an activist is born! ulcerative colitis – a response..

 

Almost three months ago now, my youngest was diagnosed with severe ulcerative colitis. That’s an easy enough sentence to write and read, now, but gives little away especially if you don’t know the condition.

I paced the sixth floor of our major hospital while she had the colonoscopy until the GI doctor came out to speak to me. Anyone would know it’s not going to be good news seeing him coming towards you. That’s a talk you don’t want to have..

She’s so much better than she was that day. In fact 2012 itself can be left out of our collective memories. Such a sick little one she was… And yet this so much better, this not in remission yet and take some more heavy duty drugs to try and get you there, is not where you’d want your darling 21 year old to be. If there was a body part to give I’d give it in a heartbeat sweet one.

Today she roared. An activist is born. Any hint of embarrassment around all this squeezed out of her in response to an insensitive article from the other side of the world. Brought to her attention by a support group she belongs to – bringing that journalist world wide attention in reply.

Below is my daughter’s reply

Dear Kerry Dougherty,
 
Reading your article “Bathroom bill ends up where it belongs – down the drain” in The Virgnian-Pilot (January, 2013) I was conflicted. As someone living with ulcerative colitis I thought it’s great to see inflammatory bowel disease (IBD) being acknowledged and given some attention in the media. However, as I kept reading, I became upset and enraged. Eventually I just wished the article had never been written in the first place. Your “sympathetic” tone is very condescending to the IBD community and it is clear that you have not done any research. Your facts are wrong (Ally’s law was started by a woman not a boy) and you make people living with IBD out to be pretty much scam artists, even stereotyping us with thief’s or at least as un-trustable members of society.
 
Is it selfish to want access to the nearest bathroom when you’re crippled over with pain and only have ten seconds (rather than one or two minutes as you wrote) before your next bowel movement? According to you and some of your readers it is.
 
The biggest problems I had with your article is the overall attitude towards IBD that it sends to its readers. I understand that people see most of our symptoms such as constant, bloody diarrhea and gas as embarrassing, but it is through people with your power that this can be changed. I’m assuming that some of your readers have never heard of crohn’s disease or ulcerative colitis, as I hadn’t when I was diagnosed. Having a world wide audience (I believe you are an American publication, and I am writing this to you from Sydney, Australia), you have the ability to educate people and even influence their thought patterns with your words. I understand that the whole world isn’t going to become aware of or change their attitude towards IBD overnight, but reading some of the comments on your article, I know it is necessary to at least try and educate the world, even if it is one by one.
 
When I first became sick in March 2012, I was so ashamed of my symptoms that I wasn’t completely honest with my doctor. I am by no means holding you individually responsible for my or other IBD patients’ delayed diagnosis, but articles like yours are part of the reason IBD sufferers suffer in silence. If I had not been so embarrassed about my symptoms, I wouldn’t have become anemic to the extreme that required me to get blood and iron infusions in the emergency department. If only someone had said to me, “it’s ok to have these symptoms, don’t be so ashamed,” I would have sought out help sooner. Instead, your article tries to cover these up, “without going into graphic details, you get the picture.”
 
I am only 21, which is in the average age range of when people are diagnosed with IBD, and although I still see myself as young I count myself lucky that I was able to get through high school and teen years living a healthy life. Others are not as fortunate as me, even being diagnosed when they are still babies. Do you want them to grow up being outcasts having to stay home for their entire lives because others will shame them and turn them away from their bathrooms?
 
I am not saying that people with IBD will inconvenience businesses by always demanding access to their bathrooms. Often people with IBD only go out when they are feeling their best, and know where all public restrooms are at their destination several days ahead of their trip there anyway. Unfortunately though, sometimes an urgent bowel movement does come on, and we only have moments to react. It is times like these when compassion from strangers is really needed.
 
I want to take this opportunity to educate you and your readers that share your opinion on what it is actually like to live with IBD. We experience crippling pain and feelings of embarrassment every day. At my worst, I had to go to the bathroom around twenty times in one day. As much as our medicines help us, we worry what they will do to our other organs. For example the medicines i’m on now require weekly blood tests to monitor my liver and bone marrow, but they could also cause osteoporosis and eye problems. Apart from this there is the increased risk of cancer, and medical procedures such as colonoscopies, stool tests, endoscopies and more. My biggest worry at the moment is that I’ll stop reacting to my medicines and eventually need surgery, which for many with crohn’s and colitis happens immediately at diagnosis. And I haven’t even told you yet about the associated diseases such as mental health problems, and other autoimmune diseases, strain on relationships and stress surrounding eating and diet.
 
Let’s be honest, I see some pretty disgusting things living with inflammatory bowel disease, but nothing I’ve seen yet since my diagnosis has made me so horrified and disgusted as your article. We are all human, and we all have to go to the loo. Do you really have to make it embarrassing for the people that have to go more often than others, and have no control over it? Trust me, we don’t like it either, but if we can live with it, you should be able to too.
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58 thoughts on “an activist is born! ulcerative colitis – a response..

  1. It’s great that your daughter felt empowered to write that letter. I wish her the best – she sounds like a great voice and advocate for sufferers of IBD and Crohn’s.

  2. What a wonderful daughter and her response is perfect! My sister-in-law suffered from this in her 20s and developed Chrohns and had lots of surgery and a colostomy for months. She is now in her 30s and has had 3 kids and is fine. It just went away! I hope this for you guys too.

  3. unfetteredbs

    Wow. You should be proud of your daughter for such a well written, intelligent letter. I thank her for educating me. Thanks for sharing this.

  4. Yes, she told him, good on her!
    HAPPY AUSTRALIA DAY to you, both! 🙂

  5. Well written response – you go girl!

  6. WAY TO GO!

    BE ENCOURAGED! BE BLESSED!

  7. Having lived with Crohn’s Disease for over 25 years, I’d like to say thank you to your daughter. Such a well written letter, I know you are proud!

  8. Wow…your daughter certainly knows her own mind…and is not afraid to use it 😉 Good for her, for speaking up AND speaking out.

  9. Woot Woot! That was the best. I know you must be so proud of her. It seems pretty apparent that you raised a fighter. I hope she continues to feel that she can speak out, educate and fight for understanding and simple acceptance. Has she considered starting her own blog and/or webpage of some sort to support both herself and others with the disease? She is a terrific writer and I bet she would bring a lot to others as well as creating a support system for herself.

    • Thank you so much for that lovely comment Deb. She does want to write; and is considering her post grad study options one of which is counselling. She has talked about starting a local support group but for right now just has to get to remission herself. Your encouragement is so appreciated, I will have her read this xx annie

  10. She made her point quite well, with no lashing out and flailing. Kept the anger in check, put the facts and feelings out there in a well-written presentation.

    That’s backbone, That’s style. That’s class.

    Wonder were she got that? 😉

  11. Hi Anne,
    As your daughter expressed so beautifully (and I commend her for speaking up) we all go to the bathroom and whether we acknowledge it or not we all have to get rid of our body wastes and the only way to do that is to make kaka-poo-poo. Right? I don’t understand why we’re so uptight about it…?

    I don’t talk about it on my blog but I have a condition called fibromyalgia and as an extra “gift” I.B.S. and food allergies came along with it. I know what your daughter means about the severe cramps. Many times I’ve driven home doubled over in such pain it felt like an appendix attack. I don’t wear belts because I never know when my stomach will blow up with gas. I’ve learned I have to eat slowly, and avoid certain foods – I’m severely allergic to chicken – but there are still times when I get severe cramps and heat or lying on my belly helps (imagine trying to lie on the floor at a cash register!).

    And let your daughter know that at age 60 and carrying my backpack on my back, I manged to walk 250 km of the Camino (the ancient pilgrimage route in northern Spain) last year – even though I knew the bathroom facilities were going to be limited and I had no idea whether I could eat any of the food …
    http://rosannefreed.wordpress.com/2012/08/12/walking-in-spain-i-just-had-to-do-it/

    What do I do? I’ve empowered myself to be well. I don’t take any drugs. I won’t put something in my mouth if I can’t pronounce it or don’t know what it is. For the past 10 years I’ve eaten huge amounts of steamed farmer’s market veggies (lots of kale) with small amounts of meat or fish, and rice or pasta made without wheat. No alcohol. No cakes… I can’t eat “gluten free” foods because they are usually made with potatoes and I’m allergic to all the nightshade vegetables. My nose has become more sensitive and I’ve learned to enjoy wine, cakes or sweeties just by smelling it. 🙂

    • Thank you so much for your comment, and all that positive information Rosie – very encouraging. My daughter is reading the responses – I’m personally thrilled to know about your trip despite it all and wish you well with the fibromyalgia and the added gifts..

      • You daughter must remember that she’s not a victim, and by just taking one small step at a time, and in the right direction, she’ll get her life back.
        I also highly recommend that she see a Naturopathic doctor (ie someone who can give her Homeopathic remedies).
        You have my email address if she’d like to ask me any questions.
        love rosie

  12. Bravo! Annie you must be so very proud of your girl! Poor thing. I have a friend with Crohn’s and in the past 5 years it has settled back down happily. I had IBS for 9 months after my youngest was born and it was hideous and daily, the testing, the diet changes, etc. Good for her for speaking up! I hope 2013 is a healing year for her. xo maggie

  13. This is wonderful – what an amazing person she is. I can understand how she feels (to a point) because I’ve suffered IBS and had gall stones and both of these require me to know exactly where the closest toilet is every time I leave the house! I say ‘to a point’ because my illness was not nearly as bad as your daughters so I can’t fully feel the pain, worry and embarrassment she has felt – I can only imagine how incredibly difficult her journey has been. Having said this, I am now living a full and ‘normal’ life (if there is such a thing!) When my symptoms became quite bad I cut back on all foods and spent several days just drinking water. I then introduced one food at a time (starting with rice) and would eat that for several days before adding something else. I eventually used a specific diet to ‘pass’ my gall stone (against the advice of the doctors) and this, combined with my change of diet has seen me healthy ever since. I know this is minor compared to what she is going through and I wish her all the luck in the world. By the sound of her letter to this twit (Kerry Dougherty) I’m sure she will always do well in her life and fight for the rights of people who do feel embarrassed and are not well enough to know who to talk to or who will understand the loneliness of this disease.

    When I first read about your daughter’s illness I remember I told you about my nephew who had a brain tumour when he was nineteen. He had a long struggle and walked a road no one will ever want to walk. He is now in his early thirties and has built a foundation call Brain Tumour Alliance Australia. He has helped so many people and raised a lot of money for the families of those left behind. Last year my best friend was diagnosed with a brain tumour and he virtually saved her life (by talking to surgeons and organising assistance for her). I know this is getting long winded, but when I look back now – what seemed like the end of the world for our family turned into something wonderful for so many people who would be lost and confused without his help. To me your daughter seems like she’s ‘made from the same cloth’ and I have no doubt she will live a long and happy life, helping those who need a ‘voice’ like hers in their darkest hours.

    Best of luck, hugs and love to you all 😀

    • Thanks so much for sharing all that Dianne – your story, your understanding and how very inspirational your nephew is.

      I think, like you, that my daughter is destined to help others through this and in fact my boss has been counselling me (!) since the diagnosis and has said the same thing from the start. That she will end up helping others. (I put the ! because I need counselling and she appears ok?!)

      I think initially I was in shock and so so sad but when I read this letter she wrote I breathed and thought ‘she’s going to be just fine’…

      I’m so in awe of her, so proud, so empowered.. xx
      and also so impressed by your nephew 🙂

  14. Wow, Annie, you daughter is amazing. I love how she articulately educates and informs throughout the letter, but loads up some head slaps at the end: “Let’s be honest, I see some pretty disgusting things living with inflammatory bowel disease, but nothing I’ve seen yet since my diagnosis has made me so horrified and disgusted as your article.” Brilliant!
    I have to say that this letter not only puts the critique in her place, but also puts YOU at ease that you have an amazing, empathic, and powerful daughter who can overcome whatever obstacle or “twit” (Dianne called it right) happens to fall in her way.
    {{{Hugs}}} to you and your daughter. Kozo

  15. Your daughter is someone who is going to make a huge difference in the world. Ironic to think that her horrible IBS is a gift to other people. What an amazing voice…you must be so proud to know her.

  16. foroneplease

    A brave one you’ve got there! She will bring about a positive change in the world 🙂 “Bold be her voice” super happy for you proud Mamma! hugz

  17. I read this when you first posted it, Annie, and I was very proud for you. What a wonderful response, and she educated me as well. I had no idea just how much this had impacted her life. Good for her.

  18. You GO Annie’s daughter! Excellent response. I’ve known a few people with CD/IBS and none of them have been happy to have it. Great job!

  19. I am amazed and thrilled with your daughters tenacity!! UC is no way to live, and I’m saddened that she’s in her early twenties. I’m in my early-ish 30’s and was diagnosed when I was about 5 months pregnant, after months of agony (physical and emotional). I feel the anger and pain in her letter like I wrote it, it’s an all to familiar story. My best to your daughter and lets cross our fingers that they find a cure in our lifetime!

    • Thanks so much for your words..I’m blown away by her letter, and by the way she’s dealing with this incredible bastard that has come her way…

      Crossing fingers for you both, and all the others.

      And congrats on your baby by the way 🙂 such a nice thing to hear..

      • You’re very welcome – your daughter sounds like an amazing, strong, and powerful woman! I wish I was more like her!! 🙂

        My fingers are crossed that there is an end to all of this sometime soon – we all could use a little hope!

        Thank you for the congrats – she’s a miracle baby, at least that’s what the doctors say! We conceived pretty easily (against popular medical opinions) and after all I went through she arrived 100% healthy & unscathed! She is 4 months old now 15.5 pounds, she eats, she’s been sleeping through the night since basically birth. She’s a dream baby, and to be so bold – I think I deserve it 😉

  20. […] while back I posted a letter that my daughter had written in response to a journalist. She never received a response but they say writing is good […]

  21. […] an activist is born! ulcerative colitis – a response […]

  22. Amen!

    My daughter was diagnosed at 14. Luckily she has been in remission since 15. However I remember those days well.

  23. Oh what a fantastic reply to the article.

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