Dating man and woman taking selfie.

Dating With Inflammatory Bowel Disease

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It has been bought to my attention over the last few years, just how hard many inflammatory bowel disease (IBD) patients find the whole dating scene.

When you first begin dating someone new, essentially that person is a still a stranger. How much of your soul do you need to bare before you even know if this has any sustainability?

Dating is hard enough for healthy people, right? Wondering, “Does he like me? Did he mean to touch me then? In fact, do I even like him? His nose is a bit big…”

I have a j-pouch, which is difficult enough to explain, “No, unfortunately I am not available for a passionate encounter this evening, as I have vast quantity of medication to take before bed. I also don’t want to have to get up and go for a poop in your toilet in the middle of the night, or worse still, sleep through the ‘getting up’ part.”

So how do we, as “IBDers,” “Ostomates,” “Pouchies” tackle the subject?

Personally, I am more of cards on the table right from the very start kind of girl. Living with IBD means that I have limitations; I often don’t feel like going out after being at work all day.

It is small things like this that could affect even the early on stages of dating that I like to get off my chest sooner rather than later. That way, it will soon become clear apparent whether there is any compatibility. These may be small things, but they occur regularly and could present a problem in terms of the outlook for the relationship.

If you want to buy me food, I am well up for that. In fact, you may now be well on your way to becoming my favorite human, but make it a takeaway so I can eat in my PJs at home, OK?

Cinema – no problem! Just make sure you book me an aisle seat so I can escape quickly if the need arises.

Living with a colostomy bag or having hefty scars on your body should not be an issue, but personally I would rather these be known from the start, because you will soon find out whether your could be “Mr. or Mrs. Right” is in fact, “Mr. or Mrs. Shallow,” and nobody should waste time on them.

Of course, I have had my, “Who is going to want me now?!” meltdowns, but I am a great believer in not settling for anything less than you deserve. I can tell you with 100 percent confidence that anybody who is shallow enough not to want you because you have an ileostomy, does not deserve you. You need someone that see’s past that and see’s who you really are and what makes you tick, and that connects with you on a deeper level than, “You have a great butt.”

I once saw an advertisement on Facebook promoting a dating site specifically for people with IBD. My initial reaction was, “Why the hell should I only be allowed to date people with the same disease? That is completely ridiculous, and will just serve as a constant reminder that my body is knackered and on a desperate search not be alone I’ve had to resort to just looking for others with IBD.”

After my initial outburst I began thinking about it more rationally. In no way do I believe that people with IBD should feel they have to date other people with IBD, but it would sure save a lot of explaining. There would be no need for awkward explanations about toilet trips and trying to explain that fatigue is not the same as when you are just tired.

The only thing that bothers me about having a relationship coupled with IBD is that I have an uncontrollable feeling of guilt. Entering into a relationship knowing that I will be sick, moody, and and putting someone else through it, when in reality it’s not their problem, is a great source of guilt. But, if they date you, they date all of you, IBD and everything.

The thing about dating is, there are no rules. I think we’re all just winging it really, but being yourself will mean that you have a clearer image of who can fit in to your life, and more importantly, who will help carry your baggage.

Just keep the faith, and never let anyone make you feel like you aren’t enough, because you are. Don’t settle for second best and go with your gut. (Excuse the pun.)

Follow this journey on Social Media, IBD and Me.

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Being Judged By Others Who Cannot 'See' My IBD

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Many people nowadays see disability as being in a wheelchair, not having a limb or being deaf or blind. When people look at me they see a young, skinny girl who looks perfectly healthy apart from the pale complexion.

If you saw me at college you’d think I was having a normal day like any other teenager; however, I am far from your average teenager. I have an extreme illness from time to time which means I need to rush to the toilet to sometimes have diarrhea or squirm in pain while keeping a smile on my face. When people hear, smell or see me going into public toilets, they probably think I am hungover. I am not. It is a normal day for me and I am trying to forget people’s opinions as I slam the cubicle door behind me, getting my pants down just in time to relieve myself of the burning need to get rid of the toxic waste in my body. People forget that it’s just a toilet and that’s why they are there. You wouldn’t tell a child to stop (excuse the phrase) “having a poo” if they were desperate. People forget this is my body functioning in its own way in order to survive. The only difference is my day gets harder when I keep running to the toilet and people walk up to me and tell me to be ashamed of myself for using a toilet meant for people with disabilities. I am eligible for a disabled car parking space but without a doubt people would wonder why I would be allowed that.

Many people are so judgmental nowadays and I struggle to try to brush it off. Sometimes I get cramps when I get upset about what they could possibly be thinking when I leave the public cubicle. My overall appearance probably doesn’t help since I have ombre hair and wear a lot of make-up. People think it’s OK to stare me down as I walk out of the ladies’ room. I don’t enjoy attention, in case you haven’t guessed.

The only thing that keeps me going is knowing I am not alone, and I have learned recently that I am not. Mental health definitely becomes a challenge when you have a chronic illness like this. You struggle to cope so much that you hurt yourself by eating something you shouldn’t and so it leads to another day in pain because you wanted a little sweet taste of the past. I am still trying to find foods that will agree with my stomach so I can feel happy with myself for making it work rather than giving up and splurging on chocolate. The worst thing I can eat is chocolate and damn, I miss it.

One of the hardest parts of having a invisible illness is when people think they understand what you are going through. “You should try not to stay out of college because that isn’t good for finding jobs and things like that.” You think I don’t know that? I lost a job to this disease. I hate it when people think their opinion matters in the grand scheme of my life – my life is none of their business! Think twice before you speak about something you know nothing about.

The questions people should be asking nowadays are things like, “Do you feel well enough to leave the house with a friend or family member?” Most of the time the answer is yes, but some days I lie on the couch and run to the toilet constantly. One thing I never get tired of is food and the constant need to consume. I feel better when I can motivate myself to walk to Morrison’s because they have the toilet signs that say, “Not every disability is visible.” Then I can go buy food to take back home and stop at a local café to calm myself down and pick my energy back up for the short walk home.

Having this illness is frustrating as someone who used to be into athletics and staying well. I have always loved sports and I wish people could see that people are the way they are, but that doesn’t mean they were always the same person they are now. Why do people have to make up a story in their head and confront a stranger with their opinion on what they think is happening? It upsets me that people don’t think about what a person might be going through. I’m an approachable person who will happily show you my IBD card and my radar key. Don’t judge me – underneath the face of a young woman is someone who is sick but also a fighter.

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Thinkstock photo via SIphotography.

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8 Things I've Had to Accept Since My Diagnosis

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I said something about my inflammatory bowel disease the other day, which in retrospect really made me laugh, “This is my life now. I’m kind of just getting over it.”

I mean, bloody hell past-Izzy, why so melodramatic?! Once I stopped laughing at myself, I figured I had a point. When I received my diagnosis, I made a promise to myself that I wouldn’t let it change my life. I didn’t realize that there were lots of little changes I would have to make, but I have made them, and I’m accepting that this is it now. I have to work with what I’ve got.

Here’s a list of the things I have had to accept:

1. Medication. I should probably consider myself lucky to only be on two different drugs, but…ugh. One of them is a tiny tablet, a steroid, which dissolves before you can even swallow it – and tastes awful. Thankfully, at the time of writing, I am on my last week of the course of steroids! The other is a huge, orange anti-inflammatory, and it actually has a smell to it, which I didn’t even know this was possible! I take a few vitamins as well to keep my strength up.

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2. Side effects. Again, I’m quite lucky, but the side effects haven’t been too bad. My favorites have been: stomach cramps (ironic because that’s a symptom they should be tackling), absolutely awful skin (like I needed to look as bad as I feel – ha),  four hour sleeps at a time, and the shakes. Some days I just have wobbly fingers, other days my whole left arm completely out of control.

3. Being tired. I’ve always been a really sleepy person. I’d often sleep in till midday on the weekend. On the flip side, I could also party till the early hours and survive a Sunday on four hours of bad sleep on a blow-up mattress. Now, however, I’m often ready to go to bed at 8:30 p.m. I rest my eyes on the Tube, even if I’m standing. I have power naps in the afternoon. I’m always knackered!

4. Tests and treatment. Before I was tested for Colitis, I had only had one blood test, and I was so young I couldn’t remember. Now, I’ve had enough to know the procedure so well I could probably do it myself! I’ve even grown to like to green bruises that form in the hours after. One test I can’t convince myself to like is an endoscopy, but that’s pretty understandable.

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5. The add-ons. In this case, I’m talking about anemia! I guess that would explain all of that tiredness I mentioned earlier, eh?

6. Talking about it. I wrote a piece for The Mighty last month about the difficulty of talking about my disease and about my body. As I said in the piece, as difficult as it is, it is very much necessary!

7. Never knowing what’s next. When you don’t know your triggers, there’s little you can do to guarantee you’ll be okay. I can sleep really well, but wake up feeling sick. Or have a really productive day, and then be hit with extreme tiredness before I’ve even made it home.

8. My inability to ignore the things going on in my body. Out of sight, out of mind doesn’t really work so well here. I’m giving my permission to, every now and then, say,“Actually, I’m not entirely well, and that’s OK.”

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10 Ways My IBD Has Made Me a Better Person

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I am so grateful for my inflammatory bowel disease (IBD).

It sounds so odd to say, right? Why would someone be grateful for their chronic illness? Here are 10 ways my condition has made me a better person:

1. Self-love

I’ve always loved myself to a degree. I thought I knew everything about myself. My body. I mean I’m 24 years old, what else could I possibly have to learn right? (Joke). Being diagnosed with IBD and later getting my ostomy helped me to learn to love myself, every part of me, because I learned who I truly was, how far I could push myself and my body, physically and mentally.

2. Not to be judgmental

When someone’s sick, I’ve learned not to jump to conclusions or make assumptions about them. On the other hand, when someone doesn’t appear to be sick I’ve learned not to assume (there’s nothing wrong). You never know what someone is going through.

3. How to be patient

There’s no better way to work on patience than waking up at 3 a.m. after your ostomy bag has slid off for the third time! Having a chronic condition calls for patience. You have to be patient with yourself, your body by knowing your limits, acknowledging them and abiding by them. You have to be patient with your physicians and care team to allow them to do what they do best, care for you.

4. How to advocate for myself

Having a chronic condition has taught me to raise my voice… For anything really… Things I believe in, things I want, need, etc. The one time I didn’t advocate for myself I ended up having an emergency surgery because the treatment didn’t go “as planned.”

5. Not to jump to conclusions

I’ve had my fair share of meltdowns and honestly, I think I deserve to have an occasional meltdown every now and again. It’s hard having a chronic illness. But sometimes I can get myself upset and worrisome over nothing.

6. How to be supportive

I’ve learned so much from my support system. They’ve taught me not only how to get support, but how to give it as well. There are things my friends and family have done for me during hard times that I am so grateful for and really couldn’t imagine getting through everything without them.

7. To appreciate the little things

When living with a chronic condition, you learn to appreciate things “healthy people” may normally take for granted. For example: waking up, only being hospitalized once this month, going to work. Every little thing counts.

8. To do my research

Having a chronic condition often introduces you to many new things: New doctors, new prescriptions, new specialties, the works. It can be overwhelming to say the least, but it’s the life I was given. I have to accept accountability and do my research. Research the physicians I’m referred to, understand the medication or treatment plan suggested – this way, if something doesn’t go as planned, I know I at least made an informed decision and not a rushed assumption.

9. To open up

Growing up, I’ve always had issues trusting people. I was embarrassed of my condition. I mean, what teenager do you know is excited for bloody stools and frequent hospitalizations? Not this girl. I chose to suffer in silence. When I made my first friend with IBD it was like a weight was lifted off of my shoulders! Expressing myself and being blatantly honest about my condition just felt right. It felt like I didn’t have to hide anymore. Now, I love sharing my story and hearing others’ story of strength!

10. To have a little faith

A few years after my diagnosis I started to deteriorate fast. My health was going downhill and it affected every aspect of my life. I couldn’t see an end. I thought I would continue to suffer until I eventually just died, to be honest. I imagined myself at 24 years old living a life with controlled symptoms. A life I actually enjoy that no longer revolves around ulcerative
colitis. My condition has given me a better, brighter outlook on life. If I can make it through this, I can make it through anything!

Follow this journey on More Spoons.

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What to Do If You're Feeling Scared After Your IBD Diagnosis

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I receive quite a lot of messages and emails from young people who have recently been diagnosed with inflammatory bowel disease (IBD). It makes me happy and sad in equal measure. I’m happy that they are reaching out to talk to someone about their worries, and sad because they are struggling with something incredibly distressing on top of all the usual, more common yet challenging aspects of growing up. Some of them are just looking for reassurance and advice on how best to live with a chronic illness. Some of them don’t want to live at all.

I reply to these messages as quickly as I can and with as much information as I can. However, I often feel at a loss as to what to say to soothe a young man or woman whose experiences perhaps mirror my own fears from several years earlier. I try to think about what I wanted to hear when I was diagnosed, what might have made the whole thing a little less scary… And I hit a frustrating brick wall.

I was lucky myself in the sense that I was (officially) diagnosed when I was in my mid-20s. I certainly didn’t feel lucky; I was heartbroken, confused and devastated. I imagine it feels that way irrespective of your age, we all have different tolerances and being told you are never getting better stings —regardless of what stage in your life you are at.

I suppose what I’m clumsily trying to express is that I feel at a loss at times to help those who are experiencing what I have. What I am.

Then I try to take a breath and remember that all I wanted to hear when I was first sick was that life would go on. I still do.

Don’t get me wrong – I undoubtedly would not have thanked anyone for spouting that at me at the time of my diagnosis; I didn’t want life to go on if I’d have to carry this disease with me for the remainder of it. I didn’t believe it and I couldn’t accept it. But as I’ve grown alongside my illness, I’ve found my outlook has changed along with my priorities.

All I care about now is my own happiness and that of those around me. My illness is still a huge part of my life and always will be. It’s a part that can consume me from time to time, but those moments pass. Chronic illness is a slippery path whereby sometimes we wobble a little and sometimes we can’t get on an even keel. Nevertheless, we never lie down to it. We don’t have that luxury.

The truth is, our life does go on. We are incredibly lucky in that sense. We will have to make adaptions to those lives to make room for this illness. We don’t like that, but it’s easier than trying to bat it away like a pesky wasp at a jam sandwich. We have to accept it and stop fighting its basic existence.

Denial is fruitless and prolongs the period of time it takes to come to terms with having an incurable illness.

Don’t get me wrong here though, I’m not implying any of this is easy. Sometimes I even have a little cry myself when I feel low – I often feel I’m back to square one with this and the frustration of that can be overwhelming. But if I’ve learnt anything since I was diagnosed, it’s the importance of talking.

Talk to your parents, your friends, your nurse. Talk to me! Don’t push yourself into it – there’s no shame in that either. The last thing I wanted to do at first was talk about this with anyone, but eventually that changed and it became more of a comfort and camaraderie than a fear.

So please remember that you are not alone.

Things will get easier and you will learn to live with this. Like every challenge in life it feels monumental at first, but the more steps you take towards dealing with it the easier it becomes. I’m not in any way saying I love having a bowel disease. I hate it. But it has also taught me boundless things about my own body. It has shown me a strength I never thought I could find and its brought me closer to the people I love. It’s made me value my own life, and allowed me an opportunity to help me help you to value yours.

So if you take anything from my ramblings let it be this: disease is hard and scary and intimidating, but your life is worth the challenge.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255 or text “START” to 741-741.

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On the Imminent Repeal of the Affordable Care Act: A Letter to My Representatives

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The Crohn’s & Colitis Foundation of America (CCFA) has an articulate, thorough form letter available on its website that is automatically sent to your senators and representatives based on your address. If you have inflammatory bowel disease (IBD), know someone who does, or are an incredibly kind, empathetic soul who likes to advocate for strangers, please take advantage of this tool.

It took me less than five minutes to input my personal information and jazz up the letter with my own story.

With the transition of power happening here in the U.S., it is all but guaranteed that the Affordable Care Act (ACA or Obamacare) will be repealed. The GOP, who will now control the House and Senate and are the chosen party of our POTUS, have been working for years to try and repeal the ACA. It is at the top of their list to “repeal and replace” this cornerstone of President Obama’s work over the past eight years, with “repeal” being the certain part of the plan and the “replace” remaining a question mark. The GOP has no firm, clear, ready-to-go replacement plan in place. With this huge and largely unknown change on the horizon, it is more important than ever to defend and advocate for those with chronic illnesses who face the very real, very immediate threat of a lapse in health care coverage and discrimination from insurance companies for having a pre-existing condition. This is absolutely unacceptable and a step backwards in ensuring the life, liberties and the pursuit of happiness for Americans – unalienable rights our elected officials swear to uphold.

You can construct your own letter on the CCFA’s website and will find a copy of my letter welcoming the 115th Congress below:

Welcome to the 115th Congress! As a constituent and volunteer with the Crohn’s & Colitis Foundation of America (CCFA), I write to urge you to support health policies that protect patients’ access to the care they need. Below is information about inflammatory bowel diseases (IBD) followed by principles that we hope will guide your activities in the next Congress.

Crohn’s disease and ulcerative colitis, collectively known as inflammatory bowel diseases (IBD), affect approximately 1.6 million Americans. IBD are painful, medically incurable, debilitating diseases that affect the digestive system.

I was diagnosed with Crohn’s disease in 2010 at the age of 20. Since then, I’ve undergone surgery, tried six medications, countless vitamins and supplements, and have drastically changed my diet to still wake up to varying degrees of health day to day. I’ve balanced all of this while being a earning my bachelor’s degree, maintaining a full-time job, playing soccer and softball, performing improv, and volunteering with the CCFA’s Camp Oasis and Big Brothers Big Sisters LA in my free time.

I have personally benefitted from several of the provisions set forth in the ACA, and it is because of the health care I receive that I am able to stay healthy and lead such a productive and fulfilling life. I would love to see the continued health care coverage of those with pre-existing conditions, like myself, as well as any other American in need of heath care to be a top priority for our Congress in this and coming years.

The CCFA and I urge you to support the following health care access priorities:

– Ensure stability by accompanying any repeal of the Affordable Care Act (ACA) with a viable replacement. For patients with IBD, any interruption in coverage can lead to worsened health outcomes and consequences like surgery to remove all or part of the bowel.

– Maintain basic patient protections and prohibit insurer discrimination against chronic disease patients. Basic patient rights include prohibiting discrimination against patients with pre-existing conditions, allowing young adults to stay on their parent’s insurance until age 26, limiting patient out of pocket spending, and prohibiting lifetime annual caps.

– Improve the quality of insurance plans. Patients with chronic diseases like Crohn’s disease and ulcerative colitis need to be able to access a range of treatments, services, and specialists in a timely manner in order to optimize their health outcomes. Many patients are subject to medical management protocols like step therapy that delay appropriate treatment. National health policies must require minimum coverage standards, guard against discrimination, and ensure access to transparent and expedient appeals processes.

The following agencies support critical research on IBD in local facilities across the country:

– National Institutes of Health (NIH), including the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
– Centers for Disease Control and Prevention (CDC) IBD Program
– Department of Defense Peer-Reviewed Medical Research Program

These agencies must be provided robust funding in the annual appropriations bills in order to advance IBD medical research that will lead to new and better treatments and cures.

Lastly please consider joining the bi-partisan Congressional Crohn’s & Colitis Caucus. With 76 members at the end of 2016, the Caucus works together to raise awareness in Congress about Crohn’s Disease and ulcerative colitis, support medical research, and protect health care access. Please contact the office of Representative Nita Lowey (D-NY-17) to join this important group.

Thank you for your consideration for the above health care priorities of the IBD community. I look forward to working with you this year to support patients with IBD and other chronic diseases.

Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.

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