Bag for Life

Why many young people are choosing to keep their ostomy bags (including myself)…

So if you’re reading this post I presume you know what an ostomy is. Just in case you don’t, I’ll briefly explain. An ostomy is an artificial opening in an organ of the body. There are three main types of ostomy which are a colostomy (used to collect waste from the colon), ileostomy (used to collect waste from the small intestine) and urostomy (used to collect urine if the bladder is damaged). A bag or pouch is normally worn to collect the waste. Maybe an ostomy is something you associated with the elderly and you wouldn’t be alone. In fact, almost 7,000 in the UK and Ireland undergo ostomy surgery each year and a staggering percentage are under forty. Ostomies can be created for a number of reasons but the most common reason in under forties is probably Inflammatory Bowel Disease or IBD. The main two types of IBD are Crohn’s Disease or Ulcerative Colitis. These diseases attack the digestive system and in severe cases they may result in a colostomy or more commonly, an ileostomy. These operations may be either elective or emergency meaning the patient is not always aware they will wake up with a bag.

I myself, am the proud owner of an ileostomy. I know that that might sound strange and more like a sentence you would associate with a Chanel handbag or a luxury sports car but I am eternally grateful for my bag. In my case, my colon exploded (yes, I felt it happen and yes, it was agony) and I woke up with a new accessory on my abdomen!

I am lucky to have an unwavering support system at home in Ireland but I recently relocated to Toronto and it was strange not having that around me at all times. Another issue that arose was having to explain to a whole new network of people that I haven’t pooed or farted in over seven years! Some people didn’t bat and eyelid or had heard of ostomies already but there are always the few whose response is “Oh, you can get those reversed you know!” followed by the look of confusion or pity when you announce you chose not to. Usually these people know very little about the disease and can’t fathom why a young woman would choose to wear an ostomy bag. That being said, I have also had medical personnel suggest I should have a reversal due to my age which is majorly frustrating! Surely I’m too young to spend my life in intense pain rather than wearing a bag?

Of course I am aware that reversal is many people’s preference. I also understand why you might look at me and presume that this would be my preference. I’m young, I’m fashionable (in my humble opinion) and I have a penchant for skinny jeans that require a lot of wiggling to get into (even more wiggling since I moved to the land of beer and poutine). In a world of Kardashian-esque lashes, Instagram filters and bleached buttholes it may seem odd that many young people are choosing to forego reversal surgery. My goal in writing this piece is to shed some light on why this is!

Firstly, a reversal basically means removal of the ostomy. The word “reversal” has never sat well with me as I think it implies an unrealistic level of normality. You can not “reverse” removing someone’s colon! There will always be consequences from such a procedure. In my case, “reversal” would mean connecting my small intestine to my rectum which would also mean (you guessed it) risk of permanent diarrhea! As if I hadn’t had my fair share of that! The more common type of ileostomy reversal is probably an internal pouch created over two separate operations. Both types of reversal require downtime and diet changes and come with a risk of bile-salt malabsorption, urgency, anal leakage (if I ever start a punk band that’s going down as a potential name), accidents and of course, the usual surgical risks like adhesions/infections/sepsis. In IBD patients, there is also the fear that the disease will return at the connection site or attack the internal pouch.

My own personal reasons for rejecting reversal are as follows:

1. I do not want to put my life/career/traveling plans on hold again to recover from another surgery

2. I am a vegetarian Buddha-Bowl fanatic and insoluble fibre is rarely the friend of the reversed

3. I have had so much surgery including an abdominal reconstruction and I’m scared to compromise my already weakened core plus. So many previous surgeries mean my adhesion risk would be very high! Adhesions cause lots of pain and can lead to many other issues such as fertility trouble or urinary discomfort.

4. I like my bag! It gives me a level of control I never thought I’d have again (I used to crap myself on the absolute regular). I can sleep over at a friend’s without fear, do yoga, camp at music festivals, eat whatever I want and I’m currently medication free! The idea of sleeping in a tent in a field or doing the downward dog without my bag actually makes me shudder. There was a time when I genuinely could not leave my house for more than 5 minutes because I couldn’t be away from the toilet. At my sickest, I slept with a duvet and pillow on my bathroom floor. I wasn’t living at all, I was merely existing. It felt as though I lived to shit and nothing more!!

5. This disease destroyed my confidence in my appearance. I lost all my hair, had to deal with severe scarring and stretchmarks EVERYWHERE (literally) and frequent weight fluctuation due to medications. I had muscle wastage and dull eyes and teeth that never felt or looked clean no matter how much I brushed them. My skin was pale and waxy and mottled. I’m finally at a place where I like my appearance and my weight is stable. My hair has long grown back and my scars have faded somewhat. For me, weight loss is inevitable with further surgery. I’m 5’10 with a pretty speedy metabolism so I tend to look like Iggy-Pop when I drop below a certain weight. Not exactly a confidence booster!

6. As our wise friends at Hogwarts would say “Draco Dormiens Nunquam Titillandus” or “Never Tickle a Sleeping Dragon”. For me, my IBD is the sleeping dragon! It’s been relatively under-control since my ostomy creation and I always had this weird vision of my intestines chilling peacefully in my body and then being all riled up by another surgery (sort of like that Sarlacc Pit scene from Return of the Jedi). It’s a very difficult feeling to explain to anyone who doesn’t have an incurable illness. Every day that I wake up relatively pain-free feels like a blessing and almost like I’ve cheated the dragon for another day! I’m just happy to have the level of health that I do and if this means wearing a bag, so be it.

7. I still have no definite diagnosis! After 7.5 years I still do not know whether I have Crohn’s or Ulcerative Colitis. The success rate of reversal is lower for Crohn’s patients so not knowing which form of IBD I have has definitely influenced my decisions. It is very difficult to predict recovery time and likelihood of a positive outcome without knowing which condition you are dealing with.

To conclude, I am NOT trying to scare anyone off a reversal and there are so many success stories. I 100% understand why many jump at the chance to reverse their ostomy and I support you all the way. I am simply outlining that it’s a very personal choice and that a reversal doesn’t mean you just remove your bag and go back to normality instantly. It is a lifestyle change that takes patience both physically and mentally and I’ve chosen to keep my current lifestyle which includes plenty of strong coffee, whiskey, Indian takeaway and a myriad of other things that a reversed bowel ain’t gonna like! For me, the potential risks and recovery time outweigh the benefits. For many, this is not the case and you should always gravitate to what feels right in your gut, although I know trusting your guts can be difficult when they’re defective!! ;) My belly won’t win any prizes at the Village Fair but I’m healthy and happy and really, what more can we ask for?

It’s also important to mention that not everyone has the option of a reversal. Depending on the health of the individual or the procedure they’ve had, it’s not always advisable or even possible. Having a bag can be isolating, embarrassing and scary but it can also be a lease of life and a blessing.

Thanks to all of the beautiful folk below for sharing their pictures and quotes about the bag life! It’s you guys who contribute to awareness and help others accept their ostomies with pride, young and old!

Of note, I would like to wish Jessica Kitchener all the luck in the world as she has recently opted for a reversal. Since she raised so much awareness with her bag I wanted to feature her anyway. Good luck Jessica! :)

Molly Carroll (author and scruffbag who didn’t wipe the mirror). Aged 24. Emergency ileostomy at 17.
Danielle McCormick, 23. Ileostomy created aged 20 due to a rare birth defect. Here she is modelling for https://www.jasminestaceycollection.co/ and looking incredible!

“My bag has given me a whole new confidence I never thought I had!”. — Danielle

Sandra Farmer, 32. Ileostomy aged 28 due to UC.

“They said ‘it’s the bag or you’ll die’”. “Without my bag I would have missed out on my children growing up”. — Sandra

Summer Valetine, aged 23. Ileostomy created aged 20 due to aggressive UC. This was Summer’s second ileostomy!
Bradley Fellows, aged 23. Ileostomy at 20 due to Crohn’s Disease.
Zoe Jutsum, aged 26. Zoe previously had a reversal at 17 and later returned to the bag life aged 19 due to Crohn’s.
Caz Caines, aged 28. Emergency ileostomy aged 21 due to bowel perforation. This was caused by severe IBD (no definite diagnosis).

“I’m genuinely just thankful for it saving my life. I’ve never felt better, more posi and confident x” — Caz

Jane Beaumont, 23. Ileostomy created at 22 for IBD.

“….the hardest and best thing that’s ever happened to me. I got my life back”. — Jane

Gemma Scott, 24. Ileostomy created at 24 due to Crohn’s.
Leah Couchman, 21. Ileostomy created at 20 due to UC.
Daniel Grace Kelly, 27. Ileosotmy aged 20 due to severe Crohn’s.
Jody Fox, aged 22. Ileostomy at 20 due to aggressive UC.

“Having a bag isn’t a cure but a life-saving escape!”. — Jody

Jessica Kitchener, aged 21. Currently under-going a reversal and we send her all the good vibes ❤
Lisa Cummins, aged 30. Ileostomy at 28 for complications of IBD.
Nick Russell, aged 30. Surgery aged 23 for IBD.

“Best thing I ever did and I got my life back because of it.” — Nick