Twisted Colon

[shaggygirl]

Is anyone else suffering from twisted colon who can help me with some information. I found out that I had a twisted colon 8 years ago at 19 but I did not know it was serious and now my symptoms have worsened and I have been trying to get information on how I can fix it or treat it. I just got a new job and I get my insurance on November 11th but in the mean time I am just searching for information.
I would appreciate any information from someone who is suffering from the same thing.
Thanks

[cindy263]

Hi, I am a 78 year old woman and I just found out I have a redunded ( twisted) colon. I was told to go on a low fiber diet and drink more water. I don't know if this will work., bbecause I just started this.

[camnchar]

I can sympathize with all of you-the pain feels like digesting jagged shards of lightning that carve their way through your gut and then you have the same torture when trying to pass right? I'm so sorry for all you fellow sufferers! Personally I've been diagnosed from Chron's to Congenital Malrotation of the large intestine to Cecal Volvulus, with displaced ileum valve and small bowel. I have had every GI work up docs can think of- 4 surgeries-and I have seen over 7 specialists in my state all with differering opinions it was until (through my own research and asking my DR for A Barium X-ray) did I find a clue to my condition. Have any of you undergone a barium X-ray? I found that my colon was in the shape of an S with considerable amount of redundancy and looping and on the report it stated that I could also have a misplaced small bowell ileum, and cecum. I was referred to Mayo Clinic where I was told by GI specialist who was very caring that he hadn't seen anything like it and suggested a Total Abdominal Colectomy but I failed preliminary testing for this-so as of now I am living with it.  I as well am on miralax and colace-and now can only consume liquids as I cannot digest solids. Even with my hubby as a doctor I am still living with the mystery but I would love to help any of you I can? So please contact me. Have you had a barium X-ray? Only share this to help not to ask for sympathy as I'm sure you all understand. Hoping this may help you guys with your hunt for a cure? They say "not knowing," is half the battle for me it feels like the entire battle so if anyone else feels like this I would love to help is possible? I have had specialists tell me I need a resection, radio oblation-thoracic injections-to kill nerves. replumbing, a Full total colectomy, etc and others who say I just have to live with it.. But I believe there's a way--so if theres a way to help each other please please contact me. Sorry so long!

[needshelpalot]

I had the same problem and had to have the surgery.  If it goes to long it can actually be life threatening.  My Dr has me on low fiber.  When everything is not working right fiber can actually make it worse. I would stick with a Dr's advice rather than what is on the web

[rosesanlilacs]

I just was diagnosed with a tortuous colon after months of agony from constipation and a lifetime of general gastrointestinal issues.  I'm only 31 and would prefer not to have surgery...I heard it is very risky and last resort only.  I've been told to take Colace and Miralax.  I'm still having issues, although not nearly as bad as before I started the Colace.  Some days or half days I'm fine and then back to the pain again.

What are some other remedies people have tried?  I'm getting contradictory advice with fiber.  My doc says it's just backing me up more, but the web is pushing it and pushing it for constipation.  

At the emergency room my stool sample was nothing but clear mucous and I'm very gassy.  I have a bit of color in my stool now, but usually it just comes out as colored mucous or liquidy/ mucousy stool.

Please give me any advice.  I'm sick of this!

[coughting]

Check out Bariatric surgeons in your area and find the best one that has done lots of resections by laproscopic surgery.  

Go visit and get copies of all of your info from the GI dr before you go and take with you.
The surgeon, and I cannot stress enough to make sure they are the best in your area, can tell you if he can help you.

[ashers86]

I read your story and it just amazes me!

I've been stuck with the IBS diagnosis for over 2 years now, and whilst that is true, I just found out this year (3 doctors later) that I have "tortuous sigmoid". The doctor that did the colonoscopy told me there's nothing that could be done and sent me on my way with instructions to take stool softeners and laxatives everyday.

But now, it's just worse. It's agony just to go to the bathroom because I can literally feel things trying to push through in that corner but it's tough. I can't even work or exercise because of it and I seriously don't see why they can't resection it (??)!

However, should I complain in order to get it considered, or should I just try another doctor?

[tking718]

I am a 36 year old female. I had been having problems with my bowels for sometime.  I had to take laxatives in order to get my bowels to move.  Then eventually the laxatives stop working.  I went to have a colonic done, and nothing came out but the clear water.  (Not a good thing).  I later had a barium enama done, and found out my colon was twisted. That was done on a Monday and the radiologist suggested seeing a surgeon ASAP. That Wednesday I ended up in the hospital for emergency surgery.  I had to have a sigmoid colectomy.  (I had to have part my of colon removed.)  I had no idea how life threating a twisted colon could be.  That surgery saved my life.  If I were you, I would definitely get checked asap.  

[demtlard]

Have never had this, but you need to go get a colon lift.  And you need to find someoen who can do it right without hurting you. Twisted colons will cause food not to digest right and cause build up of waste matter in your colon causing all sorts of other problems.