te chrons suffering teen - some advice

Anthillmob

sorry the thread is locked. have you enquired about getting a RADAR key? very helpful for those 'caught short'/ moments. i have one and its a blessing.

you may also qualify for a freedom pass, enquire @ your local council. this will entitle you to free travel and then you can lose the car.

one other thing ive noticed, you state you live in council accommodation so why are your water bills so huge? all councils that i am aware of charge in the rent for water rates. mines approx £5 a week.

and one last thing, are your gas and electric on 'key/card' meters? enquire if you are paying off the previous occupants debt. tured out we were when we moved here. get off the card and keys and arrange a monthly payment scheme that is based on your usage.

cant say i agree with you not being able to work. there must be something and in this day and age companies have to be 'positive aboue disabled people'.

and can i enquire what arthritis you have? ive not heard of it. i am riddled with psoriatic arthritis.

NASA_2

This could have been PM'd rather than creating a thread for it.

LizzieS_2

No idea why it was locked, but if it was down to my post, I'm struggling to see why? I was looking at it from a financial prosective - income was insufficient to pay the main bills before the car. Shifting some-ones view of what is really essential is impossible sometimes. Anyhow the point I was making was that I personally would not want to be seen having an accident in public and would do anything to avoid someone else seeing (I do not have Crohns but I do have to go out of my way to avoid sudden heavy period bleeding at certain times, so from that perspective I do take avoiding action).

skipsmum

LizzieS:
You can't stop the accidents but you do still have to buy food and clothes etc. You have to go out.
I would never normally comment after a thread has been closed but I think your suggestion that a 19 year old young woman should wear nappies so that she can use the bus instead of a car is demeaning, cruel and ridiculous.
I hope your family never have to live with chronic disability, if this is the attitude they will come up against.

dogcat_2

I have ulcerative colitis....very similiar to crohns...I also have 'toilet problems'..and bleed when i 'go'..not nice at all. I sympathise entirely with the op. as regards to her condition. I do think that lots of people do not fully understand what the condition consists of. Also it can be embarressing...because it is a 'taboo' subject. Good Luck.

LizzieS_2

skipsmum wrote: »

LizzieS:
You can't stop the accidents but you do still have to buy food and clothes etc. You have to go out.

Exactly, which was my point. Some-one suffering frequent embarrassments will begin to become more reclusive when the disease flares up.

I would never normally comment after a thread has been closed but I think your suggestion that a 19 year old young woman should wear nappies so that she can use the bus instead of a car is demeaning, cruel and ridiculous.

I didn't suggest the nappies instead of the car, I suggested nappies as accidents could happen anywhere at anytime irrespective of if she had a car or not - a method of sparing blushes whilst no-one else is aware of what you are wearing.

I also suggested some alternatives to the car as a means to saving costs, which is something she herself said she needs to have more cash spare for her bills.

The age is a double edged sword - on the one hand she will feel more self conscious than say an 80 year old, but in this cruel world of Joe Public she will more likely come across people belittling her (as opposed to the older person) for having an accident in public.

I hope your family never have to live with chronic disability, if this is the attitude they will come up against.

I'm sure they would prefer practical suggestions to help get them out and about.

It was practical and the best alternative I knew of to avoid someone else seeing an accident, while still having the freedom to get around and join in day to day events without anyone else knowing.

I had initially thought of the incontinance pads - these being of similar size and shape to thousands of sanitary towels sold every year, I wasn't 100% that these would be as effective.

zzzLazyDaisy

I have severe crohn's and if anyone suggested nappies to me as a potential 'solution' I'd have some choice words for them. Does anyone seriously think that if an adult was wearing a nappy they could just mess themselves and no-one would notice? What a disgusting thought.

Also, crohn's isn't just a bowel disorder as some people seem to thing. It is a chronic and potentially life threatening illness. It is an auto-immune disorder in which the body's immune system attacks itself. This manifests as flare-ups, not only in the bowel, but also in the joints, eyes, and skin.

Flare-ups in the bowel can lead to ulcers perforating the bowel wall, adhesions which cause complications with other internal organs, fistulae (where the bowel attaches to the abdominal wall, and faeces seep permanently though the hole that appears - even worse the fistulae can be into the vagina or into another internal organ). Abdominal abcesses are also common with frequent flare-ups.

Frequent flare ups of the joints cause lasting and permanent damage, arthritis of the spine is a very common and disabling side effect of crohn's as people get older. Flare-ups are often treated with high doses of steriods to damp down the immune system and ease the pain, which leads to osteoporosis in later life.

People with crohn's cannot take neurofen, ibruprophen, or non-steroid anti-inflammatories, and have to be carefully monitored if taking co-codomal and other drugs containing codiene. This means that the arsenal of pain relief normally available for joint pain / arthritis is not available to people with crohns.

I speak of personal experience of all the above.

Sorry, rant over

bestpud

There is a big contradiction here imo but perhaps I am missing something...

Have I got this right?

Flare ups are so bad that people with the condition literally have to go at a moments notice, or face changing their entire set of clothing, and being very embarrassed. So, it could happen anywhere that is more than a few seconds away from the nearest toilet?

If I have got that right, then surely, as embarrassing as it would be to have an accident in a pad, it would be far, far better than having one in normal underwear and trousers/skirt?

allison445

A moments notice would be nice for severe cases you dont even get that.
As a sufferer who does work i manage by wearing pads, not eating much and pain killers.

zzzLazyDaisy

Yes, flare-ups can be that bad, but to be honest you would probably be so ill at that point that you would be unable to leave the house anyway, as acute flare-ups are often accompanied by fever and inflammation in other parts of the body.

But even when you are relatively well, there is always a risk of an accident. I have always carried a spare set of clothes in my car. I have had experiences where I felt fine, but was taken ill while out and had to get back to my car quickly and get home. I certainly could not have managed with public transport. And I certainly would not consider wearing a nappy on a daily basis in case I might encounter a problem, to be an option.

However, the point I am making is that sometimes well meaning people generalise and try to come up with 'obvious' solutions to other people's health problems, without any real understanding the nature of the problem.

Oldernotwiser

zzzLazyDaisy wrote: »

However, the point I am making is that sometimes well meaning people generalise and try to come up with 'obvious' solutions to other people's health problems, without any real understanding the nature of the problem.

And sometimes people who have a problem are too close to it to see the various options, whereas an outsider may be able to take a wider view.