Comments on: Living with Sclerosing Mesenteritis

By: Ginger Hendrickson

Ginger Hendrickson — Mon, 22 Apr 2013 22:59:42 +0000

I have sclerosing mesenteritis with a tumor the size of a mans fist have all sympotims. Would
Like to know if anyone else has this size of tumour. And what they took care of th tumore

By: Michael B. Lashley

Michael B. Lashley — Fri, 01 Feb 2013 18:05:27 +0000

I have Sclerosing Mesenteritis, was diagnosed last year at the Louisville VA hospital in Kentucky, was vomiting and nothing was going through my bowel, they did surgery and cut everything loose, I was in the hospital for 13 days. I was put on the prednisone/tamoxifin medication, as of now everything is working well and the only problem I have is a cough that is medicine related, hoping it goes away with time. The people at the VA did a very good job, was glad they found the problem and took care of it for me, I was in quite a bad situation. They ran barium test CT scans and an upper GI before surgery.

By: Ed

Ed — Wed, 09 Jan 2013 22:10:16 +0000

I know you posted this last year but I was wondering how you are doing? I found out I had it a year ago. I was at the Mayo in MN for two weeks. They put me on presidone and I’ve had two cat scans since and been told it’s getting smaller. I do have the diarrha.

By: susanashephard

susanashephard — Tue, 25 Oct 2011 06:16:35 +0000

In reply to Dianna Courville. Dear Dianna, thank you for sharing your story with us and offering to be a resource for other people who might need some additional help. Hopefully, your recovery is going well and you are feeling better and stronger each day. You may want to take a look at Mayo Clinic's online health community which connects people with others diagnosed with similar problems and/or provides health information for many different types of health issues. Thanks again.

By: Dianna Courville

Dianna Courville — Tue, 25 Oct 2011 05:31:10 +0000

Hi,
I have been having CT Scans-MRI-numerous test to find out what is a mass found in my small intestines since July of this year 2011.I was diagnosed as having carcinoid tumors which we thought it was cancer.I was so very scared.When they tried to do a biopsy on the 3 tumors I had,it would not let the needle through to get it,so surgery was decided on to remove the mass to have it biopsied.Sclerosing mesenteritis is what I have.I am recovering right now from my surgery which I had done at MD Anderson Cancer Hospital in Houston,Texas with Dr.Paul Mansfield.
Please feel free to contact me for further information if I can help anyone.

By: Randy Schwarz

Randy Schwarz — Mon, 26 Sep 2011 12:05:16 +0000

In reply to Claudine Saxton.

Claudine, please visit our patient to patient community. You may be able to connect with others there that have this condition. http://connect.mayoclinic.org/

By: Randy Schwarz

Randy Schwarz — Mon, 26 Sep 2011 12:05:16 +0000

In reply to Claudine Saxton.

Claudine, please visit our patient to patient community. You may be able to connect with others there that have this condition. http://connect.mayoclinic.org/

By: Claudine Saxton

Claudine Saxton — Sun, 25 Sep 2011 22:29:18 +0000

I was diagnosed with Sclerosing Mesenteritis in 2005. I was examined by several Doctors in my area but none knew what to treat me with. I went to Mayo Clinic in Jacksonville, Florida. I must say how kind and caring all the Doctors were who saw me. (It is very frightening to have a rare condition that no one knows how to treat.) I was treated with steroids for about six months and also another medicine called colchicine. I am still on colchicine. My primary care Docotor checks my mass once a year with a CT scan. It is staying the same. I do still have a minor amount of pain but I can live with it. My life is good. I would love to hear from others with this condition, though I know there are not many of us around.

By: Claudine Saxton

Claudine Saxton — Sun, 25 Sep 2011 22:29:18 +0000

By: Dave Pflughaupt

Dave Pflughaupt — Wed, 24 Nov 2010 13:17:10 +0000

I have just been diagnoised with Sclerosing Mesenteritis, still not sure exactly what this is but am learning. My doctor was not familiar with this and this is his first case. I have been started on steroid treatment and if there is no results in 2 weeks, I have decided to contact the Mayo clinic for a second opinion. This is scary since I have 4 children and a very active life with them.