Newbie intro and need help with info about dead gut...I almost died last month

I have been diagnosed and "undiagnosed" with lupus since 1978...I've been sick with symptoms since age 9.  Last spring I was diagnosed with Non-Hodgkin's Lymphoma (MALT) with 4 tumors in my eye orbits and a large tumor on the left side of my head.  I received Rituxan X 4 and felt like a new person for a few months then it started gradually wearing off.  My tumor appeared to return after about 6 months but it was scar tissue.  I was given a "maintenance" Rituxan treatment.  I went into the hospital with slight diarrhea but ended up dragging my IV pole into the restroom about every 30 minutes.  That evening I developed "explosive" diarrhea that was so frequent that I barely made it to my bed before I was on my way back to the bathroom.  By midnight it was bloody.  By the time I was able to get in to see my doc my white count was 35,000 and climbing.  I had severe right lower quadrant pain but no vomiting so he didn't think it was appendicitis.  There were no beds available in the hospital so I waited for hours in the ER waiting room.  By the time I was in my bed I was in septic shock.  My CAT scans and ultrasounds showed air in the portal vein.  I was on 3 IV antibiotics but I didn't improve much and 4 days later I had "emergency" surgery (after 4 days of watching I don't know why they got in such a hurry but I was in the OR less than 30 minutes after they informed me that they had to operate.  I had 12 inches of "dead gut"...the last 12 inches of my large colon were removed and I left with an ileostomy.  One of the most intriguing element of my "lupus" is an EXTREMELY elevated anticardiolipin antibody.  It's so high that they were certain that it was a "lab error" but after being repeated at 3 hospitals I was sent to a specialist at John's Hopkins.  She put me on low dose prednisone for advancing cerebral atrophy.  That didn't help as I now have advanced cerebral atrophy.  I wasn't put on a blood thinner due to the fact that I fall down a lot and live in a 3 story condo.  The surgeon had only seen one other case like mine and she had end stage pancreatic cancer.  My rheumatologist is checking to see if my elevated anticardiolipin antibody could have any connection to this mysterious dead gut syndrome.  Last year after my Rutixan treatments all my blood levels were normal for the first time in memory.

Besides the cancer and autoimmune problems I have arthritis, asthma, migraines and fibro.  I turned 60 on Monday and feel like I'm at least 80.  I have a great support group (not a formal group but friends from church and neighbors) but my husband is not at all supportive.  I've finally found a doc who listens...my last rheumatologist told me she couldn't refer me for my excruciating headaches (24/7 for over a year) and the lumps around my eyes and on the side of my head because she "couldn't see or feel any lumps).  These were the lumps that turned out to be malignant cancer.

Sorry to be so long winded but didn't know how to explain in fewer words.

Sherry in SC

I know a lot of people have a hard time dealing with their sick loved ones. I don't know why maybe they can't handle change. or maybe they just can't stand to see their loved ones hurting.

I'm g;ad you have your church brothers and sisters to help you also. I couldn't get by without them. My hubby passed away 7 years ago and it's hard for me to do alot of maintenance stuff so I've had some from the church help with the lawn and patching a hole in my roof and feeding me when I can't cook. and of course sharing the word is always the best medicine.

I hope you get some answers soon and start to feel better

hugs

carol