BillyMac65
@billymac65
@billymac65
Posts: 14
Joined: Dec 06, 2012
Mesenteric Panniculitis or Sclerosing Mesenteritis
I thought I would start a discussion for patients with Mesenteric Panniculitis. From what I know, this auto-immune disorder has three stages to it, each with differing names (Mesenteric Panniculitis, Schlerosing Mesenteritis, Retractile Mesenteritis). Typically, this appears to be in older individuals with some other under-lying problem (Lymphoma, tumor, diverticulitis).
I have an atypical presentation because I do not have an underlying cause. The doctors seem to be hoping for Lymphoma to appear so they can treat it and have the auto-immune go away. I am interested in hearing from others with this. I had this diagnosed in 2011, so I am interested in hearing more about what this is like to live with. I want to hear from others who also have an atypical presentation. Did is come back? Also interested in hearing from those with Lymphoma. How was the treatment? Did it address the auto-immune?
Pretty much, I am interested in hearing from anyone who has had this, so i can better understand it, and not feel so alone with this!!
Bill
Liked by fishcox, Bhamilton, jimmymac, LS4 / Lisa Schwart Tulsa Oklahoma (FB page) ... see all
Von, Volunteer Mentor
@vdouglas
@vdouglas
Posts: 189
Joined: Mar 06, 2015
@vdouglas Just want to make a note that although black stool is a symptom of bleeding, and should not be taken lightly as stated in two posts.
It should be noted, before you panic, that it could also be something simple. Maybe something you have eaten, or if taking Pepto Bismol or Bismuth, that will very likely give you black stool.
Hello @danielcamp, Nope the comment was not meant for you specifically, Sorry, it was meant for everyone. I am speaking from experience and made the comment because there are a lot of sore tummy’s out there reading these posts and possibly some taking Pepto Bismol/Bismuth on occasion. I didn’t want them freaking out thinking they had internal bleeding, we have enough problems.
How are you doing? any progress with the doctors?
danielcamp
@danielcamp
@danielcamp
Posts: 7
Joined: Feb 03, 2017
@vdouglas Just want to make a note that although black stool is a symptom of bleeding, and should not be taken lightly as stated in two posts.
It should be noted, before you panic, that it could also be something simple. Maybe something you have eaten, or if taking Pepto Bismol or Bismuth, that will very likely give you black stool.
Its ok, just making sure cause I did not want to seem rude and not answer your question. As for everything, just the usual tired and my chest is hurting more, out of breathe a lot. But I am seeing a surgeon Wednesday, so here is hoping he does what is needed. I really need to start getting treated for whatever it is.
Liked by kdw10, Kanaaz Pereira, Connect Moderator
danielcamp
@danielcamp
@danielcamp
Posts: 7
Joined: Feb 03, 2017
@vdouglas Just want to make a note that although black stool is a symptom of bleeding, and should not be taken lightly as stated in two posts.
It should be noted, before you panic, that it could also be something simple. Maybe something you have eaten, or if taking Pepto Bismol or Bismuth, that will very likely give you black stool.
I have to ask is it normal to be tired to the point you cant even walk 5 feet without needing to lay down? Or that your abdomen is so hard it is like hitting bone.
REPLY
Von, Volunteer Mentor
@vdouglas
@vdouglas
Posts: 189
Joined: Mar 06, 2015
@vdouglas Just want to make a note that although black stool is a symptom of bleeding, and should not be taken lightly as stated in two posts.
It should be noted, before you panic, that it could also be something simple. Maybe something you have eaten, or if taking Pepto Bismol or Bismuth, that will very likely give you black stool.
Sorry you have to deal with that. I have had bloating and it does make it difficult to breathe but I never had it quite that bad. Mine would come and go. I had to eat very small amounts of soft food which did help to some degree.
I still deal with fatigue but not that bad. We have had members on this board mention extreme fatigue. One is @dennisl27. He is having surgery on the 15th of this month and mentions his struggles with severe fatigue. You might want to look back through the posts to see his comments.
Liked by Kanaaz Pereira, Connect Moderator
Von, Volunteer Mentor
@vdouglas
@vdouglas
Posts: 189
Joined: Mar 06, 2015
@vdouglas Just want to make a note that although black stool is a symptom of bleeding, and should not be taken lightly as stated in two posts.
It should be noted, before you panic, that it could also be something simple. Maybe something you have eaten, or if taking Pepto Bismol or Bismuth, that will very likely give you black stool.
I’m glad to hear you are seeing the surgeon Wednesday, please keep us posted, and of course I’ll pray for you.
Von, Volunteer Mentor
@vdouglas
@vdouglas
Posts: 189
Joined: Mar 06, 2015
@vdouglas Just want to make a note that although black stool is a symptom of bleeding, and should not be taken lightly as stated in two posts.
It should be noted, before you panic, that it could also be something simple. Maybe something you have eaten, or if taking Pepto Bismol or Bismuth, that will very likely give you black stool.
@danielcamp, This link has some information that may answer som of your questions. https://rarediseases.org/rare-diseases/mesenteric-panniculitis let me know if it doesn’t work.
@danielcamp
In reply to @vdouglas
If you are talking to me it was already checked. Black stool is not from food, or medicine taken.