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Mesenteric Panniculitis and Sclerosing Mesenteritis: Let's connect
Digestive Health | Last Active: Sep 17 2:05pm | Replies (1609)Comment receiving replies
Thank you, @lisalucier for tagging me. Hi @aksandralynn, it is nice to meet you. I am sorry you are having so much discomfort and this is affecting your day-to-day.
I have been told I have diverticulitis but I really do not understand the root of what is happening with me yet. I am not very much help for you in that regard. I do understand how miserable you must be at times. I have had to blend my food or even go a day or two without eating just keep my pain tolerable. Getting to my current care team has been what has helped me but it has not been an easy fix. I relate to your comment that you can’t keep living like this. You can do this!
You mentioned how infrequent mesenteric panniculitis, also called clerosing mesenteritis occurs. You may have reviewed information Mayo Clinic provides about it already, but if not I am providing a link. I particularly want to point out:
- Mayo Clinic doctors care for more than 300 people with sclerosing mesenteritis each year.
- Mayo Clinic doctors and scientists are studying new ways to diagnose and treat sclerosing mesenteritis.
- There is a list of publications about sclerosing mesenteritis by Mayo Clinic doctors that may help your doctors. Scroll down to the Reearch section of the Doctors and Depatments page to find a link to this list.
https://www.mayoclinic.org/diseases-conditions/sclerosing-mesenteritis/symptoms-causes/syc-20355087
You mention going to the ER. How do they assess and treat you when you are there? How are you sleeping?
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@jlharsh
Hello and thank you for reaching out!! I am sad to hear you are experiencing the same! It is not fun. I had a bout of diverticulitis about 12 years ago. Took antibiotics and never had it return, until July of last year.
Since then it has been non stop in and out of the ER with "diverticulitis flares". We even cut a camping vacation short and considered postponing my dream trip to Greece (we did go 🙂 ) I've learned to stop going to the ER and switch to a liquid/clear diet for a few days and then slowly add in pureed/soft foods until things settle and feel better. I saw a GI Specialist (had an endoscopy and colonoscopy - all good except for a hiatle hernia). Tons of blood work and labs. I was told I had a slight fatty liver. Also worked with a nutritionist in his office monthly. The GI doctor told me to not take any NSAIDS and 'lose weight". I am a size 12/14. Though my tummy at times looks like I am 9 months pregnant. The nutritionist was very happy with my eating (low FODMAP) as well as a bit of Metiterrean style eating (I am greek, so I have always eaten in that style), I have been on two rounds of Bactrim when the flares show as '"complicated". In August I wasn't feeling well (middle and right side of stomach hurting as well as my middle back) and worried maybe it was my appendix or possibly a kidney stone, so I went in to the ER for imaging. I was told my diver wasn't complicated, but they gave me antibiotics just in case. But the ER doctor commented I needed to see my GP because the 'Misty Mesenteric Panniculitis' showed on the CT and hadn't gotten 'any worse or any better' since the CT scan I had 8 months prior. I had never been told about MP until that day. So I visited my GP and her comment was, this is very rare and referred me to a new GI specialist who I have met with once and is waiting on all my records to be sent to her for review. My GP also had me go for a MRI.
I really try not to go to the ER. I usually end up with an IV of toradol, a CT scan, maybe antibiotics or not and 'follow up with my GP'. But yesterday, and the day before I couldn't walk upright or sit, the pain had me moaning. Today pain is around a 7 down from a 10. I just drink bone broth, tea, water. I did manage to eat a scrambled egg this morning. I am so hungry. The only reason I slept last night was I had some leftover pain meds, which I took. I helped take the edge off.
I will review what you sent, thank you. I have done quite a bit of reading and also reached out to a MP Facebook group. I may seek outside medical care depending on what this new GI specialist says. My son lives in Scottsdale AZ and I know there are Mayo Clinic's there, so I have considered care there.
My labs don't show autoimmune (Sjogrens) or cancer, though I read sometimes they actually have to biopsy lymph nodes in the area affected. I do have a higher A1C (was on metformin which feels like poison in my body, so I won't take it any longer. I am at a loss and so tired of not knowing what is causing this. I feel like I just need to stop eating.
Thank you again for reaching out. I believe everyone's experiences help when trying to figure out something not well known.