Mesenteric Panniculitis and Sclerosing Mesenteritis: Let's connect

Aaron @sqindy
You no doubt have been reading through comments by members with Mesenteric Panniculitis continue testing. I am glad you are making progress about the upper abdominal pain. It sounds like your doctor is ruling out a lot and hopes to know more in a few days.

I can relate to your trying to find peace in middle of not knowing. I am a patient at Mayo Clinic where I was told they knew what was happening but weren’t sure what to do about it. It would be about protecting my heart, then taking one symptom at a time. I bought into that process and together, we are making progress. One doctor told me it would be a marathon. That…..was 4 years ago (I think, time blurs after a while).

You mention a liver scan scheduled for this coming week. I am not sure if you mean perhaps an MRI or an ultrasound. Regardless, you can get a head start on addressing fatty liver and perhaps reduce some of the stress you are feeling by focusing on what you can do. I imagine what is good for fatty liver will be good for anything your doctor(s) ends up talking to you about.
- Eat a healthy diet
- Limit alcohol, simple sugars and portion sizes.
- Keep a healthy weight
- Exercise. Be active
- Don’t smoke

I am interested to hear how your next test goes and to hear what your doctor tells you this week.

@jlharsh this is Aaron. Thank you to the members, I did learn about the symptoms and they mentioned MP but they want to find the cause?

I don’t drink, I don’t smoke, I have a full time job, I run a full business and am building a small off grid homestead, but I need to lose about 60 pounds, and eat a better diet (these things you mentioned). I think they want to rule out cancer, or what’s causing this swelling? It could be anything, but it is there and they see it, but not sure what is ALL going on?

I do refrigeration work and HVAC, sometimes I see a problem, but it takes time finding the “root” of the problem not just “the symptom”. As you mentioned “they are trying to rule out” what it’s not, and maybe that will help with what it is?

I appreciate your kindness, it’s been rough alone here in Utah, but reading what members have written helps me feel like “I’m not totally alone”. Thank you for not being “AI”!

Aaron

@sqindy Aaron, It sounds like you have a good outlook, finding information and getting good input from members helping you work through this diagnostic process. This discussion is full of valuable comments.

It is interesting you explain the diagnostic process from an HVAC perspective. I get it! I have also thought of the process I have been going through similar to a lawn sprinkler system. A problem in one area can be identified and addressed as soon as you turn it on for the season and find it not working. Fixing one problem seems to make another one worse down the line, separate problems all impacting (or impacted) by others. I made reference of this to one cardiologist and her quick, kind response was, “but you are a person”. I still have her voice in my head at times when I need just that tiny pause of compassion.

You mention needing to lose weight and eating a better diet. Also, that is it difficult being alone in Utah. You may also want to check out Just Want To Talk Support Group here on Connect. Here is a listing on various discussions going on in that group:
- Just Want To Talk Support Group https://connect.mayoclinic.org/group/other/

Do you have family/friends to support you? I have a challenge for you….What is the top thing you could start doing, something super simple to improve your diet?

@sqindy
Be Brave. Try to get an anti-anxiety med to relax more
now until you are more informed. Sometimes things like this go on longer than we expect. Thats life all of us are with you.
Be your own best advocate...

I just found this wonderful discussion. Thanks for being here. I was diagnosed with MP a few years ago. I had a follow up CT 6 months later and it was confirmed. I’m a week into a flare up. They don’t happen often. This was bad enough to call off to take care of myself. I wasn’t sure what it was at first. I’ve had gut issues for years. An abdominal infection, diagnosed as Messenteric Adenitis and gall bladder removal have caused MP. I don’t get much help from my doctor. She won’t refer me to a gastroenterologist because I don’t have insurance. She said I need insurance for a referral and has left it up to me to call and see if they take cash pay patients. This is adding more stress to the stress that contributed to this flare up. I’m finding much more information on line. This flare up started with not feeling well, some abdominal discomfort, stomach pain and bloating. It progressed, a few days later, to a fever, extreme nausea, and weakness. I spent the day in bed and called off work the next day. Fatigue set in and all I could do was work and sleep for several days. I’m on the mend. A week into this and I’m still experiencing stomach and abdominal pain with some things I eat. Through google ai deep dive I’ve been able to find help. A low residue (low fat) diet is helping. I find that even some of those suggestions cause me stomach pain. With this affecting 1.5 % of the population, I consider myself lucky to have a confirmed diagnosis. I feel for those that are not getting the diagnosis because these symptoms present with so many other things and doctors don’t know to look for MP. I believe there are many people that go undiagnosed and meet with frustration. I try and spread awareness where I can. It’s important for this to be studied more. My understanding is that it is only found by CT during an active flare.