Mum with Crohn's & depression

[Weeze83]

Hello,
I am new to this forum, and to Crohn's in general. I would like some help and advice as my mum is really struggling with her Crohn's diagnosis, both mentally and physically.
A brief introduction: About 7 months ago my mum - aged 73 - got diagnosed with very severe Crohn's in her large bowl. She had been fobbed off by her GP for about 6 months previously with "IBS and you're getting old". She had never ever had any Crohn's symptoms before this all began about 18 months ago. So my brother paid for her to get a private consultantation and they immediately ordered scans, a colonoscopy and many other tests and Large Bowl Crohn's was quickly diagnosed.
From that point it has been a downward spiral of trying medication, diets, etc. Mum has only got worse and last week her consultant (now treating her on the Nhs) has told her there are no more medical options, surgery is her only option. They have recommended a Stoma, but so far she is saying she will not have it.
My mum has gradually fallen into a deep depression and I think she has given up. She has lost so much weight, she doesn't leave the house, she won't eat and it's like her whole personality has changed. My dad is looking after her the best he can, but he feels totally helpless.

Please could anyone offer any advice on my situation. I am so scared of losing her, and I feel like I already am. She is in so much pain, she feels sick all the time and is incredibly weak. Her age doesn't help, and my whole family are very scared of her getting any sort of flu or infection, which at the moment could have very serious complications. Her consultant has very sternly threatened to admit her to hospital to tube feed her unless she eats, but I don't think even this has scared her enough to act.
She has lost all fight, all determination to get through this, she really has given up. I don't know what to do.

Thank you anyone who can offer any advice, or who might be in the same situation.

 

[ronroush7]

Hi. I am sorry for all she is going through. She should get a flu shot if she hasn't already. You mentioned serious complications. It could make her Crohns worse if she catches the flu. Maybe she needs to talk to someone professionally to help with depression. Let us know how she is

 

[my little penguin]

Sending hugs your way
Has she tried enteral nutrition?
Basically formula only for 6-9 weeks
Modulen is in the U.K.
Or boost etc..
You drink nothing but formula no food and tends to heal the gut similar to steroids
But no side effects
What meds has she tried so far ??
There are a lot of them

 

[Weeze83]

Thank you both for replying.
Mum has had a flu jab, but we are worried about all the other strains and bugs that turn up in the winter. I have tried to suggest Counselling, but she is proper "old school" and doesn't believe in it. She is in complete denial about her condition and won't even properly admit she has Crohn's.

She's been prescribed a supplement drink 3 times a day, as well as 3 small meals, but I don't think she's telling the truth about whether she's keeping to that regime or not. Her consultant has been very stern with her but it doesn't seem to have made any difference. So far she's had Prednisone - 3 large courses - so she can't have any more for the foreseeable future due to the increased risk of osteoporosis (increased due to the fact she's 73). It did help, but she can't stay on it. She's been on Methotrexate for 6 months with absolutely no effect. They then decided to give her 2 infusions of Remicade, to try and boost the methotrexate but this has completely failed as well, there was no improvement and they've postponed the 3rd dose as she's too ill to leave the house at the moment. She's also had various anti sickness tablets and Imodium etc.. she's taking paracetamol and codeine for the pain but they don't seem to be doing much.

Does anyone have any advice on how I can get her to admit her condition is serious? As I said, she appears to have given up completely and I'm terrified she going to get weaker and more depressed and then she's going to end up in hospital, and may not come out.

 

[n00b]

Hi there
Sounds like your Mum is really having a hard time of it at the moment.

I think everybody who is told they have a incurable illness takes it pretty hard (whether they like to admit it or not).
It must be even worse when you are of the older generation.

Obviously you care very much for her hence why you are so worried.

I would suggest a few things, the golden rules.

1) Just be there for her, people have to deal with things in their own way.

2) Explain that things can and DO get better with the right treatment. I know it does not always seem that way but it is absolutely true. Either drug treatment or surgery. There are lots of positive things to look at.

3) Also try to explain that felling low is another part of coming to terms with it. It is 100% essential that this is addressed. Has she or you mentioned this to your GP? Please make sure either your GP and/or IBD nurse are aware. Again there are many treatments available to get on top of this darkness.


Lastly, be positive.

Good luck with your Mum, Mums are amazing and in the twilight years we should all respect and look after them (and dads of course) for everything they have done for us.

Good Luck and I hope she gets on the right road soon.