Finding Support

Purple & Yellow Flowers

No person, trying to take responsibility for her or his identity, should have to be so alone. There must be those among whom we can sit down and weep, and still be counted as warriors

Adrienne Rich, Sources


When you live with inflammatory bowel disease (IBD) – well, any chronic illness, for that matter – having a strong support system is just as crucial as dietary and lifestyle changes are for properly treating and managing the disease. Having IBD inevitably comes with a host of challenges and obstacles, and as a person with IBD, you know your own body better than anyone else. I do believe there’s a certain level of personal responsibility for one’s health that needs to be maintained. However, there also comes a time when you have to accept the fact that you’re only human, and you can’t (and shouldn’t) shoulder the burden all on your own. Your support system – whoever that may include, or whatever that may look like to you – will be able to provide not only physical support, but also mental, emotional, and spiritual support and guidance. In terms of IBD management, your family members, for example, can assist you with keeping a food diary, planning and preparing IBD-friendly meals, and maintaining your medication schedule. Your friends can also be a huge help for you by driving you to your doctor’s appointments, and serving as a source of motivation and encouragement. Support systems can help lighten even the heaviest load. Establishing open lines of communication with these individuals will ensure that you’re receiving the best physical and emotional care available. Learning to be more open, honest and comfortable with sharing your own story will also allow you to connect with other IBD patients who’ve overcome the same challenges that you have. They’ll likely be your best sources of support.

Mimi & Grandpa

Most of my support comes from my boyfriend. I’m so incredibly lucky to have found a guy who’s understanding of my disease. I’d literally be in crippling debt and living at home with my mom if not for his support. It’s impossible to support yourself when you’re in the middle of a flare

Given the fact that IBD is an invisible illness – one that’s seen only by the patient themselves – building and maintaining a solid support team of people who know you best is especially important for those who live with it every day. Speaking from personal experience, I’ve been blessed with an incredible support system over the years (I like to call them my “Prayer Warriors”): my parents, grandparents and other family members; my close circle of friends; my doctors and nurses; some of my former teachers and professors; my soccer and volleyball coaches and teammates; and my high-school counselors. They’ve gotten me through some of the toughest times, both physically and emotionally. Their love, compassion and support gave me something worthwhile to look forward to when nothing else could.

Peyton with a Flower

Having a strong support system has made things much easier, so I’ve been able to continue living in the state I love, with the person I love. I’m pretty lucky compared to other people

It’s understandable that you may be, at first, adamant about asking for and receiving help (believe me – I’ve been there, too). You may even feel ashamed of the disease and believe that no one else would ever be able to understand your point of view. I’m here to remind you that it’s okay to feel this way. It’s okay to feel lost and alone sometimes – especially, when you’re in the middle of a flare, or you’re having surgery or a procedure done, or you have to turn down invitations to social events because you’re not feeling well. Although I’ve been living with Crohn’s disease for 15 years now, even I still occasionally experience those same fears and doubts, which have a tendency to resurface for me during times of stress and anxiety. Fear lies and relentlessly tries to convince you that you’re somehow not good enough, and that your circumstances are never going to get any better. But, with a solid support system backing you up every step of the way, they eventually do. What previously seemed impossible doesn’t seem as daunting anymore, and you realize that anything is possible. Remember – there is no shame in leaning on other people during your time of need. In fact, it may very well be the one component that’s missing from your treatment plan.

Trust

My neighbor is also very supportive. I’ve even had accidents in front of her, and she still helps me out. I try not to complain and just go on with the kids, but I couldn’t do it without my support system! My cousin also has it, and she goes in and out of hospitals a lot, but luckily, I haven’t been hospitalized. We text almost daily

As I mentioned earlier, meeting others with IBD is a great way to take on a more proactive role in your disease management; it’s also a lot simpler than one may think. When you consider all the ways a person with IBD can support others – and receive support in return – it becomes much easier to see that you’re never alone in this fight. There are, quite literally, millions of people out there just like you. Shawntel Bethea, a columnist for the website, IBD News Today, said it best in one of her more recent articles, brilliantly detailing the numerous ways to connect with others living with IBD:

1. Start a blog

A great way to easily meet others living with IBD is to start a blog of your own. Sharing your story undoubtedly opens doors you never even knew existed. For me, personally, learning to be honest with people (and myself) has been the most freeing experience. During the first few years after my initial diagnosis in 2002, I did anything to keep my condition a secret, which I now know only hurts you in the long run. Today, I’m an open book, the exact opposite of how I used to be. There’s a lesson to be learned here – you can’t always change your circumstances, but you can change your mindset. In doing just that, I’ve come to find that there are more people out there than I thought who’ve either directly or indirectly been impacted by IBD.

Yellow Garden Flowers

2. Connect with other bloggers

I can think of a few fellow bloggers off the top of my head that are definitely worth mentioning: Danielle Walker at Against All Grain, who follows a Paleo diet to heal herself from ulcerative colitis; Erica Kerwein at Comfy Belly, whose son has Crohn’s disease (and whose Cinnamon Bun Muffins are to die for!); and Ali on the Run, who’s been such an inspiration for me in achieving my own health and fitness goals.

Vintage Picture Frames

3. Build a network

It’s often the most unlikely of people who become part of our social networks – even more so when that person has IBD. Of course, IBD’s an invisible illness, so you can never tell whether or not someone has it (unless they have a colostomy or ileostomy bag). This is just another reason why sharing your story with other people is so important. You never know who you’re going to inspire.

Sunny Cedar

4. Join a support group

Support groups are the perfect place to meet others with IBD. They’re typically more exclusive in nature, which allows for a more personal, more intimate source of connection. I’ve been living at home in Dallas, Texas, for the last couple of months, while I complete an internship with the Crohn’s & Colitis Foundation, North Texas Chapter. I recently started attending a local support group for adults, and it’s been a pretty interesting experience, considering the fact that I’d never attended any kind of support group before.

Additionally, there are many online IBD support groups on Facebook and other websites. I’m actually one of the moderators for “Breaking the Vicious Cycle: SCD Community” on Facebook, a support group for people who are following the Specific Carbohydrate Diet to heal their condition. This is a very welcoming and knowledgeable community of people who’ve taught me so much since I became a member over a year ago.

Garden Bench

5. Volunteer with an organization

The Crohn’s & Colitis Foundation has 40 chapters throughout the United States, and each chapter has a countless number of volunteering opportunities. Before I became an intern with the North Texas Chapter, I’d started attending the Foundation’s largest community fundraising walk, Take Steps for Crohn’s & Colitis, back in 2010. Since then, I’ve kept up with the organization through professional experiences, volunteering opportunities and various social media channels.

Red Hibiscus

 


Sharing Your Story

“My story started in 2014 when I was diagnosed with ulcerative colitis. It’s been an uphill battle ever since. It’s almost impossible to put on weight, and I’ve been in the worst flare of my life for the last three months. I’m waiting to hear from my doctor to see if I’m going to be starting either Remicade or Humira by the end of the month. I’d been on Apriso for the last three years, but I was never truly in remission according to my new GI doctor.

Most of my support comes from my boyfriend. I’m so incredibly lucky to have found a guy who’s understanding of my disease. I’d literally be in crippling debt and living at home with my mom if not for his support. It’s impossible to support yourself when you’re in the middle of a flare

Other team members are my parents, who’ve always been there for me when I needed them. My mom had her first colonoscopy in her 50s, so we can laugh about how awful they are together.

Having a strong support system has made things much easier, so I’ve been able to continue living in the state I love, with the person I love. I’m pretty lucky compared to other people.”

Lotus Flower

“I was diagnosed two years ago, immediately got pregnant and was in remission, so it was easy. About four weeks after giving birth, I went into a terrible flare. Then, about eight weeks after giving birth, I was already down to my pre-birth weight. Thankfully, my husband is amazing, along with my mom. My mom lives only a few miles away, so when my husband is working, and I’m in a flare and can’t take care of my daughter, she takes care of her.

My place of work is very supportive. I’m on FMLA, so if I have a doctor’s appointment or a Remicade infusion (I started infusions 12 weeks after my daughter was born), they don’t count things against me. So, I go in and out of flares not so much with specific foods, but with stress, which is a huge trigger for me. My husband now doesn’t even care if I go to the bathroom in front of him. He always says, “It’s just a part of you.”

My neighbor is also very supportive. I’ve even had accidents in front of her, and she still helps me out. I try not to complain and just go on with the kids, but I couldn’t do it without my support system! My cousin also has it, and she goes in and out of hospitals a lot, but luckily, I haven’t been hospitalized. We text almost daily.”

Lotus Flower

“My son is a teenager who follows the Specific Carbohydrate Diet (SCD). As a toddler, he had many ear infections and was on antibiotics continuously for six months at one point. He then got tubes put in his ears, and life got better. He’s had some issues with constipation for many years. There was a time when he started complaining of GERD-like issues and was told to start taking a stomach acid reducer, which he did, and it worked. A few weeks after that, he started having abdominal pain. He then had a skiing accident sometime after that, which seems to have triggered a precipitous downfall in his intestinal health. Through scopes and MRIs, doctors were able to figure out what was going on, and he was put on Pentasa, which was marginally effective. When this eventually stopped working for him, he was put on oral enteral nutrition (Boost+ protein shakes). His diet also consisted of about 10% puréed or soft foods on the SCD intro diet. This new nutrition regimen was supposed to be for 12 weeks. We were told he’d be feeling better within a week, and that the diarrhea would be gone within a month. Both were true! He last 10 weeks on enteral nutrition, but then stopped, as he couldn’t drink another Boost+. Then he was put on SCD, all while still taking Pentasa throughout the transition. This all worked like a miracle. He’s now well on his way to being as healthy as can be. We’re hoping to eventually drop Pentasa altogether.”

Lotus Flower

“I’m 34 years old, and I have ulcerative colitis (UC). I was diagnosed in 2014 when I was pregnant with my daughter. It was very hard to be pregnant, and receive such a horrible and scary diagnosis. You can’t even let yourself be nervous or cry. You’re always mindful of the fact that you have a growing baby in your body. It was about a year after my diagnosis that I found a course of treatment that works for me. I actually have a food blog now! I want to take what I’ve learned from my own experiences with UC, and be of use and support to other people.”

Lotus Flower

“I was diagnosed with UC 10 years ago, but had very mild symptoms that would happen only occasionally. Things progressively got worse around mid-2014, and aside from tapering off of prednisone a couple of times, I was in a pretty bad flare from then until I started making dietary and lifestyle changes. The doctor wanted to put me on 6-MP, but I drew the line at immunosuppression – at least, if I had the choice to avoid it.

When I started an elimination diet to find my trigger foods, I did have a couple of bad relapses and had to go back to the drawing board, but I’m finally piecing it together. I’ve (reluctantly) learned that red meat and dairy products are problematic for me (for now, anyway), and it’s taken me awhile to sort out what probiotics and multivitamins work best for me, but I’m there now and incredibly happy with the results.

In my case, the ‘pillars’ of my practice – those key components to healing myself that I could never live without – are: my wife, who’s incredibly helpful and supportive; the dietary and lifestyle changes I’ve made; and probiotics and other supplements. To be honest, at the moment, I wouldn’t say my doctor is one of the key components in my healing regimen, but I am hoping to one day add a health professional to this list. I think it could be informative, eye-opening and inspirational to see what others consider to be their pillars.

Thank you for reading this far, and all the very best to you in fighting the good fight.”

Lotus Flower

“I’ve been treating and managing my disease for a year now, thanks to the changes I’ve made to my diet. Never did I think I could do it at all, let alone for this long. I’ve been in a mild flare for awhile now though, so I’m thinking about sticking with just the basics for a few weeks and slowly add in one thing at a time to see if I have a reaction. It’s difficult because it doesn’t immediately hit me, so I can never pinpoint what it is. So, I’m thinking about eating only chicken, cooked vegetables, bananas, and use only salt, pepper and extra virgin olive oil to season my food. You know, just keep thing very simple for now until I’m symptom-free and can start adding in one new food every week.”

Lotus Flower

“I’m relatively new to the world of Crohn’s. Long story short, after my husband was deployed to Africa, he started having food-poisoning symptoms – constant vomiting, weight loss and pain in his lower right side. We went through a series of tests after he started feeling unwell. He ended up having a pill camera get stuck for a month and had to have it removed, along with about 50 centimeters of his small intestine. He’s receiving great care, but they keep urging for him to go on Humira. The biopsy came back, and they confirmed that it’s Crohn’s disease. We’d originally thought his illness was something he’d contracted while he was in Africa, like small-bowel tuberculosis. Right now, we want to completely overhaul his diet and pray that he can stay off medication.”

Lotus Flower

“I was diagnosed 23 years ago with a mild flare after giving birth and having a stressful job. I was treated by my physician with Rowasa for rectal inflammation and bleeding for about four months. The side effects of the medication were as painful as the disease. I didn’t make the dietary connection back then, but the symptoms subsided for approximately eight years. 

During the onset of the second flare, I sought out an holistic herbalist and auricular therapist, who treated me with Chinese herbs for about six months until the flare subsided. I’d made only minor changes to my diet as well, but I still wasn’t making the connection, and no practitioner would ever point it out.

Over the next 10 years, I did experience some minor flare-ups that were treated with Chinese herbs and acupuncture, but I still hadn’t made any changes to my diet. In 2014, I experienced another flare and was seen by an acupuncturist who prescribed a few other different Chinese herbs, as well as a low-residue diet. My symptoms only continued to get worse over a six-month period, so I went to a gastroenterologist. After a colonoscopy, I was diagnosed with severe left-sided ulcerative colitis. I was prescribed prednisone, Lialda and Uceris. I still hadn’t made the dietary connection yet, but my symptoms did get better over time, so I eventually stopped taking the medications. It was three months later that another flare started with rectal bleeding, increased urgency and pain, constipation and diarrhea. I was, again, placed back on the same medications, but after three months, I’d still never found complete relief from my symptoms. During the worst part of the flare, I was housebound, due to a three-month bout of severe diarrhea. The only foods I was able to keep down were bone broth and small sips of tea. I’d lost 40 pounds over that three-month period, resulting in fatigue and weakness, hair loss, and feelings of doubt and despair.

It was during this time that I began to do more research into UC symptoms and treatments. That was when I discovered the GAPS diet and the Facebook page for the IBD support group. Through the guidance and support put forth by this group, as well as [Breaking the Vicious Cycle], I learned what dietary changes were necessary to help my body heal itself. Most importantly, I didn’t want to take medications long-term, and although it was, initially, a scary thought to stop taking them, they were ineffective. I was able to wean myself off of all medications over a three-month period. With the suggestions made and advice given in the support group, I was able to help my body repair and strengthen itself through dietary changes, along with other herbs and supplements.

I informed my doctor of the holistic approach I was taking and my decision to wean off the medications. Fortunately, she was very supportive of my self-healing treatments; in fact, she’d mentioned she actually had another patient who was treating herself the same way. To be honest, I was a little annoyed that she knew of this patient’s success, yet had never made any kind of suggestion to me in regards to dietary changes. Interestingly enough, the lobby in the doctor’s office displayed a book about the dietary management of IBD. Still, during our appointments, she’d never mentioned that this was even a possibility.

Long story short, the holistic approach – dietary changes and all – have been a tremendous help for me in fighting this disease, one that entails both physical and emotional ramifications for all of us who suffer from it (not to mention, our family and friends). I’ve been very fortunate to have a very supportive husband and family during my worst flares. They’ve put up with my having to abandon social events, due to my symptoms. IBD doesn’t just affect you; it affects the entire household.

You’d think that, knowing how diet impacts UC, you’d never even consider going back to your old dietary habits. Well, unfortunately, here I am again, nearly two years later, in a moderate flare. The thing is, is that some of the previous dietary and supplement changes I used during my last flare haven’t been effective this time around. But I will soldier on, with little whining about it all, and accept that this was, in part, due to complacency on my end.

I am thankful, though, for the lessons learned and the gradual improvements I continue to see every day. I realize that these dietary changes I’ve made are not some fad; they’re a way of life, the only way of life for me.  I recently started working with a nutritionist, who has a family member with UC, and her guidance has been extremely helpful as well. If it weren’t for good insurance coverage, I could never have afforded to be treated by her. Many people can’t afford an holistic practitioner or any kind of specialist, which makes the guidance and support of the UC Facebook page so valuable. These folks understand, have lived your misery with this disease, and have invaluable knowledge and experience in holistic treatments. There was a time during my flare two years ago that I thought I’d surely die from the lack of ability to eat or drink anything. They gave me the strength to persevere and push through the painful days, hours and minutes. I’m eternally grateful and believe this group has helped me to have a better quality of life.

Putting all of this down in writing is cathartic and makes me more mindful that, despite a current flare and a lack of ability to eat more than bone broth and Jell-O at this time, I do have the knowledge and ability to heal myself, and that I need to continually be thankful that I’m not worse off. I try my best to support others in the Facebook group, and pay it forward, using the knowledge and encouragement I’ve gained over the past few years. We all need a helping hand sometimes.”

Lotus Flower

“My story begins in December 2002, right around Christmas Day. My family and I were on our way to a Christmas program at our church one night, and it was actually my mom who first noticed my appearance – how pale I was, and how much weight I’d lost. Having always been naturally thin growing up, I hadn’t even noticed, so I didn’t think anything of it until I started getting sick and had to go to the doctor. That was when he diagnosed me with Crohn’s disease. I was 10 years old at the time.

I remember thinking, ‘What’s Crohn’s disease?’ I thought it was similar to having a cold or the flu – you just take a pill, wait it out, and then you’re all better. I had no idea that I’d have this disease for the rest of my life. There were times when things got tough – especially, when I’d have to go to doctor’s appointments, take medications and have procedures done, while none of my friends had to deal with any of that. I had my first surgery last year, and today, I’m free of medications and feeling the best I’ve ever felt! 

Over the years, I’ve had to become more accepting of life with Crohn’s disease, redefine what’s “normal” and use my own experiences to help others just like me. I’ve also had such an incredibly strong support system – my family, friends, and even my teachers and professors. They’ve always been there for me, making sure I was feeling well and eating enough. I don’t know what I’d do without them in my life. It’s because of their love, encouragement and support that my health has improved, and that I’ve been able to attend (and graduate from!) college.”

Lotus Flower

If you or a loved one has IBD, and you’d like me to share your story on my blog, or if you just need someone to talk to, I’m always here. You can email me at brittanee.pless4031@gmail.com or find me on Facebook, Instagram and Twitter. I’d love to connect with you!

 

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