Talk:Idiopathic sclerosing mesenteritis/Archive 1
prior post
[edit]Here is a good deal more information than the article provides. Unfortunately I do not have citations ready to hand, so I am putting it here rather than in the article.
This information comes from: discussions with physicians, communications through them from a subject matter expert at Mayo Clinic, things they gave us to read, and direct knowledge of one case. (This information is newer than the current article, but still several years old.)
- As of September 2009, 300 cases had been diagnosed.
- 2/3 of cases resulted in problems with the small intestine.
- 1/3 of cases resulted in problems with the large intestine.
- It is cancer-like, in that it involves runaway cell reproduction, but there is no metastasis.
- It is not reliably detected by imaging or lab tests: direct observation is the only certain way to diagnose it positively.
- As a result, a patient may initially be diagnosed with something else (e.g. colitus, due to easily recognized inflamation of the colon), and the actual problem not discovered until surgical intervention is undertaken.
- The disease is rare enough that a surgeon who sees it may never have heard of it.
- Risk factors include age and prior abdominal surgery.
- A survey article published about that time attributed one case to the use of a jackhammer and another to the use of powdered gloves in an earlier abdominal surgery. It did not explain why such specific causes were blamed for a disease that is otherwise considered ideopathic.
- Treatment is by steroids, or tamoxifen if steroids need to be avoided.
- Successful treatment clears up the mesentery, allowing inflammation of the intestine to subside, and in at least some cases allowing full restoration of function without further intervention (such as resection).
- Due to the difficulty of indirect detection and the fact that surgery is a risk factor, a successful treatment may leave physicians in the dark as to whether it is cured or merely under control, and reluctant to operate for a direct look.
In the case that I am directly familiar with:
- Varices of the colon (as visible with colonoscopy) were considered (retroactively) as a *possible* early warning sign.
- Otherwise the first sign was severe abdominal pain.
- Surgery revealed both sclerotic and necrotic material in the mesentery.
- A biopsy taken during surgery came back as "not cancer".
- The seriously inflamed colon required an ileostomy, done at the same time as the surgery.
- Due to the rarity of the disease, several weeks were required for a confirmed diagnoses, and a couple more for a plan of treatment.
- Both were done in consultation with Mayo Clinic, which has substantial experience with the disorder.
- One of the several physicians involved habitually described the case as retroperitoneal fibrosis rather than sclerosing mesenteritus. When asked why, he explained that they are parts of a spectrum disorder, and the medical community had not sorted out what was what, nor established uniform terminology.
- A treatment with tamoxifen required 9-10 months before the ileostomy could be taken down and full digestive function restored.
- Other than the initial surgery and the ileostomy take-down, all treatment was done on an outpatient basis.
- The patient suffered a number of other health problems over the following two years; it has not been possible to determine which (if any) were directly or indirectly caused by the mesenteritus.
--B.Bryant (talk) 03:22, 4 April 2014 (UTC)
Contributed what I know, however...
[edit]I contributed what I personally know from suffering from this disease myself, and having been diagnosed for 8 years now. I've spoken to Dr. Daryl Pardi at the Mayo Clinic in Rochester, MN, who has treated about 100 patients formally, and consulted probably another 50 more (including myself) for help with local treatment. He is very knowledgable, and as the one reference I did put in shows, he has done patient studies and I know can be trusted for accurate knowledge on the disease. The problem is that even though I have gone through all of the possible known treatments, and have spoken with dozens of other patients either through a forum we have established through the Mayo Clinic and overseen by Dr. Pardi for patients diagnosed with SM, or personally though email and phone calls and in person meetings in order to try and help others out and get help from them, by comparing our knowledge and experiences, this information isn't really available in a written document anywhere that's accessible or known to me.
This is frustrating, because I am commonly contacted for help with this illness because there's so little information out there on a disease that can cripple people with pain and force them into disability, like myself, and is seriously life changing and life wrecking and scary, and I want this information to be out there to help people, but I know without proper references it's not acceptable and will eventually get taken done. I'm not some rogue that wants to force my personal knowledge into Wikipedia, it's just this one subject is so personal to me and so devastating.
Not even places like Yale New Haven hospital knew anything about this nor could they help me, and thats scary after being diagnosed. I was fortunate to find Dr. Pardi years ago before he was really mentioned on the internet through a chance finding of an obituary of a man who had died from SM in the town next to me, and I met with his son and was tipped of to Dr. Pardi that way.
I've had a long and exhausting investigative journey with this illness, and can guarantee anyone reading this that my information is factual when there are facts, and reasonable estimates and probabilities accepted by the medical community that actually KNOWS anything about this when there is no hard fact (for example, how many people have REALLY been diagnosed, or actually have this). I'm not wildly speculating, everything here was told to me by other patients (such as their drug treatments and findings of diets) or by Dr. Pardi.
So the problem is how do I get this accepted? I can provide phone numbers for Dr. Pardi...I can probably do anything to back up my info if asked, I just don't know what to do.
Just like the other user who posted here, with the great knowledge they had, I have the same problem of not having sources for it that are traditional sources. Maybe someone with wikipedia experience (I'm a total noob here, I'm sorry) can help both of us find a way to get good information out there to help people that really need it? If you can help, please let me know!
By the way, B.Bryant, I can back up that your information is all great. I could go into much greater detail with regards to surgery and risk factors and reluctance, on and on, but just like you I tried to just post info that was of a wider scope and more broad and general rather than smaller details, though I'd love to get to that point, of course. I was diagnosed the same way, I had bouts of recurring abdominal pain every couple years from the age of 16 to 27, when it came back again more severe than ever and still without any explanation, when finally exploratory abdominal surgery was done, and on a longshot by a local surgeon, the biopsies were sent to Mayo and Dr. Pardi was able to diagnose it. Also, same, necrosis, sclerosis of tissue found, and I too was tried on the different regimens of drug treatment without any apparent improvement physically, and no improvement of symptoms for sure. I could go on, but your info is dead on, matches my acquired knowledge and experiences. I appreciate you taking the time to contribute here what you know as well, thank you personally from me as someone not doing well with my illness.