Undiagnosed but in pain..

[Eriberri]

Hi,
I have low abdo pain this has been going on for more than a year, Blood in stool on and off for a year or more. Had sigmoid in June - all normal, then colonoscopy in sept - all normal. Had two episodes of significant blood loss / pain / diarrhea since - one for 30 days in summer and then 19 days in oct. Just started up again 2 days ago. The blood is maroon colored. Very painful low central pain but also really painful cramping especially when I am passing a stool. Also I get a weird gurgly sensation and I know then that I will pass blood. Sometime it is just blood and no stool?
Doctors are waiting to do a capsule endoscope, but no date yet. weight loss of about 28lb since this began. Tired constantly, also since the bleeding came back again my legs are really itchy?(front shins) dont know if this is related. Blood work done about 3/4 times now and all normal. Does any one have any thoughts or clues as to what is going on. any suggestions?
Also what can I do for the cramping pain?, I have pain killers (codine) but not helping much,

 

[dannysmom]

I am glad you are getting the pill cam and hope they can do that soon. This sounds awful! Did your blood tests include Crohn's markers (ie Prometheus), ESR & CRP? Are you getting ay treatment while you wait? (ie prednisone) Steroids can help but this may also cause the pill cam to be negative if it clears up ulcers. Hope you get help faster!

 

[Earnellzwifey]

I am wondering the same as dannysmom. Have or are you taking prednisone? The itching you mentioned about your shins could possibly be related. I currently have swelling in my bone marrow in my shin or tibia bones. It causes several diffrent symptoms. I do not have itching right now but I did in the past and now I have a lot of pain in that area. I am waiting to see a specialist about the issue. My dear BIL has MS and was on long term pred and it caused problems with his bone marrow and he ended up having to have holes drilled in his bones to relieve the swelling. I am scared that is the road that I am headed down as well.

Another reason I think that they might be related is that your bone marrow is what makes your red blood cells and with all the bleeding that you experienced your bones might be in over drive trying to catch up with the loss. I do not know if this will cause itching or not.

Also do you take any narcotic pain meds? I know that when I take any kind the rim of my nose itches like crazy. I know weird location but that is the only spot that itches unless I have morphine then I itch all over.

I hope you find relief soon.

 

[StarGirrrrl]

It does sound like a case of IBD to me, crohn's for example can occur from mouth to anus, so lots of places to check that the tests you've had can't see. A capsule endoscopy is ideal! Also there are people here on the forum with raging, confirmed IBD who always have normal blood work.

There are a few anti-spasm meds out there that could help with the cramping, such as Buscopan (can buy over the counter) or things like Colofac and Spasmonal on prescription. Usually used for IBS but can help sometimes with IBD. I would consult a GP first though with your symptoms because you don't want to make things worse.

I'd get chasing that capsule endoscopy if I were you, sounds like you can't just sit back and wait for someone else to get round to it.

dannysmom, the Promethus test isn't available here, not even outside the NHS

 

[Eriberri]

Thank you for ur replies, I am not on presidone, just got codine and also some ibs anti spasm type meds. I have had the blood test for inflammation and anaemia, last time I was bleeding bad I was in a+e and my hb levels were low. And also resting heart rate was high (129-140) but they didn't do any thing just monitored me and doped me up. I am waiting in the funding to be approve for the pill cam, they said it should be within 6 weeks. Seems like a lot of people in here have no answers..

 

[dannysmom]

Do you know what inflammatory markers were tested and what the results were? (If you have not aready started, you should request copies of all tests) You are right, the Undiagnosed club is filled with people without answers to their symptoms. We share the tests and treatments that we've gone through. Several people do end up with a Crohn's dx after it all. Have they done any imaging yet- ie CT or MRI? Many times prednisone is treid even without a firm diagnosis.