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Mesenteric Panniculitis or Sclerosing Mesenteritis
Digestive Health | Last Active: Dec 18, 2024 | Replies (1519)Comment receiving replies
I came across this posting while doing a search and decided to join because it looks useful to me. I was diagnosed with mesenteric panniculitis on February 20 of this year after going to the emergency room in extreme pain and not being able to keep any food or liquid down. I was brought back to the rapid response room from triage because of a high heart rate which i wasn't having any chest pains at all and the e.r. doc sent me for a CT Scan which showed the mesenteric panniculitis. i was told the pain could last from 12 to 18 months which is not fun. I was put on levaquin and flagyl and told to follow-up with a g.i. doc which i did with an associate of my regular g.i. doc.. She ran some blood work and put on me on another set of meds which worked for a bit then the pain came back again. Got a chance to talk to my regular g.i. doc when accompanyming my husband on his follow-up visit and mentioned that i was diagnosed with this. I was told if i am still having issues to let him know after my husband's endoscopy which i did and was prescribed another med which helped for a bit then stopped worked like the other meds i had been on. While waiting for my husband to come out of surgery for a muscle biopsy i received a call from my g.i. doc after leaving a message to let him know that the pain came back full force a couple of days prior with nothing helping. He had me go under another endoscopy which didn't show anything to the naked eye since he couldn't do a biopsy since I am currently on coumadin and didn't come off since this was somewhat an emergency. I was put on 3 new meds at the time which somewhat helped and like before didn't last very long helping the pain. Saw him for my follow-up last monday and put on another med along sending me for another set of x-rays that showed the area that does not show up with a colonoscopy and endoscopy which those came back normal. My doc is now stumped on what to do to help control the pain so he is at the point he is sending me to either Johns Hopkins or Medstar Georgetown Hospital for further evaluation. I don't mind dealing with pain but if i get a "flare-up" it hurts to the point i can't do anything. Thanks for listening and any suggestions you might be able to provide.
Replies to "I came across this posting while doing a search and decided to join because it looks..."
Very helpful indeed, thank you!!
I suppose losing one's hair is not such a terrible sacrifice if the pain and inflammation goes away. I have heard that if you are diabetic it can really upset your blood sugar levels. Even if you aren't diabetic, I have heard that it can. I have not heard about the hair loss. I hope everything works out well for you.Best wishes and good health to you.@vdouglas
I was first diagnosed with this disease in 2002, since the this doctor passed away. My MD has been supportive but lacks the knowledge a specialist might have. Although she has referred me to several who don't even care to discuss or understand this disease.
Since turning 65 last spring the pain is almost unbearable. I don't know what to do or where to turn.
I would like to add that what got me through the bad spells over the years was a micro current machine through a Natuapathic Doctor, who gave me a prescription for my own...
Actually I am going to a naturopath on Monday and was wondering what a micro current machine is....
My naturopathic doctor suggested the Inspirstar, which she programmed...it just has 4 electrodes I place near the pain and run it through its cycle. It did take a prescription to get that type.
Thanks! I will update everyone after Monday regarding my appointment with the naturopath. Tonight, I am going to try to take a sauna. I have read that sauna heat helps reduce inflammation. I have also heard the same about Brazilian nuts....
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http://www.ibsdiets.org/fodmap-diet/fodmap-food-list/ This was very helpful to me. However, I'm not giving up garlic. When you irritate the intestines by eating foods that are too high in fiber, or various other problems, the intestine is going to get irritated and inflamed. when I was in the worst pain, I had a lot of chicken broth, baked potatoes, white pasta, white bread, white rice. In fact, the GI doctor said those things would help to calm the inflammation and irritation. It did. I lost some weight because I wasn't eating how I used to. But I did try to add herbs so there would be some kind of "green" until I could start adding in vegetables again. I'd say it would be worth a shot. You have to be really careful what you eat and how much. Small meals or snacks are much better than the three big main meals most people are used to eating. I hope this is helpful.
@bertbiz