Thank you for your story. My heart goes out to you and your strength and struggles. Do you think it's possible for the surgeon to have missed adhesions when he operated on Tuesday? I understand the whole body tensing up thing but feel confused or maybe I'm ignorant. I cna't help to think he missed something when he did the lapo on Tuesday. Thank you. Robyn
>Hello Robyn,
>
>I haven't been visiting the IAS board for several weeks now, and just
>happened to click on your message about your recent laperoscopy and
>wanted to share with you some of my personal thoughts and ideas based on
>research and discussions I have had recently, following my August 1
>surgery to divide adhesions and application of the new adhesions barrier
>SprayGel here in Australia.
>
>I write a lot, it is one of my therapies, a way to help me cope and it
>also helps me put things into perspective and order. One of the hardest
>things about ARD is coping with unrelenting pain.
>
>Recently I was asked to explain what difference SprayGel has made to my
>life and how exactly it has helped with pain etc. I would say that my
>pain has been reduced significantly, however I have permanent damage to
>my bladder and there is still a question about my bowel. (I start a
>series of tests next week to start addressing that issue) and so I have
>written down this piece, based on the questions I have been asked. I
>hope this helps and perhaps gives you some ideas and new avenues to
>explore....
>
>here it is:
>
>After the spray gel treatment, what has your life been like? How has it
>changed?
>
>There have been many benefits associated with my last surgery and a few
>disappointments too. The SprayGel itself seems to have done its job,
>which is to discourage the re-formation of internal scar tissue –
>adhesions. So from that perspective the surgery was a complete success.
>
>Prior to surgery as you will note from the lengthy and detailed
>monologue about my daily routine governed by pain levels, I have gained
>a substantial amount in the area of “quality of life and daily
>activity”.
>
>I am driving again, while only occasionally as being ill for such an
>extended period of time has a devastating affect on a persons “body
>condition” and I am still now “retraining” myself to be able to cope
>with many activities associated with every day life.
>
>To understand the complexity of this issue requires an understanding of
>how the body and mind work and how our “subconscious” becomes
>conditioned to certain stimulants for want of a better word.
>
>I have lived with chronic pelvic pain for a good many years; to be
>honest I can’t tell you exactly when the pain really started to
>interfere with my everyday life. It was at first gradual and it just
>gnawed away quietly at the edges until the final act that sealed the
>fate of my body's tolerance of pain occurred. This came about with my
>hysterectomy in February 2000 and I started complaining about intense
>and unbelievable pain from that time. So for the last almost two years,
>my body and mind has been subjected to unbelievable torture – pain and
>the “pain pathways” are now well entrenched in my mind.
>
>The mistake many people make who undergo surgery to counteract the pain
>caused by adhesions is that they expect to wake up from surgery and for
>there to be no pain and that they will go home and live happily ever
>after. This isn’t in fact how it works at all. There have been a
>number of studies on this topic done, but I am drawing on the
>information I received from my GYN surgeon during my post surgical
>examination last month.
>
>He explained that when the body experiences intense acute pain over an
>extended period of time, our body’s muscles tense and shorten in a
>direct response to the pain stimulant. This is a subconscious process
>and while I have been very diligent and careful to regularly use
>relaxation exercises and techniques, they can only go so far without
>extra help, or the removal of the pain stimulant.
>
>So the pain stimulant is removed (adhesions cut and SprayGel adhesions
>barrier applied) removing the cause of pain stimulation for the last
>almost two years, however, in that time, my muscles have been in a
>constant state of tension and they have shortened considerably and lost
>flexibility. So while the cause of pain has been removed, my muscles
>are still in a constant state of tension. I now need to “retrain” my
>muscles and exercise them so that they become flexible, lengthen and
>become easy to stretch.
>
>To illustrate what I mean…. Think about a young child who wants to do
>the splits, we have all done it, we practised and practised until
>finally we manage to completely do the splits, reaching all the way down
>to the floor. To complete this activity we have trained, used muscles
>in a consistent and regular fashion allowing them to become subtle and
>pliable, stretchy and flexible. I now have to do the same thing with my
>pelvic floor and abdominal muscles. In order to allow flexibility and
>“give” in these important muscle groups I must exercise and change their
>“condition” in order to help relieve the feeling of pain I experience.
>
>Since the surgery there has been an enormous improvement to my pain
>levels, I would confidently say that my pain level has been reduced by
>more than half. I still need to plan things carefully and realise that
>if I do “x” activity today then tomorrow will be spent either reclining
>in bed, or in the reclining chair reading or working on my book. I
>won’t be able to cook dinner or hang out the washing.
>
>So at the moment I have regained the ability to be a more active
>participant in my life, but there are still huge restrictions and
>obstacles to overcome. The difference now is that the goal posts are in
>sight and I feel a quiet confidence in being able to achieve in
>reclaiming a reasonable amount of my former life and activities.
>
>The downside of my illness and the long-term affect adhesions have had
>include permanent damage to my bladder. I must self-catheterise a
>minimum of four times a day. First thing every morning and last thing
>every night, with two other times slotted in somewhere in the middle. I
>have to plan any journey because I must have hygienic conditions in
>order to catheterise safely without introducing infection.
>
>I also have a bowel that seems to have stopped working. The jury is
>still out on that one…. I am still undergoing a number of tests and
>really don’t have all the answers for that just yet.
>
>So I am able to spend more time in the office, do a few scattered
>household chores, drive my car occasionally, attend school functions for
>the sake of my children, join in on occasional family activities. Sit
>in the family room of an evening with my family, eat an occasional meal
>with them, go for walks down by the river (which I LOVE and truly
>missed), I am able to better concentrate on my support group work and I
>am more productive and getting closer to actually finishing my book, I
>am participating in our business networking group again, working as a
>volunteer for the local cancer group and have regained some “intimacy”
>with my wonderful husband of 19 years.
>
>So Robyn, I hope I have illustrated my ideas well enough to give you
>some hope and encouragement. Before that surgery in August my life was
>reduced to living in bed 24/7 shut away from my family and friends. The
>pain had become unbareable & my health declined rapidly. I developed
>high blood pressure and the sudden onset of type 2 diabetes.
>
>I was on 60mg Oxycontin morning and night, 120mg amitryptaline at night,
>10 to 30 mg Oxycodone and valium for breakthrough pain. I then found my
>pain levels climbing even higher & I was hospitalised and received 15 mg
>sub-cut morphine every three hours and that continued until my surgery
>over two weeks later.
>
>My drug regime now is much better! 30mg Oxycontin twice daily with a
>very occassional 10 to 20 mg oxycodone for breakthrough pain and even
>rarer still a valium in combination with the oxycodone.
>
>I am taking longer walks, enjoying more meals with my family and slowly,
>week by week improving. So Robyn, try starting off with some gentle
>walking, and just push yourself just a little further say once a week
>until you have gradually built up to taking longer and more vigerous
>walks. Set yourself some achievable goals and work towards them first,
>then just before you reach your goal, start working out what your next
>one will be. Before you know it you will be amazed at how far you have
>managed to go. I hope you will give this some thought, and I look
>forward to hearing about your progress.
>
>Please come and visit http://www.bombobeach.com and take a look at the "How to
>Cope" section you might find a few strategies there that you will find
>useful too.
>
>Love & warm gentle hugs,
>Jo
>
>--
>Joanne Eslick
>Founder Australian Adhesions Support Group
>http://www.bombobeach.com
>NSW Australian Co-ordinator of
>International Adhesions Society
>http://www.adhesions.org
>
>--
>I am not a medical person, and all my messages are based
>on personal experience. I am a fellow adhesions sufferer
>reaching out to help others.
>
-- Robyn