About

Member has chosen to not make this information public.

Pages

Member not yet following any Pages.

Posts (92)

Nov 19, 2018 · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

Yikes! Well a biopsy would be definitive. I'm not sure if I was born with it, but I have heard that symptoms can present themselves in three different circumstances, which are: underlying condition of lymphoma (not me thankfully), abdominal surgeries (I have had several), or severe back trauma. My symptoms came on two weeks to the day of a horrible fall on black ice. My specialist believes 100% that my symptoms were brought on by the fall. For pain management, I am on CBD oil, Targin (oxybased, mild slow release that does not constipate) and percocet for breakthrough pain. I hope this helps you.

Nov 19, 2018 · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

Hi @jamokl246 I'm sad to hear about a rush to diagnosis in your case. Have you had a CT done? When I was initially diagnosed in 2014, I had already had 3 CTs in my abdominal area and to rule out anything more ominous (lymphoma, because the inflammations were growing), I had a surgical biopsy which clearly showed MP. Has this option been given to you? Not sure about MP body habits? When I came out of remission in August 2017, one of the 'tell tale' signs was rapid weight loss. Being 'too' thin, actually makes sense because you have no appetite with this disease. There is always the possibility that you may have more than one thing going on as well, so I wouldn't entirely rule out IBS, but I would expect that you should at least have a CT done, just to be a little more confident in your diagnosis. I hope this helps you at your next appointment and good luck. We have all been there with disbelievers lol!

Nov 16, 2018 · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

Hi @stacy72 This symptoms of this disease can be treated to help alleviate your symptoms. There are studies (and colleagues!) that your GI could reach out to for direction. I am taking Prednisone, Tamoxifen, Azathioprine and CBD oil to help shrink the inflammations and encourage remission. For pain, I am taking something called Targin (a very low dose of oxy that is a slow release medication that does not cause constipation) and for breakthrough pain, I am taking oxycodone, but sparingly. I hope this helps you.

Nov 14, 2018 · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

Hello @cartagena13 ,
I'm sorry and relieved (is that possible?) regarding your diagnosis. I'm not sure if you can travel to Canada for health care. From what has been shared on this site, it would seem that I am receiving similar treatment to my American friends. For this recent bout, I am currently on CBD oil, prednisone, tamoxifen and azathioprine. I hope this helps you.

Nov 12, 2018 · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

Hi @jessienalu, I agree that you absolutely need real help. Having said that, I am my GP's and GI's only patient with this disease and they are coordinating my health care. As long as your doctor is comfortable reaching out to colleagues for advice, you should be okay. There is no cure unfortunately and not much reading out there, but we can all share our experiences with one another to help. The one thing that I have noticed is that this relapse is quite different than when I was previously diagnosed almost 5 years ago. There is a lot of trial and error involved as well as keeping stress to a minimum and certain physical activities as well (sweeping, cleaning windows and….sad to say….yoga!)

Oct 30, 2018 · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

Hi @jessienalu
I want to say "welcome", but….instead I will give you a quick recap on my experience and hopefully it will help you when you get to your gastro appointment.
Two weeks after suffering a severe back trauma (bad fall on black ice), I came down with pain in my right kidney area that radiated to my right abdominal area. After 3 CTs, a week long hospital stay (trying to get the pain under control) and a surgical biopsy (to rule out lymphoma), I was formally diagnosed with MP. I was put on steroid therapy (Prednisone) for about 6 months. I was on 40 mg. daily for three months and began weaning down 5 mg. weekly until I started suffering from esophageal spasms (side effect of Prednisone) when I was hospitalised for another 10 days and eventually taken off the Prednisone. While Prednisone brings it's gifts (weight gain, sleeplessness, facial hair, moods), it also put me in remission for about 2 and a half years. And I mean complete remission where I was beginning to forget that I even had MP. Unfortunately, after a stressful situation (my father was diagnosed and ended up dying of cancer all within a short 3 month period), I fell out of remission. That was August 2017. I am still off work trying to get this thing under control. At the moment I am on (still!) Prednisone 5 mg. daily, Tamoxifen 20 mg. daily and Azathioprine 150 mg. daily. This 'cocktail' has given me some improvement pain wise however, every medication brings side effects which I am willing to deal with as long as the pain begins to go away. I hope that this helps you. Someone on this site also recommended a book called, "How to be Sick" by Toni Bernhard which comes from a Buddhist point of view. I am not a Buddhist, but found this book extremely helpful while trying to deal with a mind that wants to do so much combined with a body which restricts me from doing those things. I hope my experience can help you.

Oct 23, 2018 · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

Hello @kleniek
I have been finding that although most of us have 'similar' symptoms etc., there is still a 'try and see' approach when it comes to treatment. I have been battling a second relapse for over a year now, trying to get on the treatment that will help me back in to remission. Maybe this is due to lack of research? Anyway, when I was first diagnosed, (also surgical biopsy) I was put on a strong steroid regimen. I was in remission for over two years and 'forgot' that I ever had this disease. Then by August 2017, I relapsed. I was put back on a steroid regimen (Prednisone), but not as harsh of a dosage as the doctor was hopeful that we caught it 'early'. Unfortunately, I have been on Prednisone ever since. Each time I try to wean down, I seem to go through a relapse, which tells me that the steroids are still effective. My doctors (I'm from Canada btw) are keeping me on a low dose for the time being, but have also prescribed tamoxifen and azathioprine too. I am finding this (can we call it a cocktail??? lol) combination to be helpful for the pain, but am currently experiencing some side effects of the other meds. Livable, but I am still hopeful for the days of remission. I will just end by saying to make sure that you have a good GP and GI. I also have a rheumotologist on my team. I have been lucky in that my GP and GI have been working hand in hand to try to help me. I am their only patient with MP, but thankfully they are not too proud to reach out to colleagues for advice. I hope my little journey can help you…

Oct 7, 2018 · Prednisone Side Effects in Men's Health

Hi @guener
Thanks for the heads up! My doctor has ordered weekly blood work and I believe for the reason that you mentioned (WBC). Today is my first day on it, so I haven't felt any difference in my condition yet, but I have been experiencing dizziness. Hopefully that will settle.