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complicated Crohns Disease - Carers UK Forum

complicated Crohns Disease

Tell us a bit about yourself here.
Image Newbie looking after someone with Crohns Disease which led to Colostomy and bowel operations from having abcess drained.

Would like to hear from other sufferers or carers dealing with
Living with a Stoma and feeling run down?

When carer is not well who do you turn to for support at short notice?
Hiya and a warm welcome to the forum.
Hi Lulu and welcome Image
Hello Lulu and a very warm welcome from me also Image

I dont have any personal experience in this area, but I like your question about where to get support at short notice when you are not well yourself. I guess some of us have some kind of contingency plans. As for me, I struggle on the best I can. If I can.

Sorry you are feeling run down right now. Have you options for support ? Have you asked anyone / anywhere for help at all ?

Its really good to have you with us, Lulu. We like new faces, and always plenty of friendly and supportive folk here. Many of us feeling weary but doing our best. Make yourself at home...

Robert Image
Welcome, Lulu, to the Forum. You will find lots of friendly faces offering support and chat here. Makes caring much less lonely. Image

I don't have any specific experience of what you are going through either. However, your question is one that strikes fear into me. If I don't cope, there is no-one. The other relatives are close to useless; maybe they would be like teabags and get stronger in hot water?? I really hope I don't have to find out. Like Robert, I struggle through (was a challenge when I had shingles ...). Do you have any support from Social Services? If not, ask for a carers' assessment and get their advice is all I can suggest.

Looking forward to hearing from you, Anne x
Hello Lulu ,welcome aboard.
If you want to p/m me I will try to help.I have a pemanant colostomy ( I'm the carer ) but I have days when I think I should be the caree Image
thanks for the chat glad there is someone I can talk to
do you have any bad days and what do you do to give yourself an uplift
Did you have bowel surgery cos my husband did which he is still recovering from
it it a complete life change for him and a challenging one so I can understand
why he gets the mood swings now so I keep out of his way when that happens
we both have our hobbies and are in touch with friends but they do not know
the full extent of his daily battle with life
This is the thing about this kind of condition , it doesn't make easy conversation.Most of my friends haven't got the slightest idea about how bad days can go , so I am not surpised your friends don't know.A lot people struggle with the topic as it makes them uncomfortable , but if you have close friends who come to the house ? it may be worth trying to explain how your husband worries about things like having a leak from his pouch, changing while he's out in public etc- open up the topic so it's less of a white elephant in the room.He may even be afraid to have friends in the house or be less eager to go out.
I learned a lot from reading websites and posting on them www.ostomates .org is a great one.It has archived posts for those questions everyone asks.It takes a lot of coming to terms with so I'm not surprised he gets moody , it's such a big life change.There's plenty of men on the website he can chat to about they feel about it too.
best wishes