Hip pain and my mouth is covered ulcers

[Jenny06xx]

Hi all mega fed up here and need a bit of advice etc...
Well this flare is really getting to me! I'm down to 25mg pred again an just seem in a continious flare I've got pain in my stomach and still got the runs really bad and still loosing weight even though I'm trying to eat just for energy !
My doc won't give me any more painkillers but keeps saying let's send u to hospital. Seriously I can't afford to go I've got 2 kids to look after an my hubby works etc I know painkillers would help me manage till I see my gastro Monday but my gp won't do it .
I've got bad hip pain and my mouth is covered ulcers and feels like it's on fire 24/7 !
Do any of u have an ibd nurse in the uk ? Apparently I do but have never used her could I phone her and could she give me more pain relief or do I have to c my gastro or go to hospital?
This Is soo annoying you'd think they want to keep people at home not take at beds etc !!
Another thing can people with crohns be refered to a pain specialist and who would refer me ? I really am fed up of struggling if only I can get the pain sorted that's something !
Jen

 

[Rebecca85]

I have an IBD nurse, but she won't be able to give you more pain relief or anything like that, she's more for help and advice, and the first port of call if you have problems (to save tying up the gastros I guess). I think people with Crohn's can see a pain management specialist, but if you are in that much pain it's obvious you need stronger meds. Taking painkillers will not help your gut, and the danger is the inflammation could get worse and you wouldn't know because of the painkillers masking it.

I understand it's hard with kids and stuff, but maybe you need to be admitted and get IV steroids to kick start the pred into working.

 

[beth]

400mg of tramadol a day is pretty steep so I'm not surprised he wont, or probably cannot help you further but send you to hospital.

Your GP could refer you to a pain clinic. But to be honest: 1) the refferal will take longer than monday - probably weeks or months. And 2) it'll just be papering over the cracks of what is going on. Which you need to sort out. You might not be able 'to afford' to go to hospital, but if you get say a bowel rupture you'll not only be in for a very long time but you may not get out at all... You cannot afford not to go, if you see what I mean....

 

[bushydougie]

I totally agree with both of the above posts. Another thing you could try is phoning your GI's secretary. I did this when I started tapering pred and got symptoms back. She got in touch with the GI and phoned me back to say I could go back up on the pred. Just a thought. But it does sound like you are in a lot of pain and need to be sorted out asap regardless of other issues your health surely is more important.

 

[robbo87]

I have an IBD nurse who is great and the last few appointments i've had at the clinic have been with her instead of the gastro. I have a card with her number on etc and get told to leave her a message if i have any big problems. Im sure if you ring the clinic you usually attend to see your go they will have the details of your ibd nurse. It may be run differently than to where i live but mine is capable of prescribing me any meds i may need etc and will sort out prescriptions for me to collect asap. If the problems are getting worse as you try and taper off the pred im surprised theyve not increased your dose and slowed down the tapering. Thats what usually happens with me anyway.

If it gets to bad however i wouldnt hesititate to go to A and E, although this may not be plausible with having kids etc.

 

[rygon]

Ive got an IBD nurse and shes amazing. I see her once every 3mnths but can ring the IBD dept anytime and she will get back to me. She tells me how my bloods are doing, what amount of medicine to take, will talk to the docotrs if they arent working etc. Without her I wouldnt be doing as well as i am.

Im guessing when you say your GP, you mean a general doctor? If so, the IBD clinic will help you much more. Things wont get better, most probably worse and you could do damage to yourself, not good if youve got kids to look after