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Reconnection to sigmoid?


Bee
 Bee
(@veggie-bee)
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Hi!

I have an ileostomy due to ehlers danlos syndrome and due to this connective tissue disorder, it's made my ostomy experience very painful with frequent blockages, prolapses, several hernias, constant distention/bloat, diet restrictions (can't barely tolerate any fiber), can't sleep except on my back, etc.  The surgeon left about a foot of sigmoid (and if course rectum). If I have surgery to connect my ileum to the rest of my sigmoid, what can I expect in terms of what the stool would be like, any continence issues, diet changes that I may need to adopt, etc? Would this help heals my hernias and distention? And is there a risk of intersussecption of the ileum into the sigmoid, since I'm prone to prolapses? Would this be a better quality of life? What is the surgery and recovery like? 

 

Doctors haven't been helpful answering these questions, so I thought I'd see if anyone in the community has a similar anatomy and when thru the connection process? 

 

Colectomy+Ileostomy due to Ehlers Danlos Syndrome. 8/9/17


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VeganOstomy
(@veganostomy)
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@veggie-bee Those are questions that your surgeon would definitely be able to answer with more accuracy and detail. 

Generally speaking, any loss of bowel can result in stool not being very formed, and more likely than not, more bowel movements throughout the day vs someone with a healthy bowel. 

Because you've had/have so many challenges, I think there would be too much speculation for anyone to give you an accurate answer. 

Best of luck!

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Bee
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None of my doctors said they can answer this and suggested I look for others whom have similar anatomy. My surgeon told me to do this before my first surgery too. So here I am, asking others bc my doctor told me to. All I want to know is what my life could be like with such a short part of my colon left. I haven't seen anyone with this anatomy, so it feels very lonely and confusing. 

Colectomy+Ileostomy due to Ehlers Danlos Syndrome. 8/9/17


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winnie
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I'm sorry you are not finding others with a similar situation.  I believe there is a Facebook ostomy group, and you might try asking the nurses at a couple of different ostomy clinics; as far as long term dealing with stuff the nurses often have more clue than the doctors.

My overlap with you is that I had an ileostomy, got re-connected, and then went to a permanent colostomy.  But for totally different reasons and with essentially healthy intestine above my cancerous rectum.  In retrospect I wished that there had been some way to 'trial' the ileostomy reversal, because problems showed up that could have been fixed if I still had the ileostomy.

Do you have a 'loop ileostomy' where you have two holes, one where output comes out of and one unused which connects 'downstream'? 

-Jon


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ChrisandBagpus
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Hmm

Strange the doctors offer a treatment but cannot answer your question?

I suggest your persist with the doctors for some evidence of treatment benefit to help you come to a informed decision

Have you asked in any ehlers danlos syndrome support group. the syndrome complicates the suggested surgery.

Also have there been any pubmed articles for this procedure with your condition ask your medical teams to help you find any related published articles.

Sorry I have no better suggestion

Best wishes 

 

 

 

Colostomy Jan 2020


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