Mesenteric Panniculitis or Sclerosing Mesenteritis

Due to my CDIFF, I can definitely feel that there is a problem with my small intestines. I have 4 GIs and they know very little about the small intestine. Been bringing it up for nine years. I was the one that educated them that it only made sense CDIFF affects the small intestine. Finally, GIs agree. How were you diagnosed...through endoscopy. What test is needed for diagnosis.

Hello @obert22,
I'm so sorry to hear about your diagnosis, but we're glad to have you on Connect.

@bertbiz, @billindc, @lisas444, @billymac65, @snoopdog, @hardclose, @doron, @mjg1160, do you have any advice for @ober22?

I would also like to introduce you to @vdouglas, @amyd, @danrofohio, @vmc123, @jlap84058 who have discussed prednisone and its efficacy while dealing with Mesenteric Panniculitis, Schlerosing Mesenteries.

@obert22, what symptoms have you experienced that led to this diagnosis?

Hi @obert22, So sorry about your diagnosis. This is a great place to get information. I was diagnosed after having a CT Scan in May of this year. The radiologist that read my scan had never seen a case of MP before, only read about MP. I started on 40mg of Prednisone and was tapered off. It worked great for me. I was on it for a couple of months. All of my inflammation disappeared, as was shown on my second CT Scan. When I was first diagnosed I had a lot of soup, mostly clear broth and made Vanilla Kefir and banana smoothies adding cinnamon for taste. The doctor suggested white rice, white bread, pasta and eggs to start with. After that I found that the FODMAP diet was really helpful. http://www.ibsdiets.org/fodmap-diet/fodmap-food-list/ I joke that it's like playing Russian Roulette with food. When you want to introduce something new into your diet, you have to do it slowly. I am eating some cooked greens, like spinach and fresh steamed artichokes, although the FODMAP says artichokes are a no no. I am no longer eating anything with corn (I miss popcorn the most) or anything with onions (I miss sauteed onions). I have tried scallions and shallots, those seem to be better. When I cook I add chives and powdered garlic, onion powder and paprika. Nothing too spicy, or I suffer a bit. That's part of the Russian Roulette of it all. I have found that eating smaller meals, and not eating after 7:30 is helpful. For me, exercise is key. I walk on the treadmill, or if it's not freezing here in MN, walk outside for 35-45 minutes every morning. I have a job where I sit a majority of the day, so I try to get up and stretch so that I'm not slouching forward squishing my insides. I get a good 6-7 hours of sleep every night. (I'm starting to sound like a bore). But rest, exercise and being really careful how much and what I eat has helped me feel better. The only thing that happened from taking the Prednisone is I have had some hair loss, but that seems to be subsiding a bit. Having this group to communicate with has also been a great resource. So that's my story and I hope it's helpful for you.

Roberta

Thanks for your prompt replies.

I have been suffering with issues for some time. Nausea, diarrhea, headaches, fatigue, stomach distention, pain in my right side. But out always seemed to subside or I at least dealt with it. Monday morning I woke up at 3 AM in a lot of pain and I was really sick. I finally broke down later in the day and went to the ER fearing an appendix issue. Ultrasound and ct scan didn't show anything so they sent me home. I started to feel a little better... And then ate. I was miserable again. Back to my primary doctor for labs. Then I was back today for follow up. Did another ct scan this time with contrast and there it was. Matched my symptoms perfectly. So in the prednisone for a few weeks to see if we get any improvement and probably a referral to a GI after the holidays.

Hello @obert22, Welcome to this site. I hope you are not in too much pain since that is what usually leads to a CT and diagnosis. Sounds like your Dr.'s are not wasting a lot of time, that's good. I have not taken Prednisone but as you mentioned it can work quickly and can work well. Getting a handle on the inflammation seems to be the main issue in the beginning. Something I would recommend is not to eat large meals that fill your belly. Also avoid foods that create gas and bloating which may lead to some painfull hours to follow. Read through the thread from the beginning, there are many suggestions on Diet.One thing I would share is get a copy of any test reports you have had. No big hurry but it's easier if done soon. Get a copy of your CT from the radiologist if that is what you had. I use those plastic binder inserts that you can just drop reports<br> into. The second thing is if you don't feel something is right get a second opinion. You are at this site because you are being proactive which is the way you need to be. If anyone ever mentions operating, I would suggest a second opinion for sure.I hope this helps for a start. It would be helpful to others if you let us know how you progress.Best wishes and I hope all works out well for you.@vdouglas <br> <br> <br> <br> <br> <br> <br>

Hi, my name is Dennis and I have recently been diagnosed with mesenteric panniculitis. I even went for a 2nd opinion and it was further confirmed by them as well. I am not one who would normally join a chat group as I am a pretty private person when it comes to my health concerns. But, I felt it was imperative to reach out of my comfort zone and join your group as I am at a loss as what to do. My primarary care physician has never heard of this and has pretty much given up and handed me info about it and told me to go see a specialist. I have gotten an appt with a GI in a week.
I am extremely fatigued, heavy limbs, pain in my abdomen and bloating. My wife is battling stage 4 inflammatory breast cancer and I have been her primary caregiver. So, our combined depressive moods have been growing each day. I don't know who to turn to or contact to speak to. I know I have to change primary care physicians but quite frankly don't have the energy to go thru the steps to do this. I will do it because I have to take care of and provide for my family. I also don't know what to tell my employer, as no one has ever heard of this disease, and at this time I cannot work.
If anyone has any advice for me I would appreciate it.
Thank you

Dennis, sent you a pm.

My experience with Crohn's, inflammation, intestinal wall inflammation, and inflammation pain. All are products of the liver. My knowledge is based on a 1960 treatment in Italy. My liver was cleaned and had no pain or inflammation for 3 years after two week treatment. If you are eating bread that welcomes inflamation. I can now play with inflamation and its pain. My medicine is raw vegetables. Today I made a salad with arugula, zucchini, broccoli, avocado, spinach, and tomatoes. With olive oil and lemon as dressing. Within one hour I feel the lower of the pain if it is almost all gone. I ate few apricots they usually have preservatives and I felt the slow pain on my hands. The liver is a super intelligent organ and produces a lot of illnesses. If you learn how to work with it you can regain all your health. For 1 1/2 year now I took control of my health. I learned that the liver likes vegetables specially raw. I have tested multiple times and yes I agree with the experts since it works. What you put in your mouth is effecting your health. Also stress is a big contributor. Check DrBerg.com have a lot of YouTube videos explaining how the system works. Learn about food and stress that is your healthier future.

Hi Dennis Welcome, you made a good choice to reach out on this site. This is out of my comfort zone also but I was compelled to do it just like you. Your situation is a heavy one to bear. Not many have to deal with two major illness in a family, that is tough. The biggest part of getting through all of this is for both of you to stay as positive as you can and as healthy as you can despite your challenges.
All of the advice I would offer you cannot be put into this one response. I do not know your entire situation. I do not even know if I can help but I'm sure going to try.
First, if you absolutely cannot work, contact your HR Manager or Manager at work, apply for family medical leave FMLA. Secure your job and health care benefits. Use your Vacation and sick leave first if you have those benefits. Tell your employer your situation the best you can. Use the information that your Doctor gave you describing Mesenteric Panniculitis.
I'm going out on a limb but your wife should be entitled to Medicare/Medicaid and Social Security benefits if she doesn't have that already. Medicare/Medicaid should help your wife/you with home care.You absolutely need a family member or friend to help you arrange this. Ask them for help. If you do not have a family member available call your Pastor or someone you know from Church. If you do not belong to a Church and no one to reach out to Let me know.
Probably a lot of what you read about MP (even on this site) is going to sound very scary, forget that. How are you right now? That's what is really important. Are you able to manage? if you are able to manage, focus on the above. Once you have help you can focus on systematically knocking out some issues of your illness.
Here is what to expect. I am not a Doctor, but right now I'm going to tell you that what you have is an inflammation in the middle of your body. It can cause pain and bloating and lack of energy as you have described. It could get worse or stay the same. It could get better as did mine after a period of time. If your symptoms are very bad you may need medication to reduce the inflammation. You may need pain medication. This is a basic explanation which is what you need to know right now. Read through this site and follow the diet that is recommended. If you cannot find it I will copy it for you. Your diet should help with the bloating and pain. Eat small soft, mild meals. I ate things like cottage cheese, oatmeal etc.

Let me know how things go, I'll pray for your family.
Von (vdouglas)

Hello @dennisl27,
I can only imagine the pain you're going through, but I'm so glad you joined this discussion on Connect. You will see that there is a wonderful community here, ready to offer the support you need right now.

@bertbiz, @billindc, @lisas444, @billymac65, @snoopdog, @hardclose, @doron, @mjg1160, @obert22, could you please offer some advice and insight for @dennisl27?

Our health plays such a vital role in so many other aspects of our lives; once you see the GI, and he confirms the diagnosis, do consider letting your employer speak to the doctor? Are you able to call or contact The State Disability Council in your state? They often have information and programs available for people experiencing an illness such as yours.

@dennisl27, as you embark on this tough journey, not only as a patient, but as a caregiver for your wife, I would sincerely encourage you to look at the Caregivers group, here: http://mayocl.in/2h1ttpY
I'm sure you will find it a great resource and source of comfort.

How are you managing your symptoms, now?