No answers yet. Inflammed, bloated and abdominal pain

Posted by yrose @yrose, 3 days ago

Hi Everyone,
I am writing hoping initially share what has happened through my journey with this new diagnosis since March, 2019. It all started with a few months of bloating, abdomen pain, loss of appetite, and irregular bowel movements. Then in March, a few days of abdomen pain, and eventually, a trip to ER with vomiting, and more intense abdomen pain. I had complained about a lot of bloating to my doctors who seemed indifferent to my complaints until it took me to ER with more dramatic symptoms. Tests were done including a CT scan. It showed that I had mesenteric panniculitis, a rare autoimmune disease with the mesentery inflamed forming a ring formation that appears on the CT scan. My family doctor referred me to many doctors, diuretic for fluid/abdomen.
I was seen by a colon doctor, he suggested seeing a gastroenterologist who found via endoscope a small hiatal hernia , inflamed stomach, lower esophagus and treated via meds for this condition. Did nothing for the abdomen discomfort that happened every time I ate. Once he treated the hiatal hernia, he referred me to an oncologist. The oncologist suggest he would follow me up with another CT scan in 6 months to make sure this is not lymphoma or developing into it. October, I had the follow up scan and the condition showed some improvement. So, he has scheduled another scan in 8 months to check for changes. The only treatment for the abdomen inflammation that has been done, is my family doctor referred me to a dietician who has put me on probiotics, calcium tablets, stomach and hepatic enzyme tablets, and a fiber powder. At each doctor’s visit, each doctor seemed puzzled by the condition, unsure what to address as to treatment. I am unsure what to do. Wait and see what happens? I do not even know what specialist to go to that knows what to do.

Liked by martft4

Hello @yrose, Welcome to Connect. I'm sorry to hear that the doctors have not been able to diagnose and find a treatment that helps your condition. It sounds like you have seen a lot of different doctors and none have been able to figure it out. Have you thought about getting a second opinion at a large teaching hospital or at Mayo Clinic where a team of different specialists work together to diagnose your condition?

If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

Mayo Clinic has some information on Gastritis which sounds similar to the symptoms you describe – https://www.mayoclinic.org/diseases-conditions/gastritis/symptoms-causes/syc-20355807

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Hi @yrose, I changed the title of your discussion to be more specific to the symptoms you describe rather than just your name. This will help other people find your message and respond. Please let me know if you would prefer a different title than the one I chose. Since many of your symptoms are digestive/GI in nature, I added your message to the Digestive Health group as well. I recommend browsing the discussions in the Digestive Health group here https://connect.mayoclinic.org/group/digestive-gastrointestinal-problems/

You also mentioned that you have mesenteric panniculitis. I think you'll find this discussion group helpful.
– Mesenteric Panniculitis or Sclerosing Mesenteritis https://connect.mayoclinic.org/discussion/mesenteric-panniculitis-or-schlerosing-mesentertis-auto-immune-around-small-intestine/

How are your symptoms these days? How are you managing the bloating and pain?

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@colleenyoung

Hi @yrose, I changed the title of your discussion to be more specific to the symptoms you describe rather than just your name. This will help other people find your message and respond. Please let me know if you would prefer a different title than the one I chose. Since many of your symptoms are digestive/GI in nature, I added your message to the Digestive Health group as well. I recommend browsing the discussions in the Digestive Health group here https://connect.mayoclinic.org/group/digestive-gastrointestinal-problems/

You also mentioned that you have mesenteric panniculitis. I think you'll find this discussion group helpful.
– Mesenteric Panniculitis or Sclerosing Mesenteritis https://connect.mayoclinic.org/discussion/mesenteric-panniculitis-or-schlerosing-mesentertis-auto-immune-around-small-intestine/

How are your symptoms these days? How are you managing the bloating and pain?

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My symptoms seem to be improving a bit for now. But I must watch closely what I eat and how much I eat at one time. I do best by eating snacks several times a day rather meals. I am unsure what is from my hiatal hernia and what symptoms are from the mesenteric panniculitis. I will do fine then have a difficult day that I must stay near the bathroom. Ss I understand, the mesenteric panniculitis refers to the stage II phase of the condition
I have concerns as to appropriate care of the condition. My doctors were puzzled, then when the hiatal hernia was found all efforts switched to it. Finally, the enterologist seemed done with me once the hiatal hernia was stabilized. The oncologist took the role of monitoring the condition. The only treatment I received is the follow up, CT scan, and a dietician having me take probiotic, fiber, digestive, and hepatic enzymes. Nothing to address the inflammation. I am unsure whether to wait to see if at some point flares up and worsens the seek further treatment? I felt that the enterologist quit the process.
Darlene Magnabosco

Thank you for contacting and sharing some of your information.

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Hi @yrose,

Here is some information from Mayo Clinic ,https://www.mayoclinic.org/diseases-conditions/sclerosing-mesenteritis/diagnosis-treatment/drc-20450343 Several medications have been used to treat sclerosing mesenteritis, such as azathioprine (Imuran, Azasan), colchicine (Colcrys, Mitigare), cyclophosphamide and thalidomide (Thalomid), along with corticosteroids like prednisone.
If sclerosing mesenteritis advances to block the flow of food through your digestive system, you may need surgery to remove the blockage.

I’d sincerely encourage you to view the discussion group that @colleenyoung mentioned. In the meantime, I’d like to introduce you to a few members with the hope that they will join this conversation and share their insights. Please meet @kimh @pcfromfm @elle1233 @billindc @gussypup333 @racecar46 @jarnold246 and @mp333.

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Hi @yrose-thank you for joining our group! We sure have all have had most of your experiences! You are in the right place! I too had the “perfect halo” show up on the CT. I was diagnosed many years ago and generally found somethings that work for me. Right now I -with many diet specifications, a positive outlook, much rest and a few giggles a day -can actually manage a somewhat good life and even travel with little pain and only some discomfort. It’s all good really. It can be overwhelming for sure. But knowing there are others to talk to helps tons! Sending good thoughts -track your food and activities to see what you can manage and not. Go to bed early every night you can-rest as much as possible. Talk to us and ask lots of questions-we are all a little different but share much. ❤️

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@pcfromfm

Hi @yrose-thank you for joining our group! We sure have all have had most of your experiences! You are in the right place! I too had the “perfect halo” show up on the CT. I was diagnosed many years ago and generally found somethings that work for me. Right now I -with many diet specifications, a positive outlook, much rest and a few giggles a day -can actually manage a somewhat good life and even travel with little pain and only some discomfort. It’s all good really. It can be overwhelming for sure. But knowing there are others to talk to helps tons! Sending good thoughts -track your food and activities to see what you can manage and not. Go to bed early every night you can-rest as much as possible. Talk to us and ask lots of questions-we are all a little different but share much. ❤️

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Hi@yrose-Welcome. I agree with everything said. I would like to add, reduce your stress (lack of information on this illness created a lot of anxiety for me, finding this group chat helped me kick start my healing process) I started to monitor all aspects of your life in hopes of improving my health. You will find a lot of what you do personally can greatly impact your health. I have managed to reduce my symptoms with daily prayer, monitoring my food intake, research and implement dietary changes that improved my immune system and reduce inflammation (lots of fruit, veggies and fish works for me). I rest when needed, drink lots of water and take vitamins that are known to reduce inflammation. I have added a daily spreadsheet that monitors my breakfast, morning snack, lunch afternoon snack, dinner and evening snack, with a section devoted to notes on how I feel and where my aches and pains. I will add, this was not a short-term illness, I have been dealing with stomach related issues for 4 months now. It took several doctor appointments and after my CT scan that noted "Unchanged mass-like stranding at the root of the mesentery. Findings are nonspecific and may be seen in the setting of mesenteric panniculitis" nobody was convinced of my diagnosis. Two different surgeons refused to perform a biopsy indicating it was too risky and that my haziness was not severe enough to warrant a risky biopsy. So I'm on a watch and wait. As of right now, I continue to feel better every day. I know that I am improving my overall health which is all I can do to beat this and anything else that comes my way. I hope this helps. I appreciate all those who took time to write on this site. It truly helped me with my research and directions. Best of luck and good wishes.

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Try eliminating all inflammatory foods – all dairy, processed foods and meats. Do continue with the meds your doctors are prescribing!

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I had ALL ur symptoms and was diagnosed with GASTROPARESIS DISEASE .U NEED TO ASK FOR A STOMACH EMPTYING STUDY TEST !!! ONLY TEST TO DETECT IT AND IT IS NEVER DONE !!! U NEED TO DEMAND IT ! GOID LUCK AND FEEL BETTER 😊 LISA

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@schmoo

I had ALL ur symptoms and was diagnosed with GASTROPARESIS DISEASE .U NEED TO ASK FOR A STOMACH EMPTYING STUDY TEST !!! ONLY TEST TO DETECT IT AND IT IS NEVER DONE !!! U NEED TO DEMAND IT ! GOID LUCK AND FEEL BETTER 😊 LISA

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Hi Lisa @schmoo,

Welcome to Connect. There are some incredibly informative discussions taking place about gastroparesis, and I’d sincerely encourage you to read through them:
– Gastroparesis* https://connect.mayoclinic.org/discussion/gastroparesis/
– Post-operative Gastroparesis https://connect.mayoclinic.org/discussion/gastroparesis-5/
– following gastroparesis diet while managing constipation https://connect.mayoclinic.org/discussion/yrose/

How are you managing your symptoms?

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Hi yrose@yrose
As you stated it (It all started with a few months of bloating, abdomen pain, loss of appetite, and irregular bowel movements. Then in March, a few days of abdomen pain, and eventually, a trip to ER with vomiting, and more intense abdomen pain). It is seeming from your statement that all symptoms come at once in two periods of time, one before the other. My first question is, what is the probability of the symptoms of being genetics as it is existed in any of your family member before?, the reason why I am thinking in this way is that you says (At each doctor’s visit, each doctor seemed puzzled by the condition, unsure what to address as to treatment), and many research studies about the unexplained genetic diseases are not not fully come to a conclusion, besides it might take too long to figure out the treatment t of it. Second, the area where we live and water that we drink may play a significant role in our health. So following a prescribed diet by your doctor. I believe to be away from fatty food with less drinking may help also. My words and advice is only what I think and is not a prescription for anyone, and I hope you getting well soon

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