Hello! Welcome back! I’ve returned!
It might have been only a short and temporary pause in my writing about my life with this wonderful chronic illness that is IBD but it feels like forever. It has not been, it’s just been a storm of shite. Both good and bad.
Last time I was writing, I had just had my final loading dose of Vedolizumab. Happy to report that the post infusion ill effects passed within 48 hours and I am currently bowel related symptom free since. I am hopeful that this medication really is doing so good inside; my blood work and general ‘feeling of wellness’ are a good indicator that this is the case.
The major facial abscess faded within 7 days of my infusion, leading me to believe it was due to my body being defunked after being hit with so much IBD flare at once. But then more of the buggers appeared which didn’t fill me with hope. Maybe this was my PCOS rearing its ugly head again, I thought, so this was discussed with my GYN consultant last week. He dismissed it as PCOS related so the cause was still unknown. The outcome from his appointment was the following:
- needing to be on a suitable contraceptive to control my ‘obvious’ PCOS symptoms; these being my facial hair and lack of a menstrual cycle. I’m hoping to explain more about my PCOS in detail before the year is out, but it’s a difficult one with the lack of self-confidence I have surrounding it.
- Having another scan to check on the ovarian cyst they discovered in August. It was 3cm in diameter but at that point, would be left alone; but four months have passed and its likely to have grown. If it’s 5cm or larger, it needs treatment. I know that is drainage or removal; which is surgery. Excellent.
- I needed some bloods take to check a marker to make sure this wasn’t a tumour. And if it was one, it is benign. Cue my stress and anxiety levels going through the roof. Trying not to really consider if it isn’t, but one bridge at a time.
Next came seeing my colorectal surgeon. He performed my right hemicoloectomy 18 months ago and recommended my ostomy surgery too; all under my old hospital. So, back home I went, for my final follow-up. Not only was it him; but my IBD nurse was there, my SCN too and a medical student! Good to see that my case always brings more than just one person into the consulting room. Concerns going in to this appointment were a possible hernia forming above my stoma and the pain I’ve been having in my rectal stump. Outcomes:
- On examination, there is no feel of a hernia and my last scan showed no indication of one ‘breaking’ through. Also, no abscess or any feel of problems in the stump too.
- He did note my spotty face and suggested this could be an extra intestinal manifestation of my IBD. Whilst, yes my IBD flare up is now under control, that flare up have brought other things to the surface. He prescribed a acne medication to help control these but warned that it would take 6 weeks to begin to work and it could affect my liver, so blood testing would be needed before continuing this treatment into the recommended 3 months.
- He has discharged me with no need for surgery in the foreseeable future. I still need my panprocolectomy doing within the next 5-7 years but so far, he is not concerned. I can still live with my stump and he strongly advised to go, go and live you life!
That naturally leads me to my IBD ‘biological treatment review’ at P’boro City. It was rather wonderful actually; I went in with only one goal in mind: getting my next Vedolizumab infusion date. I wasn’t expecting to see or sit down with my current IBD nurse and discuss how things are going – of which lately, has been very good – and to getting settled into this new system. It is always fascinating when I attend a new hospital for a new specialty but this, being my primary health issue, it is important too. How things work here is completely different to what I am used to. This should be strange to me, but I quite like it. Learning and knowing about how the system works is part of being a patient. And when someone takes the time to explain how it works and what is to be expected going forward; you understand how you fit in.
Outcomes from this:
- Next infusion date is set: exactly eight weeks since my last one, now due on December 20th. I’m right on schedule for once! With my main IBD symptoms – abdominal pain, cramping and nausea all but gone – the consensus is that Vedolizumab is doing good work. Which makes for a very happy Louise.
- I was actually asked if I thought this was working. I was asked to give my opinion and that has considerable weight. This is how things should be done. I wasn’t shocked I was asked, I was just humbled to be asked and it be respected and not dismissed.
- Starting my acne medication will help; agreeing that we try this and see if it works. She highlighted that everyone reacts differently to Vedolizumab and some times skin issues come up from them. It’s not caused by the medication, it is brought out by it. And it doesn’t mean its failing, it could very well mean it’s doing its job. Plan is to trial this new acne medication and if there isn’t improvement, we go to Dermatology for a referral and another treatment plan. There is no way the Vedo will be halted.
- Reassurance that IBD is manageable and treatable. Take away from today was this: every IBD patient is different, which means not every one reacts or responds in a set or similar way. What works for one, doesn’t always work for another. This can be sometimes construed as the IBD team ‘not knowing’ or simply asking patients to ‘trial and error’ things because it is just that; trying. I look at that with optimism, not pessimism. I’ve rolled the dice on plenty of medications in the past. I’ve had reacts and side effects, all in the name of getting my own disease under control. I know what is acceptable to me and my body and what isn’t. I call them when it isn’t; that is the other take away here. Asking for help, being encouraged to use them.
- I left knowing, whilst I might not have a face to face appointment for a while, this was good. I can always get them bleeped at my infusions, I can call the help line, I can have a phone consultation and if things start to turn bad, I can come in. But the encouragement is to go and live your life with your illness. Don’t let these appointments and medications worry or stop you from living. And that, that was a very positive end to an appointment.
Later that week, I had one at my GP to see the Family Planning nurse to assess my contraceptive needs; a referral from the GYN appointment. Given my previous history and my now different digestive system set up and absorption issues, I was leaning toward the patch once more. But of course, nothing goes to plan:
- Got prescribed Yasmin – the contraceptive pill – as it most commonly used with PCOS and has the least amount of side effects. It will not only control and regulate my cycle but also help with my other symptoms too, added bonus. I am likely to see effects after three weeks once my cycle begins again.
- Got given a ‘lecture ‘ on my BMI but hey, I have been on high dose steroids for two months to control my IBD prior to my medication. Even so, more activity is needed so I can shift ‘at least a couple of kg’ by the end of the year.
- Follow up due on 12 weeks time for more of the pill, if it is working. I spent almost 30 mins in a 10 min appointment slot getting it all correct and proper. Learning that my GP surgery do actually want to take time and care towards me, thanks to being a complex – not complicated! – case. I suppose so, how many late 20’s, PCOS, IBD stoma patients could there be?!
Finally came my triage appointment for mental health assessment. This happened whilst I was back at home, which ironically had made my mental health worse. We discussed my IBD, how it’s been the last couple of years – in summary, very up and very down which hasn’t really been processed; more of just wading through it all, one thing after another – and how my life beyond my health is. Conclusion: I need some counselling, but which type is yet to be determined. Definitely CBT but also something else, which hasn’t been sorted as of yet with a commencing date. I am finding that when things are going wrong my mental health seems settled, like my defunked body is now a new and accepted ‘normal’. But when things are smooth and worry free, I ironically worry which leads me down my own personal rabbit hole into anxiety and depression. So, I know I have things I need to work on / fix but I am currently without a start date which is sort of helping; I’m trying to not focus on it too much too.
So, in summary; things have been problematic but are under control. I seem to cope better when there is something simmering under the surface; not when it is calm or in a full-blown war. Weird huh?
Until next time,