Girls With Guts

@ibdgirls | partner
Nonprofit
The mission of Girls With Guts is to support and empower women with inflammatory bowel disease (Crohn’s disease & ulcerative colitis) and/or ostomies through the building of sisterhood and self-esteem. We've built a supportive community designed so that no woman will ever have to feel isolated by her disease.

It's OK to Be Angry About How IBD Has Changed Your Life

by Lizzie I am writing this blog in the dark. I have turned off all the lights in my apartment, I am wearing sunglasses, and I am angry. On the surface, I’d tell you that I’m angry because I have been dealing with a chronic migraine for the last six weeks that just won’t go away, despite the best efforts of one of my trusted doctors and me. But, in reality, my anger is much deeper than that, and began long before this chronic migraine came along. Really, I am angry about being chronically ill and the effects it has had on my life. My Crohn’s diagnosis arrived in 2018, over four years ago now. I found out in December that I am in remission, thanks to the biologic and immunomodulator that I’m taking. Don’t get me wrong, I have endless gratitude for my remission. I’m talking, “bring me to my knees in tears because I never thought this moment would happen” kind of gratitude. But my remission has also brought me something I didn’t expect: anger. While I dealt with the worst of my disease (so far, at least), I had a lot of fear. I feared never getting off steroids, I feared dying from an adrenal crisis (thanks to the adrenal insufficiency I developed as a result of long-term prednisone use), I feared never being able to eat foods I enjoyed again, and much more. I still have all those fears, but now that remission has brought me some sense of safety, I have started to process all that has happened to me at the hands of Crohn’s, its complications, and its comorbid conditions, and I am angry. I am angry that I dedicated myself to healthy habits as a teenager – swimming competitively, gardening, eating vegetables, walking, running – and still got sick with Crohn’s at age 22*. I am angry that I then followed all the advice of my many doctors to a tee, and still had to try multiple biologics and suffer through long-term steroid use before I finally got into remission. I’m angry that I have no idea how long remission will last, and that there are no guarantees. I’m angry that, throughout my Crohn’s journey, I have picked up an ever-growing collection of other chronic illnesses – fibromyalgia, IBS, depression, an eating disorder, adrenal insufficiency, OCD, PTSD, etc. To be fair, some of these issues existed undiagnosed before Crohn’s disease, but I am angry that my Crohn’s worsened my overall physical and mental health to the point that all of these conditions became severe enough to be blatantly obvious and debilitating. I am angry about all the endless ways I have adapted my life to fit my illnesses – everything from wearing sunglasses to use my computer, to never being far from a bathroom, to going to bed at 9 p.m., and so much more – only to still live with daily pain. I am angry that my physical limitations and societal ableism have negatively affected my career path, my finances, my relationships, my housing, and more. And don’t even get me started on the anger I have about being immunocompromised in this pandemic. I am angry that we live in a society that emphasizes individual responsibility for health, and that I have made every responsible choice that I had access to, and I am still sick. I am angry at myself, because “I must be doing something wrong, right?!” and “at least [insert the millions of things I have to be grateful for here].” I am angry at myself for being angry. My therapist tells me that it makes sense that I’m angry, that I have every right to be angry. I tell him it is hard to be angry when there is no one to blame for my suffering, no one directly responsible for all of this. He tells me to express my anger. I tell him I am furious with my body and want to punish it for all the pain it causes me. He asks me if fighting with my body is helping. I shrug. He tells me we can find other ways to express anger. I tell him I want to yell at him. He says that will be fine. We laugh. I reach out to my Girls With Guts friends. I tell them I am angry. We are all angry. We have all felt the devastating effects of IBD from a young age. We love each other, and we are angry when IBD hurts the people we love. We send angry text messages, cursing IBD, cursing pain, cursing insurance companies, cursing the pandemic, cursing policies that leave immunocompromised people in the dust, cursing bodies that take so much and give so little. I attend the weekly mental health treatment group I’m in, and this week we talk about anger. We talk about how, sometimes, anger can be a useful emotion. We talk about how anger can motivate us to advocate for changes, both for ourselves and for others. We talk about how shoving anger under the rug and pretending it doesn’t exist isn’t the same thing as dealing with anger. I think of how tired I am. I think, at first, that I am tired of my anger. But then I think that maybe what I’m really tired of is pretending that I am not angry. I wonder how much energy it is taking me to pretend that I have accepted the past, present, and future of my illnesses, sickness, and pain. I think that I will take my therapist up on his offer to yell at him a little during our sessions. I think I will keep talking to my Girls With Guts friends about anger. I think I will try to say, “This pain is absolutely infuriating” the next time someone asks me about my chronic migraine, instead of my usual, “It is what it is.” I think about what I could use my anger for. I think about all the Girls With Guts I know, who deserve to have their anger heard, validated, and responded to. I write this blog. I think it is a start. A start to me allowing my anger to exist. A start to me releasing the anger I keep trying to bury, and turning it into something useful. I think about how our anger connects us. How, as Girls With Guts, acknowledging our anger and using it to fight for more treatments, more inclusion, more accessibility, and more positive change is arguably the most powerful tool we have. *To be clear: no one deserves the pain and suffering IBD brings, and the exact causes of IBD are unknown. Even if you haven’t engaged in “healthy habits”, you do not deserve to suffer at the hands of IBD and you have a right to be angry about being sick.

How Therapy and Support Groups Can Help People With Crohn's and IBD

by Alyssa For as long as I can remember, I’ve struggled with anxiety. It had been fairly minor as a kid, but really ramped up when I got to my final year of high school. There’s already a ton of pressure put on you at that time – you’re made to believe that the rest of your life will be determined by a set of exams and your whole worth as a person comes down to how well you do. I was so terrified of disappointing anyone or not getting the marks for admission into the university courses I wanted that I started having panic attacks, mood swings, and really intense stomach cramps. I think it was probably at this point when I actually started to experience the beginning of what would become a diagnosis of Crohn’s disease five years later. The signs were there if you knew what you were looking at: really low iron, weight loss, and debilitating stomach cramps that would hit at all times of the day. I went to a GP about it, but it was put down to stress. I really believed that once the exams were over and I’d managed to achieve what I’d set out to, it would all get better. Perhaps unsurprisingly, it didn’t. I had the same problems at university. I kept the same pressure on myself at all times. If I didn’t get the grade I hoped for on a big assignment, I would cry until I vomited. It just wasn’t sustainable, so I reached out for help, still in the mindset that it was just stress and anxiety and if I fixed my brain, my body would get better. At the medical center on campus, I was linked with a mental health nurse, and with his help, I did make some progress. I was finally diagnosed with anxiety and depression. It did feel good to have a name for it, but at the same time, the roots of Crohn’s disease had sprouted in my body and were flourishing. By my final year of university, I was so sick with it that I could barely walk, had lost a huge amount of weight, and was struggling to keep any food in. My anxiety shot up again. I was trapped in a body that was failing me and I had no idea what was wrong with me. I genuinely thought I was going to die at the age of 21 when I barely felt I’d lived. Until I received the Crohn’s diagnosis in the January of the next year, there was nothing anyone could do to make my fear smaller. And then, of course, finding out I had an incurable disease just made it all worse. I spiraled, letting my anxious thoughts run away with me completely. Things only really started to change when I got up the courage to join some online groups for IBD. It probably sounds strange, but having people I’d never met from all over the world understand exactly what I was going through was so comforting. It also meant that there were others awake in the U.S. or the U.K. when I was stuck in the bathroom at 3 a.m. Just having someone to talk to during the low points was incredible. When I was ready to talk about it, I started going in person to the support groups and making friends with fellow Crohnies in my city. For a bit of further help, I tried to see a few different psychologists at that time, but I just didn’t click with them for one reason or another. I’ve found that that’s quite common and that it’s actually perfectly OK to break up with your therapist (or your specialist, for that matter). I met my current psych at an IBD conference. He was associated with a gastro clinic and had experience working with pain management for chronic diseases. After hearing him speak about the importance of providing mental health support to people with IBD, I sought him out and later went through my GP to make sure I got a referral to see him. Having a psych who understands Crohn’s and all it involves has meant that we can work specifically on those areas of difficulty for me. I’ve developed so many coping strategies and feel more prepared to take on whatever Crohn’s throws at me in the future. It’s been an absolute game changer and I can’t emphasize enough how important it is to keep tabs on your mental health when you’re dealing with a tricky beast like IBD. While therapy isn’t for everyone, there are so many other ways to get that support. The amazing women at Girls With Guts are a great starting point. Join groups and find ways to talk about how IBD impacts your life. The kindness of strangers across the world has meant that I’m held up during the hard times and have people who celebrate with me during the good times. Through trial and error, I’ve managed to find the combination of things that makes the weight of chronic illness a little bit lighter for me personally. You don’t have to do this on your own. It’s not only stress or anxiety and it’s not just in your head. Everything you feel while on this journey through chronic illness is legitimate and normal. The first step to improving my mental health was to realize those things. Look after you in whatever way you know how. You’ve got this.

Community Voices

Port!

<p>Port!</p>
Community Voices

Do you find that other body systems such as teeth, eyes, hair, etc. are impacted by either #CrohnsDisease or #UlcerativeColitis?

This month I have been impacted by dental issues. I have heard from other women with #InflammatoryBowelDiseaseIBD that malnutrition, medication side effects, etc. can impact their teeth.

Do you find that other body systems such as teeth, eyes, hair are impacted by either #CrohnsDisease or #UlcerativeColitis ?

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Community Voices

Difficult Conversations/Questions

This month on our social media channels, we have been thinking about how to confront some of the hurtful comments that we sometimes hear about #InflammatoryBowelDiseaseIBD For example, questions like "are you really that sick? You don't look sick" or comments about gaining/losing weight. I wanted to continue this conversation in this group.

When I get asked a question that is hurtful or shows a lack of education, I first try to advocate and provide more accurate information. However, if the questions or comments persist, I have to find a way to walk away from the conversation.

Walking away from these conversations can be difficult (even with almost 30 years of having #CrohnsDisease under my belt). One of the ways I have done this is to simply say, "I know we have talked about this before, and I am going to enjoy my time and not discuss it again."

Do you all have any other tips or tricks for how to deal with these types of questions?

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Self-care and the holidays!

This time of year is always so hectic I find that self-care can get lost in the shuffle. However, during busier times self-care is critical to decreasing stress and managing life's responsibilities. This weekend I made sure to take time for a bath to recharge after the recent holiday.

How are you all recharging?

#CrohnsDisease #InflammatoryBowelDiseaseIBD #UlcerativeColitis #Selfcare

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Caregiving: is it hard for you to ask for help?

This month is National Family Caregivers Month! Over at Girls With Guts, we are publishing blogs and posting on our social media channels about this topic, which has caused me to reflect on the many ways I receive care as a single woman living alone with #InflammatoryBowelDiseaseIBD .

I am blessed to have a close neighborhood community that has shown up for me recently. For example, I had a port placed and my neighbors took turns bringing me meals after the port was placed as the incisions healed. It took me a long time to learn how to gracefully accept help-- I thought that I had to take care of everything myself.

But, I realized recently that when others in my life are going through things I want to be there for them. So, why would I deny others the ability to be there for me?

In my reflections about receiving help and caregiving, I thought about this Mighty Community and wanted to ask you all about your relationship with the topic of needing care. Is it hard for you to ask for help?

Community Voices

Tips for cold and flu season?

I am getting over a cold this week and have found that being sick with my ostomy has meant that my #Ostomy output has gone up, and my baseline lethargy has increased significantly.

It seems like as I get older with IBD that it takes more for me to recover from these common viruses that we all experience from time to time. So, I spent the past week not doing much and just focusing on resting to get over the cold, but I wonder is there more I could be doing to help my body when I am sick? What tips and tricks do you all have when you have a cold?

#CrohnsDisease #InflammatoryBowelDiseaseIBD

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Community Voices

Happy World #Ostomy Day

<p>Happy World <a class="tm-topic-link ugc-topic" title="ostomy" href="/topic/ostomy/" data-id="5b23cea600553f33fe9996d7" data-name="ostomy" aria-label="hashtag ostomy">#Ostomy</a>  Day</p>