Mesenteric Panniculitis or Sclerosing Mesenteritis

Having Mesenteric Panniculitis is so horrible, especially when you can’t find a Dr. to help. I even got in touch with the Mayo in Jacksonville and can’t get an appointment for 6 months b/c they are booked and won’t take any more appointments. I have called several gastric Dr’s and they don’t treat mp or even know what it is, I feel like I have no resources to help me. Yet, I continue to suffer daily. My primary gave me antibiotics and cortisteroids and it has helped some but symptoms never really go away. I’ve requested a MRI to make sure that I don’t have other underlying conditions. Waiting on insurance approval. I’m so glad that I have this site to see how others cope. I need all the info I can get.
LisaW.

Hi everyone. I went Q care with severe abdominal pain. CT was ordered. Doctor called me today with mesenteric panniculitis. I'm glad there was a reason for the pain. I'm not sure I like having this.

Hi @gallosusie1, welcome.
I moved your message to this long existing discussion about mesenteric panniculitis
- Mesenteric Panniculitis or Sclerosing Mesenteritis https://connect.mayoclinic.org/discussion/mesenteric-panniculitis-or-schlerosing-mesentertis-auto-immune-around-small-intestine/

I did this so you can easily connect with other members like @lisacw @lobell2 @lauraharris111 @erincorn @dwholey @kimh @floridamike and many more.

@gallosusie1, this is all new to you. Do you have any questions that you'd like to ask fellow MP-ers?

Hello I was diagnosed with Mesenteric Panniculitis in 2015 . When I was girst diagnosed they used metrondiazole, bentyl, Naproxen. I also went on a diet avoiding sugar, counting carbs and eating alot of vegetables, whole grains. But now I am trying a gluten Free diet as well. I do flare up about twice a year. About march 2022 I flared up took steroids for the first time they helped but unfortunately they ran my system down and I caught COVID. However I also do not have a spleen. Post Covid I had another flare up I figured I would try a home opathic approach using Turmeric and olive leaf extract with Vitamon D and vitamin C. Some relief but not enough. Today I had to call my Gastro and they are now going to try xifaxan. I do feel that diet does help. High fiber and foods that fight inflammation works to.

I am curious though due to multiple adhesions from several surgeries and no spleen would love to see if anyone else has the same issue and what works for them. My next try is a referral to the Mayo Clinic.
We do have a Hospital here in Chapel Hill NC that deals specifically with rare diseases.
Im glad I found this site.

Does anyone have this rare inflammatory disease? If so how do you deal with the pain and still function every day? I would love some advice.

Thank you

Good morning, @nedradenise, I found several members of the Connect community who share your disease and posted links to the discussions below. Also, you can type mesenteric panniculitis into the search window on top of the Connect page which will bring up a number of individual discussions for you.

The National Organization for Rare Disorders has more information on Mesenteric Panniculitis here:
— https://rarediseases.org/rare-diseases/mesenteric-panniculitis/

Are you currently on any treatment for this?

Hi Denise,
I'd like to add my welcome. @loribmt provided links to discussions in the Digestive Health group (https://connect.mayoclinic.org/group/digestive-gastrointestinal-problems/) related to mesenteric panniculitis.

I moved your message to the main MP discussion that @billymac65 started years ago and is still going strong today. See here:

- Mesenteric Panniculitis or Sclerosing Mesenteritis https://connect.mayoclinic.org/discussion/mesenteric-panniculitis-or-schlerosing-mesentertis-auto-immune-around-small-intestine/

I did this so you can easily connect with active members like @dwholey @erincorn @lobell2 @lauraharris111 @lisacw @gallosusie1 @mom2three @ellenos @royal @kimh @nancykeenan and so many more.

@nedradenise, is this a new diagnosis for you?

After a CAT scan I was told I had mesenteric panniculitis. My doctor does not agree. I do not know what the symptons are. I just have this pain when I wake up either in morning like 5 am or earlier. If I can go to the bathroom the pain disappears until the next morning. Heat on my back seems to help a bit. Can you tell me your symptons.

Nancy

I have mesentric pannicilities does not seem doctors know how to treat it , my symptoms sharp pain in my abdominal right site go and come back with dairhea , mild infection in kidney site make my lower back pain , Am taking I brophin to treat inflammation , using heat pad help to and change food diet really make sharp pain not coming back still have uncomfortable in my right side , I canot eat bread , pasta any wheat and Diary except yougert it help calm my abdominal no beans no lentils no read meat for now , no sugar processing, no dry fruits ,no caffeine, no apple , no beet ( this vegetable make feel like I have urine infection), I forget to mention one of major sign for this disease after I go to bathroom I got sharp pain , drink plenty of water

Can I join the support group , Thanks