Not a very good few days healthwise. as I tailed off the steroids I began to get colicky abdominal pains again. I have been reconsidering my diagnosis. The official diagnosis was adenocarcinoma with unknown primary, mainly located in the right iliac fossa. The terminal ileum and cecum were fibrotic and wrapped around a mesenteric lymph node with small peritoneal seedlings at this site. The histology showed fibrosis and inflammatory cells but no mucosal cancer, though in the lymph node well differentiated adenocarcinoma which was CEA positive, even though the serum CEA was very low. No primary could be found on extensive laparotomy.
Treatment with 5-FU and folinic acid plus oxaloplatin, given with a dexamethasone dose for anti-emesis resulted in a 75% shrinkage of detectable CT imaged disease by 3 months and a further 4 courses resulted in a no further shrinkage.
I was well until about 3 weeks ago when colicky abdominal pain followed by gurgling took me into hospital. No change was apparent on the CT scan and there was no full blown abdominal obstruction. Symptoms settled on dexamethasone 8mg iv.but now on two occasions as I have tried to withdraw the steroids the symptoms have returned, although not so severely. I am also on a low-roughage diet and I suspect that the latest pain is from large rather than small bowel.
I want to consider the possibility that my original diagnosis was Crohn's disease, in which carcinoma has developed, as it does in 3-5% of cases.
Crohn's disease occurs in the terminal ileum/cecum area and leads to tethering of the bowel to adjacent tissue like I had. Mesenteric lymph nodes become involved and the histology shows inflammatory cells such as lymphocytes, plasma cells and macrophages. Granulomas may be seen but they are not a constant feature.
A complication of Crohn's disease is an inflammatory stricture. Treatment is high dose steroids usually for 4-6 weeks. My case is being reviewed at the multi-disciplinary team meeting tomorrow and we may get some news later. Options include further surgery to relieve the apparent blockage.