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DH has Crohn's - want to understand and needing some support myself

(5 Posts)
Whydoikeepdoingthis Fri 07-Oct-16 18:40:49

Obviously he's the one who has just been diagnosed with Crohn's and he's devastated and it's his body and life and he doesn't want to be stuck in bed ill.

I just need some help in understanding it and knowing how to cope.

We have 2 children aged 4 and 3 months. He eats and drinks loads, always has, it's his job, and shows little sign of changing. He's also overweight. Recently diagnosed with Crohn's after us both thinking he just had a dodgy tummy and me thinking he was just tired all the time due to poor diet and lack of exercise.

Since he's been diagnosed he's had 1 flare up which he's in the middle of. He hasn't started meds yet. He takes himself off to bed for a day or so and then is in and out of bed for a few days with exhaustion and pain.

Thing is I just don't really understand what is happening and how he feels. I'm also selfishly being left with both children and am exhausted myself. Because he hates being in bed and I'm making him feel guilty he's angry and depressed. He audibly sighs and moans - sometimes if I'm honest I think oh just stop that we know you're ill.

I'm worried about our future and our children.

How can I manage his flare ups and how can I understand it a bit better? How can I support him and how can I manage myself when he has flare ups? Is it related to what he drinks? Last flare up was after a big booze session but he refuses to believe it's related.

I want to be supportive but I feel depressed about the whole thing too...

Any help or advice would be appreciated X

Whydoikeepdoingthis Fri 07-Oct-16 19:04:57

Not sure if this is in the right place!

Whydoikeepdoingthis Sat 08-Oct-16 06:00:41

Just bumping this - can anyone help?

Placebogirl Sun 09-Oct-16 02:23:57

Hi--sorry, this is my first ever post, but I swear I'm genuine and it sounds like you could really use some help. I have crohn's. I've been diagnosed for nearly 15 years, and had symptoms for over 20. I've been VERY lucky, in that after my first big flare, I've not had another (touch wood), so the ways in which it affects my life are relatively minor. I've married, had two children (albeit by c-section), hold down a job, am working on a PhD, get to the gym regularly etc (but I do have a VERY supportive DH).

The beginning of life with crohn's, though, is--frankly--a headfuck. Your DH will be going through the stages of grief, including denial, which is a big one, and which most of us with crohn's come back to periodically. You probably are too, it means life isn't going to be as simple or as easy as you thought. I can't give any predictions about what your life will look like, it depends on the progress of your DH's disease, and that is entirely individual. Some people will be like me, one big flare and not another for years (I did have surgery for it though), others will have lots of trouble. The one thing you can do now is do some reading yourself and encourage DH to do the same; did they give him anything to read at the clinic where he was diagnosed? It also sounds like he needs to be on medication; if he is having pain and exhaustion his crohn's is not under control and that needs to be addressed. When does he next see his gastro team? Why is he not on medication yet? The right medication can help.

As to food and drink--it doesn't cause crohn's , nor is there scientific evidence it can cure it. What is true, though, is that each individual with crohn's is likely to have foods and drinks that make them feel worse, and that list will be longer when the disease is uncontrolled (as your DH's is now) than when it is under control. No way could I drink booze when I was sick; these days I am partial to a glass or two. Equally salad greens when I was sick were anathema, now I bloody love them. The only thing I don't eat now--and this is my personal crohn's and not a recommendation--is meat. I also limit popcorn and corn on the cob, because I know they irritate my system. The way to find this out, for your DH, is to keep a food diary and note what he has eaten when he feels crap. Lack of sleep may also affect him in these early days--it did me, but these days I am the worst night owl ever.

Finally--if you can, go with your DH to a few of his gastro appointments. It will give you the chance to ask questions and understand what is going on; it will also help you be an advocate for him if he needs it.

Be kind to yourselves, this is a hard time. flowers

Helpisathand13 Mon 10-Oct-16 23:01:03

Hi my DS has crohns diagnosed aged 14. Spent much of year 10 off school with flare ups, hospitals, medication trial and error, scopes up and down, scans etc. After about 18months things started to settle and he became more aware of his toilet needs and habits and listened to his body. He needs to open his bowels before and after every meal and that has just become his norm. We joined CICRA which is a crohns in childhood organisation and they were really helpful and supportive. We had difficulty when transitioning from children's to adult services and getting the same level of service we were used to but that's improved. Medication is everyday dose for maintenance. He has vit D boosters and calcium daily. 6month bone dexa scans. 12 monthly scans and scopes. Sees the crohns consultant every 3months. It will never go away but he manages the condition exceptionally well. Early days for you and obviously a very worrying time. I hope DH finds the treatment quickly that works for him and keeps the worst of the condition at bay. Sending you love, strength and courage. You are not alone x

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