Another Day, Another Diagnosis

Something isn’t right. This is a new pain, a new discomfort. I feel like something is stuck in the middle of my abdomen, just below my ribs……plus I look 6 months pregnant!

This is the conversation I had with my husband just over a week ago.

He was so concerned by what he was witnessing with this new symptom, unbeknowns to me, he raised it with our GP in his own appointment a few days later.

I was sitting at home while he was at his appointment. I was happily blogging and chatting on my online support forum, enjoying a window of opportunity when my pain meds were easing my pain a little.

The phone rang and I assumed it was my husband telling me he was on his way home. Wrong!! It was my GP.

He still had my husband in his office and they had been chatting about me. My husband had poured his heart out about his concerns regarding my new abdominal issue.

An Intervention Instigated

I felt an intervention brewing….all from a place of love and concern of course.

My GP wanted to know all about my new symptoms. He wanted to know my thoughts which is lovely.  He respects I know my body, and have done an enormous amount of medical research over the past 10 years, as my disease has progressed. He isn’t threatened by my ideas or suggestions, he welcomes them.

We both felt the first step was to rule in or out a hernia. So my husband was sent home with an abdominal ultrasound referral.

While I was expecting to just put up with this new symptom for a while, it seems I was being overruled. Whether I liked it or not, I was once again on a journey to discover a possible new diagnosis.

I knew in my heart it wasn’t nothing. I knew I needed to check it out, so as I waited for my husband to drive home, I decided I was incredibly grateful for my loving husband and caring GP. I really did feel very blessed they were instigating a much needed intervention.

I wasn’t however looking forward to an abdominal ultrasound. My broken bones, mobility issues and lack of pain control, does nothing to inspire me to pursue any kind of tests or procedures. It’s so exhausting and just hard work!

I was also concerned about the scan because of my stoma. I had visions of it being over-active and making a nuisance of itself, especially as my stomach was being prodded and poked.

I didn’t know if the scan would be possible because of the location of my stoma. I have mesh behind it to prevent a parastomal hernia, plus all my previous abdominal surgeries have given me abdominal adhesions disease, so it’s quite a mess in there.

Despite my concerns, as soon as my husband came home with the referral in hand, I rang to make an appointment.

The first thing I was told was there was quite a waitlist. I almost felt relieved!!

However just as I was saying, “that’s ok”, I was told there had been a cancellation and I could have my scan in two days time!

Wow….ok then. I took it as a sign I really did need to get on with this.

What An Experience!

When I booked my scan appointment, I explained very clearly I had special needs due to my disability. COVID restrictions mean you are generally not allowed to have anyone come into the waiting room with you.

Carer’s are the exception, so I explained my husband was my full-time carer. I also wanted them to know I had a stoma, so I asked the receptionist to ensure the sonographer was aware. Always best to have no surprises in these situations I think.

The receptionist was incredibly understanding and I at least felt confident the appointment booking was thorough. My needs were going to be catered for, at least to some degree.

What I hadn’t anticipated was the amazing experience I was to have on the day.

I had the best ever sonographer! She invited my husband to come into the ultrasound room with me. She was so respectful of my disability and my stoma as she performed the test.

She even talked through everything she was seeing. She asked me to point to exactly where I’ve been having issues.

Surprise, surprise, turns out I was spot on!!

Usually a sonographer will not give a diagnosis. This lovely lady seemed to grasp I am dealing with a lot with my health and I need answers.

She explained I have a condition most often found in pregnant women, but can be caused by other diseases.

In my case my unstable, fractured lumbar spine, severe stenosis, numerous major abdominal surgeries and abdominal adhesions, are all combining to cause my new diagnosis.

I Have Diastasis What?

I have something I have never heard of before!

I have Diastasis recti, which is the partial or complete separation of the rectus abdominis, or “six-pack” muscles, which meet at the midline of your stomach.

It’s causing pain, extreme abdominal swelling, stoma blockages and bladder leakage (pelvic floor issues).

It all feeds in to me needing spinal fusion surgery to stabilise my spine. As I’ve explained in previous blog posts, my Surgical team are so torn about what to do, in terms of surgery, as I’m at high risk of major complication, including paralysis and death.

My bone disease really is a situation with no easy answers, no clear path providing any kind of certainty. It’s no one’s fault. It’s just how it is. All I can do is find ways to live as well as possible with it.

True to form, my GP rang the next day. He had received the full report and could confirm the sonographer’s diagnosis. He also said the “separation” was large enough to warrant surgical intervention. We both agreed at the moment surgery wasn’t an option. We agreed to keep monitoring the situation and, if my condition worsened, I will see my Colorectal/General Surgeon for a Specialist consultation.

Unfortunately I am so limited in what physical therapy I can do due to my bone disease. I can make sure I only eat small meals, avoid physical movements I know worsen the symptoms, and do some more research in terms of conservative therapies.

Gut Feelings Count

At least my “gut” feeling (excuse the pun) something wasn’t right was correct. It does make a difference knowing what’s wrong. It encourages me to know I’m still in tune with my body. I can distinguish between my overarching, and all consuming bone disease, and realise when something else is going on.

Don’t doubt yourself. Don’t put off getting tested if you feel something isn’t right. We do need to keep on top of our general health. We can’t assume our main chronic illness is responsible for everything.

Another day, another diagnosis but I have peace of mind. I know what it is and what it isn’t. I can begin to accept it as part of my Medical rhetoric.

It’s just another chapter in my epic story. I’m sure it will soon be just another condition I manage without thinking about it too much.

In the meantime, I’ll be researching from every angle, the best way to ensure I can take a conservative approach and avoid surgery.

I have a plan and a little bit of control over the situation, which I must admit makes me feel better already!

So not all interventions, by those who care, are bad. I love my husband loves me enough to take action, when he knew I was too tired and fed up with my body to do it myself.

Take care

Sam xx

If you’re looking for genuine support, care, understanding and friendship, you are so welcome to join my closed Facebook support forumMedical Musings with Friends . It’s a safe place to connect with others living with chronic and complex diseases, who truly understand the daily challenges. A warm welcome awaits.

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5 thoughts on “Another Day, Another Diagnosis

  1. I love that your husband cares so much for you, and that your doctor actually wants to hear your experiences because he values your input over your own body (which not many doctors seem to do!) I’m also glad you got the scan fitted in quickly, which gave you less time to worry about it.

    I must admit, I’ve had some awful doctors and specialists and nurses, but I’ve definitely had some lovely staff when it comes to scans. Sounds like you had a fantastic sonographer, which makes so much difference, doesn’t it?

    I have heard of the separation of the six pack but only knew a little about it. I think I’d uncovered it when trying to figure out what’s going on with my musculature causing my chest problems. This might be a really stupid question, but how did it happen, do you know? I wondered after all your surgeries maybe it was the weakness in tissues and such that might have led to it happening?

    I’m so, so sorry, Sam. I’m glad your husband pushed for answers when you were too exhausted to and I’m very glad you listened to your gut in the first instance. I’m just sorry it’s an almost impossible situation because any long term treatments are surgical and not appropriate under the current circumstances. I think research is absolutely a good idea. Would you like any help, see if I can dig up anything? Or should I just butt out? I feel so useless.

    I hope you can take some time out to distract yourself and soothe your soul because this is a lot for any person to take on, even a tough cookie wonderwoman like yourself. Sending lots of love your way  ♥

    Caz xxxx

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    1. You are such a beautiful soul Caz. Thank you so much for your love and support. Your input is always welcome. I so wish we could meet in person. I think we’d just sit and chat for hours and forget about our health while we do ( and we’d regret it the next day as our bodies remind us we overdid it 🥰😅)

      My “separation” will be because of my unstable/non healing broken spine and all my abdominal surgeries.

      I found a great book which I ordered yesterday. Looking forward to reading it. I won’t be able to do the exercises but it’s also about making life changes which will be helpful. I’ve had to change how I use my walker as I lean on it too hard to keep me upright. Doing that worsens the separation gap and swelling. We’ve made my walker higher than I’m technically meant to have it, but it’s better for me so a positive change already!!
      https://www.booktopia.com.au/diastasis-recti-katy-bowman/book/9780989653961.html

      If you do find anything interesting I’m all ears 😅😅❤❤

      Love you

      Sam xx

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  2. I dont know if i would have have been happy or angry with Sheryl if she had called my docotr without me knowing. I think both, angry first, and then OK with it.

    I am so sorry you have a new diagnosis. This one seems so out of left field. I did read that this happens many times during pregnancy. I was going to tease a little until i read more and realized how serious it is. Many blessings Sam.

    Liked by 1 person

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