There is something else to be said about trusting your guts… I think if I trusted mine, I would be in serious trouble. But if you look at abit further, a little deeper, there is some truth. My guts are a barometer of pain and of my condition. They let me know when something is wrong. They tell me about pain. They let me know when I need help. They are useful.Trusting Your Gut(s)
I wrote the above back 2012, a mere six months after my diagnosis. That period of time, I spoke and wrote with much clarity because acceptance was an almost full time job. I spent time learning about my disease, my body and how I reacted to it hurting me. I used humour to deflect but I always found rationalising what I was experiencing key to moving through it all.
Eight years later and I have a stronger grasp on my ability to trust my own guts. Yes, some might be long gone now but I’ve adapted to the new appearance and feel of my anatomy. Even during this lock down period, I am aware of my body. Of how it does what it likes, no regard for what is happening in the outside world or not.
I started to feel unwell during April and by Easter I was experiencing chronic daily obstructions above my stoma bag. I could usually wait for these to pass by massaging and manipulating the bowel back into place, where it would eventually move into my bag and empty. But as I began to feel really sick and unable to put up with the daily battle of massage – it can be painful when your bowel is hard and inflexible – I contacted my team. They ordered bloods and a calprotectin to check if I was flaring. My results returned a mild infection but a inflammatory poop marker of 333. I was put on steroids – the wonderful Prednisone – for eight weeks and we sought to find out more answers to why with a CT Scan.
That scan revealed a large hernia which has a loop of bowel twisted and stuck in it. It needed removing and my stoma revising. I was told this would need to happen sooner rather than later but the current pandemic has had knock on effects on surgical clinics and surgery lists. This is where I currently am, waiting for an appointment to make a surgical plan, find a date and get consent.
04/06 EDIT – I now have an appointment to see my surgery on June 15th.
Why continue the steroids?
Well, simply put, you can’t just stop taking steroids. They dramatically reduce your body’s inflammatory response and once they take over doing that, you need to reduce the dose of steroids slowly and over a set period of time. For IBD patients, this is usually 8-10 weeks, depending on how your disease behaves at lower doses.
As my IBD is currently under control and all my pain, discomfort and issues stem from a hernia, we can somewhat safely assume, I will taper off steroids without issues. I’ve discussed my experience on taking steroids since my surgeries – most importantly, since my stoma was created in 2016 – here, but it’s good to mention that each cycle of steroids can affect you differently.
This time around, I am experiencing more of the sweats and insomnia, more than the hunger. I’m coming up to half way through the course now, and it’s been a challenge this time around – with the added complication of now being a Type Two diabetic and needing to test my blood sugars while on my steroids. Let alone the fact that any steroid doses over 20mg classifies patients as ‘high risk’ and I had to go into shielding until I drop below this threshold.
What is the plan surgery wise?
After a discussion with my surgeon last week, we have established it is a peristomal hernia repair we will be going after. For the moment, the hernia is holding steady, so we know we have time to plan ahead. I know the warning signs of how much I can take before I need to get some medical attention; so I am now remaining at home waiting for a date. I have had three surgeries in the last four years; there will be lots of scarring and adhesions to contend with. Plus a large ovarian cyst. Plus the actual hernia itself.
But until then, he will see me in clinic in two weeks time so we can discuss surgical options and plan out what to do and when. Covid does not actually enter into this decision, but the knock on effect that previously planned and the new emergent surgeries are having on the reduced surgical lists, does. So it could be a little while until I go under for it, but it is a huge undertaking; meaning alot of planning and signing for possible different options once I am cut open.
We have two options :
- Open me up, get through the scarring and adhesions, take down the stoma, remove the hernia, repair the wall with mesh, refashion stoma and keep the same site (my right hand side).
- We could do the same as above but there could be too much scarring / an unknown problem, and we need to close the stoma off and relocate it to the left side. It would be primarily easier to do but in the end, it leaves me with two hernia sites, possibly two wounds and it is beyond weird to think of having a stoma on the other side.
So there we have it. I’m candidly open about surgery; I have mulled my surgeries over before, and while this one was definitely a shocker to know I need, I just have to get through the days at the moment. And I’m okay taking it day by day; it’s what lock down has been about.
I don’t think anyone wants to go in for a surgery during or in the immediate post heightened alert that has is and has been this Covid period. I certainly don’t want to be going in as an emergency, so I am taking good care of myself at home; resting plenty, getting my fluids in, eating well and right, moving, applying heat to my site when it becomes too much and I even have a small bag packed, just in damn case. I hope we don’t have to use that and I can get to my appointment and know the plan.
I do have some extra blood work results that came off the back of a subsequent referral from the CT scan to come to light as well, so I’m definitely in no rush to get this sorted out but also aware that this can not continue on for months and months. The next time it blocks or twists could be the one time I can’t undo it myself. And that is more scary than thinking about the actual surgery and possible complications.
Do you have any questions or queries? Or just want to share your own experiences?
If you enjoyed this post check out What Advice do Patients look for Prior to Ostomy Surgery? , What are the Early Warning Signs of an IBD Flare Up? and Oh August, Why do You Hate Me?