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My mom's overlap worsened.

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Hello

 

My mother has been diagnosed with Overlap (scleroderma and rheumatoid arthritis) about 12 years ago. She made her annual lab tests, and the CE 19-9 marker is very high, so the CEA marker. We made an abdominal ultrasound and the doctor told us she may see something on the intestinal walls. We performed a CT, a few days ago, no tumor found, but a very slow motility of the lower bowels.

 

Has anybody been confronted with such symptoms? Doctors tell me, that my mom should have a colonoscopy. I’m very scared, because my mother has a very bad condition due to her medication(methotrexate,methylprednisolone and plaquenil), she has a poor mobility (necrosis of the femoral head on both legs) and she is in lot of pain.

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Hi Anda,

 

Welcome to Sclero Forums. I'm sorry that your mom has Overlap and that she has new symptoms. Please keep in mind that I'm not a doctor and verify everything I say with a reliable medical source. 

 

As you may know, scleroderma can affect any part of the body, including the intestines, and slow motility is a very common result of that. She'd be wise to consult a listed scleroderma expert, if possible. 

 

Also, motility issues are sometimes caused by medication side effects (pain killers being a very common culprit).  See Bowel Dysfunction in Systemic Sclerosis.  Some of us have been able to switch to medical-source CBD for pain relief, thus avoiding side effects like low motility.  CBD is the non-psychoactive part of marijuana (meaning, it doesn't get you high).  See Endocannibinoid System and Scleroderma. Also note the FDA warning, which is why a legitimate medical source for CBD is crucial.

 

Due to special circumstances, I have to have a colonoscopy every year.  So I'm well aware that they are unpleasant and even risky.  If by any chance your mother is over age 70, it's likely that the risks may outweigh any potential benefits.  See Do You Really Need That Colonoscopy? by AARP.

 

Be sure that she doesn't make any major diet (or other) changes without sound medical advice from a scleroderma expert. With scleroderma, for example, it can be dangerous (as in deadly) to add a lot of fiber, and some people find it necessary to go on a low fiber diet, or what is called a Low Motility Diet, which should be designed by a nutritionist.  It isn't a do-it-yourself job to undertake such a diet, so don't try to force any diet changes on her but rather encourage and enable the consultations it may require. 

 

Her necrosis might be a complication of steroid treatment. Steroids can pose special problems for scleroderma patients, but sometimes there's not many viable treatment options. However, it's always good to be aware of the issue and to see if alternatives are available.  See Steroid Warnings for Scleroderma

 

Overall, your mother may be encountering a common complication of scleroderma, or side effect of medication which is just less tolerable along with scleroderma, and it may be beneficial to weigh risk and benefits of the procedure with her scleroderma expert, in case a more conservative approach can be tried first (which will depend on many factors.)

 

:hug-group:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi Anda,

 

Welcome to these Forums!

 

I'm sorry to hear that your mother has been diagnosed with Overlap and is suffering with such unpleasant symptoms. As Shelley has advised, she does need to consult her scleroderma expert in order to confirm the next course of action to deal with her slow motility in her lower bowels.

 

I can empathise with the pain she's having due to her mobility; I also have necrosis of my hips due to prednisolone medication, which necessitated my having both hips replaced. However, now that's been done, I'm bouncing around as good as new (or almost!!:wink:)

 

The main advice we always give is to consult your scleroderma expert, in order to obtain the best advice and treatment.

 

Kind regards,

 

 

 

 


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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