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Posts (13)

Dec 4, 2017 · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

@poppy73

I have not.

You may find this short article from Harvard Medical School’s Harvard Health Blog:

https://www.health.harvard.edu/blog/fish-oil-friend-or-foe-201307126467

In general, I think we need to keep any recommendations of high-dose supplements in perspective.

That said, if there is any evidence or indications that it may help with mesenteritis, that would be interesting!

Dec 4, 2017 · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

@kimh

Being awakened at night has been a primary concern for me with this in terms of quality of life. Many people experience positional pain with mesenteritis. Some when lying down, others while standing or sitting. In my case, when sleeping in any horizontal position, my symptoms increase, and as my symptoms increase I wake more frequently and get less quality sleep.

For me, there are two things, primarily, that have helped with this:
1) Extended release Hyoscyamine (I use the brand name Symax Duotab), which was prescribed by a GI doctor.
2) Sleeping with my torso elevated. I use a Medcline wedge for this, but there are many different supports for this purpose available. An adjustable bed is probably the best option (my parents have one and they love it), although obviously expensive. I find that the Medcline works well for me.

I’ve also found that lying on the opposite side of the pain helps sometimes (my pain is on the left upper quad). Other times, stretching out my body on the side where the pain is helps. Using a heating pad on the abdomen at bedtime also seems to help me.

Keep in mind that this thing is a journey. Small steps forward in learning to live with it are significant.

I hope some of the advice here helps! Best wishes!

PS: In terms of being down, I’ve definitely been there. One thing that helped me enormously when I was feeling like my life was over was Toni Bernhard’s book “How to Be Sick.” She comes from a Buddhist perspective, but I feel like it would be helpful for anyone regardless of their individual beliefs.

Nov 22, 2017 · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

@vdouglas Yes, I’m happy to answer any questions I can about Mayo Rochester and my experience there.

Nov 21, 2017 · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

@kimh It is possible it is under-diagnosed, but it is also possible to overfit symptoms to MP/SM. Dr. Pardi, at Mayo, told me about a study where they looked at CT scans taken from a random sampling of patients who were being seen for other conditions. About 25% of those patients had MP based on the CT scan. Because of improvements in CT scans, we are seeing the MP diagnosis more frequently, but most diagnosed patients have no symptoms, so it is unclear at this time (as far as I can tell) how prevalent this may be in the general population and what conditions lead to symptomatic mesenteritis. Right now, there is a lot of research to do and I’m grateful for institutions like Mayo Clinic that are pushing forward the boundaries of medical knowledge in this and other areas.

PS: YMMV = “your mileage may vary” … abbreviations are a bad habit I have from being on the Internet for essentially forever. 🙂

Nov 21, 2017 · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

I visited Mayo Clinic in Rochester a few weeks ago and I thought others here might like an update or might find my experience useful.

I consulted with Dr. Suresh Chari and Dr. Darell Pardi. Dr. Chari will be directing my care in collaboration with Dr. Pardi, who seems to now focus on research and not on clinical care.

I can see why others have praised Dr. Pardi. He is very talented at describing what we know and what we don’t know about mesenteritis, what the research is saying, and how they think about directing care for the condition. We discussed my expectations and I described the impact of the condition on my life and what I thought we might be able to accomplish at Mayo (to increase my ability to live fully by, for instance, being able to exercise a little bit, but NOT to be pain free, or to “go back” to how I used to be, or even to have anything like a normal diet again). He said that I had “reasonable expectations” and that improving my quality of life was almost certainly achievable, which was good to hear.

They want to focus on low-risk treatments first and only move to treatments with more side effects and risks if we don’t have early success, which makes sense to me even though the first steps will be less aggressive than the treatment from University of Chicago Medicine, which I didn’t respond well to. They placed me on a ramp of Nortriptyline (on the basis that chronic pain conditions habituate the nervous system and mind to the experience of pain so that, regardless of the presence of absence of physical conditions, the mind experiences pain – which isn’t to say that they are claiming there is no basis for the experience of pain – and nortriptyline has been found to help in this regard although it isn’t the primary use of the medication) and a short trial of meloxicam (since I responded very poorly to the course of Prednisone I got from University of Chicago Medical Center) to see if I respond well to it.

Dr. Pardi also walked me through the long list of things we can try, the level of risk which they believe is justified by the level of impact of my condition, and how they would order the treatment options based on trying the lowest risk treatments first.

I also meet with Dr. Jon Tilburt at Mayo to talk about developing “mental resilience” and managing stress. Mostly I’m past the stress of thinking that I may be unable to work, which was the largest source of stress I had. Because my symptoms have improved over the last year due to diet, rest, and medication (extended release hyoscyamine having provide the essential ability to sleep enough to recover over the last 1.5 years) and because I spent a year talking to a good therapist about accepting that my life is now different (not better or worse, just different) I am managing pretty well now. Nevertheless, Dr. Tilbert provided a number of suggestions on things I might add to my “toolbox” to help me manage better going forward.

So that is my Mayo Clinic adventure so far. Everyone there was amazing and the facility is incredible. They are so thoughtful and caring and everyone I met was patient and helpful. They even took care of my family as I went to appointments. Oh, and I passed on the gratitude to Dr. Pardi that so many have expressed here and in the Facebook group.

Good luck to everyone as you manage this thing. I just wake up every day grateful to live another day and to be able to share experiences with the group here. I hope you are able to do the same.

Nov 21, 2017 · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

@kimh FWIW, I am 47 and I was diagnosed earlier this year. I’ve experienced symptoms since I was 31 years old. Looking at me, you would think I’m athletic and healthy and not in pain and struggling. There are stories in this and other groups of people diagnosed in their teens. Age may be a factor, but it certainly isn’t a determining factor. I think it is easy to accept (and, really, partially dismiss) disease when it is found in older people because that is “just part of aging” … but it is difficult to confront a chronic pain condition in younger patients because it is so difficult to understand and accept (even for physicians). YMMV, but that is my perspective on it …

Sep 30, 2017 · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

Hi @carbxbe8206, Sorry, you are right. I am thinking of hyoscyamine. I blame fuzzy brain this week. 🙂 Best.

Sep 29, 2017 · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

Hi @carbxbe8206 – Do you know why they say to stay away from Hydrocodone long term? I’ve been taking Symax Duotab (extended release hydrocodone) nightly for about two years now. It is the only thing that allows me to sleep well through the night. My doctors have so far said that if it is working for me, then I should continue taking it. The only side effect I experience is blurry vision, which is an annoyance, but nothing serious.