Each letter of Christmas for stoma life

C – Clothes

H – Hiking

R – Recognising my limits

I – Iron

S – Second Chances

T – Thirst

M – Mixed emotions

A – Appetite

S – Survival

**Trigger warning – mention of food, diet and weight**

C – Clothes

I have always struggled with my weight. However, my weight has definitely been easier to manage and more stable since I got my ileostomy in 2011 and got several months down the line in my recovery. Because I’ve been able to maintain this, I have so many choices when it comes to clothes. I love playing with outfits and waking upland being able to think “what do I want to wear today?” and feeling good a lot of days in what I wear. I use stoma supportwear under my clothes most days or Vanilla Blush to give me that boost in confidence all day.

H – Hiking

My stoma has enabled me to exercise. I do a lot of walking, even more since we got our dog. We went on holiday to the Lake District in November and walked about 30 miles over 7 days. This was quite a challenge for me some days with my fatigue and I definitely had to acknowledge my limits vs when I could push myself, but to be able to enjoy the outdoors is something I will never take for granted, which was made possible by my stoma.

R – Recognising my limits

I have had so many doors opened since getting my stoma and have been able to achieve things and go places that I could only have dreamed of pre-surgery, including going to New York with my brother in 2015. I have learnt, admittedly sometimes very slowly and too late, about recognising my own limits when it comes to listening to my body. The main thing I struggle with is fatigue and managing my energy levels. I have to schedule time to rest/self care time into my calendar and sometimes say “no” to things because my body is giving me warning signs that it can’t keep things up at an intense level. I’m also able to push my limits and I try to do this where I can, but especially within the last few years, I’ve realised the importance of looking after myself and knowing when to take time out. Fatigue and my mental health go hand in hand and my mental health can take a huge dive when I’m more tired.

I – Iron

Because I don’t have my colon and I have Crohn’s Disease, I find it very hard to keep my iron levels consistent. I have had anaemia on and off for at least 15 years and have had a few iron infusions due to not being able to tolerate iron rich foods in my diet because of my stoma or tolerate iron tablets. I have thankfully been able to take iron liquid medication and now my iron levels are more constant, I take an iron supplement daily. The usual warning signs of me being anaemic are being exhausted despite resting more, cracked sides of my mouth and struggling to get warm and stay warm. I also get palpitations and feel weak when it’s creeping back in.

S – Second Chances

I got my second chance at life thanks to my stoma. The more I recovered from surgery, the more I felt like my stoma had given me freedom and a new lease of life.

T – Thirst

Hydration is so important with an ileostomy. I feel thirsty more often but I’ve also found that some drinks can actually make me feel dehydrated, such as water by itself or smoothies. I always try to add squash to my drinks or drink electrolyte rich drinks when I’m more active or have watery stoma output. I also cut caffeine out of my diet incidentally when I was taken into hospital in October and didn’t drink coffee for several days. I noticed I felt less edgy with my anxiety and that my energy was less up and down, and I wasn’t suffering from as drastic energy crashes. It’s been two months now and cutting caffeine out has been one of the best decisions I’ve ever made when it comes to handling my mental health and energy.

M – Mixed emotions

It’s okay and perfectly understandable to have bad days with a stoma. I doubt anyone would have a stoma in an ideal world and would rather just have a standard, functioning bowel but obviously, for some of us, it’s literally have a stoma or die. This was the case for me and I told myself I was going to embrace it, but I got my very dark days early post-surgery when I was trying to come off my pain medication etc and anti-sickness and I still do have days where having a stoma just doesn’t sit right with me. Fortunately, those days are few and far between. For me, there can be the odd day where it’s more of a minor nuisance, but usually I can just see past it. I have had days where I’ve cried and wished my stoma away, and it’s so important to let yourself grieve when this happens. Know that I believe it will get better. My stoma I would say helps me 95% of the time and only hinders me 5% of the time.

A – Appetite

For pretty much as far back as I can remember pre-surgery, I’ve had a really negative relationship with food. For me, it meant agony, nausea and just left me feeling absolutely awful before I even tasted it. The sight or even the smell of food was enough to turn my stomach. Since a few months post surgery, once I gradually got used to eating food again, I’ve had such a good relationship with food, mainly being able to enjoy a much wider variety of food to what I did without my stoma. There are things that I have to avoid, some because of the narrowing I have behind my stoma, such as high fibre foods, leafy and crunchy veg, fruit with skin, beans, nuts and pulses. It’s important to remember that when it comes to food, amongst so many other aspects of stoma life, everyone is different.

S – Survival

My stoma saved my life. Surgeons said if it had been hours later, I wouldn’t be here today. Surgery was long and complex and was very touch and go. I lost a lot of blood so required blood transfusions and surgeons found a large, benign tumour, on my large intestine. Because of this and the severity of my Crohn’s Disease, my ileostomy is permanent.

May I take this opportunity to wish you all a lovely festive season & all the best for 2022. If you’re in dire need of hugs, I’m sending so many to you.

Until next year,

Amy x

@ibdwarriorprincess