Help in so much pain and no one is listening!!

[macdonald88]

Hi guys I am having quite a rough time just now, for the last 6 weeks my stomach has been in agony, constantly feeling sick(although only been sick twice) extreme fatigue, crazy hot and cold flushes and my glands have been in agony. Bowels are moving up to 8 times a day and is normally explosive movements with blood.

I had a scope 5 weeks ago and there was quite a lot of inflammation and ulcers in various sites, I was given anti biotics and steroids to help both have yet to do anything. Steroids were stopped 2 weeks due to no effect.

Fast forward and the last 2 weeks I have been doubled over in absolute agony I have been to my GP 4 times and to A&E twice, I'm allergic to most meds and they find it hard to treat the pain. and keep telling me crohns is such a horrible disease!! I know I live with it!!!!!!!

I was at the doctors 2 days ago and they said I had no bowel sounds?!?! They prescribed me meptid but this has done nothing for the pain. The doctor wanted to admit me but didn't want me going so late in the evening as I would be treated my junior doctors and wanted to speak to my GI, the GI didn't want to admit me for risk of infection (I'm on infliximab)

I'm seeing my GI again tomorrow but I just don't think I'm going to get any further I can't even bed over or turn just now without being in agony and I really don't know what to do anymore I don't feel like anyone is listening to me.

Sorry I needed to vent, what would you guys do?:ybatty:

 

[Trysha]

Go to emergency
Maybe there is a blockage going on, hard to say without tests.
You should not continue to suffer---get some qualified help soon.
Don't wait around for the GI---in my experience it just does not happen.
You need urgent relief emergency rooms are there for that--------I think it is called A&E
over there.
Good luck
Feel better soon
Hugs and best wishes
Trysha

 

[Honey]

Hi there,
So sorry you are having a hard time just now. Have you just begun Infliximab? It took 3 infusions before it started to work for me. It has brought down the inflammation andso Jam now pain free. Do not refuse if they decide to admit you. You need further help to get relief from pain. Ask questions and talk about how you feel to our Consultant. It is not n easy illness but once the right treatment is found, you will feel better. Let me know how you are. Best wishes.

 

[macdonald88]

Trysha they keep fobbing me of at the emergency room I will see what GI says today but I've had enough. I'm not looking for every drug under the so. I'm just want them to help me but the thing that annoyed me is the last few ones they didn't even know what infliximab was and told me it must be so dfficult ahhh.

Honey I have been on infliximab for 18 months but I think it's losing effect now. I had an infusion last week 4 weeks early to see if it would help but yet nothing.

I feel like none of the doctors are listening to me as I'm quite young (25)until mum is coming with me to my appt with me today.

Thanks for listening.

 

[rob101]

Hi , I don't want to sound alarmist but when my bowel stopped making any noise it was because it had ruptured ! I hope this isn't the case with you.
Give your GI or IBD nurse a ring and ask them .

 

[Ihurt]

I am so sorry for your pains. I really think your GI needs to figure this out. Sounds like the antibiotics they gave you may have made you worse. It sounds like you are in a ton of pain. Your GI needs to figure this out and at least give you some pain relief. I understand your doctors reluctance for you to be admitted due to risk of infection. I mean hospitals are no place for sick people ironically with all the germs that lurk there. But on the other hand, you are in terrible pain and need help. You know when there is something seriously wrong. Do you have a fever at all? I am glad you are seeing the doctor today. I hope he will help you figure this out and get you some relief. Good luck.

 

[Trysha]

Hi Macdonald88
Hope things are better for you and that you are now receiving the help you so much need.How did theGI appointment work out for you today?
Please let us know if you feel up to it.
Feel better soon
Hugs and best wishes
Trysha

 

[macdonald88]

Hi guys thank you so much for all your support, feeling a bit better after seeing GI today although I had to wait 1hr 20 mins as he was running late!!
My disease activity is moderate and doesn't think I should be in so much pain just now, my white blood count is slightly elevated from 2 weeks ago and has taken more bloods today to see what's going on.

Again today I had no bowel sounds, I am getting an X-ray done first thing in the morning as the department had closed by the time I finished my appt. he is off till Monday but has booked me in to see him outwith clinic times to go over everything and have a lengthy chat about things which I thought was very good of him. My mum came to my appt with me today and will come on Monday for support.

He will make a decision once he has seen the X-ray and will decide if he is going to out me for a CT scan and MRI.

It looks like I have built up anti bodies to reject the infliximab as I'm not responding to it any more I've been on it for almost 18months. I had an infusion last week 4 weeks earlier to see if it would help but has so far not had an effect. Possibility of going back onto humira and azathioprine but I had reactions to them both before.

I have started back on the budesonide tonight and he has given me a couple of other pain meds to try.

Think you for everyone's advice and support it means so much

 

[Trysha]

Great news macdonald, at last you are getting appropriate attention.
Its always good to have mums around.
Hope things will be much better for you from now on.
Cheers!
Feel better soon
Hugs Trysha