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Bullying. Think of it however you want. What do you envision? Has it happened to you?

This morning while feeding my son I was casually looking at Twitter. I was absolutely flabbergasted and appalled by tweets made by a “journalist” with 46,500 followers about a woman with an ostomy bag. I personally do not have a bag, but I know many people who do. And the hateful, hurtful and shocking words made me feel sick. In my twelve years battling Crohn’s I personally haven’t been targeted by hateful banter, but it’s so sad to think others with chronic illness are targeted. Here are some of the tweets (that have now been taken down – please excuse the language)…

“She can’t help but talk shit. She has such a problem w/ shit in her body she has to wear an ostomy. Being full of shit is her actual illness.”

“I could care less about her or her illness. She doesn’t deserve my sympathy or respect. Sucks for her.”

“I’m not the one w/ a shitty hole in my stomach virtue signaling about how my stomach hole is cute. Why lie to her & tell her it looks good?”

“I’m not making fun of her. I am making a factual statement. She is actually full of shit. Ppl who are walking toilets shouldn’t throw shit.”

“Your friends are lying to you. It isn’t attractive. When you post pics like that you’re just asking for a confidence boost.”

I think you get the idea. I’m not one to instigate or enjoy confrontation. As a journalist… and a just a decent person, I’ve always done my best to steer clear of putting anything out on social media or my blog that could create anger, seem biased or one-sided. But, as a member of the inflammatory bowel disease community, as a voice for the millions who suffer in silence, and as a new mom… I just can’t let this go.

I commend each and every IBD patient who proudly shows their ostomy bag like a badge of honor. You know what, you deserve to. What you have endured to get to that point and what you experience physically, mentally and emotionally each day is difficult for someone like me to comprehend.

When I scroll through social media and see men, women, and kids in bathing suits or workout clothes and not hiding their bag in shame, it’s empowering! It makes me smile to know these people aren’t letting their disease or their personal situations hold them back from living a full life. Rather than hiding their bag or being embarrassed, they are showing people all over the world that your quality of life doesn’t have to be destroyed or hindered because you go to the bathroom differently than everyone else.

Is having a bag ideal? No. Is choosing to rise above your struggle and not let it hold you down incredibly inspiring. Yes. So when you see tweets like the ones above, brush your shoulder off… drown out that noise and know there are millions of others who look to you as a hero. Shame on anybody who thinks otherwise and shame on the keyboard warriors who can spew such hate.

 

Natalie

Posted originally on July 20, 2017 on Lights Camera Crohns.

Rachel

I was diagnosed with Crohns in 2002 after just over a year of stomach pains, rushing to the loo and blood in my stool. Although I had many procedures over the years, these were mostly exploratory to check up on my Crohns and I managed flare ups with courses of various medications, like oral or IV steroids helping to get me through sixth form and university.

I considered myself fairly lucky as I knew that cases of Crohns and Ulcerative Colitis can require surgery and I had years of fairly good health, being able to complete my studies and start working full time. I became very poorly at the start of 2015 and knew that something was different with this flare up – symptoms were far worse than anything before and medication I had previously taken wasn’t ‘kicking it into touch.’ After a couple of short hospital stays to go on IV steroids, I went to an emergency clinic and was admitted to hospital for what I was adamant needed to be a longer stay to really get to the bottom of things (no pun intended). My employer was very accommodating and I had told them I would probably be in for up to a week. Fast forward seven weeks and I was still in hospital on a low residue diet and trying biological drugs via IV for the first time. With no improvement from these drugs and results from tests showing lots of ulcers, inflammation and swelling in my large bowel (colon) which was in my consultant’s words ‘on fire’ it was time to consider surgery. Well, I say consider, I was informed that surgery would need to happen and at 9 pm one evening a surgical consultant I had never met before came to tell me I would need a pan-proctocolectomy.

 

When it comes to health and my Crohns, I feel to an extent that ignorance is bliss. I knew that people with my condition could need surgery at some time in their life and had a vague idea that ‘a bag’ may need to be worn but I didn’t want to know any more than that to worry myself. I was in my own room in the hospital when the consultant told me about this operation which involves removing all of the large bowel, rectum, and anus and forming a stoma. I remember feeling very upset, terrified of surgery and frantically googling the procedure and what a stoma even was. I found lots of videos on YouTube which were really helpful, showing how to clean a stoma, put a bag on securely and how to wear support garments to prevent a hernia forming. At that time, I went on to have a loop-ileostomy formed and none of my bowel removed. This type of stoma was formed so that if all went well, biological drugs would ‘heal’ my inflamed large bowel over time while ‘traffic’ as I like to think of it was diverted to pass through the stoma rather than the large bowel, resting it. I remained positive that I could have what people term a ‘reversal’ and the stoma could be popped back inside my body and reconnected once my large bowel was better again. Unfortunately, this didn’t happen and fast forward to March 2017 where I was once again in the theater for a major operation, this time for a pan-proctocolectomy and a permanent or end stoma was formed.

I never thought at 33 I would have a bag for life other than my weekly shopper but I feel lucky as surgery wasn’t a decision I had to make like some people who are managing their symptoms but life could be better with an operation, it was really the only option and decided for me as I was so ill.

I tried various biological drugs before my second operation to make my stoma permanent and am grateful that I had the chance to try these. My gastro and surgical consultants were less optimistic and had suggested the second operation long before I went ahead with it but as it was such a final operation, I wanted to give modern medicine a chance, until it became clear it was unsafe to keep doing so.

A device like this would work well for me as the type of stoma I have is an ileostomy and is permanently working/producing output. During the night when I am sleeping and not emptying my bag, it obviously gets fuller and stays fuller, particularly if I have had a large evening meal or eaten late at night. This runs the risk of leaks as well as the bag filling with air or ‘ballooning’. Having something in place that raised an alert if the bag was filling would ease my mind about potential leaks.

The only real changes I have had to make in my new life with a stoma are that I’m very careful when exercising as a hernia was formed from the first operation and I had it repaired in the second. I wear a heavy duty support belt when walking my powerful dog or doing something like circuits. Swimming is a great form of exercise as you are naturally supported in the water. I am also conscious of what I eat at times, not all the time, just before something major like a long flight or a full day out when I don’t want to constantly be emptying my bag. There are things to help with this like Imodium tablets to slow down output and sachets to put in the bag to help soak it up.

I’m loving my life, grateful to be off steroids and their many horrible side effects and want to spread awareness that stomas are not something to be ashamed of or embarrassed about and that a full life can still be lived.

 

Rachel

@rachelcarey84

In our continuing series of patient stories, we would like to introduce you to Joshua L, diagnosed with Crohn’s Disease at age 23.

Dear 11 health
My name is Joshua L. and Crohn’s Disease has welcomed me with open arms.

Here is my story. I was diagnosed with Crohn’s at the age of 23. I can remember the moment. I went to use the restroom and I was in pain like nothing I had ever felt before. The countless colonoscopies, 14 different medications tried, blood work nothing could get my symptoms under control. I can remember the utter panic of simply having to know where a restroom was no matter where I was and wondering whether I would make it in time. I thought this was how simply life was going to be and I had come to terms with that.

Now, 15 years later I began multiple surgeries in hopes of having a better quality of life. From 2011-2014 I’ve had my colon, rectum and rectal stump removed and have an ileostomy. During the last surgery when I was having my rectal stump removed I developed an infection at the surgical site. After the infection was cleaned out I had to heal naturally from the inside out. This left an 8 cm deep wound that had to be packed daily by a home health care nurse in order to heal.

A lot of life changing moments of weighing 100 lbs to now a healthy weight of 195 lbs. From the days of being moved to a rehabilitation center for three months after the colon and rectum were removed because I was too weak to go home. To the bouts of dehydration when learning to care for the stoma with hospital stays. Through all of this now my quality of is 1000x improved! Currently, no medication is taken and I can eat whatever I want.

I have a passion to help others who are going through similar experiences that I have gone through. I want to make a difference in other people’s lives. We need to erase the stigma and shame surrounding sometimes how people with ostomies feel. It’s ok to have one after all it saved my life!

Sincerely,
Joshua L