It's happening again

[Red Rabbit]

So I have been in remission for two years now after four years of serious Crohns including two major operations.

I wanted to keep on top of things this time as I don't want to go through this again. However symptoms are small and gradual and I know that I would not be taken seriously to warrant any action.

The Crohns support phone line at my local hospital is not operational. My GI is next to useless. The NHS is under even more strain that it was before. My hospital has been in special measures for an inadequate rating.

And now the Abdomen pain has started to flinch in the exact same place as before. I have not mentally come to terms with the last time. I don't want to live if this is happening again.

 

[ronroush7]

I am sorry for what you are going through. Know that you have a lot of support here.

 

[eleanor_rigby]

Can you go to A&E?

 

[Red Rabbit]

Can you go to A&E?

It's not that serious at the moment. It's just the start of what will get worse over the coming six months. From past experience they have only taken any action after numerous visits to A and E in agony by which time it's too late to try and get back into remission.

I know it sounds melodramatic but I have been through this process twice and ended up with major surgery. Even my GP was yelling down the phone to the hospital to get me appropriate treatment and they were so nonchalant.

Only when I got severe blood poisoning (ruptured bowel) and a rush to the resus area in A and E did they start to take it seriously.

 

[eleanor_rigby]

I know exactly what you are saying. I've been there - ruptured bowel included. I think you need to consider your options:

1. Change hospitals. Here in the UK we can go to any hospital in the country of our choosing. I would have a look around and find which hospital is closest to you that is well reviewed. It is generally a good idea to go to a University teaching hospital. I think I have heard good things about hospitals in London, you may just need to be prepared to travel. See if you can ensure you get a GI who is a specialist in IBD. If your hospital won't switch you, you can go to your GP and ask for them to switch you. If you are not offered a choice at the point of referral, ask your doctor why and say that you wish to go through your options. If you are still not offered, or refused, a choice, contact your local CCG: http://www.nhs.uk/Service-Search/Clinical-Commissioning-Group/LocationSearch/1

For info: http://www.nhs.uk/NHSEngland/AboutNHSservices/NHShospitals/Pages/HospitalsSummary.aspx#choice

2. If you have available finance, pay to get a second opinion from a private GI about what you should do next.

3. Go to A&E and make out your symptoms are worse than they are (knowing if they don't act quickly that will become your reality).

 

[Red Rabbit]

Thank you Eleanor. I will look into different hospitals and GI. I am in Essex and so London is only an hour train ride away.

If anyone has any recommendations for doctors or hospitals, I would grateful to hear them. Thanks in advance

 

[eleanor_rigby]

No worries - I've just edited those links as they weren't working but should work now. I've heard St Marks hospital in London is world renowned.