Tag Archives: therapy

Reflecting on my 70th

Birthdays and anniversaries are times for celebration, and reaching “three-score years and ten” years is certainly worth a big three cheers! But they are important for reflection as well.

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Renmark Reunion September 2015

Gratitude to God and to the most important people in my life over these 70 years are features I’d like to be emblematic of me.  I am still surrounded with so many loving and kind people, I have enjoyed wonderful peace and excellent health, and my contribution in several circles is still wanted and apparently appreciated.

Ten days ago Helen and I gathered to celebrate my 70th birthday with our 4 children, their spouses and our 11 beautiful grandchildren.  A wonderful 5 days . . .

October 6th is ten days after my birth-day and  marks the 70th anniversary of the life-saving surgery I had in the Netherlands.  I would not be writing this but for that day in my life!

Together with the country of my birth and background, my weary and expecting parents were struggling to emerge from the ordeal of World War 2.  And then I arrived, their long-awaited first child, but soon clearly defective: scary, uncontrollable and life-endangering vomiting (infant pyloric stenosis – “PS”).  And these were times when medical science was pretty rough and ready by today’s standards and when people didn’t dwell on what they’d rather forget.

Pic 12

Mother with me – October 1945

So October 6th marks what I now realise was the gift of a new and wonderful second start in life, but also the beginning of a life-shaping journey of exploration and discovery – outside of me and within.

Outside, my parents were unwilling or unable to answer my reasonable questions about the 10 cm scar on my belly, and this drove me to look for information elsewhere.  But until the advent of the web, this search yielded only cold textbook medical data about PS and the then 33 year old surgical fix for the condition.  And explanations of my deeper issues were nowhere to be found: there were no pointers to where these might be unearthed and no ways of identifying people who could help me to realise (as I do now) that my pain was by no means wacky.

Book coverWithin, I was tormented with private pain from the dawn of my self-consciousness until recent years.  Even now I am still working to piece my private pain-puzzle together, although the web has given me access to much information, clarification and to networking with fellow-survivors, all of which has enabled me to receive and share much healing.  Since 2012 I have blogged about my journey, and in 2014 a pediatric surgeon friend and I published a small book, in which he explained what many still regard as the elusive cause of PS and I outlined my personal experience of this condition. It so happens (in Australia at least) that October 6 falls in “Mental Health Week” – and my own story has certainly helped me to feel a sense of identity with people challenged by mental health issues.

Time changes things!  The past 70 years have taught us the value of openness in the home, the importance of both listening and speaking for healing, of collaboration in achieving goals, and (by no means least) we have learnt much about trauma.

70 years have also brought huge changes to surgical technique and to holistic care in the hospital and home.  Time seems to have done less to change the unhelpful attitudes of some in the medical profession – but that’s due to human nature being far from perfect.

What do these changes (and their lack in some respects) mean?

120327-07-WgHcThe kind of trauma symptoms I struggled with is rare among more recent PS survivors.  Their surgical scars are sometimes almost indiscernible, usually tidy and very rarely as gnarly.  Affected children’s and their parents’ questions are typically answered much more fully and sympathetically, and the children are helped to understand, “own” and even feel pride about their story.

As I see it, I have discerned this is the growth in myself.  I am indeed a survivor from a bygone era of medical practice and parenting, and my scar is an exhibit of mid-20th century surgery.  I know it’s not socially correct for a cultured older gentleman like me to proudly show off his scar as an 8 year old lad might… but I’m catching up on lost joys and enjoying it!

Coming out – about our scars after infant surgery

Many of us feel most comfortable conforming, not drawing attention to ourselves.  Many others pride themselves in being different, “standing out from the pack”.  I envy them!

I very much belong to the first lot: I totally hated my 9 cm (3½”) scar from a pyloric stenosis operation back in 1945 when I was just 10 days old.  My scar shame was quite apart from the symptoms of post-traumatic stress which (as far as I can discover) resulted from the story of my first illness.

This deeply felt sensitivity about my scar was probably not unconnected with the psychological effects on me of the surgery, but it mushroomed when I became conscious of wearing a scar that is “front and centre” and very obvious in the bath and at the beach.  Asking my parents about it clearly unsettled them, further intensifying my own discomfort.

The internet has shown me that my obsessive sense of shame is far from universal among those who have needed infant surgery, and that many flaunt their scar with pride and think up fantastic stories about having been stabbed, or attacked by a shark.

But I have also been greatly comforted to learn that many have felt as I did:  my emotions and inner pain are hardly freakish or unique.

yay1One of the things that has helped me to find peace with myself is the number of people who have used the web to share their own struggle towards the self-acceptance of their disability or disfigurement.  Often their life was much more difficult and their blemish more severe than mine

I have also joined the many who have also gone online to “objectify” their scar: to post a photo of it or of them wearing it in public, empowering us to break through what is very much a self-imposed complex and to see ourselves as others do.

Again and again the posts and comments on social networking sites like Facebook express gratitude at the opportunity to network and share something that in the past was all too often a lonely and endless ache.

For those interested, here are some links to blogs that others and I have found liberating –

Angella Dykstra – Scarred for life

David Fetterman’s story about Father and son

Maggie Van Buskirk’s story

Nathan Long – Forced to fast for peace

Enjoy!  Grow!  Share!

Pyloric stenosis then and now

Medical science has made huge progress in the past century.

  • If I had been born 30 years earlier my infant pyloric stenosis (“PS”) would have given my parents a horrible choice: Submit your long-awaited 10 day old firstborn son for major and horrific surgery (probably without an anesthetic) that killed around 75% of babies, many of shock, blood loss or infection – or see your little one die of thirst and starvation.
  • Modern medicine01My father suffered from mild diphtheria and tuberculosis – diseases that are now virtually unheard of in developed countries.  My family is thankful that Dad does not seem to have been seriously affected.
  • One of my grandmothers was almost blind for the last decade of her life and although my father was able to have his cataracts removed, it meant several days in hospital and wearing thick and heavy glasses for the rest of his life.  My eye problems were solved with three day-surgery procedures: a retinal detachment restored 95% of sight in that eye and my 2 cataracts were replaced by lens implants that make life much easier than having to wear glasses.
  • My mother-in-law had 4 children, then suffered post-natal depression and never recovered, dying at age 90; in this sad and dark condition she had another 5 children.  My wife and I have been able to manage our fertility and enjoy life as well as loving the family we planned.

The several PS Groups’ Pages on Facebook and other internet forum sites (e.g., BabyCenter, MedHelp, PatientUK, and Topix) make it clear that even today, the distress of having a baby with PS does not always end after the scabs from the surgery fall off.  Even in adult life, the long-term effects, although not universal, can be inescapable and extremely troublesome. But just think of the changes from what PS and its surgery were like when the older readers of this post (and their parents, most now passed on) experienced it…

  • General anesthesia, especially for a baby and even today, will always carry a small risk and may still be found to have long-term effects, but it is nevertheless always used and widely regarded as very safe.
  • breastfeeding1PS babies undergoing surgery no longer suffer maternal deprivation: the danger of infection is usually well-managed and hospital rules and staff are no longer as severe as they were.  Mother and baby only need to separate for only an hour or two.  In my case in 1945 it seems to have been some 2 weeks – and both Mum and I continued to feel it.  Today almost all babies can be held and nursed almost immediately after they recover from the operation, and most are cleared to return home within 2 – 3 days.
  • Single port pyloromyotomy scar

    Single port pyloromyotomy scar

    Surgical techniques have improved vastly.  PS surgery once involved an incision which left a scar that grew to an average of 10 cm (4 inches) and usually became quite indented and puckered.  The wound was closed with sutures that left significant additional dimple scars.  No wonder many of the generations who were disfigured by their life-saving surgery took years to come to accept their scar – if ever.  Single port laparoscopic surgery for PS has now become “best practice”: all the work is done through one port (or tube) which is inserted through the navel, and if it is well done and under the right conditions this leaves no visible scarring.

  • Parents and PSers now have access to information, networks and therapies that can help them to understand the physical long-term damage and the psychological and emotional effects that are possible after infant surgery.  When fully effective treatment healing is not possible, the availability of the above help and support will still give many benefits.

This blog, like many of the parents and adult PSers who subscribe to the online forums, wants to see PS becoming more quickly recognised more often, its immediate and long-term after-effects better understood, acknowledged and managed, and not a small number of the medical profession having a much better (more respectful, informative and honest) attitude to PS parents and patients. But I also want to take note of and celebrate the progress that has occurred in important aspects of this condition… in my next post.

“No brain, no pain”? That’s insane!

Can a baby remember trauma experienced in her or his first years?

In times past the answer was an insistent “No”.  Before about 1990 it was commonly believed that because virtually nobody can recall and describe any event from early childhood, be it happy or troubling, a baby makes and keeps no record of anything before what we can later recall and express in words.

This of course sounded very reassuring and comforting!

  • The serious mistakes some parents make when a baby is very young – no memory, no record, no damage.
  • Family, life and health dramas which a little one survives – no need to worry about it affecting baby.
  • Separation from mother, adoption, foster relationships – none of this will harm a little one.
  • Will we have our baby son circumcised “so he looks like his dad”?  “Go ahead, no worries!”
  • My baby needs life-saving surgery but anesthetising a baby is risky – “Just go ahead, she won’t really suffer.”
  • A baby’s screams under the knife upset a young theatre nurse – “Hey, he won’t remember anything.”

Evidence contrary to these soothing assurances must have been as clear and widespread as it is today.  If you dare, just check out one of the YouTube videos on what happens when an infant boy is circumcised without pain control.  Still more amazing to us today is that it was believed by many until recently that babies not only don’t remember pain – they don’t feel it!

Besides this, hospitals until recently were “holy places”, the word “holy” meaning “separated, inaccessible”.  Children under 12 were not allowed to visit, a husband couldn’t support his wife in labour, and the fear of infection meant many patients (even babies) were not visited (or touched) while in hospital.

arrogant doc4The health and medical community was fed these “no brain, no pain” mantras in class and then recited them with the absolute authority and firmness that came with their position, especially in earlier times.  Parents and patients would rarely question a doctor’s word.  Doubts, even those arising from observing the painfully obvious, were dismissed.  And doctors were only challenged by “difficult people”.

This situation was of course possible only in the simpler, more authoritarian, and much less informed times which today’s older generations remember well – but only Gen-X’ers and their seniors!

We must remember that there were few alternatives.  Pediatric medicine as a specialist field was not born until 1950, and even after that time anesthetics and pain control were often “basic” compared with today.  All anesthetics (even today) carry risk, and rendering a child under age 3 unconscious involves some additional and substantial risk factors.  In the past a baby’s surgery and pain relief were usually managed by people who did most of their work on older children and adults, so it is not surprising that general anesthesia was often avoided and that the surgery done with enough skill but often little finesse.

So the “no brain, no pain” mantras of past medical science not only suited the times but also served to help parents to cope better with a lot of the all-too-common dramas of family life, including infant surgery.

These beliefs also fitted well with another feature of those earlier times which many of the older generation may remember but still resent:

  • most parents had little or no understanding of their child’s or their own psychology;
  • children were “to be seen but not heard” and were too often “stonewalled” –“Just go and play!”
  • many parents were reticent to talk about uncomfortable things like inner feelings, painful experiences, and uncomfortable subjects.

Baby unhappy01In 1945 I had an operation when 10 days old to control pyloric stenosis, and the details of that were always kept from me. In other posts I have written about how the sad but understandable ways of the past have affected me and many others who had earlier infant surgery.  They did so in a variety of ways –

  • some were affected and/or traumatised as babies by the relative ignorance, inadequacies and failings of medical science and the hospital regime;
  • others were affected by the mantras I have discussed;
  • others again were disturbed by their parents’ inability to help them understand their story and inner being.

People like the “heroes” I have mentioned or discussed in several of the previous posts have been crucial and foundational in challenging some of the medical world’s beliefs and attitudes of the past.  They have researched the old shibboleths and shown them to be utterly wrong.  They have explained how trauma and pre-verbal memories can affect even tiny babies.  They have worked on effective therapies to manage the damage and bring healing and wholeness.

I am so thankful for these people’s skill, insight, courage and determination.  They have changed many lives very much for the better – including mine.

Recognising and treating the pain of long-ago infant surgery

Early this year saw the passing of someone I have never met but whose work has formed a very important landmark in my life, one I would not like to do without.

Dr Louis Tinnin

Dr Louis Tinnin

Dr Louis Tinnin was an American psychiatrist, therapist, medical school professor and reformer of the care of those affected by mental illness and trauma.  He died of congestive heart failure last February at the age of almost 82 years.  Interested readers can read an obituary online.

In 1992 Lou Tinnin began to research new approaches to the healing of trauma sufferers, and four years later, now retired, he set up the Trauma Recovery Institute (TRI) with his wife Linda Gantt.  This was a clinic based on his findings and new therapies.  In 2006 the TRI was closed and the two set up Intensive Trauma Therapy (ITT), an institute committed to the research of trauma, to its treatment and to training therapists.  Lou and Linda became known as “Ma and Pa Trauma”.

I have posted about Dr Tinnin on this blogsite several times in recent years.  For the countless people like me who have been affected by trauma but are unable to benefit directly from the ITT’s programs, the ITT’s website has been very informative and generous, and it was linked to Dr Lou’s blog – which I’m very grateful is still online.

This blogsite is not a large “read” but is a “must see” for anyone who has had infant surgery, especially if this was before 1990, and if they struggle with mystery symptoms which may have resulted from trauma.

Wendy P Williams is my blogging partner on the effects of infant surgery and the treatment of trauma-caused dis-ease; she has also posted a tribute to Dr Tinnin and it is well-worth reading.

How have I been helped by Dr Tinnin’s work?

Like many others, I developed infant pyloric stenosis (a form of stomach blockage) and had surgery, in my case just 10 days after my birth in 1945.  My parents must have been so traumatised by this that they would never talk about it to me.  Much infant surgery was shockingly crude before the transformational work and writing of Dr K J S Anand in the later 1980s about which I wrote (again) in my previous post.

Anesthetising under 2 year olds was especially hazardous before the advent of current materials and methods, and so doctors were taught and spread the mantra that “babies don’t feel or remember pain”.  It is now known that this rough-and ready surgery is indeed not remembered by the conscious memory, but is recorded as trauma by the sub-conscious or body-memory – in another way and by another part of the brain.

Added to that early operation, I was affected by some 2 weeks of maternal deprivation during the standard recovery period in hospital when mother and babe were kept separated to minimise the risk of infection, and by my growing up with my parents unable or unwilling to help me with my internal turmoil.

How this kind of trauma affects people in their growing and adult years is remarkably typical, and deeply troubling.  I experienced that.  Before the internet made it possible to share stories and compare notes, I and those like me were left to ourselves in isolation, feeling “different”, troubled, even wondering if we were crazy.

1          Dr Louis Tinnin’s blogsite tells of his “search for tell-tale characteristics of adult victims of infant surgery without anesthesia”.  Here at long, long last was a medical doctor who
(a) did not deny the past practice of infant surgery without anesthesia,
(b) described exactly all those troubling feelings and weird hang-ups with which I had struggled for most of my life, and
(c) gave hope: there were therapies, treatments and places where people like me could find a way forward.

2          Dr Louis Tinnin’s blogsite also shows very clearly how he made himself accessible to people like me.  Just look at the 75 comments (to date) below his key post.  His patience, humility and faithfulness in responding to the questions and comments I and others like me had was truly exceptional, in fact unique!  As mentioned in my previous post, in recent years several people have shed valuable light on recovering from old-style and crude infant surgery, but only Lou Tinnin has made himself so available.

Thank you, Lou Tinnin!  We miss you but you have left a legacy that will not be soon forgotten.

Help with adhesions

Adhesions are the Number 1 problem people complain about long after many infant surgeries.  Adhesions are easily top-of-the-list for those who had surgery for infant pyloric stenosis (“PS”), judging by the “visits” to this blogsite and the online forums to which I subscribe.

Recently I corresponded with somebody whose post-PS adhesions were being treated by massage and physical therapy.

After this I was heartened to receive an email from Lawrence J (Larry) Wurn, who developed this treatment together with his wife Belinda; they now head up a network of six clinics in the U.S. offering this treatment.  I also visited their website and read some of the testimonials.  What could I do other than pass on this information that may be life-changing for some of our readers or their family and friends?

WurnLarry-headshot

Larry Wurn

I am deeply touched by your blog.  My physical therapist wife and I started studying adhesions after she underwent surgery and radiation therapy, just before we were married.  A year afterwards, she could not walk, move or breathe without significant pain.

Knowing that surgery would only make her worse, I quit my job, and we began studying adhesions – first in the USA, then attended courses at a French Medical School.

When we were able to cure her, we opened a private physical therapy practice – our only focus is on adhesions.  We were surprised when we found (and published data on the fact) that we could open adhesion-based blocked fallopian tubes.  From there, it was not long until we started opening adhesion-related bowel obstructions, both partial and totally blocked intestines.  We have recently published studies on all of these.  Basically, we pull adhesions apart with our hands, crosslink by crosslink.  It’s a bit like pulling apart the strands of a nylon rope, strand by strand.

Physio Therapist Belinda Wurn treating a "Clear Passage" patient.

Physiotherapist Belinda Wurn treating a “Clear Passage” patient.

I was touched by your blog because we have treated many people who have undergone infant surgery, and the post-treatment results have been very good.  In fact, we recently published a study in which we treated a gentleman whose first surgery was for small bowel obstruction – when he was less than a week old…  In his 70’s, he was still suffering from recurring adhesions and obstructions until we treated him.  We did ‘before and after’ radiology images which showed that we cleared his adhesions and obstructions, using just our hands.  His doctor says he will now no longer need surgeries 🙂

We have now grown into six clinics in the US, from Florida to California.  You are using one of our images [it’s in my first post on adhesions – Ed.]  Your blog is doing a wonderful service.  Check out our site, contact me if you like, and let’s continue to help people overcome their adhesions – hopefully without surgery.

Best wishes,

Larry Wurn

Director of Clinical Studies
Clear Passage Physical Therapy
www.clearpassage.com

In a follow-up email, Larry Wurn added some links that may well be of interest – and appealed for a suitable Australian physiotherapist who may be interested to join his team!

…  I very much appreciate your dedication, your work and your blog, and will check in when I can.

The following links from our website may be useful for some of your readers.  We have quite a bit of information including pages about adhesions, and about treating pain or dysfunction from early surgery.  They can also download free book chapters that explain adhesions by clicking here.

Belinda Wurn at work

Belinda Wurn at work

Regarding early surgery, here’s a link to the study that includes the gentleman we treated at age 69 who suffered complications from two childhood surgeries, and how we treated him non-surgically.  He had bowel obstruction surgery at birth, followed by an appendectomy in early childhood.  The adhesions that formed from these and other surgeries caused problems throughout his life, then became life-threatening (bowel obstructions) in his 60s.

Some day, I would love to train a physiotherapist or osteopath in Australia in our work – we do get patients who fly here to Florida from Australia for therapy.  It would be so much easier for them if I could train a physio in your part of the world.  Would be great if one of your readers could direct one to me.  Best would be a female physio or osteopathic physician, since we also treat adhesion-related female infertility.  Because our work is ‘hands on,’ those female patients sometimes prefer to be treated by another woman.

… Thank you again for your dedication and your life work.

Sincerely,

Larry Wurn

Adhesions (7): What helps? What doesn’t?

Adhesions are one of the almost inevitable after-effects of abdominal surgery, including infant surgery such as I had as a small baby for pyloric stenosis.  They are responsible for most of the “visits” to this blogsite.

Pain01Because we are each unique, our bodies deal in unforeseeable and individual ways with the damage done by any invasive event or procedure, whether that be open surgery, the gases and drugs used in laparoscopic surgery, and even trauma-causing events such as falls, traffic accidents and sporting and weapon injuries.  Although adhesions will usually result, they will only seriously trouble some people, and even less people in a way they believe they cannot live with.

Doctors are reluctant to talk about adhesion pain, and will usually not “engage” with these patients.  This is disconcerting and frustrating, but what can they say?  However, it would be better if doctors were able to recommend pain management training or therapy to such patients.

Adhesions are best left alone: the surgical remedy sometimes (and perhaps often?) gives short-term relief but usually makes abdominal discomfort and pain worse in the longer term.  It can only add to the scars and tightness, and set off the development of even more adhesions.

Some readers may find it helpful to read the 6 posts I have already written about adhesions: what they are, how they affect people in general and particularly in pregnancy, and how they are sometimes dealt with.  I have also compiled some of the comments and personal experience stories people have shared via the web.  To find these 6 posts, click on the “Categories” box at the top right of every page, and then on “Adhesions”.

In this post, I want to recommend the best web forum I have found that is devoted to this subject: MedHelp’s Abdominal Adhesions User Group.  By following this links you’ll be able to read what a good selection of people with problem adhesions have experienced, tried, and sometimes found helpful.  Reading through these sites will also encourage those afflicted by adhesions to try the generally agreed on management (notably, a good diet and pain management) and to try some of the less agreed-on recommendations (for example, physiotherapy and herbal medicine).

To illustrate and invite, here are two contributions to the MedHelp site –

“nk56” wrote earlier this month (edited a little) –

I am a 30 year old female who suffers from extreme abdominal adhesions.  I had pyloric stenosis at 5 weeks old, a perforated ulcer at 7, adhesiolysis at 27, and laparoscopic surgery to correct ischemic bowel at 29.  I’ve been through a lot.  When I was 27 I started having extreme excruciating abdominal pain.  I have seen so many doctors and had some many emergency room visits and tests done that I’ve lost count.  I have been falsely diagnosed with differently diseases including pancreatitis because doctors couldn’t figure out what was wrong with me.

What they did know for sure is that my stomach is deformed from surgery and many of my organs are “glued” together.  My adhesiolysis proved that and did nothing to relieve the pain.  What I can gather from experience is that gas passing through my stomach was what was causing the pain.  Every day I would have to fall to the floor and wait for the pain to pass, thinking I might go into shock each time, or end up in the emergency room again.  I was prescribed Norco for the pain, which actually made it worse I think because it messes with your digestion.  After three years of everyday being a living nightmare and seeing countless doctors who had no answers for me I felt helpless and hopeless.  I’m 30 years old and want children and knew that I could never take the risk of getting pregnant and being in that kind of pain.  I could not sleep on my left side or my back and intimacy would often be interrupted by bouts of pain, which caused further depression and stress in my already stressed by pain relationship.  Luckily for me I have the most supportive loving partner in the world, but even the most perfect relationship in the world suffers from chronic pain, everything does, as you well know, and could never truly articulate to someone who hasn’t experienced it.

I had a chance encounter with a friend who told me about systemic enzymes.  In our late twenties enzyme production in our bodies starts to decrease, leaving us more susceptible to inflammation and pain amongst many other things.  Elasticity in our bodies also decreases, which is exactly what happened to me.  I started taking Vitalzym systemic enzymes 2 months ago, 4 capsules 2 times a day and after 1 month of taking them I have not had one single pain attack and can lie on both sides and my back!!!!  A miracle!  Every person who suffers from adhesions must know about systemic enzymes and the role they play in our bodies and at least give a try.  Please, for yourself and your loved ones.  They take a while to work so it’s not a quick fix, but it’s a real fix and they have no side effects and I have no need for opiate pain medicine, it does just fine.  When I am hurting a little because I stupidly drank alcohol, it’s the only thing that will cause pain, probably because my tissue gets so dehydrated.  I have my life back and no fear of becoming pregnant: you can take them during pregnancy, they’re actually beneficial for that too.  Please at least look into it.  Good luck on the journey, and please keep your hope alive, there is light at the end of the tunnel.

“Jaybay” wrote in 2010 –

It’s a shame the Adhesion Society fell apart a few years ago.  For a while it was a great support group, but as with so many such groups, infighting developed and destroyed the whole thing. 

The sad thing about adhesions is that there really isn’t much that can be done about them when they get as bad as you are experiencing.  In some people (like you and me) the stuff grows out of control just as bad as cancer.  Nobody likes to hear a doctor say they are powerless to help, but that’s where I’m at too. 

It took a lot of mental work for me to accept that my life was forever changed because of adhesions.  My pain shrink has actually done more good for me than any of the other docs.  Once I accepted that I wasn’t ever going to be my old active self again, I could finally start building a new life.  I refuse to become “my disease”.  I am still me.  I am not my adhesions. 

Learn to live on liquids.  Make friends with your blender and make protein shakes.  I can’t stand Ensure and similar products, so if I have to live on liquids I’d rather make something I actually enjoy.  I’m sure you know by now what foods cause the most problems, so avoid them and supplement what’s missing with liquids.  Avoid high fiber foods.  They tend to ball up around an obstructed loop of bowel and cause big trouble.  Use water soluble fiber like citrucell instead. 

Relaxation techniques help when the pain spikes.  Most people tense up and hold their breath.  That only makes it worse.  Learn how to control your breathing and keep your muscles relaxed.  It’s not easy but it can be done, and it does help deal with a flare. 

DO move around as much as you can every day, even if it’s only a trip outside around the yard.  That can help loops of bowel move around enough to relax an obstruction.  The more you lay around, the less likely you will ever have any kind of a life at all other than in bed. 

DO stay hydrated.  You don’t want to add additional problems to your already hurting body. 

DO try to find distractions from the pain.  Easier said than done, and it takes real work to do it.  It doesn’t matter what that distraction is – a book, watching a movie, talking on the phone about anything other than your pain – just do it. 

Try to decrease your pain meds a tiny bit and see where your pain levels are at.  Expect pain levels to increase quite a bit for a few days.  It may even take a couple weeks for the receptors in your brain to clear enough to see improvement.  Spikes in pain are common when you reduce pain meds. 

DO find a pain psychologist if you don’t already have one.  Therapy does not mean sitting in a room and griping about your pain for an hour.  A good therapist will have real-world suggestions to help you cope with your pain and the changes that pain has brought to your life. 

Any chronic pain impacts not just the patient, but the patient’s family and friends and areas of life that can be shocking.  “Normal” people honestly have no idea what chronic pain and illness is like, so don’t expect them to get it.  It’s not that they don’t want to understand; they can’t. 

It all boils down to acceptance of your condition;  doing what you can to medically treat the symptoms; and creating a new but meaningful life with what you CAN do.  It’s not easy, but it IS possible.  🙂