2 emergency admissions in 2 weeks and still v. ill

[EW8]

Hello all, I'd be grateful if anyone has some advice for a UK sufferer. I have been flaring since June, have had three awful months and lost a lot of weight. 2 emergency admissions in the past two weeks and still in a lot of pain. Recent CT scan revealed lot of intestinal inflammation.

Started Infliximab 11 days ago after first emergency admittance and was rushed back in again 5 days ago. Both times I went in with violent pain and vomiting and they treated pain with morphine. I am now back home waiting for an endoscopy to see if I also have stomach ulcers or gastritis. I think I do, as I am sure the steriods have severely aggravated my gut - the pain is under my breastbone and worst immediately with food. I have recently been on Budesnoid, but I am scared to take as I think they are making me worst, so I have stopped. When I was sent home on Friday I was told my white cell count was high and I have had a phone call from a nurse this afternoon saying they may have to postpone my next Infliximab infusion because of this. Why am I being sent home with a query over infection, a query over stomach ulcer and still in a lot of pain all to be resolved?

Nurse on the phone said I should ring senior Consultant's secretary tomorrow and start making a fuss. She was so concerned that she is going to email him. I am currently taking 20mg Omeprazole and 150mg Ranitidine twice a day. They have given me Buscopan for the spasms.

I am feeling so anxious. I have already had a perforated bowel and only have 1.5 meters left and am scared it will happen again because no one is paying attention. I have had a CT scan and no stricture revealed, but I am obviously concerned I may have a blockage.

I don't like to make a fuss, but maybe it's time to start doing so. Spent an hour this afternoon in tears (which is very rare for me) but am at the end of my tether having had this now for three months. Any advice from you lovely people?

 

[scottsma]

Please,make a fuss !!!

Us Brits are far to polite for our own good.

If you don't stand up for yourself,who will ? This is your health we're talking about. Nobodys going to shoot you for being assertive. :ghug:

Keep us updated.Very best wishes.

 

[UnXmas]

Generally, they'll want you out of hospital unless it's unsafe for you to be at home, or there's a purpose to your being in-patient, such as needing a treatment that can only be administered in hospital. Discharging you and seeing you as an outpatient does not mean they think they've cured, treated, or even diagnosed you yet - just that right now they don't think you're in immediate danger. That's the theory anyway. I can understand them sending you home with a possible ulcer, and pain as well, though with a high white count it seems more questionable. Unless they think the inflammation they already know about is responsible for that? What type of infection do they think you may have?

I've spent most of the last three months in hospital, so in all honesty I'd not complain that they're letting you go! Just make sure you go right back to A&E if anything suddenly worsens, and keep nagging them for out-patient tests. You can make a lot of progress finding and fixing things as an out-patient. It may also be a good idea to discuss getting some stronger pain relief on prescription so you do not have to go to hospital for it (though again, if the pain is changing/worsening, go to A&E).

I truly think sometimes it's healthier to be at home - you're much less likely to pick up more bugs, and will probably be able to sleep and eat better. I understand it's scary that you know you could end up in another emergency situation and not to be in hospital, but it sounds like they are confident that right now, sick as you are, you're not in immediate danger. So again, just be vigilant about any changes so if anything happens you can get it checked out quickly. Do you live alone? Make a plan, if you can, with someone you can contact to take you to hospital if anything should happen (that's not serious enough to warrant an ambulance) or someone who can be with you so someone's there should you need them.

 

[EW8]

Thanks UnXmas, really helpful. I have had the illness for 20 years and am mostly very calm and sensible, but the past three months have worn me down and I am feeling very vulnerable. I have sat with my other half and composed an email which I will send to the Special Nurses first thing tomorrow expressing my concerns and which they will raise in turn with the Doctors. I don't know what the inflammation is and I like to be informed. I saw a doctor I hadn't seen before very briefly before I was discharged, he clearly knew nothing about my case and, although most of them are excellent, he was at my bedside for about 30 seconds and a bit dismissive. I know I have a lot of inflammation, know I need the Infliximab now commenced - but truly think there is something else going on. I think the answer is to get the Endoscopy asap and find out what is causing the white cell count. I don't usually present with a lot of pain and whenever I have in the past I have been in real trouble, so hence my level of concern. I am so sorry to hear about your trials - I have read some of your posts previously - this illness makes us far braver than we realise we can be. I suppose I am really just trying to avoid a 3rd emergency admittance and the pain and distress that goes with it. Fingers crossed all will be well. I do hope you too are recovering and making progress. xxx

 

[ReneNZ]

I agree...make a fuss!
No one should be made to go through this! Even after all my xrays and MRIs the surgeon was still shocked to see how much of a mess my stomach was in. After surgery he said...and I quote...'no wonder you were in so much pain' . Seriously I could have slapped him!