Men's Health Week: Living with IBD and/or a stoma

Men's Health Week has nearly come to an end (14th - 20th June).

Obviously from my blog posts here with Comfizz, you read a lot about how life is for me as a female with IBD and a stoma. It's widely known that women often seem to be a lot more forthcoming in talking our their struggles & experiences in general, let alone with something so personal, so it's been really nice to hear from Neil, Andy, Lee, Sean & Keith about their experiences. Thank you so much guys for being so open & sharing your stories & tips.

Without further a do, let's get started!

 

I'm Andy Smith, a 40 year old husband, dad of 4 children (including one in heaven), Presbyterian Church (U.S.A.) minister, ultrarunner (which is to say, I run distances longer than the standard 26.2mi marathon-- 50km, 50mi, 100km, 100 mi, multi-day runs, &c.), and ostomate from Wayne, NJ (USA).

Andy's story

I was diagnosed with ulcerative colitis in 2001, and for 20 years, lived with the illness not managed despite being on every medication available, including biologics and long bouts on high doses of prednisone. Finally, maybe inevitably, in February of 2021 the pathology report from a colonoscopy showed areas of dysplasia that were becoming cancerous. In consultation with the gastroenterologist, Dr. Peter Legnani, and surgeon, Dr. Alexander Greenstein, from Mt. Sinai Hospital in New York, I made the decision to have a complete proctocolectomy and ileostomy. My surgery was just done on March 5, 2021, so I'm extremely new to having an ostomy. Still, after only three months, I've been able to return to doing the things I love, including running, weight lifting, and yoga.

Andy's physical health tips

For rebuilding and maintaining physical health, especially immediately post-surgery, I adopted the mantra, "Don't do too much, but do what you can." For several weeks, I couldn't run or lift weights, but I was able to gradually increase how long I walked, and do simple mobility and body-weight exercises, so I did those things as well and as much as I could until I was able to safely start running and lifting again.

Andy's mental health tips

For mental health, community has been key. Whether it's family, friends, church, or the amazing ostomate groups and individuals on FB and Instagram, it's been so important to be surrounded by people who support, encourage, inspire, and challenge me. It's essential to realize and remember that I'm not on this journey alone.

Andy's view on dealing with body confidence

I still struggle with body acceptance and confidence; but when I'm struggling, I remind myself of the amazing things my body, even when it was sick with UC and cancer, was able to do, and have gratitude for my body's strength and resilience that have brought me to this point. When it comes to things like going shirtless, going to the beach, or being intimate with my wife, I'm a believer that the best way to deal with feeling uncomfortable is to just do the thing that you're uncomfortable with. The first time I took off my shirt at the beach was a revelation because NO ONE CARED I had an ostomy bag except me!

A quote that has helped Andy

A quote that has gotten me through a lot of difficult situations-- the death of a child, my illness and surgery, tough races-- is attributed to Bob Marley:

"You never know how strong you are until being strong is the only choice you have."

A little bit of info on Lee

I'm Lee, and I was diagnosed with Ulcerative Colitis in 2000, aged 17. After numerous flare-ups and difficulties finding suitable medication - due to concerns over my liver - I sought a second opinion for a consultant at another hospital. Finally, after suffering with the UC symptoms throughout my years in the 6th form (leading to missed exams and social events), I found a medication that worked for me and was given some respite from the constant pain, embarrassment and toilet trips!

However, this more capable and diligent consultant investigated the issues with my liver function, as he had never believed it was med-related. After various tests, scans and biopsies, I was diagnosed with a rare liver disease called PSC. Most people with UC do not have PSC, but my understanding is that most PSC patients also have UC.

More on Lee's story

Long story short, there isn't a cure for PSC, and I was told I would certainly need a liver transplant at somepoint, but there was no way of knowing how far in the future this would be. Roll on my 21st birthday, when I experienced severe abdominal pain, which turned out to be the beginning of the end for my original liver! 11months on a nervy waiting list (I worked through the fatigue, itchiness and jaundice for the first 10), and I received that bittersweet gift just before my 22nd birthday. Pretty easy op really... in and out of the hospital in 2 weeks and I was able to crack on with the rest of my life. I even went to live in Prague to teach English, drove around Europe and played Leeds Festival with my band.

All good, until the disease came back and I required another transplant just after my 30th. This is where the IBD link really kicks in, because although I was managing the UC symptoms fine for those previous 7-8yrs, the doctors would not give me another transplant without removing my colon as they believe the UC is a key risk factor for recurrence of the PSC. Obviously I never questioned this, but my second transplant experience was much more complex, traumatic and incident-ridden than the first! I was in ICU for a month due to many complications including the new liver needing 'resectioning' due to a clot, the stoma retracting and needing to be re-sited, and then, the new stoma bleeding profusely, requiring emergency surgery and a lot of blood. I had dialysis for kidney injury, multiple chest-drains for pneumothorax, nebulisers for high potassium and lots of physio as I couldn't stand or walk after losing muscle tone whist in ICU. It couldn't have been more of a different experience than the first X-plant!

 

Anyway, after 3 months I escaped hospital and returned home to learn to live with my stoma. As it was a by-product of the liver disease, I just kind of accepted that I just had to 'get on with it'... but it's rarely that simple! I experience leaks, soreness and anxiety over being far from a (clean, usable!) toilet; there aren't a great deal of British establishments that cater well for ostomtes!

Lee's determination

It hasn't stopped me doing whatever I want though - since the last op in 2013, I've spent a month driving around Europe again, toured Italy with my band and for the last 5yrs, I've worked for a charity supproting older people  to stay independent. I'm also happy to set off for 10mile hikes nowadays, as I know my strategies for dealing with any stoma-related issues. (Take tissues, sanitisers, and don't stray too far from the tree line!) I even found the toilet situation at Glastonbury easier than those around me, thanks to being able to do everything I needed to standing up! Festivals like that would be one of the situations I would have dreaded prior to my stoma.

 

Lee's ostomy tips
For me, an essential tip for staying well with an ostomy is to keep hydrated. I've had a few bouts of dehydration when my bag has passed nothing but water; either due to a stomach bug or blockage. My kidneys always take a knock, but recover quickly with IV fluids... and this reminds me of the need to drink plenty of water daily.

Dealing with social anxiety

I've felt some social anxiety, mainly in the early years of having my stoma, still do on occasion. I spoke to therpists and had some CBT, but in honesty, the thing that I find helps the most is to just tell people that I have a stoma. It sounds simple, but it takes some getting used to being able to say it freely... however, if I'm around someone I don't know well in a quiet environment, and it makes a noise, or if I'm on a long journey and need to use a loo frequently... I just state the reason and it makes me feel much less 'on edge'.

Confidence with an ostomy
Regarding confidence: I'm always trying to figure things out as I go, as I'm still not 100% leak-free - is anyone!? But I can't speak highly enough of the Brava strips which go around the edge of a stoma bag. They definitely make the seal more secure, and even in the event of a leak, they buy you a good bit more time!  

 

I have a parastomal hernia, so the bulge is something I'm nearly always aware of, and I  use waistbands/wraps to help flatten and support it. Looser fitting clothes can help, and the main thing for me is being as comfortable as possible.

A favourite quote of mine is:

'Do not prey for an easy life, prey for the strength to endure a difficult one' - Bruce Lee.

I'm not religious myself, but I'm a fan of Bruce Lee and I think the sentiment is perfect.

Sean

A little about Sean & his story

My name is Sean I'm 31 and I was diagnosed with Crohn's Disease 4 years ago, but like alot of other people suffered without a diagnosis for years. Since diagnosis I tried most treatments but none could control the Crohn's. Last year I had a small bowel resectioning surgery where they formed an ileostomy. The surgery went bad I hemorrhaged and lost over 8 units of blood and was put onto life support. The recovery was just as rocky suffering from sepsis, AKI level 3 and organ failure. Thankfully I'm now on the right track and have already decided to keep my ileostomy for life! I have other health conditions which cause me to use a wheelchair and I have mental health problems.

A physical health tip from Sean

My best physical tip for anyone suffering from ibd or a stoma is to rest when your body needs to rest and stay hydrated.

Mental health - Sean's advice
I use a great mental health tip if you are struggling and that's to take small breaks.

Body confidence
The only tip I can give on body confidence is to look in the mirror and love the reflection that's looking back at you because you are beautiful... Scars, stretch marks and everything else!

Sean's favourite quotes

I use a couple of quotes my first is:

"you only die once, but you live every day."

The other is:

"if you cant see light at the end of the tunnel it just means your tunnel has corners, keep going and you will get there."

Keith

Keith's story

I am Keith Thomas, a 59 year old bus driver from Swansea, South Wales. In 2008 I was diagnosed with Ulcerative Colitis after many years of illness. Next month (June 2021) I am celebrating living for nine years with a stoma. Before this there were many dark days living with Ulcerative Colitis, not knowing what tomorrow would bring, now I have a life with a bag that I totally embrace.

A physical health tip from Keith

Open your door, step outside and walk. No matter how far you go, walking is awesome for your health.

A mental health tip from Keith
I have never suffered with bad mental health, but family members have. Please remember you are never alone, no matter what you are going through. Reach out - we are here for you.

Keith's body confidence tip
Learn to Love Yourself. This is the first part of your body confidence journey. IBD will play with your mind but stay strong and be positive.

Keith's Favourite Quote

"Happiness is a mood. Positivity is a mindset."

Thank you again so much to my blog contributors for sharing your experiences - you are truly amazing people & you never know just who your story may save.

Until next time,