A Sticky Story!!

Many of us who have had multiple abdominal surgeries can find we later have issues with adhesions.

I was reminded of this the other day when I was talking to someone about my story.

I was further reminded yesterday of my abdominal adhesions, when I spent 8 hours in crippling pain, due to a bowel/stoma blockage. As a result of adhesions, spinal instability, compressed nerves and Diastasis recti, I was a complete mess.

I should have gone to hospital but I knew what was wrong and I wanted to try all the treatments at home first. Lots of fluids, stool softeners, heat packs, rest, liquid/soft diet etc.

It really was a day from hell and I was particularly worried as I had no passing of gas. This usually means a severe blockage. I wasn’t vomiting though so there was hope!

By evening, very slowly the blockage began to move. I was not out of the woods but I knew I was on the way to a resolution of the situation.

Diastasis Recti is the separation of the abdominal muscles. Mine requires surgery but all surgery is off limits for the moment, as my risk of severe complications are too high. When the muscles separate, the intestines can herniate and other organs can also be at risk of pushing through into the abdominal cavity.

Add in abdominal adhesions and compressed nerves in the lumbar spine, also impacting the bowel and bladder, you can imagine the level of pain and distress I was in.

In the midst of the drama I also realised I haven’t written anything about my adhesions story in my blog.

I know they affect many people who have had multiple surgeries, and other conditions can cause them too.

So let’s step back in time a little and I’ll tell you my “Sticky Story”. In many regards it was the start of some of my major health issues today.

My Adhesion Story

In 2010, at the same time as I was diagnosed with Rheumatoid Arthritis, I was also battling intense abdominal pain.

What I didn’t know at the time was I had so many abdominal adhesions, my bowel was obstructed and in knots, stuck to my abdominal wall and my ovaries were obliterated.

The ongoing pain which was always worse during ovulation, caused me to finally see a Gynecologist. Thankfully I found one who was prepared to listen and think carefully about what might be going on.

My ovaries couldn’t be found on an ultrasound. A good indication something wasn’t right as we knew they had to be there somewhere!!

The Surgeon(Gynaecologist/Oncologist) decided I really needed an investigative laparoscopy and I happily agreed. Something wasn’t right and we needed to find the source of the pain.

The Surgeon couldn’t believe his eyes once he started the laparoscopy. He said he’d never seen so many adhesions. He told me afterwards the density and complexity of them was spectacular!!

As a result of the adhesions my ovaries were completely diseased and full of cysts.  They had to be removed and thankfully post surgery my abdomen was returned to some semblance of normality.

The instant relief from pain and fever following this surgery (called Adhesiolysis) was amazing. My Total Abdominal Hysterectomy in 2007 was the main cause of the issue and also the start of revealing my underlying bowel issues.

The adhesions were the nail in the coffin and, 3 years later, resulted in my severe rectal prolapse and the need for my permanent colostomy in 2013.

Many Surgeons won’t remove adhesions because with each abdominal surgery more will return, so it’s like fighting a losing battle for the Surgeon and the patient.

My Gynaecologist felt in my case I had all the classic symptoms at the time of severe adhesions. He felt not to operate would have led to peritonitis, a condition which could have killed me. He was right, I was full of infection and disease.

Diarising my symptoms really helped get a diagnosis in my case. We were able to discern a pattern, as my pain was always excessive when I was ovulating. This knowledge helped my GP and I work out what scans to have and what Specialist to see.

An Ongoing Sticky Issue

As a result of needing more pelvic/abdominal surgery during 2011 to 2013, due to my rectal prolapse and subsequent colostomy, I am left with more adhesions.

You simply can’t keep having them removed and I know they cause much of my constipation/blockage issues and extreme abdominal pain. I doubt they are helping with the Diastasis Recti condition either.

So, I have to live with and manage these sticky, annoying, at times dangerous, adhesive inhabitants in my abdomen.

Given all my other health issues I could definitely do without them. Understanding them and knowing I have them, does help me make decisions in terms of when to go to ER, or when to give it 24 hours to see if the situation will resolve.

If you have pelvic pain and nothing is showing on scans, it could be you have Abdominal Adhesion Disease.

It’s not to be underestimated, so please keep raising the possibility with your medical team if you’re  concerned.

I’m so grateful I’m feeling slightly better than yesterday. Also grateful my remedies include lots of hot cups of tea. Hmmm…..I think it’s time to put the kettle on again. Not such a bad life after all!

Take care

Sam xx

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Australian Aspire Awards 2020 Nominee – Awarded Medal of Recognition for Individual Best Achievement Community Advocacy.
Thank you to Arthritis Queensland for the nomination!