Weird feeling...

[Sophabulous]

Hi everyone,

I've probably only got myself to blame for this as I got a bit 'lax' last week about taking my azathioprine [emoji51]

I've been back on the normal dose for a couple of days but today has not been great. I was fine this morning, but by the afternoon I noticed that my stomach was making some very odd noises. I've been getting 'waves' of pain/gurgling similar to food poisoning or a bug but no diarrhoea or vomiting.

To add to that, my windpipe feels....strange? At first I thought I was coming down with something and it was a sore throat but it actually feels more like a 'tightness' around my voice box than a pain if that makes sense. I'm asthmatic but it certainly isn't that and I'm not convinced it's a coincidence with the way my stomach's been today.

Has anyone ever experienced something like this?

Thanks in advance

 

[ronroush7]

I am sorry for all you are going through. If it gets worse, I might call your doctor.

 

[Sophabulous]

I am sorry for all you are going through. If it gets worse, I might call your doctor.

Thank you, it's not too bad at the moment just strange! I'm going to try doubling up on esomeprazole and see if that helps. If no better tomorrow I'll ring the IBD nurse just to run it by her and see what she says. I've noticed recently that although I feel a little better, my symptoms are much more erratic with new things cropping up all the time. I don't have the fight in me at the moment to keep battling with my severely understaffed hospital and being left for weeks without medication on waiting lists to be seen [emoji53]

 

[ronroush7]

That doesn't seem right. Hope things improve soon.

 

[Dmarks70]

I agree with your comments about the hospital and waiting lists. For me, everything seems like a battle! What hospital are you under sophabulous? I'm in Stockport so not far away from you!

 

[Sophabulous]

I agree with your comments about the hospital and waiting lists. For me, everything seems like a battle! What hospital are you under sophabulous? I'm in Stockport so not far away from you!

Hi fellow northerner! I'm under Leighton in Crewe but my mum is practically begging me to ask to transfer to Wythenshawe. She's heard really good things about them, if I flare again in the meantime and have to wait so long I think I will. It's not their fault, they've had massive staffing problems in GI at Leighton for a while but they seem to be getting back on their feet slowly but surely.

My GP told me the consultants walked out en masse and for probably 12 months or more they only had 1 GI consultant who couldn't cope as things were anyway. I had been misdiagnosed with h pylori at that stage so I couldn't see the IBD nurse either until they realised the mistake. Through locums etc they are getting back to normal.

My throat has been much better the last couple of days, but my stomach is still giving me more grief than usual. I suppose it's just the way it goes I guess! [emoji854]

 

[Sophabulous]

I agree with your comments about the hospital and waiting lists. For me, everything seems like a battle! What hospital are you under sophabulous? I'm in Stockport so not far away from you!

This article tries to put a positive spin on it, but it had gotten so bad that people were complaining to the local rag about how desperate they were. Not good at all [emoji51]

http://www.crewechronicle.co.uk/new...spital-advanced-nurses-helping-under-11362735

 

[Dmarks70]

Sounds a nightmare. Wythenshaw can't be any worse so your mum's probably right. I'm under Trafford as that was where I was first sent when they messed up my colonoscopy. I get to see my GI about once every 3 months but don't have any access to IBD nurses. Basically, she asks me to think about what I want to do then 3 months later things have changed so nothing really ever gets done! I couldn't get on with azathioprine so she asked me to think about going on humira but my last calprotectin test came out really low so I have another 3 months to decide whilst on no medication!I feel your pain....

 

[Sophabulous]

Sounds a nightmare. Wythenshaw can't be any worse so your mum's probably right. I'm under Trafford as that was where I was first sent when they messed up my colonoscopy. I get to see my GI about once every 3 months but don't have any access to IBD nurses. Basically, she asks me to think about what I want to do then 3 months later things have changed so nothing really ever gets done! I couldn't get on with azathioprine so she asked me to think about going on humira but my last calprotectin test came out really low so I have another 3 months to decide whilst on no medication!I feel your pain....

Oh no not good!! That's the worst isn't it, knowing you are going unchecked and worrying about what's going on with you until you can be seen again.

I was formally diagnosed in April but haven't actually seen a consultant yet!! The IBD nurse is very good though, she's sorted all my meds so far once test results are back confirming I can have them. I also see a dietitian there who is fab.

I've only been on azathioprine a couple of months but so far so good. They are re-testing TPMT before upping the dose so fingers crossed I tolerate it ok once it's increased. I really don't want the hassle of a biologic drug as well.

I like the idea of Wythenshawe, but in all honesty I haven't got the energy to travel pretty much an hour to wait an hour and a half past the appointment time for a 15 minute appointment. I already miss loads of work. Procedures would be a pain too as I've got to get someone to take me. Oh well, at some point if it becomes a more viable option than sitting tight at Leighton I'll ask about it.