I read something recently that said to speak from the scar not the wound. I am not sure I am quite in the scar phase yet, but the wound isn’t gaping so I want to share my personal account of how it feels to live with IBD as it is IBD awareness week.

I was first diagnosed 21 years ago and was in remission, med free for 15 years which I am eternally grateful for. I truly believe in the body’s ability to heal itself when we give it the right conditions. The challenge is giving it these conditions, especially in the dysregulated world we are currently living and for me personally, managing stress is challenging as I also have hypermobile Ehlers Danlos Syndrome (hEDS) which was diagnosed after my first daughter was born. hEDS is a genetic disorder affecting the body's connective tissues. This results in overly flexible joints, stretchy skin, and often digestive issues. So lucky me – it is a double whammy! An EDS body is more sensitive to stress through a complex interplay of biological factors (neurological differences, autonomic nervous system dysfunction) and psychological factors (chronic pain, physical limitations, and negative experiences with healthcare). I am now 44 with two children, 5 & 9 (one of which is also diagnosed hEDS). I am perimenopausal and life is much harder to manage than when I was 23.

Since August this year, I have been acutely unwell with a UC flare, which began with a perforated bowel identified on a CT scan with the first hospitalization. It healed itself with the hospital rest, prayer and fasting but I ended up back in hospital only a few weeks ago and I am still in the throes of trying to get out of this flare.

I have tried biologic treatment this time, which in many ways I found hard to surrender to with my beliefs around the body wanting to be well, but as mentioned above, I am not in a strong enough vessel to enable me to solely do things that worked in the past so my choices are more limited this time and sometimes we need the bandaid whilst the wounds heal and we figure out the next steps. This is how I am viewing the Biologics. I have intentionally not read too much about them as side effects can put you off. I have had two loading treatments and due another one on 23rd December. I am praying for a smooth ride without any additional challenges with this path.

Alongside of this I have been having a lot of acupuncture and I see the most significant changes after this treatment. Acupuncture can be good for IBD, as studies suggest it may help improve symptoms like abdominal pain, diarrhoea, and inflammation and this has certainly been my experience. It also works by potentially regulating gut dysbiosis, improving intestinal barrier function, and reducing hypersensitivity. I attribute much of the success of this treatment for me because it down regulated my nervous system and enables me to relax; something that is difficult for an EDS body and also someone who has experienced a lot of trauma.

So, what is it like living with IBD? Prior to summer I would have said it was OK as I was able to self-manage up until then but this recent flare has been incredibly humbling and horrendous is the truthful answer when people go into flares. I had just been fortunate until now.

IBD pain isn’t just a stomach ache, which many people unhelpfully have tried to relate to me saying ‘oh I have IBS too’. IBS is a very different condition. Albeit I know can be a challenge, it is not like IBD. IBD, as I have been reminded these past 3 months, is a deep, cramping, sometimes sharp pain that hits without warning. It can radiate through my body, at worst times it has made me vomit with pain, and it causes the most horrendous fatigue. Due to high volumes of blood loss my iron dropped very low. 2 x iron infusions helped somewhat with my energy levels but then caused a phosphorus deficiency so that needed replacing whilst I was back in the hospital. My potassium levels were low and BP was dropping further adding to the bone deep fatigue. Walking up the stairs at the moment can be challenging on most days. My entire life has been turned upside down.

Because the disease is internal, people will often say, “But you don’t look sick,” which can be so isolating. The invisibility of IBD made it harder for me to ask for help or to explain why I need rest. Until now and it has been forced on me. I am eternally grateful for family who have been incredibly understanding and supportive. I do not know how people without supportive family get through and my heart truly goes out to anyone struggling with this disease in a flimsier vessel than me.

Food became incredibly challenging. While IBD isn’t caused by diet, flare-ups can make you feel terrified to eat the wrong thing. Initially I lived off fish, rice, plain potatoes (no skin) and soup. I could not tolerate anything else and even this still triggered cramps initially that since having my children, I now explain to people is like labour pains. It is so debilitating and exhausting and a battle between wanting to eat because you’re hungry but not wanting the pain that immediately followed. As a result I have lost 9kg (13% of my body weight) and I can see much of it is muscle mass which in the perimenopause isn’t a good place to be, so some days I can see the mountain in front of me and it can feel overwhelming. But as my husband helpfully reminds me; ‘one day at a time’.

Currently my day to day is varied. There are some small improvements but nowhere near what I would have hoped for. I am dealing with anxiety around going out anywhere in case I have an attack of pain or sores urgent need for a bathroom and there isn’t one close by.

I attempted to go back to work a few times but I was too sick to be there. This time around I developed fissures which I can only describe as an exquisite pain. I have never felt anything like it and many describe it as a sensation like passing glass and I would agree this is how it was for me. Sadly for people with IBD, the fissures occur due to chronic inflammation that weakens and damages the anal lining, making it prone to tearing from bowel movements. In addition to chronic inflammation, other contributing factors include frequent or loose stools, constipation, and the general stress on the anal tissues from frequent bowel movements. The inflammation slows healing, leading to fissures that can be more persistent and painful than typical fissures and I am only just starting to feel tolerable pain there in the past week or so.

The social isolation of a bad flare up carries a mental and emotional weight. The embarrassment about symptoms, and frustration at the lack of control is challenging, but it is teaching me a lot about surrendering to life as it is, as opposed to how I would like it to be.

Managing my symptoms at the moment means regular doctor visits, blood work, medications, infusions, and monitoring. It’s a partnership with the healthcare team and a commitment to listening to my body. I am grieving not understanding this flare as I have previous milder flares. I have always been able to manage but now I am perimenopausal and this is playing a part as symptoms are worse the week leading up to my period. I will be doing private hormone tests but I have to be off the steroids again to get a true reading which is frustrating as it is delaying potentially getting better.

Unfortunately, the NHS have not been supportive of this part of the journey and it is costing me privately. But the NHS in general isolate symptoms and take a very reductionist approach to treatment which doesn’t sit with my naturopathic training and understanding and personal experience of health. Treatment isn’t just taking pills. I have never bought into that belief. It’s pacing yourself, learning triggers, and often adjusting your lifestyle. Sometimes drastically which not everyone will be willing or able to do.

I have been unable to work for the majority of the past 3 months and being self employed this has been really tough for me and my family.

But to end this on a positive note, I honestly believe that those of us who live with chronic health conditions are some of the most resilient people. I am learning more grace and compassion for myself. To be able to keep going through discomfort but also leaning into the willingness to surrender when my body demands it.

I have the ability to hold so much compassion for others, and as a holistic therapist I have no doubt it is my own challenges that has given me such a heart for people and for healing and I wouldn’t change this. My hope is that I get through this challenge stronger and healthier so that I can continue to help others, but this time also maintaining good health for myself.

For anyone living with IBD, I see you. I understand your challenges and you are not alone. Remember your symptoms are not your body fighting or working against you, but signalling to you that it needs attention. Whether that’s from a nutritional perspective, mental/emotional one or environmental will be unique to each individual. But I still believe in the ability to heal without drugs, when we are willing to do the work to get to the root cause of dis-ease.

- blog written by Kelly Augustin, ARCH-registered Colon Hydrotherapist

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