As part of MS Awareness Week 2024, we are taking a look at some of the more 'taboo' symptoms of MS and encouraging people to speak up when they are struggling, to ensure they get the help and support they need. In this blog Carla talks candidly about her chronic bowel problems which have had a massive impact on her life over recent years.
Why, oh why, is there such a huge stigma about the bowel in the MS community? We literally talk about everything else.
I was keen to understand how many people diagnosed with MS, experience bowel issues. Research led me to a figure bouncing between 50-70%, but I’m convinced this is 100% under-reported. I would love to say this is a British stiff upper lip thing but, in my experience, it really isn’t.
Since ‘coming out’ about my bowel issues on Instagram, I’ve received multiple messages from people with similar issues, but on different journeys: folk for whom constipation or incontinence may mean small, meaningful changes, those at the start of their journey, scared and unsure where to turn, through to those happily living post-surgery. We’re a mixed bag, but we do exist.
I’m aware not everyone has my cahunas in talking openly about this, but I’m determined that nobody else feel the isolation I did. I will preface my story by saying a) this is NOT medical advice, and b) the extent to what I personally go through probably happens to a comparable minority. But we’re are a neglected bunch, and I need to shout, “Don’t forget about us!”
My MS is officially an adult (based on my first relapse, my diagnosis took years to secure). I experienced Lhermitte’s sign in my late teens and I am *cough* years old now. However, it was only seven years ago that my bowel issues started. In Summer 2017, I was on the floor of A&E in excruciating pain. I was given morphine and anti-sickness drugs, certain I was suffering from kidney stones. The scan, however, showed my bowel was full. I was impacted; a potential medical emergency. The inflammation reduced, but I‘ve had several close calls since.
By late 2017, I was ill with constipation, overflow and nausea, unnerving fatigue, issues with balance, bloating that made me appear heavily pregnant and in extraordinary pain. I hadn’t yet made the connection between MS and the bowel. It had never been discussed in neuro appointments, and if it were mentioned on MS websites, bowel symptoms were often demoted in favour of those of the bladder, which I assume meant others were too embarrassed to write about it, which was frustrating.
I explored a wide range of options which would normally ease bowel symptoms for people with MS. I tried losing over 100lbs, increasing exercise and fibre with fresh veg and water intake (approx. 2.5-3 litres a day, due to high dose laxatives), FODMAP, cooking from scratch, trying a crazy number of meds. But nothing improved my symptoms long-term.
Fortunately, work’s private medical insurance allowed me a barium swallow, endoscopy and colonoscopy, fructose, pylori, lactose and bacterial overgrowth breath tests, and a Sitz Marker test. In all but the latter, nothing was found.
A Sitz Marker Study measures how quickly swallowed markers move through your bowel over seven days. X-rays showed the problem was all through my bowel, and I was diagnosed with slow transit constipation (STC), due to a neurogenic bowel. STC means my gut muscles are sluggish and don’t work properly due to nerve damage around my colon. My gut can’t move content through the bowel effectively, hence my symptoms.
By 2018, I was more informed, yet GPs regularly fobbed me off with suggestions of IBS (irritable bowel syndrome). I consider myself a very good self-advocate, but when you are in pain it’s difficult to articulate yourself and easy to be de-railed. But by the July, I was in pain every day. At work, I was doubling over in meetings and regularly working from home. I went to the GP for the ninth time, and broke down due to the utter hopelessness of it all. This compassionate GP supervised a medication schedule, and personally liaised with my MS nurse to arrange receipt of the Peristeen system, a catheter and water-based irrigation system, which I received in the October. By then, I had left my beloved job and my mental health was declining. Being in that much pain over a long period of time really takes its toll, not knowing how to help yourself, with not even a foggy light at the end of the tunnel.
In January 2019, my neurologist referred me to a neuro-gastroenterologist. I cannot tell you the relief I felt that a professional understood what was happening to me, and didn’t gaslight me. I skipped into the sunlight outside, feeling vindicated and validated.
So many times I’d tried to raise my issues with both the MS community and healthcare professionals only to get the same gastro-related tropes: eat more fibre, flaxseed, drink prune juice/coffee/water, lose weight, do yoga. Finding the right amount of fibre is a delicate balance and a daily battle. My then neuro-gastroenterologist winced when I told him about the Fybogel one GP gave me. Dietary advice absolutely works for those with less complicated gastrointestinal issues. Sadly, I am well past this point, though very much wish I weren’t.
Fast-forward to 2024 and my symptoms have worsened, impacting my day-to-day. On bad days, my balance is affected so I use walking sticks to compensate. Mostly, I am in tolerable pain (you know, the kind to which you become accustomed). Some days, not so much. Why not take pain meds, you say? Well, oral meds are a huge no-no because a side effect is (yes, you’ve guessed it!) constipation, so I’m constantly weighing up between two lesser evils.
I’m in a different role, now, working from home, however I’ve become confined here. This is tough to say aloud as an extrovert. Anyone who knows me knows this isn’t my natural state. Occasionally, I leave the house for, say, medical appointments. Sometimes, I desperately need to feel the rain or sun on my skin, or to walk in nature. But to do so incurs a penalty: I must withhold my meds, plan around facilities, bring extra clothes and take loperamide with me.
Over the last year, I still regularly see bowel specialists as well as using the Peristeen and, daily, multiple laxatives, a prokinetic and medical probiotic. I’ve introduced abdominal massage and, when things are really bad, revert to a liquid diet. Pending further testing (no one wants to do something irreversible if it may not work), a stoma is likely and I’m becoming used to the idea. It’s all about risk versus reward.
If you’re struggling, know there are several options. For most of us, these are simple, supervised methods. Your neurologist or MS nurse can refer you to a bowel or incontinence specialist to treat the symptoms and, depending on the issue, kickstart the process for bowel aids. Your GP can refer you for testing to find the cause. Personally, I think both routes are equally important.
Bowel issues won’t go away if you bury your head in the sand, but will most likely seep into other areas of your life. Remember: not everything is MS-related, and you may need to summon more self-advocacy than you ever have before - do not be fobbed off!
The way I choose to look at the bowel taboo is this: if discussing or reading about bowel issues makes you feel uncomfortable, ask yourself why. Surely it is better we are more transparent with each other, and speak in the same way we would do about relapses, mobility, pain, and other serious things that impact our lives? If we don’t, we are complicit in perpetuating this stigma, and we’re saying it’s okay that people face aspects of MS alone. I’m certain anyone reading this will agree that no one, absolutely no one, should feel this way.
Carla is a Career Coach and MS blogger. Follow Carla on Instagram @CarlaKCoach, or visit her honest blog about living, working and parenting with MS mymsbullyandme.blogspot.com.
