By Patty on Wednesday, August 09, 2000 - 05:41 pm:

The EDS side of my family has a history of severe constipation. My cuz just had her entire colon removed because it simply was not moving any more. Does anyone else have this family history or is it just another "freaky" thing? (We live until 80 or 90, but G'dad died of colon cancer at 78, probably due to the buildup of everything after years of constipation!)

By Gwen on Friday, August 11, 2000 - 01:42 pm:

Gastro-intestinal disorders do seem to co-exist with EDS/HMS. Many of the people I have met either through this forum or in our local support group have a history of irritable bowel syndrome, hiatus hernia or pelvic organ prolapse.
There is also a condition called Hirschsprungs Disease where a segment of the colon lacks the nerve cells to enable it to contract and expand. As a result faeces collect above it and that portion of the bowel becomes grossly distended. This causes constipation but the condition can be relieved with surgery. It tends to run in families, as does cancer of the colon but I don't know if there is any connection between the two conditions. A gene has been identified for cancer of the colon so if you are concerned you may be at risk it may be worthwhile requesting genetic testing.

By Patty on Wednesday, August 16, 2000 - 03:04 am:

Thanks, Gwen. I am not too concerned about the cancer because I believe that it had to do with a lack of fiber in the diet. I just know that I work awfully hard to make sure I get enough to keep things running smoothly!
I was interested to read in another message of yours that you have known you were eds only 2 years or so. What brought about the diagnosis?

By _Patty on Wednesday, August 16, 2000 - 03:12 am:

oops. 10 years ago, Gwen. Sorry about that.

By Gwen on Wednesday, August 16, 2000 - 02:20 pm:

I received my diagnosis after years of seeing doctors for sore joints, clicking and crackling when I moved, sprained ankles and wrists and being fobbed off with anti-inflammatories.
A lot of other things had occurred the previous five or six years: separation from first husband, his subsequent death, a ruptured disc that went undiagnosed for two years because hypermobility masked it, hassles over husband's estate etc, etc. so I was an emotional mess as well.
Finally a locum at the medical centre referred me to a rheumatologist, who happened to be Julian Kirk who first described Hypermobility Syndrome as a medical condition. He gave me a full assessment and said I met all the criteria for HMS. He also explained how pregnancy exacerbated the condition because the relaxin has a systemic effect on ligaments. In some women the ligaments never regain their former elasticity and I was one of them.
Looking back to my childhood there have been indicators that I was hypermobile such as constantly spraining my ankles, being unable to use the vaulting horse at gym because my wrists would give way on me, being able to touch my nose with my tongue and my favourite party trick of holding a cigarette between my toes and sitting on floor smoking it. But in those days I never had the joint pains so never saw myself as having a disorder.
Despite having had my diagnosis from someone who must surely have known what he was looking for I still find some doctors disagree with it and say that I can't be hypermobile because I can't bring my thumb back to touch my wrist and don't have stretchy skin. Useless to explain that these are only some of the indicators and not all of us show hypermobility in all joints.
I have reached the stage now that I am satisfied to have the letter from Julian Kirk giving his opinion. It has given me peace of mind to know that what I experience isn't "psychological", isn't progressive and that I'm not the only one with the condition. OK it's not all smooth sailing and I still get depressed but I feel validated and have been able to amass enough information to argue with my doctor on his own terms (and he doesn't like it one little bit. What fun!!)
I think we owe it to ourselves and other sufferers to become as visible as we can, keep bombarding our doctors with information about our condition and supporting each other.

By Margje on Wednesday, August 16, 2000 - 11:49 pm:

Gwen, about the strechy skin. Only yesterday I got my final diagnosis from a geneticist. She litterally told me that since my joints were obviously to mobile but my skin was allright I have HMS. (Familiar HMS because we can draw the line back to my greatgrandfather) Would my skin be stretchy too I would have EDS. That's how she explained it. She also added that the medical world wasn't even sure that HMS isn't a skin-problem-free-EDS-type afterall. As I see it anyone with hypermobile joints, pain, tiredness and (sub)luxations qualifies for HMS. Correct me if I'm wrong.

By Gwen on Sunday, August 20, 2000 - 12:37 am:

I agree wholeheartedly with you about anyone with the symptoms qualifying. I do wonder however where the connection is with things like fibromyalgia, chronic fatigue syndrome, ME, and certain auto-immune disorders. So many ailments that may somehow be connected with lifestyle, diet etc. There frequently seems to be a connection between HMS and irritable bowel syndrome. Some research suggests that there is a link between HMS and pelvic organ prolapse but other statistics show the opposite. Is EDS/HMS on the increase or are physicians simply becoming more aware of it? Lots of questions that need to be answered.

By Barbara on Sunday, January 14, 2001 - 05:44 pm:

The premier issue of EDS Today included the article GI Manifestations of Ehlers Danlos Syndrome. This article outlined the complete list of GI problems a person with EDS might have. For more information on getting a copy of the article, write to edstoday@uggen.net or visit their website at http://www.uggen.net/edstoday/

By Kitty on Thursday, February 15, 2001 - 08:50 pm:

I have EDS 3, hypermobility kind, and I have severe constipation too. I just had a flex sig, a small bowel floow through, a sitz marker study and a lower GI and they found no cause for my constipation. Basically, the colon has stopped moving. I live on something called Constulose, a syrupy stuff to force my body to purge pudding-consistancy poop every day. I have to take this for the rest of my life.