Discussions By Condition: Gastrointestinal conditions

Any adults with a malrotated colon?

Posted In: Gastrointestinal conditions 33 Replies
  • Posted By: IamRene'e
  • October 9, 2006
  • 00:23 AM

I am 40 yrs old and was diagnosed with a malrotated colon. That means that my large bowel is all on my left side and that my small is on the right. I can remember growing up as a child feeling sick to my stomach and vomiting a lot. And that behavior carried over into my teens. The doctors then would give me spastic stomach medicine along with a bland diet. I don't remember any of it helping. I had a pain develop in the lower left quadrant of my abdomen along with what felt like a big, hard vein. Which thinking back on it now I am sure it was my colon. This pain has started to grow over the last 6-8 years. It now covers the majority of my left abdomen and across my lower back. The pain changes when I have a BM but I infrequently have those. When I do it is the consistency of toothpaste. I have had numerous tests. One was a colonscopy that was unsuccessful. The doctor was unable to get the scope through the colon. He then sent me to get a Barium enema. FUN! They started the exam but found shortly after beginning that they could not get the double contrast solution in. I was then told that they would have to try the single contrast solution. That worked but it was very painful. My question here is "If they cannot get these things in - what makes them think that anything is going to be able to come out"?! I have had a Gastro. tell me that he does not believe that it is a motility problem. I do. I had another tell me that I was born with it - and I 'll die with it. Thanks doc - nice bedside manner! I have been on sooo many fiber treatments that I lost track. I am tired of living everyday of my life in pain and feeling like life is passing me by. It's like the saying goes "I am much too young to be feeling this d--n old"! I believe all of these symptoms are due to the malrotation - the doctors don't. They openly admit they do not know a lot about this since this is usually dealt with in the first few months of life. If anyone out there knows of anything or anybody - PLEASE REPLY. I am at my wits end.

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33 Replies:

  • You're not alone, I'm 49 and I was diagnosed with a malrotated colon 2-3 years ago. Our stories sound similar. I too had some childhood abdominal symptoms, but nothing severe until I got older. I had problems with my colonoscopy too, I woke up in Extreme pain, and they were afraid they had damaged my colon. As it turns out the gas they injected could not escape, and that was causing my post procedure pain. The barium enema test was what revealed my malrotated colon. The Dr doing the test said I'd probably need surgery to put things back into place. Three other docs said to not even consider surgery. They said I was probably born with this, and that I needed to learn how to live with it. As time goes by, that has become increasingly difficult. I've tried most all of the fiber supplements, and some of them made me much worse (I cannot tolerate psyllium fiber, i.e. metamucil). I try to eat a high fiber diet, drink plenty of water, and get some exercise. I'm in good shape, I'm not overweight, I don't smoke, and I drink alcohol only rarely. Even if I'm perfect with my diet regimen I still have problems. I take Glycolax (polyethylene glycol) daily to keep my stools soft, without that I have a problem with constipation and severe abdominal pain. I have trouble sleeping too, because I wake up 1-3 times per night with abdominal pain. The sleep problem has been going on for a while, and it's taking its toll on me. I try to live my life and not let all of this rule me, but the fact is it has changed my life. I'm still actively trying different things and looking for a better way to deal with it.
    sandstone 5 Replies
    • November 6, 2006
    • 04:53 PM
    • 0
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  • Thanks Sandstone ~ it helps to know that there is someone out there that is going through the same problems. I was starting to think that maybe it is all in my head. I hope that your situation gets results soon. I know life can get rather difficult when you cannot sleep. Your body doesn't have time it needs to rejuviante and heal itself. Well if I come across anything I will let you know. Good luck!
    IamRene'e 9 Replies
    • November 6, 2006
    • 08:40 PM
    • 0
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  • Do you have any food sensitivities or other things that make it worse?
    sandstone 5 Replies
    • November 6, 2006
    • 10:13 PM
    • 0
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  • I haven't noticed any certain foods that set me off. I just go through waves. One day I have a pretty good day then the next I could be in bed all day because of pain in my left abdomen and across my back. I get very fatigued and frequently. The doctors also found that my body digest food within 30 minutes where most take approximately 3 hours but then I don't get rid of it for days. What type of doctor did you see that told you that you needed to have your bowel put back into the proper place? I have been begging doctors to do that with mine. I am certain that my pain would go away if it were. I have read numerous articles written by doctors that state "no matter what the age of the patient the bowel should be put back where it belongs." I have seen a specialist at the Cleveland Clinic (one who wrote such an article) and he refused to do it. I don't understand and they don't give me any real reason. Sometimes I wonder if it is an insurance influence. :confused:
    IamRene'e 9 Replies
    • November 7, 2006
    • 02:22 PM
    • 0
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  • I go through the waves too. I'm not certain about what causes them. I kept a log sheet for 3 months, recording all sorts of things: food and fluid intake, caffeine, exercise, hours worked, stress level, bowel movements, sleep quantity and quality, other health issues (cold. flu, allergies, etc.) and pain levels. I was hoping to identify triggers that caused the waves, but there were no clear correlations. It was a good exercise, and I recommend it. I'm going to do it again. The Dr who told me I'd probably need surgery was the Dr at the clinic who did my barium enema test, so I don't know his specialty (I didn't know the Dr, the clinic reports the findings back to my Dr that ordered the test). I'm lucky in that I have an awesome GP (he genuinely cares about his patients and goes the extra mile to help them), and he consulted with two gastros regarding my test results. They all three said they did not recommend the surgery, because it would probably cause more problems than it would solve. My gastro says that the malrotation should not be causing any problems, but I agree with you that I believe it is causing problems. I also have some thickening in the wall of my colon in one area (showed up on MRI), but the gastro said it was not significant. Right now I'm running with their recommendations, and I'm constantly trying to tune my diet/lifestyle/meds to find a happy balance. I don't think I'll ever be problem free, I just want to get to a point where I can sleep good and not feel restricted. I'm still a pretty active person, but I would like to feel better and have less pain. If I continue to get worse, I'll probably eventually re-visit the issue with the Dr's, and dig into the pros/cons of other options, like surgery. Does your family have any history of similar problems? My dad may have had the same problem. My mom says she remembers (from decades ago) a doctor explaining to him that he had an abnormality, but she could not recall exactly what it was. He always had abdominal cramps. My son has a pretty bad case of Crohn's disease, but thankfully we finally found a Dr who could help him. Remicade treatments have given him his life back (he's 19, almost 20).
    sandstone 5 Replies
    • November 7, 2006
    • 05:27 PM
    • 0
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  • I too kept a journal to try and figure out any trigger points ~ but I like you could not come up with anything. My GP is very caring as well and was concerned about my weight. I have been gaining weight for no apparent reason over the past 2-3 years. So she ran some tests (I believe they were for thyroid) to see if there was anything. That came up negative which was no surprise to me. The specialists are saying since I am not failing to thrive there are no issues. I believe the malrotation is causing the weight gain. For one I don't have bm's regularly (sometimes it is 1 x in 6 days). The other is that ever since I was a child when I would get sick to my stomach I would eat to try and make the feeling go away. To this day when I get the flu I eat through it. So there wouldn't be that "failure to thrive". But this doesn't fit the information in their text books so they don't believe there is anything wrong. They want me to visit a Gastro. and tackle it with fiber, laxatives and meds. Which I have been through that regimine several times with no relief. I am to the point that I have lived in significant pain to some degree every day for the past 6-7 years. And would like to just be humored by putting the colon where it belongs to see if my condition will change. There are no problems on my moms side and I don't know my dads medical history. He left the picture when I was under a year. So that makes it hard to answer medical questions.
    IamRene'e 9 Replies
    • November 7, 2006
    • 06:51 PM
    • 0
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  • On the one hand I can see the Dr's point of view, my intestines have been positioned and operating this way for about 50 years, so an invasive surgery to re-arrange them would likely cause some complications (possibly severe ones that could make me even worse -- what would I do then?). On the other hand the constant discomfort and other symptoms make life much less enjoyable than it could be. I too can go for days without a BM, even when I'm eating good and taking daily doses of Glycolax. I just went three days without going, then on the fourth day I went five times. Of course not going means I get bloated, uncomfortable, and lethargic. When I go I get cramps before and afterward. With me the post BM cramps are the worst, they can last from a few minutes to half an hour, and sometimes are very painful. It feels like my intestines are pulling and re-adjusting to a new position (which is actually the case). I also often get some cramping after I eat, but those are not as severe. If I find anything that makes a difference for me I'll post it here. I'm about to start a different fiber supplement.
    sandstone 5 Replies
    • November 14, 2006
    • 03:31 PM
    • 0
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  • Have you seen these two links? Surgical management of intestinal malrotation in adults: comparative results for open and laparoscopic Ladd procedures Laparoscopic Ladd Procedure for Adult Malrotation of the Midgut with Cocoon Deformity: Report of a Case I've been taking the Colonix fiber supplement for about a month now, and I can tolerate it. Other psylium based supplements gave me very bad gas and cramping.
    sandstone 5 Replies
    • January 8, 2007
    • 06:54 PM
    • 0
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  • Hello Sandstone, Thank you for sending the links to the webpages. I have seen them and they have encouraged me. Matter of fact I had printed them and a few others to take to the gastro that I was seeing but was never given the opportunity to have him look at them. You say you are taking Colonix and that you are tolerating it ~ do you mean the supplement or the pain? I have found a Dr. who is willing to do surgery on me. It's crazy how I found her. But my ob/gyn had me follow up on my mammogram with this surgeon. And I asked her if she had ever heard of a Mal rotated colon. (I thought all surgeons had heard of it, turns out (at least in my area) not many have) Anyhow she had and asked to see my films. I took those in the following week and she reviewed and told me that it is actually a non rotated colon. But in any case she gave me two options 1 - to put it back where it belongs2 - to remove the majority of the large bowel I opted for the latter. And she told me that she was going to try to persuade me that way. She and I believe that there will be less scarring that way. The unfortunate part of it is that she won't do it Laprascopically. She told me that she wants to be able to see everything since nothing is in the right place. So on the 15Th of Jan. I will having it removed. Wish me luck!
    IamRene'e 9 Replies
    • January 8, 2007
    • 07:18 PM
    • 0
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  • I meant I am able to tolerate the fiber. You'll be in my thoughts, best wishes to you with your surgery. When you've recovered let me know how it went.
    Anonymous 42789 Replies
    • January 9, 2007
    • 01:58 AM
    • 0
    Flag this Response
  • Thank you ~ you are kind. I will keep you posted.
    IamRene'e 9 Replies
    • January 9, 2007
    • 02:34 AM
    • 0
    Flag this Response
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  • I am a young adult that has been recently diagnosed with congential nonrotation of the bowel. It was found due to a CT scan earlier this month because of similar symptoms (abdominal pain, diarrhea, spasms, etc.) that have increased the past two years. Doctors have labeled my condition as lactose intolerance and IBS. It may be I have these conditions but, my symptoms have increased even with changing diet habits, etc. I have been told to speak with doctors at the Nebraska Medical Center (http://www.nebraskamed.com). They are supposed to be one of the leading medical centers in the US for intestinal disorders. I will also be contacting doctors at Mayo Clinic. I want to make certain I receive the best care by experts who have experience with this condition. I pray this helps those who also suffer with this condition and are desperate to receive the right treatment.
    Anonymous 42789 Replies
    • January 27, 2007
    • 09:20 AM
    • 0
    Flag this Response
  • Hi Sandstone and Newbie! (unregistered) ;DWell I am back on my feet again. But I believe I saw a snail pass me by yesterday! lol My surgery went well. The doctor ended up having to remove approximately 5 feet of my large bowel. She said she couldn't give me exact numbers because my bowel looked like it had hit a brick wall and folded up. And every where there was a fold in my bowel that it had grown together (developed adhesions) and then it would rip apart. She said that it appeared to have done this numerous times. And she doesn't know how anything had ever passed through there. Recovery is kicking my butt. I wished that I had died for the first week of being home. My hospital stay was 6 days. I now have watery bm's (which might go away once I figure out my diet). My doctor didn't want to do it Laprascopically because nothing was in it's place. She said she wanted to be able to see what she was doing. She also removed my appendix because it was opposite of where it should have been. I have about a ten inch incision that runs through the center of my belly. (There goes all my chances of bikini modeling!) :D My husband tells me that he has noticed a difference in me. I guess I am going to feel better once I recover. It's just the recovery was a lot harder than I had planned on. I will keep you posted on how things are going.I do want to encourage you, if you have the ability, to at least have a Dr. do an Exploritory Laparotomy. That sounds like the only way they can tell if there is something truely wrong. I would have thought that the adhesions would have showed up on my colonoscopy but I guess not. Take care!
    IamRene'e 9 Replies
    • January 27, 2007
    • 11:13 AM
    • 0
    Flag this Response
  • Oh and a side note...My doctor said that it was non~rotated instead of mal~rotated. So for whatever it is worth, there it is. ;)
    IamRene'e 9 Replies
    • January 27, 2007
    • 11:16 AM
    • 0
    Flag this Response
  • Rene, it's good to hear your surgery went well. It sounds like you made the right choice (to have the surgery). Best wishes to you with your continued recovery. I had an inguinal hernia surgery once, and it hurt like ***l to move anything during the first few days of recovery -- and my incision was small compared to yours. Keep us posted.
    Anonymous 42789 Replies
    • January 28, 2007
    • 06:40 PM
    • 0
    Flag this Response
  • I was diagnosed with a midgut malrotation when I was 22 after having kids,I am now 35 years old. My story sounds like yours. Please contact on my email address and we can chat there is alot I have been going through and it sounds like our story is so much a like. I have been in the ER twice this week and nobody wants to help,they act like it is in my head!!! Please contact me I would love to hear from you and anyone else.sacoracasselman@yahoo.comTHanks I am 40 yrs old and was diagnosed with a malrotated colon. That means that my large bowel is all on my left side and that my small is on the right. I can remember growing up as a child feeling sick to my stomach and vomiting a lot. And that behavior carried over into my teens. The doctors then would give me spastic stomach medicine along with a bland diet. I don't remember any of it helping. I had a pain develop in the lower left quadrant of my abdomen along with what felt like a big, hard vein. Which thinking back on it now I am sure it was my colon. This pain has started to grow over the last 6-8 years. It now covers the majority of my left abdomen and across my lower back. The pain changes when I have a BM but I infrequently have those. When I do it is the consistency of toothpaste. I have had numerous tests. One was a colonscopy that was unsuccessful. The doctor was unable to get the scope through the colon. He then sent me to get a Barium enema. FUN! They started the exam but found shortly after beginning that they could not get the double contrast solution in. I was then told that they would have to try the single contrast solution. That worked but it was very painful. My question here is "If they cannot get these things in - what makes them think that anything is going to be able to come out"?! I have had a Gastro. tell me that he does not believe that it is a motility problem. I do. I had another tell me that I was born with it - and I 'll die with it. Thanks doc - nice bedside manner! I have been on sooo many fiber treatments that I lost track. I am tired of living everyday of my life in pain and feeling like life is passing me by. It's like the saying goes "I am much too young to be feeling this d--n old"! I believe all of these symptoms are due to the malrotation - the doctors don't. They openly admit they do not know a lot about this since this is usually dealt with in the first few months of life. If anyone out there knows of anything or anybody - PLEASE REPLY. I am at my wits end.
    Anonymous 42789 Replies Flag this Response
  • Could you please contact me at sacoracasselman@yahoo.com. I have a malrotation and I have been dealing with alot lately please contact me.ThanksHello Sandstone, Thank you for sending the links to the webpages. I have seen them and they have encouraged me. Matter of fact I had printed them and a few others to take to the gastro that I was seeing but was never given the opportunity to have him look at them. You say you are taking Colonix and that you are tolerating it ~ do you mean the supplement or the pain? I have found a Dr. who is willing to do surgery on me. It's crazy how I found her. But my ob/gyn had me follow up on my mammogram with this surgeon. And I asked her if she had ever heard of a Mal rotated colon. (I thought all surgeons had heard of it, turns out (at least in my area) not many have) Anyhow she had and asked to see my films. I took those in the following week and she reviewed and told me that it is actually a non rotated colon. But in any case she gave me two options 1 - to put it back where it belongs2 - to remove the majority of the large bowel I opted for the latter. And she told me that she was going to try to persuade me that way. She and I believe that there will be less scarring that way. The unfortunate part of it is that she won't do it Laprascopically. She told me that she wants to be able to see everything since nothing is in the right place. So on the 15Th of Jan. I will having it removed. Wish me luck!
    Anonymous 42789 Replies Flag this Response
  • I have a mid gut malrotation and had the surgery in 95 and I have been in chronic pain my whole life and it is getting worse all the time. I have been in and out of the hospital cause of the pain. Please contact me anyone who is dealing with this please at sacoracasselman@yahoo.com.thanks
    Anonymous 42789 Replies Flag this Response
  • Hello,Were you given info on the Mayo clinic? And who to contact there on this issue? If you can share any info that would be great,my email is sacoracasselman@yahoo.com. Take careI am a young adult that has been recently diagnosed with congential nonrotation of the bowel. It was found due to a CT scan earlier this month because of similar symptoms (abdominal pain, diarrhea, spasms, etc.) that have increased the past two years. Doctors have labeled my condition as lactose intolerance and IBS. It may be I have these conditions but, my symptoms have increased even with changing diet habits, etc. I have been told to speak with doctors at the Nebraska Medical Center (http://www.nebraskamed.com). They are supposed to be one of the leading medical centers in the US for intestinal disorders. I will also be contacting doctors at Mayo Clinic. I want to make certain I receive the best care by experts who have experience with this condition. I pray this helps those who also suffer with this condition and are desperate to receive the right treatment.
    Anonymous 42789 Replies Flag this Response
  • I am 40 yrs old and was diagnosed with a malrotated colon. That means that my large bowel is all on my left side and that my small is on the right. I can remember growing up as a child feeling sick to my stomach and vomiting a lot. And that behavior carried over into my teens. The doctors then would give me spastic stomach medicine along with a bland diet. I don't remember any of it helping. I had a pain develop in the lower left quadrant of my abdomen along with what felt like a big, hard vein. Which thinking back on it now I am sure it was my colon. This pain has started to grow over the last 6-8 years. It now covers the majority of my left abdomen and across my lower back. The pain changes when I have a BM but I infrequently have those. When I do it is the consistency of toothpaste. I have had numerous tests. One was a colonscopy that was unsuccessful. The doctor was unable to get the scope through the colon. He then sent me to get a Barium enema. FUN! They started the exam but found shortly after beginning that they could not get the double contrast solution in. I was then told that they would have to try the single contrast solution. That worked but it was very painful. My question here is "If they cannot get these things in - what makes them think that anything is going to be able to come out"?! I have had a Gastro. tell me that he does not believe that it is a motility problem. I do. I had another tell me that I was born with it - and I 'll die with it. Thanks doc - nice bedside manner! I have been on sooo many fiber treatments that I lost track. I am tired of living everyday of my life in pain and feeling like life is passing me by. It's like the saying goes "I am much too young to be feeling this d--n old"! I believe all of these symptoms are due to the malrotation - the doctors don't. They openly admit they do not know a lot about this since this is usually dealt with in the first few months of life. If anyone out there knows of anything or anybody - PLEASE REPLY. I am at my wits end.Look up Hirschsprungs disease. I am 55 yrs old. My problems started at 18, not when I was a baby as most do. You may be missing ganglion cells in colon which causes it to permanently seize up hence difficulty haveing BMs. Sometimes the colon twists, and feels like a hard object inside. When i try to do enemas sometimes the water and feces won't be expelled. Ask for a full-thickness biopsy of the affected area, all the other tests are not definitive for Hirschsprungs. It's worth a try if you have tried everything else.
    Pauletteaz2 9 Replies Flag this Response
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