to cry every day, watching Jas in pain. I feel for all of you, coping with your child having an ibd. I think because I have crohns, is why I am just terrified of jas having it. I just hope if she does, then she'll be able to be on a med which keeps her in remission, and not need surgeries. I can only imagine what those of you, who's children need bowel recsections go through. I've read about children by the age of 8 (my daughters age) needing permanent colostomy bags, and that horrifies me. Thank you all so much for your support.
Update is that we are trying dairy free, then wheat free, in the hopes her symptoms improve. At the very least, I'll be able to tell the pedi that we at least tryed that, as well as laxatives ( a gp suggested even though she goes to the toilet regularly, that maybe she just needs to go more, and she won't have pain in her bowels then), though this didn't seem to improve things. Anyway, best wishes to all of you wonderful parents. xoxo
 
Hi so sorry you are going through this. Lucy was diagnosed with Crohn's 15 months ago at age 2 and to say it was the worst day of the my life is an understatement, when the GI delivered the news to me I felt the panic starting at my toes and working its way up my body and I just broke down and cried and tbh while I havn't cried every day since I have cried lots of them. I have come to realise that crying is normal response because it is so upsetting to see your beautiful child that you want the absolute best for in pain day in day out, it is normal because you know someday they will be controlling their own crohns and you worry that they wont do it right, its normal because you want your child to have a perfect life, its normal because you dont want your child to carry this cross... it goes on. Having said that Lucy amazes me every day, she knows all about her Crohn's and she says cute and funny things about it (that makes me cry too) and she has accepted it as part of who she is as have my other two children... all of this has helped me in accepting it too and it has become somewhat normal in our lives now.

When she tells me her Crohn's are awake or when I hear her telling her teddy bear about them (she thinks they are little beings living in her bum!) or when I hear talking to them telling them to stay asleep for today I think I die a little inside and the tears come I just make sure she doesnt see them or if she does see them and ask me why I am crying I tell her there is something in my eye.

My advice is talk, talk, and talk some more to anybody who will listen, the more you talk about it, the more normal it becomes and I promise the day will come where you are able to say your childs name and Crohn's in the same sentence without breaking down. I have cried with just about everybody I know and everybody I have met for the first time in the last year but now 15 months on I can have a conversation without breaking down (just about). Crying helps us cope as does talking as do the wonderful people on this site who always take the time to read and answer posts.

I wish you the best.
Polly:kiss:
 
I want to agree with those who have said a good cry does you wonders! Last night (on day 2) of my son's EEN when everyone was in bed, I just broke down..I really let it all out, I grieved for when he had the "healthy label" and I grieved for him now having this disease. It hit me all of a sudden, I had the biggest cry....I now feel more positive that we are not alone and reading comments like all of yours makes me feel reassured xo
 
Polly 13- thank you for reminding me its normal to cry. I just feel weak. Like today... Jas was yelling, getting upset, i was telling her not to be rude (we had just been shopping in public), raised my voice saying 'I'm your mum, im supposed to teach you to be polite', at the time, my own crohns is flaring, I felt like yelling at her, to say just because your sore doesn't mean you can talk to me like that!' then I felt horrible for thinking that way, because she's 8, and even i get easily frustrated when I'm in pain. Then I just kept thinking, it's crohns, how am I going to cope? Her symptoms are daily now. Then I feel like I should be telling her soothing things, and instead, I just broke down crying, telling her I'm so worried about her stomach. That's probably the last thing an 8 year old in pain needs to hear, so then I felt like a bad mother, and just cried some more. I'll try to speak to my sis when I have a crying fit the next time, like you suggested polly. Because I don't speak to anyone about how worried I am. Isay to some people, I'm really stressing about her stomach aches, but I haven't had a cry about it in front of anyone. All I kept thinking today, is if she has only half as bad of a tummy ache as I get with crohns, already I'm horrible if I tell her off for getting upset. I feel like I measure how good a parent I am, by how happy she is with me. And with her having tummy aches daily, I feel like I just make her more upset when I tell her off, then feel like a bad mum. Sorry to go on, it's just I feel like you mums must go through these emotions too, and everyone I speak to in person, would prob just think I'm being a bad parent, if I tell them that I don't cope well with how worried I am about her.
 
Also try to get her into to a pain management psych.
They can really help you and her figure out a plan for dealing/ coping with the pain she is in since this will be a life long thing.
 
I just wanted to add to be kind to yourself. The diagnosis is a real blow. This is a very serious, chronic illness. It's overwhelming how much there is to learn and deal with. It is all the stages of grief before getting to acceptance. It gets better, not always easier, but manageable and a new normal. Hugs to all.
 
Oh, Irene, I'm so sorry that you and your daughter are going through this. We all feel your pain as we have been right where you are now. Big ((((hugs))))! When my son was diagnosed it was all I could do to put one foot in front of the other each day. When you are in a waiting pattern....waiting on doc appts, bloodwork results, etc., you feel so hopeless and out of control. I find that I do better when we have a plan and I can work towards executing that plan. Of course, when the plan doesn't work and you have the rug ripped out from underneath you again, the cycle starts all over again. But we all get through it because we love our kids and will do anything for them. Don't forget that you are a mother and therefore have super powers :). Hang in there and lean on everyone here when you need to. Things will get better!
 
Oh God Irene you are not a bad parent, you shouldn't even think that, you are concerned for you lo, in pain yourself and doing your very best for her. It is really a balancing act with a sick child but you still have to parent them and raise them to be responsible adults, I find it much more difficult to dicipline or tell lucy off than I do the other two because of the Crohn's but I am learning within reason to expect that the same standards of behaviour from her particularly when we are out etc. Its ok to feel frustrated with a child also, we all get frustrated with our children that dont have Crohn's so it stands to reason that we get frustrated with the one who does, it is how we act on those frustrations is what matters, having a thought where your child is 'wrecking your head' is perfectly normal.

Hope you are ok today.
 
OH Irene....God bless you and your daughter. I just can't imagine what you go through being so ill yourself and now having to see your daughter deal with this. My sentiments go to all the parents with young children with this horrible disease. Hugs and prayers to all of you!

Like I mentioned above, our children are so special and deal with this disease so much better then we do as parents. My son, as sick as he is, always has me laughing with some crazy story dealing with his disease. Since he got diagnosed, he always has a funny story over something that happened during his colonoscopies. Whether it was him telling the doctor he better not poke a hole in his intestines and start looking at his chest cavity, or having an older woman in the recovery room asking why he got juice and crackers after the procedure and she didn't. It may not sound so funny, but he seems to always put a spin on it and has me laughing. I do still cry alot and always ask God why my child has to deal with all this, but I am also grateful and thank god that I was blessed with a child who does not see this disease/ world thru my eyes! I prayer that he never loses his sense of humor.
 
Thank you all so much!!!

Dusty....you wrote a while ago about our comfort zone being the home, and when Jas has said things like 'I hate myself for yelling' and such negative self talk, it was a wonderful thing to be able to tell her that, I understand if she's frustrated in pain, and that it's because she's comfortable with me, that she can allow that frustration out, and not to hate her self, because I love her no matter what. So I thank you especially for that , because it's so true! I could never just get totally over emotional with people I hardly see, where as, my mum and sister, are the ones that get the crying, complaining, when I stress about Jas, or anything in general, so it's so true we show our frustration to those closest. This I think helped Jas a bit too. I can't stand when she puts herself down.
Thanks again Hun! I don't know how you do it with 2 kids with ibd! God bless xoxo
 
Thanks hun. :hug:

I think we all need a place in the world where we can show our true feelings without fear of judgement and retribution and I like to think that that is what my children can do at home. Life is hard enough without the added burdens they have to endure and more often than not they are not seeking answers but an outlet for their frustrations and fear and validation from us that it is okay to feel pissed off. I have seen time and time again my children sound off, followed by a period of solitude and then things return to normal. I think it does for them what crying does for me, it is a release and it allows me time to recharge my batteries and face the world afresh.

Dusty. xxx
 
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