** WARNING: graphic details about surgery and rectal stumps. NO PHOTOS just words **
Bear with me, this is going to get technical and emotional.
Who would have thought a 30cm piece of my insides would cause me so much damn stress and pain?
I needed to have another surgery in August 2016 – my subtotal colectomy – after I discovered just how inflamed and damaged my colon was. I mourned the loss of my colon with a positive and happy attitude – stoma life would be different but it would be better, I knew it – but it wasn’t until I came around from the operation did I found out that my rectum was left behind. Under the influence of morphine and getting to grips with recovery and coming off TPN, I didn’t give my stump much thought. I would have the chance and opportunity to have my surgery explained in my post op checks, in the months that followed.
I bounced back from surgery, recovered and took everything in my stride. It wasn’t always easy or straight forward but I made progress every day and suddenly it was time to go back on my Crohn’s medication – trusty Vedolizumab – and have my first post op check up. I wrote about it here and it was very positive. We even had a second review about three months later, which is here.
The outcome from both was the fact that my stump was left there just in case I wanted a J-Pouch. Not something really given to Crohn’s patients, its more common with Colitis patients; but not unheard of. And after our discussion, I concluded, despite having only had my stoma for less than six months, I would actively choose to make it permanent. I would not gain anything from having two surgeries to form a pouch and remove my stoma – there was no guarantee that my IBD would not be present in my pouch. There was no guarantees with a stoma that I would be issue free but the pouch was definitely more problematic. We left things with this sentence: “You would need to make the stoma permanent within 5-10 years because the stump could become cancerous. So enjoy life until you need to make that decision.”
So we began 2017 on that note and I got on with life. I found a job, relocated and came off my Vedolizumab. Within six months, I was back in hospital; my IBD had flared up and I needed my medication to be restarted. I was gutted but I knew that medication free was just not really achievable for me, with the life I wanted – to work, to travel, to move, to just be more normal. So Vedolizumab was restarted and things were okay for a while. I responded well to it, it stabilised my disease, and despite it giving me some new side effects, I was effectively and proactively managed. I was making head way!
In November 2017 I travelled back to my old hospital and met with my surgeon – it was time for my yearly post op check. He insisted on checking my rectal stump and here in begins my troubles.
At that point the stump was occasionally giving out some discharge – like a mucous, which would pass if I spent a while on the toilet passing it like I would have done my stoma. It was an odd sensation but it was probably once or twice a month and that was bearable. There was no pain, it was just uncomfortable and odd to pass something out of my rectum when the rest of my bowel movements came out of my stoma, into my bag as output. And as much as anyone tells you that is normal, it is still a mind fuck.
At the start of 2018 I started experiencing pain when passing the mucous. It began being painful after the discharge was passed and I would be uncomfortable for a while. The hospital decided to scope me in the February and that was brutal. It was traumatic and extremely painful. They found mild inflammation of the stump which they treated with some suppositories. I did those, as uncomfortable and embarrassing as they were, but the pain was still there. I began finding the pain becoming more and more acute when I was nearing another Vedolizuamb infusion. And despite the fact that my stump was not connected to my gut, there was some therapeutic benefit to the Vedolizumab. I soldiered on. I sought pain relief for my stump from my GP – we tried Pregabalin which gave me a reaction before moving on to Amatriptyline. That worked fantastically at numbing the nerves in my lower back and rectum.
I continued in this cycle for another 4-5 months before I began really thinking about how exactly I was going to keep doing this. I needed Tramadol for relief in May, and became very dependent on that over the summer. Not only was that impacting my ability to work full-time, it was negatively impacting my mental health. My GP flagged my use of Tramadol and I was brought in for a review. I got given some antibiotics for the stump and some steroids to calm down the irritated and inflamed area. A week later, I saw my GP and I wept with the pain I was in, so I was sent to A&E. They added into some more suppositories to my IBD medications as well as Mebeverine to help with my intestinal spasms.
I requested a call back from the IBD nursing team – I was at my wit’s end. I was going to have to push and fight for a surgical referral. Consultants I saw in A&E referred me to Pain Management which made me relieved but enraged me afterwards when I explained this to friends – why throw more and more pain pills at a patient who clearly has been through all the options and would actively like to have elective surgery to solve this issue? I felt like I was being passed around, not getting one single answer, one straight forward explanation, no plan of how to go forward, of how to cope with this, and why no-one was taking the toll it was putting on my mental health seriously.
I had my ever so wonderful – albeit overworked – IBD nurse call and I took her through everything. Whilst I had been angry at being left so long without any real communication from my specialist team, that all disappeared as we got into the city gritty and formulated a plan.
- I would stop the two medications from last week with immediate effect. Their effectiveness – or lack there of – was redundant and why take a Colitis medication when I have NO COLON?
- I asked for a surgical consult and I got one. I’m always bit wary about asking for what I want because sometimes you have to jump through hoops. And whilst I’ve been spending all year doing the hoop jumping, I always like to ask – to not seen rude or pushy or arrogant. But she was sweet; “of course, you are the patient: your opinion, your view and your experience is valid” – saying that made me smile one of those smiles that you know will lead you into tears because you finally have validation after so long.
- We discussed all recent imaging for all ongoing issues – Liver MRI, small bowel MRI, abdomen US and pelvic US – and concluded that enough had been done and no further testing would be needed in the immediate future. She then asked, because I would most likely be prompted to have one, if I would feel comfortable having a Flexi sigmoidoscopy for a look into the stump. I last had this done in February and I paused; remembered the agony of the procedure and the aftermath and strongly said “no, I don’t think I could go through that again”, she then took some details as to why.
- She was writing to my GP to update them and to do a prescription for some steroid suppositories for the next couple of weeks. She commended my GP surgery on their support and compassion towards my difficult situation. I have really admired the last two GP’s I have seen and I know they are keeping an eye open for an update.
- So, I’ll go to the GP tomorrow and see if anything has been done with that. I have a GI appointment in just over two weeks, so then I can see where I am and if anything needs adjusting, it can be.
All of this has left me feeling much more positive about my situation. However, I am still dealing with the switch between Amatriptyline and Gabapentin which is taking a big toll on my sleep. I can either not get to sleep or I sleep too much – nothing in between. Some of this is down to being off work too so I hope it settled well before I return to my job.
And whilst I know all of this is just Step One of goodness knows how many, it feels like finally we have some movement forward, instead of feeling like I’m just turning and turning. I still need to know more about the specifics of my options when it comes to what and how a surgery will be done and I hope to have my anxiety more deeply settled or coping better with it, because I know this won’t be an easy one. But, it seems now, it is more that necessary – it is essential.
Until next time,
Do you have any questions or queries? Or just want to share your own experiences? You can leave me a reply here or leave comments via my social media accounts – on Twitter, find my blog page on Facebook and over on Instagram