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Hi

I recently been told by my gp and consultant that I have Behcets. I am currently suffering with genital ulcers that go right back to my bum area. I am really struggling to walk as the paint is agony I have been given the gel so I can urinate but I am in and out the bath etc...

I also have no it's and sores up my nose and my mouth is full of ulcers too.

All these things are in the last three months but I have been suffering with my bowl for the last 8 years having been in and out of hospital and tests as consultant thought I have cRohns disease or colitis but not enough evidence to prove. I don't sleep well at night my legs hurts and ache when still, along with all this I am really exhausted all the time to the point I could fall asleep doing literally anything. It really is taking its toll on my family and married life too. I struggle daily to care for our three children having to have family help each day especially now with the ulcers been worse than ever.

I am 28 but feel 30 plus older I am waiting to see a Rheumatlogist but my appointment isn't for another 7 weeks I have had no joy trying to get my appointment earlier. I am not sure what to do everyday is a struggle especially simple things plus the kids. Does anyone have any advice what I can do or where I can go in the meantime.

5 Replies

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  • Hi, when my daughter gets really bad we usually wait until the doctors surgery is closed then go to the out of hours doctor who normally when she is bad enough they admit her into hospital for a few days on IV steroids and then out again until the next time, if you cant do this its the A and E, hope this helps a little. x

  • Thank you, This flare up has been going on weeks it baits down a bit never goes but comes back worse , I went to a n e they basically told me there is nothing they can do, my gp's not very good with appointments so can't get in until next week, came out to see me last week and basically it was a pointless visit she just said I need to wait for my appointment that isn't the end on oct and us the gel to numb and help help me go to the toilet.

    I feel likebim at a loose end no where to go.

  • What is the specialty of the Consultant who told you that you have BD? If that is the conclusion of him/her and your GP, then what medication have they put you on? If the answer to that is none, then I would question their knowledge on the subject! Me personally I mean, if it was me, not that I think you should. If you get in touch with the Society they will be able to advise you, or you could phone your current Consultant's Secretary and explain your situation and ask for an urgent appointment or at least some advice from the person who diagnosed you. If that person was confident that you have BD, then they should know at least how to treat it over all, eg, with steroids, if they suit you, to damp down your symptoms until they can be treated systematically.

    Bathing your genital area with a soluble asprin solution (as long as you have no allergies and don't mix it with anything else) about every four hours can help to damp things down, as can gargling with soluble aspirin for oral ulcers - don't swallow.

    You can also use asthma inhalers to spray them. There is a nasal spray that helps, I think it’s called beconaze but not sure. You would need to get those on prescription. If your GP or consultant doesn’t know about these things they can find out on the Society website. Wear fresh cotton underwear washed separately from anyone else's clothes in non bio/sensitive washing agents. If you can go commando try that too. Anything that comes up against your skin, such as knicker elastic or crinkled material or even trapped sweat can aggravate. Sleep in cotton sheets washed with the same washing agent and also wash towels and flannels exclusively for your use with it, and use a fresh one as often as you can.

    If you have a bidet p in that whilst running the water. If not, P in the bath just as you are getting out - or if you have a shower head run that gently over the affected area as you p.

    Don't pat or rub with towel, literally just hold it gently in place until you are dry. Avoid tight trousers, or any trousers if possible.

    The problems with your bowels are known to occur with BD, which doesn't necessarily mean that is what yours are, but is certainly something anyone who knows about BD should be considering. Following a sensible diet - something similar to that recommended for Crohns and colitis wouldn't do any harm and might help whilst awaiting further advice and treatment.

    Make an appointment with your GP to discuss all this, armed with evidence about what treatments are usually prescribed and say you would like to try them - even if it isn't for a week or two, that's sooner than 7 weeks to see a Rheumatologist and you don't yet know how that appointment will go. You have every right to be seen and treated now, when there is treatment available to try. The aching legs and exhaustion - hard as it may be with a family, if you have any help then really make the most of it. Sod the housework, ask people to do what absolutely has to be done - shopping, cooking, very basic cleaning - get your feet up whenever you can - for ten minutes a few times a day is better than not at all. REST is very important with BD, and one big mistake a lot of people make is to think when they feel a little better that they can launch themselves into a spring clean or a baking session. Your children have needs that have to met and needs that you and they THINK should be met. Work out which is which, give one a rest. Your husband also has needs, or thinks he has, but he won't get those met until you feel better so it's in his best interests to help you with your recovery. It's so very hard to get that across to loved ones, often when they feel helpless or are upset at seeing you suffer, they can be negative and unsupportive. Back to that family help - don't spend it chatting or explaining or socialising - REST REST REST, make it clear that you are extremely grateful to everyone, but also be honest, if you take control then others won't feel so helpless and will be reassured that their wife/mum/daughter/whatever is taking steps to do all she can and that their help is invaluable in helping her to make the best of the situation so that everyone can benefit. Then you may find sleep a little easier if you are not in so much pain and not laying awake worrying about everything - try listening to some soothing music through headphones to clear your mind of any worries. Avoid caffeine close to bedtime. Make sure there is fresh air in the room. Good luck.

  • Hi Tigerfeet & Nikki

    Couldn't agree with you more. And yes I'm one of those people who try and catch up as soon as I'm feeling a bit better, Rest and Pacing yourself is very important.

    Lesley

  • Hi Nikki2025

    It sounds like you are really suffering and only having been diagnosed recently and not having proper medical support on board, is probably adding to your problems.

    You can talk to us anytime and although it is difficult for us to advise on medication that may help you while you wait to see the specialist. You could email or telephone the Behcets Society helpline for advice.

    The telephone number is 0845 130 7329 and the email address is

    info@behcetsdisease.org.uk

    Other than that they have produced some factsheets on this link

    behcets.org.uk/menus/main.a...

    The one for ulcers will cover most of what you are experiencing and you could print it out and take to your G.P to see if he/she will prescribe one of the options in the meantime. A lot of us here have used the steroid sprays or creams that are advised in the factsheet and this is a matter of trial and error to find one that helps.

    The out of hours service maybe more help if your G.P isn't forthcoming as I have used them out of desperation in the past and they have been very helpful.

    If you look through some of the other posts there has been practicle advice such as using ice packs for the pain and a lot of us use this to help. Using cotton underwear and changing them frequently is another suggestion.

    It is a really horrible disease and does take some working through and sometimes you have to find the extra strength to push yourself forward to get the right treatment.

    Hope some of this helps...keep in touch

    Andrea

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