Does anybody have an intestinal malrotation?

 I have an intestinal malrotation diagnosed last year and had a ladd procedure and my appendix removed in the summer of 2009.  Since then my stomach cramping is better, but I still have occasional feelings of cramping and nausea.  Not to mention that I can't take aspirin or I will get an ulcer.  I have read that a lot of people who have a malrotation have been told they have IBS and I guess I was just wondering if anybody here had a malrotation also and suffered from IBS.  I'm trying to get my stomach in line, but it's hard when nobody really knows how I work and my doctors haven't had a patient like me with the malrotation and I am super sensitive to medication and pretty much anything that goes in my stomach.  They say malrotations are typically diagnosed in babies, but I never had a problem until adulthood, so I guess I'm just weird that way.  Anyway, thank you to any who read or respond to this and good luck in the struggles of those whose insides are a constant battle.

Mar

I had my gallbladder out about 4 years before the surgery for the malrotation and I've had side effects from that, so pretty much anything that goes in my stomach upsets it.  I kick myself if I over eat or when I eat really fatty foods, but I crave bland foods sometimes and I think that is my body's way of telling me it needs some comfort.  I went back to the surgeon a few months back because I was having a lot of pain and the radiologist was confused by my upper GI & small bowel series because my instestines were moving freely when I would change positions, but it turns out that is just part of the surgery for the malrotation and I was okay, but taking NSAIDs for another issue was on the verge of perforating my stomach and that is a no-no.  I have horrible luck with pain relievers, well really most medications.  I haven't had too much trouble with exercise, but it seems like there are just bad days and I sometimes think with the intestines moving around the way they do no wonder.  Did your doctor give you any heads up about the future?  My doctors had never dealt with this before and with me being an adult it is more uncommon to find it, so really I haven't had much in the way of what to look for or what to expect.  It's a battle a lot of days, but I have noticed that the cramping and spasms I was having are definitely down from before so that's a plus.  I hope your daughter is feeling well and keeping her head up.  Good luck and I wish you well.  If you happen to find anything out as far as future expectations or any info really please share if you think about it.  Thanks!!

Mar

Hi,

I was diagnosed with intestinal malrotation a year ago, at age 52. I have had trouble with constipation and abdominal pain all my life, was diagnosed with irritable bowel syndrome 20 years ago, but it was manageable until a year ago, with extreme constipation, pain, and bloating.All the usual advice (drinking more water, taking probiotics, taking mineral oil, walking) had little or no effect.  When I was diagnosed with malrotation via CT scan, the doctor told me, "Well, nothing can be done for an adult with this condition. It's extremely rare. It should have been fixed at birth. Laxatives are in your future. Anyway, you've lived most of your life and done okay."  I was blown away by his dismissal of me. I began reading, and found that something CAN be done for adults, but I'm not sure how to find a doctor with experience in this.  I have a lot of pain on the upper right side, and gas and distension.

If anyone knows of doctors who are experienced with adults with malrotation, preferably in the western part of the U.S., I'd like to hear it. I do have a copy of the CD of the scan.

I have basically good health otherwise, am not overweight, do not eat a bad diet or smoke.

To malrotated,

 I hope you do find some help and some relief. Someone on another forum stated that they got help in Seattle, and someone else at the Mayo Clinic. I know what you mean about not being crazy. I've had trouble since age 3 (probably earlier), and people kept telling me I was "too anxious" and there wasn't a serious problem. I have been told that only 1/20 of one percent of adults present with malrotation. Nonetheless, the Ladd's procedure has helped many who have had it, even as adults, and that was invented back in the 1950's, I believe.

While I hear that malrotation is now surgically corrected in infants, that was obviously not the case when we 40+-year-olds were born.  However, I have seen numerous articles by medical professionals stating that surgical correction IS possible for many adults, and at least one article stating that it should be considered for ALL adults with malrotation, due to the dangers of volvulus (twisting and blocking of the intestine) and the possibility of strangulation and necrotizing (death) of the intestinal tissue due to bad circulation.  If I can find these articles online, surely doctors can as well.

My G.P. ( I just saw him last week, a different doctor than the one who diagnosed me) just admitted that he doesn't know any local gastroenterologists who might be experienced with this. He is old, but smart.  He also acknowledged that my history of severe scar tissue in the abdominal cavity makes me at risk for blockages. But he said that surgery to remove scar tissue often brings only temporary relief, as the scar tissue forms again whenever you are opened up.  However, temporary help would surely be better than no help!  I am now going to keep pestering him until he can refer me  to someone who can refer me to someone, if that's the way is has to be, until I get someone who will do something. I barely have any bowel movements. It's not a pleasant subject for conversation, but it's essential for life!

I am 30 years old and was diagnosed about 5 years ago with malrotated bowels. I have struggled most of my life as well with eating and digestion. It has been difficult to find information on this and I am thrilled to have found this forum!!
My overall frustration is that I love food but my body rejects just about everything I consume. Within minutes of eating a meal the pain begins and from there goes on for hours. Severe cramping, bloating and distention. On top of that bowel movements are few and far between. I have eliminated so many foods from my diet and at this point I don't really know what else to do.
I have been advised surgery is too risky because my other organs have began to grow fibrous tissues and connect to other organs. Has anyone else had this discovered? For example my colon has formed fibrous tissues and attached to my stomach. They say this is common with malrotated bowels.
I have lost a total of 30 pounds and the weight continues to drop. I'm also prone to ulcers and H.Pylori. There really doesn't seem to be anything at all I can eat without suffering from severe abdominal pain. It is the most miserable feeling.

THis is all so interesting. I live in the UK, am 46 and for the past year have had stomach symtoms. Initially it started as 'indigestion' i thought in April/May 2011 and i put it down to a very stressful job. Towards the autumn the symptoms had got worse - now after a fair sized meal (so every day) i'd get severe pain on my left side below my rib cage towards my stomach area. I went to my doc and she gave me 'magic tablets' that would repair the stomach lining as she (and I) believed it to have been due to stress the lining had been affected.
By December the pain was still there straight after meals - like someone was 'twisting my guts/insides'. Excruciating pain. intially with burping (not indigestion). Another doc appt and another set of tablets with him saying he was "convinced" it was kidney stones, and sent me for a ultrasound scan. This highlighted nothing at all (just a fibroid that unrelated to symptoms) and the tablets yet again did nothing to alieviate the pain.

Within the past 6-8 weeks i now regularly vomit straight after eating a meal just as the pain is growing. The vomitting happens even quicker after drinking water it seems - which i initially thought good to have a drink to 'wash the food down' and stop the discomfort.

I decided to use Private Medical policy and have been to see specialist. He said he's absolutely sure its NOT kidney stones and recommended me to a colleague for a endoscopy examination. The endoscopy showed no sign of ulceration, pollips, or tumours. But ... the consultant in his words said 'however, something a bit odd is ... you have a twisted stomach, possibly from birth'. He said, as i recovered in the bed, rather rushed he was ... "So ... hopefully it will start to sort itself out now". I thought this VERY odd as he hadnt actually done any treatment/procedure - just the endoscopy.
Now over 2 weeks later, i hear nothing from the Private hospital so i phone to ask for a full report and a follow up appt. The consultant telephones me himself today (a sunday!) to say that the termonology is a STOMACH VOLVULUS and will refer me to a colleague of his that is a specialist in this and there is a procedure whereby they "anchor" the stomach.
This is all news to me of course today, but reading things on the internet i am extremely concerned. In EVERY single report/journal it states that this should be treated as a MEDICAL EMERGENCY as can very quickly lead to a strangulation/loss of circulation of internal organs/areas which can be fatal. Bowel probelms can happen quickly - inc Crones and IBS of course (as a slightly less concern - no disrespect to any of you, but its better than the death stuff ive been reading today!!). It needs to be fully investigated. Also i am concerned that the symptoms have increased with vomiting now happening regularly ... unless i eat very small amounts of food/snacking.
ANY further information all you patients to this condition can find will be so useful to me. I am slighly despairing that the last consultant didnt appreciate the seriousness of the condition but it appears reading your responses to the similar conditions i have, that it is rare and maj of medical professionals dont know about it!! Good luck everyone!

Post Edited (leezie) : 5/13/2012 11:27:25 AM (GMT-6)

Hi,

Like all of you, it is somewhat comforting to finally find (after years and years) other people with similar digestive issues such as myself. I have been pushed off by baffled doctors since I was a child and was resigned to the fact that this might be only my problem and nobody elses.

I am 41 years old and since I was about 14 years old I can remember episodes (after eating fatty foods) of a severe throbbing pain on my lower right side of my abdomen just below my stomach.  I noticed it would come after certain bouts of voraciously eating fried, very dense (mash potatoes w/gravy) or highly oily foods. Back in the old times I would just curl up in the fetal position as the constant, dull throbbing pain went on and on. I realized early back then that even water made matters worse so I could only "wait it out". Which in my younger days involved fasting for about a day or more then slowly eating soft highly chewed foods by the end of the second day. After giving obstruction some time to digest (1-2 days) the highly chewed food seemed to go through fine. Slowly I would heal from the distention of wherever the obstruction was. I deemed it my Duodenum because it happened sometimes hours after I ate the offending foods and seemed to be located right after my stomach on the right. My only other theory was I had a very narrow "kink" in my intestines and if I gobbled down big chunks of highly fatty foods that didn't have time to digest properly and then it wouldn't go through.

I would get these episodes about 2-3 times a year going into my twenties. I tried to remember to not gulp down fatty foods in big bites but growing up in a household as one of three 6' athletic brothers I picked up a bad habit of rushing to gobble up my food intake during meals.. maybe a primordial instinct to get the most of my meals before my brothers got to it    lol..

I made doctor's appointments along the way for this issue but they would never find anything. Most times the issue was clearing up by the time I got the appointment so they would tell me there was nothing to be done. I went for a few sonograms over this time and nothing came up for the baffled doctors. I even went for a endoscopy in my twenties to a horrible gastrologist who failed me. During the pre-procedure consultation I clearly described that the issue was located after my stomach, possibly in the Duodenum or Treitz Ligament (I was forced to come up with my own theories due to no official diagnosis) but he simply "forgot" to send the scope into the Duodenum as he said he would and told me he doesn't see a problem in the stomach...  Greeaaat, Thanks Doc....

So I have this "untreatable", "mystery" digestive illness that I had to just live with until my mid-twenties (1997) when I met my wife (who is a pharmacist). I get the first episode a few months into the relationship and explain to her what is going on. She suggests trying Manesium Citrate as it seemed to be some form of obstructional blockage. So I skeptically pay the $1 (I'll try anything at this point) and try it. I down the whole bottle slowly (which tastes like very sour lemon lime soda) with 8oz of water. Within 45 minutes the pain dissappears! I can't believe it!! Twenty years of pain and suffering, doctors baffled and it is solved by a $1 bottle of Magesium Citrate! I decide this is the woman for me and marry her! Well not exactly like that but that was a first of many great things she brought to my life.  I quickly load my cabinets with 3 bottles of MC for back up for future episodes and figure I'm good for life. By the way, for any of you trying Magnesium Citrate. It is great, no cramping. Just about an hour to five hours later you have to be near a bathroom (preferably home) because you will have to make about four to five seperate trips over a four hour span. But you will never feel pain as MC is a gentile saline laxative that works amazingly.  

Fast forward fifteen years to yesterday. I have been using the Magesium Citrate for the 1-2 times a year as I get these episodes. Frequency has gone down a little as I have tried to eat properly and my "coach" (wife) regularly reminds me to take small bites and "CHEW!". But yesterday was a killer .

Yesterday morning I grabbed an egg whites, bacon and cheese hero from the deli after driving kids to school and absentmindedly scoff it down. A few hours later I feel the beginnings of the signs of the obstruction (faint, dull throbbing). But because I felt the same mild feeling a month ago and it went away on it's own (after careful monitoring) I got over-confident. So I proceed to eat a bag of Jalepeno potato chips while playing a board game with my daughter (mild throbbing slightly increases) and chase it a few hours later with two very cheesy sicilian slices of pizza. An hour later I am doubled up, twisting and turning, nauseous, feeling like I'm going to vomit and having cold sweats from the distention and pain in my lower right side. I was outta my trusty Magnesium Citrate so my wife runs to the store to get some. That's when I realized, being alone with my two children, that I felt I could die right there in front of them from a rupture in my intestine or duodenum. I realized how serious and how dangerous this issue can get. I don't want my children to grow up without me. She came back with the MC (9pm),.. I quickly down the whole bottle with a glass of water then impatiently and painfully wait for the throbbing to subside. This time it took over an hour as it was slowly getting better. I just went to sleep figuring I would awake refreshed. I did awake at 4:00 am and the throbbing went away but the location was very sore due to the distension. Officially my worst episode ever.  

For the past day I have been searching for some answer to my problem. I found out about Intestinal Malrotation (which I might have), poorly angle duodenum (possibly), Crohn's Disease, Superior Mesenteric Artery syndrome, or SMA (artery compressing the duodenum)... All of these are possibilities,.. I found this forum too but I haven't read anywhere about anyone (including here) who had a surgery to repair this ailments that was all cured afterwards. And I have read some horror stories of cases that if left untreated, could be fatal.

 

I also have not read one account that has been able to temporarily cure episodes like myself with Magnesium Citrate so I feel my "band aid" is not solving anything.

 

I fear I as I get older (41 years now) I am in for a horrible outcome from this unusual and rare ailment.

 

If anyone knows a gastrologist that specializes in this issue that is close to the New York area or vicinity please forward the information here? I could really use the help.

 

I will also post any new information that I find that might help with this issue.

 

 

Good luck @Noel723

Is it Laparoscopic LADDS procedure? I heard this is minimally invasive and might be an option for you.

 

I went to a dr from northwestern is familiar with malrotation Dr stryker had 2 surgeries still have pain

It is nice to find this although it makes me worried for the future. My daughter (now 4 months) had surgery for severe malrotation at 3 weeks. She still seems to have a lot of pain and vomiting with 2 medications. I am going to Children's Hospital on Friday and am trying to figure out what questions to ask. I hope she doesn't suffer for her whole life.

Hi everyone, my daughter now 10 months had endoscopic ladd's procedure at 3 weeks of age for malrotation. Despite this she still seems to have lots of problems with reflux, constipation, and abdominal pains. I am very interested to read you are in the same situation r0tati0n. How have things gone for you since your post? Any answers at the Childrens Hospital? My daughter is on omeprazole and lactulose. I am also very scared that she will have lifelong issues. I had thought that once she had her surgery, that she would be problem free- but reading all your stories, it seems that this may not be so:(

I am 19 years old and was recently told that I have malrotation. I have had stomach pains my whole life and an MRI showed a few weeks ago that as a fetus my spleen and pancreas did not fully form and I now have three baby spleens and an under developed pancreas. I received an endoscopy this past Monday and that was when I found out that I have Malrotation. The only things my doctors told me to do was go on a low fat diet and no tobacco or alcohol. As you can see I am young and have a lot more years on me and I wanted to know if there were other treatments for this disease because I'm not about to give up everything that I enjoy for the rest of my life. I have researched surgery but clearly there aren't many people like us and not many surgeries have been done, if anyone has had surgery could you please give me insight on if you think it is a smart idea for someone my age.

Thank you,

Auant Dolly or..... I have a situation that just about actually mirrors your experience.

An operation at 10 days old for malrotated stomach, I had to have 20 foot of scare tissue removed in 2001, stiil  slight to moderate turned intestine at 2011, which impeeds blood flow and thereby causes soom digestive trouble and right side pain, irritable bowl syndrome, reflux and gerg. 

I have been misdianosed with about a dozen dissorders or illnesses. I think the whole thing has to do with that operation at 10 days old.

I have at bladder stimulator implated 2 years ago and recently a nearve stimulator for occipital perifiral neuropathy.

I an 63 year old male.

David