Does anybody have an intestinal malrotation?

I had the LADD'S procedure about a month and a half ago. I am 32 years old and was not diagnosed until maybe 3 months ago. My question is, do any of you with mid gut malrotation notice that you dont heal like others? I notice that when I get sick, I am sick for what seems forever. I live on probiotics. What would take a "normal" person a few days to get over takes me weeks. I would love to know if any of you experience this as well.

Dee

I was diagnosed with malrotation, my doctor called it malrotaion of the bowel. I was also born without a spleen and my liver is enlarged. I found out when I was 14 years old that I was born without a spleen. When I was 21 years old I was diagnosed with DVT, factor V leiden mutution which is a clotting problem, and they found that I was with a larger liver and a malrotation of the Bowel. My oncologist was going to do the Ladd surgery but I was too weak to go through a operation at that time he said if I had any other problems with it I'll have to get it fixed. My veins are also going everywhere and not in the usual directions. I'm on Warfarin which is a blood thinner for the rest of my life now so that keeps my diet on track but I do go of it some time especially with a 5 year old around. I'm now 28 years old and 6 years ago I fell pregnant with my daughter, I had a horrible pregnancy sick constantly and I had have a needle every day, I had a lot of ultra sounds to make she was developing right. Some doctors were dumb founded that my doctor down south in Brisbane said I was fine to fall pregnant because of my blood. She was born at 31 weeks at only 3 pounds 1 ounce the doctors were more worried about me than her because she was so healthy when born. I got sick after I had her, I got a infection in my wound and they also checked her insides to make sure her insides were arounfd the right way. I still haven't had a Ladd yet and I don't have much trouble with IBS, but I have alot of trouble with ovary problems. Also my obstitrican found that one of my ovaries was in the wrong place so I had a surgery remove cyst on them and move my ovary to the right place. It is great to find that there is other people with the malrotation problem too.

I am also really glad to have found this forum! I am 30, female and live in the UK. I have had intestinal problems for most of my life and, despite seeing many doctors and specialists and having many, many tests, had no diagnosis. It was only a few months ago that I finally had a CT scan and the consultant told me afterwards that I had malrotation. He was very relaxed about the whole thing, told me that was probably what was causing the problem, and then discharged me! I wasnt really aware at the time how serious it could be, although my symptoms seem to be getting worse and worse, and its only through online searches that I have just started to realise the impact this could have on me in the future, and that it probably should have been detected much earlier. I am pretty upset about how dismissive the doctors are, because its something they dont understand and arent familiar with. Im really glad there are other people in the same position on here who I can talk to about it!

Thanks TJDee, I did actually read in an earlier post about the facebook group and have requested to join Please keep us informed of how you get on, its so disturbing that medical professionals arent taking this seriously!

Hello, I don't experience this, but my little sister was born with malrotation in 1989. The doctor told my parents they wouldn't have been able to save her life a year earlier because the 'technology' had just been developed to perform the necessary surgery. She was also in the hospital for about a year after she was born and was pretty skinny, lethargic, quiet and sickly-looking until she was about 3. Then her favorite thing to do was eat and she grew to be a cute, chubby little toddler. :) She is healthier than me now. The only issue she has had since then was an issue with her colon(?) a couple years back. It was pinched together and she was not able to expel bowel movements due to lack of space. The Dr. assumed it was blocked/obstructed somehow. The hospital she was staying at thought she was going to need surgery but luckily it corrected itself and she hasn't had any episodes since then.

I would like to now how your recovery is going. Many people post prior to surgery and shortly after biut no followup stories.

Our daughter, now 16, has a Ladd's Procedure in April of 2010 at Children's Hospital Boston. She had the following symptoms before surgery: Chronic constipation, abdominal pain, nausea, acid and bile reflux, distention. It took us 3 years, consults with 6 pediatric GI doctors and 6 pediatric surgeons, several upper GI series, two endoscopies, sonograms, sitz mark study and a hydascan to figure out what was wrong with her and find a surgeon who was trained to perform the surgery and had successfully performed it again and again. It was Dr. Tom Jaksic, pediatric intestinal surgeon and professor at Harvard Medical School.

The surgery was successful. She did indeed have malrotation. She also has dextracardia - her heart is positioned on the right side of the chest...this often goes hand in hand with malrotation....her cardiologist never mentioned this and we've been going to her since before she was born! She was missing a ligament of treiz, had redundant looping of intestines, no blockage or volvulous, and a moblie cecum seen in 3 different places on three different xrays. She also had Ladd's bands that were cut.

Since surgery she felt better for a few months and then the symptoms came back. Right now, she is a junior in high school and has missed about 75% of the last 3 months of school. She is stressed about this and the whole SAT college thing which adds to the symptoms (abdominal pain, terrible nausea all the time, hideous constipation). She has been on every type and combination of over the counter laxatives and has not had any relief. She has also had 4 "clean outs" since January. We have just found out that NY Presbyterian Hospital Columbia Medical Center in NYC has a Pediatric Gastrointestinal Motility Center. We saw a pediatric GI doctor who referred us to the clinic and suggested an anorectal tomography. We are currently waiting for a call back to schedule it (won't get an appointment for this test for 3 weeks the dr. told us).

I am not sure if any of this information helps anyone. This situation has robbed her of her quality of life. I wish you all the best with your health.

mirowpl said...
WOW, so glad to have found this. I also have malrotation. It appeared on my final barium scan before my crohn's surgery. But they did not do anything about it during the surgery. Although they did do my crohn's resection as open as they were not sure what they were to find. Well, they found that when they cut me open at the belly button, the illieum (small and large intestines connnection point), just fell right out.....now we all know that this point should be down on the lower right side of a person's admonin. They removed 8 inches of small, 4 inches of large and the appendex, then closed. they did nothing else as this was very diseased from the crohn's.
Now, here is where it gets interesting....that surgery was almost 2 years ago. ever since I have had off an on nausia, feeling of always being full after eating, weight loss (15 lbs or more), plus diareha. I just had another colonoscopy which showed the crohn's was active but only in a small 2-3 inch section and there was no swelling, just ulcers and some redness. My GI noted to my wife that he does not understand how I could be having the symptoms I am having with such a small area affected.

So, I am calling him tomorrow to ask him to review all the previous scan and to study on the malrotation. I have it, it has been diagnosed and the surgery for crohn's proved thiing were not where they were suppose to be. I want to start feeling better and I need someone to listen to me.

HI! I've been searching the internet trying to find info about Crohn's and malrotation and this is the only thing that came up. I was diagnosed with malro in 2010 and had a Ladd's procedure months later. My symptoms slowly started coming back 3 months later. Last March I was back in the ER with a partial obstruction and found out I have strictures and enteritis most likely due to Crohn's. I'd love to pick your brain. I'm so confused about which is causing what problem and what to eat to help. For malro I've been told to consume lots of fiber and to take Miralax everyday. Now I'm reading for Crohn's to avoid those things. If I do I can't have a bm, if I don't I will have problems with the strictures and possibly another small bowel obstruction. Any advice would be greatly appreciated!

I don't know if I have IBS or not:( I went through a month of horrible constipation to liquid stool, sometimes over 10 a day!! It's scared me to the point I've ended up at emergency 4 times the 4th finally admitted only to be told there is nothing wrong??? How is liquid explosive stool "ok"?? And it's been ongoing for 13 days no end in sight:( I'm going bonkers I don't want to eat anything I'm too afraid of the pain and bowel movements . HELP?

Looloo2 said...
I was just diagnosed with Intestinal Malrotation yesterday after having a CT scan a few weeks ago for cramping in my left side. Thank goodness for this diagnosis.....I think. It explains the years of intestinal issues, including my gallbladder surgery when I was 18. I am now 41 years old and am relieved to find out I am not crazy. I continue to have localized pain and cramping in my left side. I met with a colon and rectal surgeon who gave me the news, but he said there is nothing he can do for me unless I experience "severe" symptoms. I took that as "when you are doubled over and vomiting, call me." Do I follow his instructions, or get a second opinion? I continue to have complications with diarrhea, constipation, bloating, gas, noisy bowels and the cramping in my left side, which is always there but at times puts me over the edge. Do I just wait or take this further with my doctor? I would love any comments and suggestions. Thank you!

See my recent post. My physician warned me to not wait until that severe symptom!! I would get a second opinion.

Hi I am 33 years old in uk and have been diagnosed with malrotation just 2 months ago whilst in for bariatric surgery it was found. I've always suffered from nausea and stomach cramp pain detention trapped wind but never thought this condition even existed until now. No doctor has ever told me this could be my problem and I've been told it is extremely rare and I get the feeling no one knows a lot about it here. I've been reading what I can to educate myself but its hard to find a lot out. I'm glad I found this site with people that have the same condition as me so I know I'm not alone I've also suffered with a lot of pelvic pain and pain in my Fallopian tubes and ovaries I don't know if this is something different or maybe because of the condition , has anyone else had these symptoms ? Any information would be great thanks . Also just would like to say hi to everyone I'm new to this site .

My 6 yr old was diagnosed last month with Malrotation, then had the ladds procedure and removal of the appendix. Within a week he began vomiting uncontrollably and was hospitalized for an additional 4 days with no definitive diagnosis. We are working slow on eating bland soft foods to get his stomach/intestines back on track. Wanted to know if anyone get a strange pimple, noticed this when he was feeling sick and prior to the surgery and started seeing them after the surgery when he was not feeling well. Also, I would like to get a second opinion from another GI dr, we are in Central NJ and have been at RWJH. Does anyone recommend a GI specialist, even willing to go to CHOP for an evaluation if needed.

Hello, I recently had a CT of my abdomen taken, and the results are as follows; "Findings suggest malrotation of the small bowel. The small bowel appears to be on the right side of the abdomen with the large intestine all seen on the left side." After reading the report my GP recommended I see a gastroenterologist because a specialist was needed. I then began googling Intestinal Malrotation so that I could get some information pre seeing my doctor next week, and that led me to this page. I have read a number of your stories and I think its great that there is a forum for this! Let me begin by telling my story.

I have had problems with my hips since I was about 16 years old, and was in physical therapy for this when I was younger. As I got older the pain returned and so I saw my orthopedic. He ordered that I have an MRI of my lower back done and that's where this all began. The MRI came back and stated, "There is partial inclusion of what appears to be a significantly dilated viscus, probably the stomach. Clinical correlation is recommended and additional imaging can be performed if necessary." So my orthopedic sent me to my GP who sent me for further testing. This is when I had the CT scan done.

I have never had any serious GI problems. It has been brought to my attention frequently that I could possibly have IBS, but not really wanting to deal with it I ignored it for the most part. I have had issues with frequent diarrhea, some abdominal pain for no explainable reason, cramping when I really need to use the bathroom, random stomach pains, and what I refer to as Loud Digestion. A lot of my stomach pain was both non-consistent and something I typically attributed my anxiety disorder since that frequently caused me stomach pain. I am now starting to figure out that his may be caused by this malrotation.

I am going to see the nurse practitioner at my gastroenterologist's office next week and am very nervous. Does anyone have any suggestions on what I should be asking about when I get there? Any support is welcomed I'm a little in the dark here and very nervous.