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EDS ForumsGeneral & SupportDigestive issues
10/02/2011 06:44 PM
grobocop
Posts: 8
New Member

Hello everyone,

I was wondering if anyone has any trouble with their digestive tract. I was hospitalized a year and a half ago for a severe case of diverticulitis. I was very close to perforating my colon. Ever since then I have been having pain and trouble eating. Recently I have been having trouble using the restroom (I don't want to get too graphic). Has anyone else experienced anything similar? If so, I would love to hear about your experience and any advice.

All the best,

GG

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10/02/2011 08:14 PM  Top
Sookie65
 
Posts: 1
New Member

Hi GG,

My son is currently undergoing investigations and our Neuro-Gastroenterologist consultant is convinced he has Type III. He was originally referred to the Gasto guys by an immunologist because he keeps vomiting. Apparently EDS can cause the stomach to stretch and form pockets where food accumulates, hence the vomiting.

Also, 5 years ago my husband had emergency surgery and had to have a foot of his bowel removed, because it had basically "died", and huge holes had caused leaking into his stomach cavity. They never found out what caused it but now suspect EDS.

So yes, it is quite likely that your EDS is causing all these problems for you.

My son is now waiting to have a 24 hour impedance study and gastric emptying breath test. I don't actually know what these entail, but believe they are checking how well he can swallow.

Hope this helps a bit. Good luck Smile


10/03/2011 07:26 AM  Top
SSLMD
Posts: 929
Group Leader

Do you know what type of EDS is involved? Any of them could be, but severe problems are, as far as I can discern, more common with Type IV, vascular. It is important to know if, by chance, you or your family members have that, since special surveillance is needed to protect against aneurysms.

SSLMD


10/04/2011 07:14 PM  Top
grobocop
Posts: 8
New Member

I have been told that I have the Hypermobility type but my symptoms are increasing in range and severity which has me concerned. I am new to my current state of residence and found a rhuematologist but not an internist. Is it common for symptoms to increas like mine are?

Thank you for responding! Everyone's input has been helpful.

GG


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10/08/2011 05:45 AM  Top
SSLMD
Posts: 929
Group Leader

I don't have a good answer to your question. It happens, but my impression is that it is not a common complaint. Increased joint problems are common over time.

10/15/2011 08:32 PM  Top
grobocop
Posts: 8
New Member

I just got back from the ER where, yet again, I was treated like I was either drug seeking or uneducated. The doctor that saw me told me I could not have possibly had diverticulitis as my pain was on the right side (commonly pain is on the left). she refused to give me a CT scan. The hospital also lost my first urine sample. Long story short, I left with 2 antibiotics to treat me for a UTI and diverticulitis. I was so angry by how I was treated! My blood pressure was also 145/90 and my heart rate was 102. These are both really high numbers for me. My bp is usually 110/70.

The triage nurse had never heard of EDS and neither had the doctor that saw me. I don't think she even looked at my medical history either. So frustrating!!

I guess we'll see what happens int he next day or two. I have a strong feeling I am going to end up needing more medical care.

This is so discouraging...

GG


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10/16/2011 11:31 AM  Top
hatbox121
hatbox121
 
Posts: 10502
VIP Member

Do you have a regular dr? Sounds like you might need to call Monday and discuss it with them.
Amy~ “When you come to the end of your rope, tie a knot and hang on.” ~Franklin D. Roosevelt

Current dxes-Ehlers Danlos Syndrome, Mitral Valve Prolapse w/regurg, 2 other heart valves with regurg, POTS, DDD, scoliosis, various OA, polyneuropathy of unknown origin, SI joint dysfunction/fusion/collapse, chronic rotar cuff tendonitis, impingement syndrome of the shoulder, chronic bursitis in various locations, degeneration of the sternum, vertigo, GERD, FM, CFS, CPS, various bone marrow lesions, brain lesions of unknown cause, migraines, TMJ, vertically bulging discs, Raynaud's, anemia, tinnitus, high copper levels, borderline glaucoma, colon polyps, intermittent RLS, Vit D deficiency, depression, Eye accomodation disorder, Essential tremor, recurrent kidney stones, sacral spine disorder, inflammed tendons, and inflammation of spinal nerves(no specific dx).

I'm am not a dr. I am not a substitute for a dr. All advice I give is based on research and my personal experiences.

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