May; The bringer of PAIN

May has always been a troublesome month for me. In the past; I’ve had surgery in this month, felt the worst pains in my IBD diagnosis and found working during those times very difficult. So May, has always been a low month. And this year was not exception.

Stoma wise; Priscilla has largely been trouble-free this month. I’ve had a couple of leaks and had to alter my change routine timing and some product around to ensure my peristomal skin is getting better not worse. But overall, she has been well-behaved and allowed me to travel, work and enjoy the good weather.

IBD wise; this has been the troublesome aspect of my life lately. I’ve had some testing done to see what and why I am still in pain with my lower back and my rectal stump. It’s been making working hard, I’ve had to rely on strong pain relief far too much and this has meant I’ve missed some days at work. I was somehow smart enough to take some annual leave days, so I’ve been able to get sorted without much aggravation but nonetheless, it’s been difficult.

My MCRP scan of liver showed no disease or any liver issues, except for the fatty liver we expected. I have a review in 8 weeks time to have more bloods done so we can monitor any other potential issues. My Pelvis MRI scan has shown no abscesses, no fluid, no collections or fistulas; so the IBD team do not know why I am in pain. It could be nerve damaged from the surgery and then the last Flexi sigmoidoscopy performed in February. After speaking to my GP this last week, this is the most likely explanation but it does mean I will have to take something to help elevate the pain. So I’ve been moved on to Pregalbin – which will help the symptoms, work alongside my Amatriptyline and won’t interact too much with my anti-depressant.

It’s been a stressful and worrying time. I’ve comfort eaten alot because I was not getting answers. Not having them has led me to worry more and more, and my health anxiety hit a high last week. I’ve just been frustrated and angry. Wracking my brain for answers or any explanation has had a negative effect on life lately.

Let’s hope it’s only going to get better now we know what we are dealing with.

Advocacy wise; I attended a PPI day with CCUK and related organisations to look into patient involvement with research projects into aspects of IBD. It was a great experience and I got asked to blog about it again! Which is always nice, to be recognised for my talents and my passion. That’ll be coming in the next few days , I hope!

Life wise; I’ve also done some filming for a new TV show, been to a watercolour course and generally enjoyed the good weather. Despite the ill-health and issues, I’ve found time to embrace all the good. So the negatives don’t cause too much of an impact.


Here is what I wrote about in May:

Until next time,