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.  🙂

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One thought on “Adhesions (7): What helps? What doesn’t?

  1. Wendy

    Wow, the two narratives you’ve chosen are power-packed. These are wounded warriors! They are so full of wisdom, I’m sure anyone reading this post will gain buckets of knowledge. One thing that I thought about reading nk56’s experience is whether acupuncture can be of some help. I am deeply grateful that I have not suffered from adhesions after my PS surgery at 3-weeks, but I have a lot of sympathy for those who suffer. It must be horrible and acupuncture seems like a strategy, since it works with chi, that could be effective. In any case, the strategies nk56 and Jaybay offer are excellent! I like Jaybay’s directives. I think he/she should write a book or a pamphlet and distribute it online. The prescriptions are right-on–so full of hope and common sense. Thanks for sharing the wisdom of these two adhesion gurus.

    Reply

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