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Could my 15 year old daughter's Abdominal Adhesions be treated urgently and privately? If so, where and with whom?

My 15 year old daughter suffered an abcess on her perforated appendicts at two years old. Since her surgery from that time on her health has deteriorated - she is overweight, constantly nauseous, exhausted and cannot empty her bowels. She does not attend school and cannot lead a normal, teenage life-style. She is often depressed and always in pain and bloated. Our local Health Authority - who caused my daughter's problems - has neglected her case and we are abandonded to cope alone and unsupported. Is there a Consultant/Surgeon/Solicitor able to help us please?
Female
Female
asked Aug 19, 2010 at 02:27PM in Surgery
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  • 1
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    answered Aug 19, 2010 at 06:04PM
    Without knowing your country and your health and regulatory resources available, it is impossible to answer your question. Certainly, the first thing which should be done at this time is for a consultation with a gastro-enterologist specialist who can determine the cause of the gastro-intestinal symptoms and whether further surgery is even necessary. Sometimes this cluster of symptoms you describe can be due to a non-surgical condition such as "irritable bowel syndrome" but it takes an examination and testing to consider this and other conditions. ..Maurice.
  • 0
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    answered Aug 20, 2010 at 12:08AM
    We are in the UK. The NHS has not been kind to my daughter. She suffered Peritonitis aged 2 years old and was mis-diagnosed by 3 Locums and several Doctors at our local hospital who sent us home after a night's stay telling me that I was making a fuss and that she was too young to have an Appendictis, as I suggested she did. Once they finally realised their mistake my daughter was dying and she was then urgently treated with intravenous medication and surgery was performed 3 months later. That was 13 years ago. Since then her problems have become worse because she cannot poo for up to 5 weeks for most of the time. Her bowels have never been regular since that time. She suffers from engorged glands, bloating, headaches, constant pain, bleeding from the rectum, nausea and vomitting blood from the gut at times. She also feels tremendous pain in her uterus and her - what can only be described as "contractions" - waves of pain as the body attempts to unsuccessfully rid itself of waste - will last for 20-30 minutes. Her problems are severe and she is ignored by our Health Authority. She remains at home. As a Counsellor I understand her mental health. She is very unhappy and often depressed and does not know of any other young people like herself because her problem is rare for one so young.
  • 0
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    answered Aug 20, 2010 at 09:22PM
    Yes, the way her symptoms are described by you "her problems are severe" and should be formally attended to. I am not clear as to what you mean by "she is ignored by our Health Authority." It is pretty hard to "ignore" the cluster of symptoms you describe. Obviously your daughter isn't ignoring them either. You must find a gastroenterologist in your area in the UK to help solve and resolve her problems. My best wishes to you and your daughter. ..Maurice.
  • 0
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    answered Aug 21, 2010 at 01:02PM
    Key words are "abdominal adhesions"! From a mom whose daughter suffered incredible pain- 14 years due to medical neglect and misdiagnosis-I wholeheartedly "get it" when you state your daughter is ignored by health authority. For Dr. Bernstein, let me help make it more clear: innumerable medical professionals and specialists totally ignore those who suffer from adhesions. It is maddening, exhausting, and financially crippling to many people who wander from doctor to doctor in an effort to get help when suffering from the debilitating pain of adhesions. Statistics show that the average person will suffer 7-10 years before finally learning (usually due to their own research) that their pain and symptoms are actually due to adhesions.

    In addition, the majority of gastroenterologists perform test after test while leaving the sufferer in the dark as to the actual cause of illness. Or, as in my daughter's case, misdiagnose and treat for an illness the sufferer does not have.

    To the person in question: from a woman who has walked a million miles in your shoes, I would not seek a gastroenterologist, but rather seek out a surgeon who is an expert in adhesiolysis. Karen Steward author of the book "Doctors: Bound By Secrecy? Victims: Bound By Pain!

    Please contact me and I will be happy to send you a free copy of the book. God bless.
  • 0
    Votes
    answered Aug 21, 2010 at 02:32PM
    Karen, unfortunately, I haven't read your book but I would like to know how the surgeon who is an expert in adhesiolysis objectively documents the presence of adhesions as a cause of the symptoms by a technique which is not available to a gastroenterologist? Is it by history and physical exam only or are there some non-invasive radiologic techniques? If it is assumed by history and physical and other causes are excluded, is the proof at the time of surgery and what are the observations, documentations and finally what is the result of surgery? Do you know if any research study has been performed where patients suspected of adhesions as the cause of their pain and GI symptoms, have had "sham" surgery with simple opening and closing of the abdomen without adhesiolysis vs those who was given adhesiolysis, neither group being aware of what was done and the symptomatic outcomes documented? Thank you for any information you can provide me regarding my questions. ..Maurice.
  • 1
    Votes
    answered Aug 21, 2010 at 05:26PM
    Best Answer
    Maurice,
    As the mother of a daughter who had the "top" gastroenterologist in our area, my knowledge of adhesions (unfortunately for my child) came hindsight. As with many things in life, a proper perspective is often not obtained until one has completed a course.

    In short, my daughter was diagnosed and "treated" for Crohn's disease. I had reason to doubt that diagnosis.

    During the course of her illness, I sought out many other gastroenterologists and specialists in many areas of medicine. All dead ends. However, we did meet gastro's who agreed with me: they doubted she had Crohn's disease.Yet, none could tell me just exactly what was going on with my child. We got the vague--way overused--IBS conclusion more times than I care to remember. (If a person's life is at a standstill due to immense pain, nausea, vomiting, etc. it is very patronizing to throw that patient in the "IBS" or "depression" can). But, I digress.

    What I could not get from ANY gastro or specialist was PROPER medical terminology! I was shown x-rays (repeatedly) that told the story: intestines that were abnormal. ALL gastro's and specialists described the locked down areas as "narrowed," "narrowed bowel," "thread-like bowel," "compromised bowel," rather than scar tissue or adhesions! Because of the hush-hush surrounding this all-too-common problem/medical condition that is known among physicians as an iatrogenic disorder, my daughter needlessly suffered many, many years as I continued dragging her across the country (all the while breaking the bank) in an effort to find out what was wrong with her.

    It is an injustice that I intend to change so others will not suffer what my child suffered.

    So, in answer to your question: rather than a gastro lacking tools to diagnose adhesions, it is my opinion (hindsight) the gastro's knew all along, but simply refused to speak the word: adhesions. Perhaps the reason for silence among physicians is twofold: #1. Patients who have knowledge of adhesions would then be able to weigh the benefit of surgery against the risk of developing a debilitating condition. #2. Most physicians have no answer for adhesions and know that surgery for adhesions only creates more adhesions.

    In my daughter's case, when we finally learned the true cause of illness: adhesions, I was able to find an expert in adhesiolysis. This surgeon had no need to see years and years of worthless medical records. Rather he read my email and replied: Your daughter has adhesions. Bring her to me.

    The person posting the question in this thread states her daughter has abdominal adhesions. Enough said. She also states: since her surgery "her health has deteriorated." Enough said. Therefore when you--a doctor--suggest IBS, I am sure you heard my scream all the way from Texas!

    I am not a doctor and never give medical advice to anyone, but I have learned when the problem is adhesions--the problem is adhesions. Thus, she needs a doctor who specializes in adhesions, not one more gastro to insult her with an IBS (should be BS) diagnosis! (Sorry, doc, but we have lived this nightmare).

    As far as your query about research studies, "sham" surgeries without adhesiolysis versus adhesiolysis, opening and closing of the abdomen, etc., I can tell you--in all honesty--that I do not look at "research studies." I do, however, talk to many, many people who suffer from adhesions (and the many problematic symptoms they cause) who developed adhesions as a result of surgery--both good and bad (sham)--surgery. You know and I know that an estimated 93% of patients who undergo abdominal or pelvic surgery via laparotomy will develop adhesions and more than half of those people will develop a problematic condition known as adhesion related disorder as a result of the surgery--(good or bad surgery).

    I enjoyed the discussion of this misunderstood and all too often misdiagnosed illness. Thank you for your questions.
  • 0
    Votes
    answered Aug 21, 2010 at 06:33PM
    Hopefully, if diagnosing adhesions is impaired by the need for unwarranted secrecy (and I would say that virtually all secrecy in medicine is unwarranted) then something should be done to abolish that behavior. Thanks Karen for your view of a little discussed subject. ..Maurice.
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