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cheerios123

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Posts: 1
Reply with quote  #1 
Hello, thank you for giving me your time. I am 14 and in the middle of high school. Ever since I was about 6 I have suffered from cystitis. I was always in and out of the doctors with new medicine and antibiotics, drinking cranberry juice every now and again. But nothing worked in the long term. However, now it has gotten to the point where nothing is working hardly at all. I have had a month off school (not including holidays) and I have to go back soon.
 
My family don't understand it that well, and although my mum tries, she does really get it. My mum is hassling me to go back to school and saying it's mostly because of 'nerves' I'm feeling ill this week. I keep telling them that, although I might be nervous, it's not the case. I used to try and cope with it at school, and didn't cope very well, but now it's gotten to the point where I have had enough and don't want to have to cope with it any more, I want it to go. 
 
I used to drink cranberry juice a heck of a lot, but, like most of stuff that is supposed to help, it hardly effects me. I've had antibiotic after antibiotic, medicine after medicine, and nothing is working and it's really taking over my life at the moment, and I just want to be well again. I am going through hospital scans and stuff like that now, but I just need some help/advice?

Thanks [frown]

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cheerios123[rolleyes]
Sophia

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Posts: 516
Reply with quote  #2 
Hey [smile]

This is an awful thing to be affected by when you should be out enjoying life with your friends and I'm sorry that your family are not being more supportive but until someone suffers from this horrid illness, they don't understand how terrible it is.

I think that you have a chronic infection and the antibiotics you are being given are not long enough or strong enough to kill the infection.

Firstly you need to know what bugs you have and then take a high dose abx for a few months to really kill off the bugs.

There are two doctors in the UK who specialise in chronic embedded infections - one in Staffordshire (a lady) and a Professor in London.

You can see the Professor via the NHS or privately but the Staffs Dr is private only.   However you can send her a wee sample by post and she will get it tested and tell you what bugs you have (£60 for a wee test).

It may sound like a lot of money but it will be worth it to find out what bugs you have and to get them treated and get your life back!

Let me know if you want the details of either of the doctors

Take care
Sophia
x
Moderatorsusan

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Reply with quote  #3 
Hello

So sorry that you are suffering with this especially as you should be enjoying time at school and with your friends.

I am assuming that attacks of bacterial cystitis have been ruled out by your GP? Bugs are extremely resilient and unless they find the right combination of antibiotics may not get rid of any underlying infection. However it's also good that you are going through tests as well just to make sure there is not an issue with your bladder and kidneys from a function point of view.

I would stay away from cranberry juice. Firstly it's full of sugar so may cause you to have thrush and secondly it's extremely acidic and will only inflame your poor bladder further. In the meantime try to eat a really plain diet and stay away from fizzy drinks, sweets and anything else with lots of sugar in it. Drink lots of water and trying some baking powder in water (a teaspoon every couple of hours) to take away the stinging. An icepack between your legs every couple of hours can help as well as it calms the tissues.

Ask your mum to call the COB office today or tomorrow and speak to one of the ladies. There is a lot of advice they can provide and information on specialists who can treat you further.

It's really tough being off school but if your Mum calls the COB they can give her lots more info on this. Perhaps put the call on loudspeaker so you can listen in as well. They will take their time to listen to both of you.

Icy

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Posts: 428
Reply with quote  #4 
Hello Cheerios,

It is awful you going through this during your school years and since young. If you have had a lot of different antibiotics given to you, especially in short bursts of courses, you are very likely to have a candida overgrowth - antibiotics of many different kinds will just kill of different bacteria and so you could be really depleted of good flora which help to keep down bugs. You could have a really resistant type of bug in there but probably also along with candida/fungal overgrowth.

You need support from your mother as you can't cope alone with this and your mum just probably has no idea how to handle this and will just listen to the normal GPs who quite frankly have not got a clue about these conditions.  She need to know that your immune system is being affected which is why you are feeling so ill.  

Do all the things the others have recommended. Certainly don't feed bugs with sugary stuff - try to do a plain, simple, nutrient dense diet, few carbs - they all feed bugs. Can you start on some probiotics and def get a swab done to check for thrush.  An antifungal from the doctors may help you and you could see if it made any difference.

Get your mum to speak to COB as suggested.  Don't give up. Bladder problems like this are not just a bladder condition, it's your whole body system so you have to have support in all areas.
Moderator_Jen

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Posts: 973
Reply with quote  #5 
You have been given some great advice and as a mum myself my heart goes out to you to read how much you are suffering. You are being incredibly brave and it must taken a lot of courage to post on the forums and ask for help. If you were my daughter I would be so very proud of you for trying to find a positive way to help yourself. Both you and your mum need support and sometimes as adults ( especially us mums!) get caught up in things and stop to ask if you are ok and what you want to happen.

You have choices and it is important you feel listened to and your feelings/emotions/opinions are respected and acknowledged. We understand how frustrated you must being feeling right now but please remember you are trying to do all the right things - none if this is your fault and you are not to blame. This is not all in your head or down to stress/anxiety or nerves. Yes, those things can make any medical condition worse but they are not the cause of the problem

COB has a medical pack that can be sent to your Dr that might help them understand about IC and then they might be able to send you to the correct specialist to see if you do have IC and what is going in with your body.

You can ring COB yourself as we have a young persons support person. Her name us Suzannah and she is very friendly, sympathetic and understanding. You might find talking with her could help - it's sometimes easier to speak with somebody over the phone rather than face to face.

If you feel this might be useful just email the COB office and ask if Susannah could contact you.

Please let us know things go and if we can support you and your mum then please let us know.

Good luck and I hope things get sorted out for you very quickly and you get back to enjoying your life and looking forward to future xx

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Kent Support Group Co-Ordinator
Special interest in supporting those with Interstital Cystitis, Fowlers Syndrome and those who have bladder issues in Kent.

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Kerry

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Posts: 914
Reply with quote  #6 
Hi Sophia

Could I please have the details of the two specialists please?

Thanks xx

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Survivor of IC since November 2002, finally diagnosed in Summer 2004. Had 4 cystoscopy's, 4 hydro-distentions, 3 urethral stretchers, 1 laparoscopy, 4 urodynamics, numerous ultra-scans, Cystistat and DMSO instils of which I have lost count, perform ISC, suffer with retention, pain, bleeding, frequency and urgency and now have a urethral stricture. Had botox injections in Nov 2014. I'm on ibuprofen and tramadol daily along with my other six daily tablets.
Sophia

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Posts: 516
Reply with quote  #7 
of course - i will PM you
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