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Posts (119)

Sun, Apr 14 2:24pm · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

I was the same way when I relapsed because it has taken so long to bounce back….if ever….so I have started reading again and I also began painting. This 'expansion' of myself has allowed me to put some value on what I am able to do and also provides me with something to focus on besides my physical health!

Sun, Apr 14 1:48pm · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

Hi @dinayo ,
What a nice post! I think most of us seem strong because we have been living with this diagnosis for a while. Someone on this site recommended a book titled, How To Be Sick by Toni Bernhard. This book helped me beyond belief! It comes from a Buddhist perspective and though I am not Buddhist, this book was written to appeal to anyone. Like you, I had to alter my mindset and concentrate on what I am able to do (though that may differ daily depending on my symptoms) rather than what I can no longer do. I also had to learn to limit my exposure to stressful situations and that was toughest on me because I had to learn to say 'no' or distance myself at stressful times. lol…I'm still working on that….

Sun, Apr 14 8:30am · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

Hi @dinayo
I think we all understand how you are feeling about Prednisone and it's side effects. I now have osteoporosis and have to get a shot (Prolia) every six months. I'm also having a terrible time weaning down off of Prednisone. I started at 40 mg. and have been trying to wean down for well over a year. I actually got down to 1 mg., which was a big tease because I relapsed and basically had to start over. Last week, my dosage was upped from 3 mg. to 5 mg. because I was beginning to relapse again, and I have been told to stay on this dosage until I have been in remission for 4-6 weeks before we begin to fiddle with daily dosage amounts again. I'm also on 200 mg. of azathioprine and 20 mg. of tamoxifen daily. I am also on CBD oil as well. For nausea, I take Ondansetron (4 mg.) as needed. Also, as needed for pain, I am on oxycodone and a different pill in the family called Targin (I'm from Canada, so this might be a different name for my American cousins!) which is a slow release milder pill that has an anti constipating agent in it, I believe. This bout has been very difficult and I have been battling this relapse since August 2017. I wanted you to know all of the meds that I am currently taking, so that you may discuss options with your doctor and I hope that this information will be helpful. I have learned that this disease presents itself differently for all of us, but there are many similarities for sure! I experience good and bad days and am noticing that the weather (April and November are typically tough months!) and stress (or upset) are major factors in my pain level. Some people notice that a change of diet can be helpful as well. I hope this info helps you. You are definitely not alone.

Tue, Apr 9 7:28pm · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

April is a tough month for sure! I just took some pain medication now! Anyway, I am very slowly weaning off the steroids (story of my life!) and hopefully, I won't relapse again. It is slow going for sure. My doctor has also upped the azathioprine while I wean down on the steroids. I'm hoping that we have found the right 'cocktail' this time. I am also hopeful that April's weather begins to calm down!! Like you, I keep smiling and forever optimistic!

Tue, Apr 9 5:18pm · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

Hello @pcfromfm ,
How have you been doing? This site got a little quiet for awhile!

Tue, Apr 9 5:16pm · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

Hello @dynayo,
Consider yourself connected! I have learned a lot on this site from fellow friends with the same rare disease. I am from Canada, but this is quickly becoming an international site! I have been diagnosed (through numerous CT scans and surgical biopsy) since June 2014. I went into remission for a couple of years, but relapsed in August 2017. Are you on any treatment plan?

Wed, Mar 13 7:58pm · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

Hah! My pain started in my right kidney area. He can check the results of 5 different ct scans and the report from a surgical biopsy! Get a new doctor!

Wed, Mar 13 12:35pm · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

Oh, and big on blame?? The caretaker that was supposed to spread salt on the ice that day (I had specifically asked her to do this and there were 8 large bags just sitting in the boiler room) has never been disciplined or even bothered to apologise to me. I wasn't the only one who fell. There were nine people that slipped and fell that day due to her negligence, but of course, I was the lucky one and won the MP prize lol……