Struggling with Severe Pain & Seeking Advice on Next Steps

[Abarna]

Hey everyone,

I've been in the hospital for over a week now with severe lower abdominal pain, joint pain, and a high heart rate (over 125 bpm). They did a CT scan and found some blockages in my colon, so I had a sigmoidoscopy yesterday. Thankfully, it didn’t show anything serious, but the pain is still unbearable.

As I mentioned before, I have lupus and was previously on methotrexate, hydroxychloroquine, and prednisolone in srilanka. However, after coming to the UK, my new doctor stopped methotrexate and hydroxychloroquine while tapering my prednisolone. Since then, my symptoms have worsened.

Right now, I’m on oramorph every 4 hours, but it only helps for about 30 minutes. Codeine doesn’t work and causes constipation, and I’m allergic to paracetamol (it gives me hives). Naproxen helps a bit (40-50%), and I take it at home with omeprazole. But if they discharge me now, I won’t be able to manage the pain without better relief.

Before all this, I was independent—walking to the shops, cooking, cleaning, studying—but now, I rely on my husband for almost everything. I really feel like I need to see a rheumatologist, not necessarily stay in the hospital, but I need proper pain management before I can go home.

My urine test showed +4 blood and +1 protein, and my blood work isn’t great—low hemoglobin, low RBC, low MCV, high MCHC, and a CRP of 14. I honestly don’t know what’s happening to me.

Has anyone experienced something similar? Would it be a good idea to contact the London Lupus Center or RUH Bath Hospital? And how do I go about getting an appointment there? Any advice would be really helpful

[lupus-support1 Administrator]

There are 2 issues: you don’t agree with your rheumatologist treating you. Second, your hospitalisation. I am sorry but we cannot give medical advice.

Best wishes ,

Ros

[DogHospiceMom]

I was hospitalized in September with severe abdominal pain. I was tested for 3 days straight and then called my husband sobbing to pick me up. I have PTSD from the entire experience. I kept asking the closest thing to a doctor, which was a nurse practitioner, if it could be vasculitis. She was totally non responsive to everything I suggested. When I got out and followed up with my own doctor, I told her that one of the tests showed a compression of the celiac trunk and a narrowed SMA. She said both of those things could be the blood and oxygen was not getting to my intestines and abdomen. Based on that, my rheumatologist ordered a CAT scan of my abdomen with dye. The radiologist read it as blood clots in my liver, vena cava and more. Then I was sent for further tests a few weeks later and they were gone. I was sent to a hematologist who said that vasculitis was the only thing that made sense because if I had blood clots it would have taken months on high dose blood thinners to have them reduce and there was absolutely no way they would have cleared in weeks, it would have taken months. My rheumatologist ruled it as Acute mesenteric ischemia, I have had four more episodes since September but have refused to go to the hospital. I have a prescription for Bentyl which I take 4 times a day.