chronic intestinal Psuedo Obstruction

keg
0 Recommendations

Hi Everyone,

My sister has been diagnosed with CIPO. She is 41 years only and lived for her first 37 years with no problems at all. At 37 she started getting heartburn and bouts of the ruuns. Her bowels would be all bubbly with the fluid moving around. Over this period she lost loads of weight. Suddenly in Sept 07 she suffered a physical bowel obstruction when her small bowel twisted round on itself serverl times (volvulous). She had emergency surgery and they found that her bowels were Malrotated (not properly formed and fixed to the abnominal wall). They corrected this doing the ladds procedure where they fix them into the correct position. It was thought that post surgery all would be well and that she would fully recover. However, nothing works now at all and she is constantly sick, her tummy is as big as it would be at 9 months pregnant and she has no bowel movements at all. She is 100% fed by a TPN through a line and can eat nothing. She is also very swollen in her legs. She is on Fetinol patches for pain and medications for sickness but nothing really helps.

Has anyone ever heard of CIPO not appearing until later in life. My impression is that if you have CIPO you are maily born with it. I can't help but wonder if the problem is a result of her bowel being malrotaed but the doctors all discount this as a coincidence. For three years her tummy was swelling and causing her to loose weight and everything was just passing straight through her. I think this was when her bowels were twisting back and forth as they were not fixed properly. Could that have caused the damage that caused the CIPO now?. During the three years that she was loosing weight she had Barium enema tests, ct scans etc but doctors just kept saying it was some kind of food intorerance that she had. I wonder if they had dianosed the malroted bowel and fixed it by keyhole surgery, if the outcome would have been different. It just seems too great a coincidence to me. I'd love to hear from anyone who has any views on this.

Shona (kegs sister) in desperation
Scotland

2 replies

KE
  • By KE
  • Posted March 9, 2008 at 7:13 am

Hi Shona,
My name is Kathy and I have CIPO. I think that it would be useful for you to read my posts.
I have to rush out now but will post again later. I think that it would be helpful for you to realise that the 'experts' are still pretty clueless as to the cause of gut motility disorder. The main questions remain: Is the cause genetic ie it is a fault within our genes which is pretty unstoppable or do some unfortunate individuals catch a virus that starts off damage to the nervous system of the gut. It could be exposure to certain toxins that have appeared in our food chain. The research into this area in the UK is rather pitiful so we are having to rely on information from other countries for information.
It seems that CIPO can occur at any age, from tiny babies to the elderly. We desperately need to find out what the trigger is.

Speak to you later.

K.

KE
  • By KE
  • Posted March 10, 2008 at 4:45 am

Hi Shona,
I have been having a think about your sister's problems. The malrotation must be genetic in origin. Is there anyone else in your family with similar problems? I know that adult malrotation can often remain asymptomatic which is why Kegs managed to get to mid 40's before problems appeared. I feel that it was like a time bomb waiting to go off and just required a trigger to set it in motion.The trigger could have been any number of things including a tummy bug or mild food poisoning. Indeed anything that might have caused added stress to the system. Surgeons are very reluctant to do surgery in adults for this condition because it can lead to lots of complications, but in your sister's case her obstruction (volvulus) made surgery essential.
What is the evidence that she has CIPO in addition to her other problems? Have full thickness biopsies of gut been looked at histologically and if so what sort of tissue abnormalities have been identified? in the absence of specific evidence your sister's problems may be due to surgical complications. I agree with you that it seems strange that CIPO suddenly appeared out of the wood work during middle age. I think that it is very important that the medical profession don't start using CIPO as a fashionable 'catch all,' like IBS which came to mean we don't really know what's going wrong. However I always keep an open mind because we know so little about motility disorders. Many of our members here with GP can almost pin- point the date when their problems started!

Kind regards,

K.

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