anyone else experienced this.

Good or bad experience with the NHS ? Not sure which drugs are available ? Just looking for others in the UK to chat with ?

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Dotster1
Active member
Posts: 3
Joined: Sat May 13, 2017 5:02 pm

anyone else experienced this.

Postby Dotster1 » Sat May 13, 2017 5:17 pm

Hello I am new here and looking for some advice, reassurance I'm not sure what really. apologies for the long post
My husband has UC, diagnosed about 4 years ago. Recent flare up of this and his reactive arthritis in the past month, contacted the IBD nurse, samples sent, blood tests taken, informed about 10 days ago that the inflammatory marker in his stool (glycoprotein?) had raised from 80 something to 200 and 80 something, there was no signs of infection and bloods were normal.
Flare up continues so 2 days ago (we are constantly ringing for advice at the moment, never had a flare up lasting more then a couple of days before) rang again and they suggested him trying a medication and gave a brand name, normally only uses asacol suppositories as is allergic to mesalazine. go to collect prescription its mesalazine, so I spoke to the IBD nurse who said she would speak to the consultant and ring me.
now my husband never complains about his uc, he just gets on with it as usually it is not a problem, but I have been really worried about him as he has been exhausted, and falling asleep as soon as he sits down, this is why I insisted on a blood test.
well ibd nurse rings and says, I have spoken to the consultant and as he has tested positive for cryptosporidium he needs an urgent flexi sigmoidoscopy but we are not going to do anything about the treatment at the moment he needs to come in on 22nd may.
I questioned the result as we were clearly told there is no infection but inflammatory markers are raised, she rechecked the results on the computer and said yes its correct.
How the hell did they miss telling us that?
I am very angry at the moment which the management of this situation, still non the wiser but at least he has an appointment now.
Has anyone else experienced this? what affect is it likely to have on his uc?
I'm a nurse so I'm not naïve about medical things, I knew he was unwell but it seems they didn't read the results right.
thank you for taking the time to read this

Paicey1234
Active member
Posts: 4
Joined: Thu Aug 24, 2017 11:34 pm
What is your status: Colitis Sufferer
Date first diagnosed with IBD: 01 Aug 2006

Re: anyone else experienced this.

Postby Paicey1234 » Sat Aug 26, 2017 8:31 am

Hello,

Deary me! Sorry they were not on top of it. I hope it gets sorted soon. It is obviously not your partner's fault but you should get them to open up more about when they are ill - so that it's not on yourself to constantly raise the issue. I have just had a similar problem with my partner who wants me to say when I am ill more - so I prob understand why your husband does it, haha, as I do it myself!

Can they not give a dose of steroids to control the problem? Or have I misread?

Hope things will get better shortly.


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