How do you cope with the anger and frustration?

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Traceyjo88

Joined
Sep 4, 2012
Messages
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Hi Everyone

I was just wondering if anyone can give me any tips to help me cope at the moment please? My daughter has Crohns (diagnosed Sept 2011) and the arthritis that sometimes goes along with it. She is currently doing her GCSEs but has had a lot of problems lately - she had two ops last year (for strictures) and as a result was off school throughout Nov and Dec. She is now on a host of meds which the doc thought would control her Crohns (aza, amitryptiline, gabapentin) and we thought that our bad days were behind us. She was recovering from her ops over the Christmas period and seemed well until this weekend when the diarrhoea started - then the swollen joints - then the stomach cramps.

It is so frustrating - this week she has missed a work experience interview, a filming session for her drama club and to top it all today - a GCSE assessment. She is really upset and we both feel that our lives are being dictated to us by this 'Crohns' enemy which flares up whenever it is most inconvenient. She is always missing out on parties and sleepovers and fun things that her friends are doing because Crohns decides to pay a visit at the worst possible times (or so it seems).

I am aware that I am angry and frustrated (I am ordinarily really organised and in control) and do my best not to show it, but sometimes I struggle and I fear that it sometimes sounds like I am angry and frustrated with my daughter - which I am not as i know she can't help it, but.....

I am guessing there are lots of others out there with similar experiences - how do you cope? Even better - has anyone found a way to manage the Crohn's flare ups so they impact less on your lives please?

Sorry about the moaning - I actually feel better now just writing this!

Tracey
 
You both need to grieve in a way. :frown:This is a chronic illness and a new way of life as you already know will have to be learned.
remission will take time to achieve.
Once it's reach it will be that much sweeter.
So many people take good health for granted. Our kids never will.
They will be stronger coming out of this but it doesn't mean in any way we have to like this blasted disease.
Support your girl when she's weak and laugh when she's well.
BTW, please remind me of these words when my 4 yr old is having a hard time.;)

Your doing a great job mom. Hang in there it will get better!
Hugs.
 
hi there,
Im so sorry to hear you and your daughter are going through this.
Me and my mum have gone through the exact same thing as i have crohns and have missed so many parties and events because of evil crohns.
Dealing with it is soooooo hard but as mum and i have learnt we need to be there for eachother. We often go on outings just the two of us to do something fun we both enjoy to take our minds away from crohns for an hour or so. Even just going for a walk is great.
Also make sure you take care of yourself as well. If you get to stressed it will make it hard for both of you.
When having a Crohn's flare up make sure your daughter isn't eating bad food. Stick to things easy to digest eg-bread,-banana,-chicken and dried crackers.

If she gets stressed a lot (which most crohns sufferers do) talk to your doctor about medication she could take. Also pain meds are a big help. Don't know if your happy for her taking that but there are lots of different medication to choose from. Even a naturopath i have heard are amazing. But really it is a lot of trial and error to see what works for you both. It will take time but you will both come out the other side knowing how to keep the flares manageable.
Also know everyone on this forum are here for you two and if you ever need advice this is the best place. Because it is almost certain someone has gone through what you are going through.
Keep your chin up all the best for you and your daughter just remember it WILL get easier once you find what works for you.
:)
just one more thing that helps me. make sure she gets out of the house everyday even if she is bed ridden. Even just sitting in the sun for 15 mins can make a HUGE impact on her mood.
 
Thank you both for the advice. To be honest, I know my daughter is not eating well at the moment and I tend to let it go when she is poorly, she is also bed ridden so is not getting any fresh air but you are right - food and fresh air will certainly help (though the sunshine is a rare occurence in the UK). I will have a chat with her about that and also the pain relief - it will certainly help more if it comes from a fellow sufferer rather than myself (as I am just nagging!).

I realise it is too easy to get wrapped up in the bad times and guess you are both advising to make the most of the good times which is a good thing to focus on.

I look forward to the remission period which hopefully we will achieve soon.

Many thanks to you both

Tracey
 
Hi there,

I was certainly in the same situation many years ago! I really don't know what to suggest other than inform you that the medications are much better and a lot more is known about crohns today.

I had to give up my morning, afternoon and sunday paper rounds, and lost the captaincy of many school sports teams too. it is rather life changing and i too spend most days housebound and exhausted from sickness/diarrhoea too.

I have a niece and great nieces/nephews just two minutes away in the car. i try and visit them each day if only for half an hour. I take my own loo roll/moist loo roll with me and they don't mind if i get caught short. One nephew is showing signs of something similar to crohns going on, much diarrhoea and stomach cramping. Tis sad cos he is also brilliant at sport.

Its natural that you worry for your daughter. We all suffer anger and resentment of this disease at times. That only normal.

good luck too you both and i hope she goes into remission soon.
 
Tracey, I agree 110% with everything farmwife said. She will go into remission. It just takes time to find the right meds etc unfortunately.
Devynn has also missed so much. Parties, sleepovers, etc. She gets very down sometimes. I get very down sometimes. But we just do our best to try to stay positive and live in the moment. Right now Devynn is doing well. She is enjoying being a kid. But a few mos ago, she was not well and it was hard.
(((((hugs))))) I hope she's feeling better real soon. There is nothing worse than watching your child suffer.
 
I don't think there's anything harder than watching your child struggle and suffer from this illness!!! Unfortunately, for some, it does take some trial and error to find the right combination of meds to maintain remission. But, once you do find the right medication, life will be so much better! :ghug:

I've added links to the success stories threads - it may help to read them at times to remind yourself and your daughter that things can and will get better!

http://www.crohnsforum.com/forumdisplay.php?f=72
http://www.crohnsforum.com/showthread.php?t=27079
http://www.crohnsforum.com/showthread.php?t=46697

I sometimes feel like a broken record :redface: but please do read up on Enteral Nutrition either 'exclusively' to induce remission or even as a supplement (there is no conflict with medications)! As a supplement, it will help ensure that she gets necessary nutrition, especially if she's not feeling well and it may help sustain a remission. It's wthe only treatment hat my son used to induce remission and as maintenance for over a year (it hasn't eliminated all inflammation, so we will be adding some meds, but it has kept things relatively stable all this time).

I hope things improve for your daughter soon!! :ghug:
 
Thanks Spooky1, sorry to hear that you had such a hard time when you were younger. I suspect we are pushing for normality and trying to do everything we would ordinarily do in spite of Crohns however, it is a battle we appear to be losing. Not sure we are ready to face it quite yet, but it may be that my daughter has to re-evaluate her expectations moving forward. I think the hardest thing is not being able to plan - she is in a drama club and this weekend they are filming a production that they have been working on - Devon will not be there. Last time she was in a play and was ill when the filmed assessment took place - it is hard to plan, but at the moment we still try to do stuff. the hardest part is the way she feels when she lets others down - I suspect that might be why you had to give up your paper rounds and captaincy. Thanks for sharing and I hope you stay well!

Tracey
 
Thanks Samantha, I am pleased that Devynn is doing well - beautiful picture btw! Hopefully remission for my daughter (same name - different spelling - 'Devon'!) will come soon and we can put this last couple of years behind us.

Many thanks for your messge and good luck!!

Tracey
 
I sometimes feel like a broken record :redface: but please do read up on Enteral Nutrition either 'exclusively' to induce remission or even as a supplement (there is no conflict with medications)!

Thanks Tesscom - I have never heard of 'Enteral Nutrition' so followed your link, but realised it is referring to Modulin which my daughter was put on when first diagnosed. She lasted five weeks but her arthritis pain became unbearable as the anti-inflammatory in the modulin wasn't enough to manage her condition so her joints swelled. I am interested to see that your son uses it as a supplement though - that has never been presented as an option and I guess would be good at times such as this when her appetite is not good. I must admit though, she hated the taste of the modulin even with the flavourings in so I am not sure she would be open to the idea. Certainly worth a try though!

Thanks for the success stories too, they really help - hopefully ours will be up there one day soon!

Best wishes

Tracey
 
Tracey, there are a number of kids here who do use EN as a supplement. My son uses a formula thru an NG tube because it is not a 'drinkable' formula (taste-wise), however, many of the kids here use Boost, Ensure, Peptamin, and others.

There are some formulas which are more easily absorbed and it seems that, due to the process of making it 'absorbable', it also makes it unpalatable. However, there's a balance to be found between NOT using the most easily absorbed and actually using a less easily absorbed. :) When we went on vacation, I took chocolate Boost shakes with us and my son was fine with the taste of these shakes. I know Crohnsinct's daughter used Boost throughout the exclusive period and, perhaps now??, as a supplement. my little penguin 's son uses Peptamin as a supplement and there are others.

If your daughter is willing to try the shakes, it may be worth a shot. :)
 
Hi Tesscom - I know she wouldn't like the chocolate shakes as she has gone off the taste of chocolate (unbelievable I know!) but if I could get strawberry or banana she might try it. The only thing is that I have never heard of 'Boost Shakes' - do you know if they are available in the UK, or are they known as something else maybe?
 
Boost is made by Nestle, so I'm sure it's available in the UK...??? Here is a link to a Boost site, it may help you locate a store...

http://www.boost.com/nutritional-drinks/boost-high-protein

Nestle also makes a nutritional drink called Breeze, I've read of some kids on the site using these instead of Boost or Ensure. Nutrition-wise, I believe they are comparable to
Boost or Ensure, however, they are more like a juice rather than a milkshake.

http://www.nestlenutritionstore.com...e-nutrition/resource-breeze-nutritional-drink
 
Thanks Jacqui - fruit punch sounds a lot better than my daughters description of the taste of the modulin :ysmile:
 
My Grace is on EN. It's been about a month already and she will be on it for awhile.
Even IF it doesn't bring about full remission, I love knowing at least she's getting all she needs for her body to fight this disease.
 
Second the adding en . EEN was not enough for DS either but we still supplement with peptamen jr which has made a big difference from a nutrional standpoint when he couldn't handle food . He still drinks 3-4 a day even when his is well.
What maintence meds do they have her on?
DS tried them all ( 6-mp, Mtx and finally remicade)
Once you find the right med then things really calm down and flares are less likely.
DS was poor from dx sept 2011 til sept 2012 when the remicade finally took over.
Things are great now .
Hopefully they will find a drug that works quickly for her .
Do they at least have her on pred ?
 
Hi Tracey,
You have been given great advice already but I just wanted to welcome you. My daughter is also 15. It is tough and there definitly is a grieving process you go through but hang in there! Hopefully once they find the right medication and she starts feeling better it will get a little easier. My daughter too missed many parties and activities and so much school that we decided to home school. It was actually a great decision and has opened up a whole new world for us. I am now thinking of homeschooling all my kids. There is so much less pressure. We have been able to take up many activities and joined some homeschool groups. We are also doing a lot more activities together which I am really enjoying. It is an option to consider if you can. The anger and sadness definitly take a while to get better but they do improve with time. Any other advice or questions you need please let us know.
 
Thanks Everyone,

?? Meds - Devon's meds have been a bit hit and miss - when the modulin diet didn't work she was started on prednisolone and methotrextate, but the methotrexate made her sick so after a few months she was changes to azathioprine, but that wasn't enough to control her Crohns due to the 'nerve damage' so now she is on Aza, gabapentin, amatriptyline and supplementary pain meds (paracetomol, codeine and tramadol when it gets really bad) - the next step will be infliximab I think, but that is expensive over here. We have three hospital appointments this week so hopefully by the weekend we will know more.

?? Schooling - We have had some support from the hospital via a tutor that comes in whenever she is hospitalised and can visit at home if needed - that has been a great help, but unfortunately permanent home schooling is not an option for us. However, our school has a Student Support Centre and when she is feeling poorly she can work from there where there are teachers to support her but she doesn't have to move from class to class - I think we are lucky in that respect.

Today is a good day though. I have just dropped her off at school and she is hoping that she will be able to go to all of her classes today - fingers crossed she makes it through today!

Thanks for all of the comments - it really does help to know that there are others out there facing the same issues - and I know many that are facing so much worse so I should be thankful for these good days! Hopefully I can stay positive - if she stays well this week I think a girly day on Saturday is called for as per your earlier recommendations tixbut!

Many thanks

Tracey
 
Hi everyone, just a quick question - Devon seemed really well on Monday morning - colour in her cheeks and she seemed almost hyperactive. By lunchtime the pains were back and she has been low since, this is not the first time I have seen this so I was wondering if anyone else has experienced these short bursts of energy? Is it the meds maybe?
 
Not prednisone - azathioprine, gabapentin and amitriptyline at the moment. Mood swings is a good description though as she goes from deliriously happy to angry to upset really quickly.

Tracey
 
from drugs.com
Some side effects are more likely in children taking gabapentin. Contact your doctor if the child taking this medication has any of the following side effects:

changes in behavior;
memory problems;
trouble concentrating; or
acting restless, hostile, or aggressive.
 
Oh blimey - thanks. She has an appointment tomorrow so will make sure to mention it. Never thought to check online! Thank you.

Tracey
 

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