Interview: Jennifer Mcgregor on Crohn’s Disease and Adaptive Clothing
Earlier this month, I was lucky enough to have the opportunity to interview 22-year-old Jennifer Mcgregor, an inspirational student who is carrying on the legacy of her late brother Duncan by building an adaptive fashion line for those with medical conditions which affect how they are able to wear clothing. Jennifer, originally from Clydebank, was diagnosed with Crohn’s disease in 2007 and hopes her clothing line will raise awareness and vital funds for the condition.
With this blog post, Jennifer and I hope to raise awareness for Crohn’s disease (a long-term condition that causes inflammation of the lining of the digestive system) and oesophageal cancer (an uncommon but serious type of cancer that affects the oesophagus).
SOPHIE: So, you run a clothing company called CrohnieClothing. How did the fashion line start? And how did you come up with the name "CrohnieClothing"?
JENNIFER: CrohnieClothing started out as a blog for people like myself with scars, burns and ostomies to be able to wear fashionable clothing while still wearing clothes which support them, and cover up whatever it is that they are uncomfortable with showing to the world.
The aim of the clothing line is to not only provide functional, fashionable clothing, but also to raise awareness for Crohn’s disease which I have, and talk about often on the blog.
I want to stop digestive issues from being a taboo subject as there are more and more people diagnosed everyday.
My aim is also to provide accessible male clothing for which all profits will go to a fund in memorial of my brother Duncan who helped me work on CrohnieClothing, but sadly died of oesophageal cancer in August this year after a year of fighting it.
The fund will be available for people who are needing to be diagnosed early with any kind of digestive issues and mainly in giving people struggling to eat or feeling their throat is blocked a fast pass endoscopy, as with oesophageal cancer early detection is key to having any chance of survival.
S: How did the project initially start? And what has motivated you to take CrohnieClothing to new heights?
J: The project started in 2013 when I was given the task of creating a business idea which I could make a reality if I left college or university and didn’t have a job. I started thinking of ideas for the potential business and I realised how much I struggled with finding suitable clothes that supported my tummy. I needed trousers that were high-waist as I’m quite tall, so I often needed my mum to alter my clothes which was great for me, but what about people in my position who don’t have a seamstress mum? So, I thought the clothing line was only going to come about due to my Crohn’s, I decided it had to be pivotal in the naming of the company.
The motivation to take it to new heights is mine and my brothers determination this last year to make something positive come from our struggles as Duncan was diagnosed in August 2014 with cancer, and I was in the process of getting my ileostomy (stoma similar to a colostomy) surgery planned and we both were finding getting clothes so much harder as we were in more pain and discomfort in our own everyday clothing.
We always spoke about continuing the clothing line if something happened to either one of us, and after my surgery when I ended up with sepsis, I could easily have been the one not here instead of Duncan. And if that happened, we promised we’d continue while not only making clothes that help others, but also raising awareness in particular for Crohn’s and oesophageal cancer.
And if there are any profits from the menswear collection, they will go into the fund in his name for people who need the early detection of his type of cancer since it is becoming more and more common in younger people, mainly boys, and it is still treated as an old persons disease.
S: What are the biggest challenges of working on CrohnieClothing? And what are the biggest highlights?
J: The biggest challenges in working for CrohnieClothing are that there are so many days when I want to give up and just lie down to being unwell myself and sleep for weeks. It’s also hard to keep going through the grief of losing someone as close as I was to Duncan too, so it’s really just trying to not be swallowed up by the sadness when sometimes it feels like all I want to do.
But I know that this is our dream and that he’s not here to make it a reality, so I have to do it for both of us.
Some of the highlights were winning the Herald Scottish Digital Business Award in 2013 back when the project was just a blog and I was still in college. It was such an amazing feeling to be recognised for trying to help myself and others be more confident and comfortable.
To be able to share the award ceremony night with my family, even Duncan since this was less than a year before he was diagnosed, and the project was on in its infancy at the time. Another highlight was being featured in the local newspaper twice and hearing so much positive feedback from people about the idea.
I’ve also had amazing help from people through the GoFundMe page which has raised £1000 and allowed me to start sourcing materials, get some designs down on paper and pay for trademarking our idea. It’s also allowed me to buy materials to make LuckyCoin Bracelets and “Duncs” ribbons which will available online in the next few weeks. There are also “knitted hugs” in the making in the form of lovingly hand-made scarfs and blankets from members of our family.
I got the idea from Duncan. He left me a memory box which has a blanket inside with a note saying that if I’m ever sad, I should wrap the blanket around me and it’ll be like a hug from him.
Without the generosity of family and friends we wouldn’t be well on our way to selling these and hopefully making some more money to help fund the first run of clothes.
S: How did Duncan get involved in CrohnieClothing? Can you tell me a bit more about him?
J: Duncan was my 34-year-old brother who had oesophageal cancer and sadly passed away in August. He was my rock when I was unwell for the last 9 years, and he made sure that I was always taken care of, even after he got sick too.
In Duncan’s case, he had been suffering from some serious symptoms of his primary tumour in his oesophagus since 2013 when he felt like there was something in his throat and he struggled to eat meat. Looking back now, these things seem very obvious signs but we trusted our doctors to get him sorted. They didn’t do an endoscopy at that point which could have potentially saved his life and he could still be with us.
However, due to his age and fitness alongside being a non-smoker, the doctors didn’t think cancer was on their radar. Even when he asked for an endoscopy in 2014, they put it off to the point where he couldn’t eat and had lost two stone in weight while being at the GP regularly telling them something wasn’t right. But Duncan being Duncan, he didn’t want to cause a fuss and he let it go.
Finally in July 2014, he went to an out of hours doctor and the steps were taken towards diagnosis with an ultrasound, endoscopy and lots of other tests ordered for the same week. That was when we found out Duncan had cancer and that it was serious. He started chemo in the September, and he lost more weight and was getting really sore while wearing his normal clothes.
Jennifer and her brother Duncan.
He also had to carry around a chemo pump with him every day which pumped chemo and other meds into his body through a PICC line which he was very self-conscious about. This led to us talking about how good it would be to have pockets in jeans, joggers and pj’s which would have fitted his pump. He also wanted very stretchy tops that could stretch over his arm and not be painful or risk pulling out the line from his vein which happened on a few occasions late last year and left him without chemo for a few days at a time, not helping his situation.
From then on, we were both off with being unwell. I had to leave my job and he had to leave his too which left us lots of time to talk about clothes and how difficult we were finding it to wear our normal clothing, especially with us both having major surgeries coming up and knowing it would just get harder.
That’s when Duncan decided he wanted to join the CrohnieClothing project and design menswear. Once he was better, we decided we would both get it properly started. However, Duncan didn’t get that chance as in May this year, he went for the surgery to remove his tumour and we found that his cancer had spread to his liver and lungs too. We realised his condition was terminal and he don’t have long at all.
Through all of this, Duncan had been so brave and only ever wanted to make sure everyone else was okay. He was even determined to get married to his now wife and my amazing sister-in-law Caroline who made him happier than I ever thought possible and gave him a reason to smile even when he was in such a grim place. He even told me to continue with this and make sure people like us are not only able to feel more normal, but that we also have a voice and helped others get an early diagnosis because with any kind of digestive disease, early diagnosis is crucial.
S: What do you hope to achieve with CrohnieClothing in the future?
J: In the future, I would love CrohnieClothing to be selling to people all over the world, whether they have something they want to hide or not. I believe that there is such a gap in the market for clothes like this and
I think there needs to be more models on the catwalk with scars, burns, ostomies and stretch marks – anything else that challenges the idea that to be a model, you have to be societies idea of perfect. It’s wrong because everyone is perfect and their differences only make them more beautiful in my opinion. My ridiculously crazy idea is that we have some kind of catwalk show where all the models show us that beauty and fashion are not ‘one size fits all’ and that we all have differences, be it medical or otherwise.
I’d also love to help even just one person get diagnosed early with oesophageal cancer and help them get on their first steps to recovery; for someone to get the chances that Duncan didn’t have.
S: Does your degree relate to CrohnieClothing? If so, how does it help you with the business?
J: My degree does relate to running CrohnieClothing as I know just now that I am always learning how to run more and more of the business. I’m taking an entrepreneurship class this year which I’m hoping will help me learn how to get CrohnieClothing off the ground and help with funding. My business law class is helping me learn how to make sure everything I do through CrohnieClothing is legal and done in the correct way and marketing is helping me find where we fit in the world of products available as we are in the middle ground between the health sector and the fashion sector.
Alongside the other classes I’m taking, I hope to leave university with my degree and be a far more rounded business owner and director.
S: I saw on your blog that you want to raise awareness of Crohn's disease. What would you say to people who don't know much about the condition?
J: I’d say to people who don’t know much about Crohn’s disease that, first of all, it isn’t like IBS. IBD, which is the umbrella under which Crohn’s comes under, is an autoimmune disease which can affect you basically in any way from head to toe and not just mean I have to go to the toilet a lot. I’ve had loads of symptoms from: losing most of my hair as I don’t absorb nutrients well; abscesses that have popped up from my chest and my thighs down to my shins due to the Crohn’s manifesting in my skin; very weak crumbly bones and joints due to long-term use of corticosteroids (steroids) which made me gain a lot of weight on and off over the years; and now my large intestines being so scarred due to inflammation and ulcers that I had to have it removed and be given an ileosomy (similar to a colostomy).
I’d say if anyone had the symptoms of very painful tummy cramps, having to run to the bathroom, blood in their stool, lethargy or feeling or being sick often to definitely go get checked for IBD. As I’ve said before, early diagnosis is crucial and if I didn’t shrug off my symptoms for as long as I did, I may have held on to my large intestines longer than I did.
Also I’d like to add that not everyone with Crohn’s or IBD gets an ileostomy or colostomy, it’s more people like myself that don’t respond to the treatments.
S: Why is CrohnieClothing so important to you? What makes it so different from other clothing companies?
J: CrohnieClothing is so important to me because it’s my, and Duncan’s, legacy. It’s something positive that can come out of the biggest challenges in our lives and especially with having my ileosomy and wearing a bag for life, I don’t want it to be such a taboo thing.
I also don’t want other people being in pain just wearing clothes because it can be absolute agony having, for example, a t-shirt being stuck to the sticky part of my bag and ripping it off with just moving in bed and waking up covered in blood and feeling really sore.
There is also a gap in the market where people do not have easily accessible, affordable clothes that will cover their insecurities as I cannot find anyone doing anything similar online, especially no one having a charitable aspect like the Lucky Coin menswear having the fund for early diagnosis of oesophageal cancer.
S: I read your blog post addressed to lecturers and tutors in regards to Crohn's disease. Do you think university staff should do more to be inclusive and accommodating to students with health conditions? How do you think lecturers and tutors, and indeed fellow students too, should behave around those with Crohn's and other similar conditions?
J: I think they should. I don’t believe a student should have to worry about going to university in case they get pointed at for going to the bathroom because, looking at me from the outside, you’d never guess I was unwell. Chances are in every lecture, there is at least one person who has some kind of medical issue they cannot change, feel uncomfortable about and will probably need to leave or use the bathroom.
I don’t think that lecturers should ever comment on people leaving the room at all because I get very embarrassed by it and have sat for two hours in a double lecture with a bag leak because I was too scared to be pointed out and someone might notice that I’ve got a wet patch on my jeans. It’s unfair and university staff especially should be more sensitive. (To read Jennifer’s full blog post, click here.)
S: What's next for CrohnieClothing? Do you have any exciting plans coming up in the future?
J: The next steps are trying to find investment as this project is taking over and becoming far bigger than myself alone and I need help with it! I’ve toyed with the idea of Dragons Den and other enterprise competitions, but for the next few months, I’ll be focussing on getting the business plan finalised, and starting to do some sponsored events to try to reach the £5000 goal I have set, and ensuring the Lucky Coin bracelets and ribbons go online as soon as possible, along with the knitted hugs!
I’m also working closely with City of Glasgow College to potentially rebrand CrohnieClothing and make up a logo for Lucky Coin for CrohnieClothing and get the website up and running so I can blog, sell and receive donations all in one place.
To get involved with the CrohnieClothing project, click the links below:
- CrohnieClothing blog.
- CrohnieClothing Facebook page.
- Lucky Coins bracelets are available to buy now!
For more blog posts and information on IBD (the umbrella term for Inflammatory Bowel Disease), visit Rebecca Crawford’s enlightening blog: Rebecca Crawford: Live in the Light and read her new blog post What I’ve Learned From Having An Incurable Illness.
More information can be found below:
A huge thank you to Jennifer for sharing her incredible story.
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