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colostomy reversal problems

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Posted 9/5/2012 1:32 AM (GMT 0)
I had a tranverse colostomy when I was 14 years old (24 years ago). It was reversed 6 months after I got it. Ever since, I have had chronic constipation. I've had to go to the ER multiple times for blockages. I've been told there is a lot of scar tissue blocking my colon, but I was also told there is nothing that can be done about it. I was told this about a decade ago, so I was wondering if anyone knew if there is any new treatments for getting rid of the scar tissue. The scar tissue will get so inflamed and cause swelling. It gets so bad, I sometimes vomit. I am hoping there is something that can be done.
Posted 9/5/2012 11:24 AM (GMT 0)
Hi Butler and welcome. Sorry to hear you've having a rough time.

Can you give us a few more examples and detail of your symptoms and what's going on? Do you know if you have all or part of your colon remaining? and why did you have the colostomy when you were 14?

I think you need to get some investigations done and look at your options at this stage.. if the scar tissue is just in your colon, there would be treatment/surgical options which you could look at. I doubt that there 'nothing that can be done'.

In my experience, you have to push and really explain how much you're suffering. You need some tests, a proper diagnosis and a good colorectal doctor.
Posted 9/5/2012 4:56 PM (GMT 0)
I had to ge a colostomy because my appendix ruptured.  The doctor kept saying I just had the flu.  Finally my mom demanded tests be run.  That is when they discovered my appendix had ruptured.  The surgeon guessed it had ruptured three days prior to my surgery.  My descending colon was removed.  I had to have the colostomy for 6 months, but then it was reversed.  I ended up having to have 5 surgeries at that time for the doctor to remove more and more dead tissue.  He ended up taking out my spleen as well.  I'm not really sure how the whole reversal thing worked.  No idea what my colon would look like now.  I do know that most of my pain is located where my stoma was--not on the surface, but on the inside.  The top half of my abdomen will swell up and ache so bad.  You would think it would have gotten better over the past 2 decades, but it only seems to be getting worse. It is hard to go to work everyday when I vomit so often.  The pain wears me ragged.  Everytime I do see a doctor about it, I'm just told I will have to live with the pain or get another colostomy--permanent this time.  I don't like those options. 
Posted 9/6/2012 1:20 PM (GMT 0)
Oh I see. That sounds awful for a 14 yr old lad to have to cope with. It sounds like you have scar tissue/adhesions inside. Where do you live? do you have a good Doctor? (it doesn't sound like it). A permanent colostomy might not sound like an ideal solution, but it may bring your much better quality of life than you have now. I think you need to find a Doctor who will listen to you and demand some tests. Probably a colonoscopy and CT scan? Doesn't sound like this is a long term way to live.. and no you should not just have to put up with the pain.
Posted 9/6/2012 4:21 PM (GMT 0)
Thank you for listening to my story and for the helpful response.  I live in a totally different state now (Texas).  The doctor who misdiagnosed me for so long lost her license to practice.  I do not have a good Endocrinologist, but I am thinking of trying to find one.  Thanks again!
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