Hello all. So here is my situation after years of on again off again extreme constipation and urgent needs for BM with no passing of anything (at the time just an inconvenience) in July 2010, out of the blue I became very very sick to my stomach, my doc did an ultra-sound (nothing found) gave me Zofran and sent me way with the all clear, all was OK until Feb 2011, I again had a nasty flare up with D, could not eat drink, was very sick to my tummy, a week later I developed a massive DVT (blood clot left calve) complicated by PE or Pulmonary Embolism (blood-clot to the lungs) that about killed me, was started on Coumadin (blood-thinner) etc. I remained sick passing a little blood and mucus in my BM's, I then stayed very very sick to my stomach, GI doc did colonoscopy came back clear, then he did an Endoscope and that came back clear, I stayed very stick to my stomach so they did a CT, that showed "thickening of my Sigmoid Colon" and the Radiologist suggested possible IBD, GI doc dismissed it because of the clean colonoscopy and no bloody D. I stayed very sick to my stomach and I also began to feel very very cold all the time especially after eating. After 6-months the Hematologist told me to stop the Coumadin, BOOM I clotted again two weeks later 2nd DVT from my calf to my hip with another PE that about killed me again (put on blood-thinners for life at this point). After this they did another CT scan and found "persistent thickening of the Sigmoid Colon", again GI doc dismissed IBD because of the clean colonoscopy and no inflammatory blood markers, doc did do a pill scope and again it yielded nothing of interest. I continued very sick, then I started to develop extreme burning pain under my skin up and down my arms and legs to go along with the awful chills and cold all the time. I have had a full Neurology work-up, full Endocrinology work-up, full cancer work-up, and all came back normal. But I am still so so sick to my stomach, cold with terrible nerve and burning pains.
I very much think I have IBD with extraentestinal manifestations, but the doc's ignore me! I have switched to Xarelto for life-long blood-thinning (yaaa no more INR nightmares). Anyway I know I have IBD, but the GI docs say no and just give me Zofran (useless) and a pat on the head! Any ideas how I can get through to them? I know blood-clots and IBD are related, I have 2 CT scans suggesting IBD, and I have many symptoms just no blood markers or visible inflammation. Any ideas?
I very much think I have IBD with extraentestinal manifestations, but the doc's ignore me! I have switched to Xarelto for life-long blood-thinning (yaaa no more INR nightmares). Anyway I know I have IBD, but the GI docs say no and just give me Zofran (useless) and a pat on the head! Any ideas how I can get through to them? I know blood-clots and IBD are related, I have 2 CT scans suggesting IBD, and I have many symptoms just no blood markers or visible inflammation. Any ideas?