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

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Sherry C
New Member

Date Joined Apr 2006
Total Posts : 3
   Posted 4/19/2007 2:31 PM (GMT -6)   
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 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

Elite Member

Date Joined Apr 2007
Total Posts : 32602
   Posted 4/19/2007 4:13 PM (GMT -6)   

Dear Sherry

Hello, I am Kitt and I am new here.

I read your post and it sounds like you have had a long extended bout with your disease process.

The thing I notice most is the lack of support of your husband. I have depression and when I was at my worse, my husband appeared unsuportive and even got mad and said he was going to lose it himself as he did not know what to do to help me.

I needed someone to hold me and tell  me it would be ok and he was the person I needed.  Perhaps your husband is having difficulties watching you go through all of this pain.

Do you think you could talk to him in a calm and esay manner and tell him what you need? ((((((((((((((((((HUGS))))))))))))))))




"A good laugh and a long sleep are the best cures in the doctor's book."
Irish Proverb


Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 4/19/2007 4:52 PM (GMT -6)   
Hi Sherry, welcome to the group. wow you have been through so much. I'm sorry I don't have any answers for you but most people come around pretty soon in the day. I'm sure others will be helpful. On a brighter note Happy birthday! I'll be 50 in june. I get a lot of support here. they are all wonderful people. Some of them know more than my doctor so they are not only supportive for they are smart as well!
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
God Bless
 Newly DX's Lupus.Possible CREST,COPD, high PB xanax,triam , Opana ER for pain, Evista for osteo,. oxygen Plaquanil400mil, . effexor. spiriva, xopenex.
Come ye, all that are weary and heavy laden, and I will give you rest!

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 4/19/2007 6:50 PM (GMT -6)   
Hi Sherry and welcome. I'm so sorry to hear about everything you have been through and that no doctor has really put all the pieces of the puzzle together for you. Hopefully the new rheumy will really be able to help you.

Like Carol said, this is a great group of people for both support and information. Feel free to ask any questions or vent if you are having a bad day.

Take care and I am glad you joined us.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops



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Co-Moderator: Lupus and CFS Forums

Veteran Member

Date Joined Jan 2007
Total Posts : 610
   Posted 4/19/2007 7:18 PM (GMT -6)   
Hi Sherry & Kitt
Hi Sherry
Sorry to hear about the things u've been through. We hv a great group of people here that support each other. Do not feel hesitate to vent or to ask questions We will try the best we can to help and listen.
I hope yr new Rhumty will find u the best treatment.

Sherry C
New Member

Date Joined Apr 2006
Total Posts : 3
   Posted 4/20/2007 11:53 AM (GMT -6)   

Thanks for your replies. Does anyone out there know of the connection between "dead gut" and anticardiolipin antibodies or just lupus???  I'm due for reconnect surgery on May 10 and I'm quite scared to have to go through this again.  I have an incision from my pubic bone to my breast bone that still isn't completely healed from my surgery in Feb. I'd really hate to get reconnected and have another part of my colon die!

My husband has just enough medical training to be dangerous. I worked in NICU (neonatal intensive care unit) for 23 years and am really glad that I understand the jargon.  I've had to do a lot of my own medical management.  I've had poor doctoring since childhood and it really got bad at 21 when I lost a newborn to poor medical management.  That's why I went back to school and did NICU and newborn transport.


Sherry in SC

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