Ulcerative colitis

[Dolphins23]

Hi just wondering if anyone claims PIP for ulcerative colitis?

[Yorkshirebornandbread]

Hi Dolphin, have you got any further with this? Am trying to help someone with exactly the same situation.

[MunsteadWood]

www.crohnsandcolitis.org.uk/about-inflammatory-bowel-disease/publications/claiming-personal-independence-payments-pip

[Dolphins23]

Yorkshirebornandbred no I haven't got any further with this yet, they declined the first time trying it but hopefully will try claim again once have more information

[SchadenfreudePersonified]

DH has just been diagnosed with ulcerative colitis.

Can anyone suggest where we could go for help or advice on managing the condition? He was due to have further tests in April, but they have been postponed until July. At one time I would have found this reassuring (ie hospital didn't think it was anything more serious) but the state of the health service now, I just don't know.

He has lost loads of weight, and TBH we are both worried that it is something even worse.

[ShakeTheDisease]

Hi Schadenfreude, was your DH an inpatient at all or seen as an outpatient? There should be specialist bowel disease support nurses who would be able to talk to him about managing his condition - if you've been admitted they will often come and see you on the ward, but if not you may have missed them. Contact the colorectal team who your husband is being seen by and ask about meeting with a specialist bowel nurse for advice.

[SchadenfreudePersonified]

Thanks for your reply Shake - he is an outpatient. He's had a colonoscopy (which was when the colitis was diagnosed) and is waiting fro further blood tests from the GP. The tests that were postponed involved a further colonoscopy (I think). He is severely anaemic, has terrible stomach pains and of course, his bowel habits have become very urgent.

I've downloaded some info re: suggested diet etc from the internet, and details of local self-help groups.

I'm really worried about him because he's very depressed, and that isn't him at all. It's not helped by that fact that he's the same age as his dad was when he died.

I'll let him know about the colorectal team/bowel nurse. I think that one of the things which is depressing him is that he feels he has no control over his condition. Thank you again.

[MunsteadWood]

Hi OP, sorry to hear about your husband's diagnosis. I have Crohn's disease, which is similar to UC and well remember the worry and confusion of receiving a diagnosis.

The PPs suggestion of asking if your hospital has a specialist bowel disease nurse is a good one. And if you've not already I'd encourage you to contact Crohn's & Colitis UK which has lots of information on the condition and treatments plus phone line for support, a big community of others affected by the same conditions etc.

Has your husband been given any treatment (medication etc) following his diagnosis?

[MunsteadWood]

I meant hi Schagen! Not OP. You know what I mean!

[SchadenfreudePersonified]

Hi Munstead

Thank you for replying - this thread ended up near the bottom of my list and I couldn't find it.

Thank you - yes, he has been given some steroids (I think) which have helped a lot, and we are being very careful with his diet, which has also helped. He is suffering neither the frequency nor the urgency he had been - the urgency in particular was worrying him - and he had had an "accident" (fortunately he was at home) - h was terrified that something would happen publicly

He's been in touch with the bowel disease nurse, and she and his GP have contacted the specialist to see if they can get his colonoscopy examination put back to its original date (he had an appointment for April, but it was postponed until July).

I have suggested that he contact Crohn's & Colitis UK, and also a local support group, and said that I'll go along or not, whatever he would prefer, but he isn't keen on this.

Thank you again for taking the trouble to respond. I appreciate it.

[MunsteadWood]

Great to hear the steroids have helped, fingers crossed he continues to feel better.

Totally understand he might not wish to contact CCUK support services at this stage - that kind of thing is not for everyone. He might want to have a look at the charity's website though - they've got loads of brilliant information resources that he (and you!) can read to better understand what's been happening and what his options are.

[WeeDangerousSpike]

Hi Schaden, so sorry to hear about your husband it's a miserable disease.

I find stress a HUGE trigger for a flare, so that's something to keep in mind long term. Hopefully the steroids will help and get him into remission which can then be maintained with other drugs.

Colitis & Crohns UK are good for advice, they have a list of leaflets here I found the ones for employees / employers very useful to use to make work aware of what I was dealing with and what their obligations are. Often people hear IBD and think IBS, which isn't helpful.

Also, he's disabled under employment law, and has the protections and rights that gives.

My local hospital where I'm under gastro care has a phone and email line to the specialist nurses, which is very good, and they can help with adjusting medication and advice without having to get a hospital appt.

Also he can get a radar key.

Best wishes to your husband.

[SchadenfreudePersonified]

Munstead and Spike Thank you - I've bookmarked the page and started a bit of reading.

We're retired , so employment law doesn't come into it, but it's a useful thing to know if I meet a younger person in a similar situation.

Also . . . what's a radar key?

[MunsteadWood]

Gives access to disabled toilets! Locked ones eg at train stations. I rarely use mine but if having a flare I find it really comforting knowing I can access a toilet more quickly, and have a bit more privacy too (rather than worrying about people in the next stall).

Wishing you both well and hope your husband continues to feel better.

[SchadenfreudePersonified]

Munstead

That would be really useful!

DH was very reluctant to leave the house as he was terrified he would get caught short (and it's not like just wee-ing yourself - and that's bad enough).

How do you get a radar key? Do we need a letter from the doctor or something?

[newroundhere]

SchadenfreudePersonified just wanted to say that my mum was diagnosed with Crohns last year and dispite her misgivings (and not liking new social situations) she actually found the local ccuk meeting really useful and she's planning on going again. She has even joined Facebook just to find out when the next meeting is! So it's worth considering giving your local support group a try even if your husband doesn't think it might be for him. My dad went too so it might also be useful for you.

As a side note my mum's diagnosis has been really poorly managed and it's v difficult to push the various hcps to understand the treatment and next steps. But I'm still hopeful that with a diagnosis there is some prospect of an effective treatment to manage the symptoms - my mum suffered undiagnosed for years

[WeeDangerousSpike]

You can just Google buy radar key and lots will come up. I can't remember where I got mine from but I just had to choose colitis from a drop down.

There's one here from age uk that comes with a card to show if you need to use a loo in a shop or somewhere without a customer loo

[SchadenfreudePersonified]

Thank you Spike

[MunsteadWood]

I got mine via Disability Rights UK but as spike says you can get them from loads of places.

Crohn's & Colitis UK also have a card (called the "cant wait card") which you get if you join as a member.