#IBDAwareness

[swojnowiak]

Thief

IBD - or really any chronic illness, is a thief. A thief of joy, of time, of self confidence,

Ulcerative Colitis and now Crohn’s Disease has stolen so much from me.

It’s stolen precious time I should have been spending with people I love - missing moments I’ll never get back. Important events with my family, nights out with friends, my son’s only 4K celebration. It was just a slide and a certificate, but I won’t get that back. I wasn’t there. I couldn’t stand there and wave to him as he smiled, couldn’t give him a big hug in that moment. It seems silly, seems like such a small thing. It wasn’t a small thing to me. I was laying in another hospital bed, cursing my body and feeling like it betrayed me again. I’m always waiting for the next complication. As soon as I’m standing out in the sun, finally feeling like I’m in a good place and have things under control, I trip and fall back into a pit of despair and find myself reaching up, trying to climb and pull myself back out - exhausted, defeated, and often a different person than I was before.

IBD has also stolen my self confidence. I feel shame with every humiliating exam in the doctor’s office or the hospital room - sometimes with more than one provider present. I look in the mirror now, with scars all over my abdomen. Reminders of both everything I’ve lost and everything I’ve overcome. This last time, I left with a drain that will most likely stay long term or forever. One I’ve been dreading for years. In the past I’ve had to adjust to an ileostomy bag that was eventually reversed. I’ve spent years adjusting to a new version of myself. As soon as I think I’m finally comfortable and confident with who I am again, IBD knocks me back down and puts me in my place. It’s the shadow lurking behind me always - the cruel voice telling me “nice try.” It can feel invisible to others. I can hide most of it. There are many other illnesses where the effects can’t be hidden, and I remind myself often of that. It still hurts.

IBD steals my joy. Joy I don’t want to lose. It becomes harder to feel it when I’m constantly reminded of this never ending battle. I’m mentally and physically completely exhausted by it. My kids give me joy, my husband gives me joy, flowers give me joy. Jesus gives me joy. I remind myself that they are still here, still with me. Jesus is always with me - and that won’t ever change. This world can be so cruel. It’s broken. My faith keeps me grounded, keeps me going.

Right now I’m still in the pit. I haven’t quite climbed back out yet. I know it’ll take some time, but I’ll feel the sun again. The light will shine on new parts of myself that feel foreign. It might illuminate things I’d rather not be reminded of. Somehow I’ll find that same resolve I’ve had all these years to keep going. I’ll take this as another lesson in patience, in empathy for the patients I care for, in gratitude for the family and friends I have and for my faith. It might sound cliché, but although IBD might be winning some battles, I can assure you it won’t ever win the war.

[cordeliatheodoro]

Things I learned over my 5 years as a chronically ill person:

Obs: I have some kind of illness that's similar to Chron's disease, but like, not as bad. It still impacts my life in more ways than I ever expected, including fucking up my liver and mental health. Anyway;

Eating the "wrong" thing is better than not eating - when you have an illness that affects your appetite, the best course of action, in my experience, is to eat what you feel like eating. If that means having a jar of cookies for lunch, it's completely fine. Eat what you know your body will accept, because that's better than not eating anything or having your body reject what you eat.

Body fat = healthy - this is specific to my case, but I was just skin and bones before getting the right treatment. Even if I might feel bad because beauty standarts, getting enough weight and body fat to the point I became a midsized person (after years of being a walking skeleton) is something that should be celebrated. It means I'm eating enough and my body is becoming healthier.

You gain a hell of a pain tolerance - remember how I said my liver is fucked up? It means whenever I take painkillers, my stomach becomes a rebelious teen and tries to kill me. A.K.A, nausea, and actually throwing up if the medicine is too strong. I've learned to endure pain in order to not need painkillers, or to only take them if it becomes too much.

Kiss many adult experiences goodbye - Taking more than two sips of alcohol is a no-no, and don't even thing about drugs. I'm always the sober friend, which is not bad per se, but I would like it more if it was a choice.

You will be known as the sick friend (if you're the only one in the group) - I got sick at 12/13 and only got treatment for it at 16, so high school was HellTM. Get used to people asking if you're feeling alright everytime time your face moves two milimiters, and to cancel plans because you're sick. It also makes flirting with your crush harder, because they might see you as fragile (seems like people don't find you sexy if they know you have intestine problems).

Antidepressants are not exclusive for people with depression - Did you know the intestines are considered the second brain? Anyway, I was prescribed antidepressants (that also work as anxiety medication) to help with my chronic illness, and honestly, it kinda works.

Hope is good but don't hope too much - sounds depressing, but at least in my case, seems to be true. Things get better, and with the right treatment, you'll have a good life and achieve yours dreams, and overcome many, many symptoms and difficulties. And I really don't like thinking about it, but I know that this is probably my case, and it's a fact: I will never be 100% healthy again. Not like how I was before.

You won't have all the answers you want - I have an illness that's names, in my mother language, as "Indeterminate". It means doctors are not able to know how it developed, why it developed, if there's a cure, and how to treat it. The treatment I went through can only be described as "fuck around and find out". So yeah, sometimes you just have to accept there are no answers.

Anyway, this was depressing as shit, but I needed to get it off my system. To all my chronically ill siblings: hold on tight! We can do it!

[athena-theunicorn]

Hi. I’m invisibly disabled and have a chronic illness and also mental illness so prepare for me to not stfu abt it this month because this shit is important.

[ucdiaries]

UC Diagnosis Anniversary

Its close to a year since my diagnosis, and looking back, I have no words. No words to describe the derailment that my life went through. No words to describe the grief that I am still processing. And no words to tell you how I feel.

I have achieved remission, yet life will never be the same. There will still be days I feel eternally exhausted, that I am in a never ending rut trying to catch up on everything I missed out, while more just gets added to the 'to-do' pile. The uncertainty has just increased by a 1000 times. The anxiety is immeasurable.

Half the days I keep gaslighting my symptoms tricking myself into believing that it is all in my head. Other days I wonder if its the disease or the medicines or both, that sends me into an anxious spiral or leaves my bones and joints hurting. Some days I appear totally normal, no one (including me) would even believe that I survive on the 8 tablets I swallow everyday. Other days, like today, I just want to curl up into a ball and go to sleep. Some days I force myself to take a break, read a book, crochet or go to sleep. On others, I am trying to keep my spirits high so I can meet my thesis deadlines.

I am tired of being sick. I am tired of complaining or telling someone "my joints hurt and I am exhausted". I am tired of the extra attention I get because of my illness. I am also tired of just being tired.

On days like these, all the affirmations and positive self-talk learnt in therapy isn't enough to drown out the critical voice that says, 'you just have to push through and keep going, that is the only way you survive and make something out of your life; the only way is to pick your self out of the gutter, bunch up all the pain and tears and emotions and throw it under the carpet'.

In 1.5 years of therapy I have learnt that throwing stuff under the carpet is never the solution. It comes to bite you in the back some day. But just for today I need a carpet. Better yet, a warm, fuzzy blanket. Except that I today I want to hide all of me, not just the emotional stuff, under it, and stay there until the physical and emotional rollercoaster of things passes by.

[drhitendrakgarg]

IBS and IBD are not the same. IBS is a functional disorder, while IBD is a serious inflammatory condition that needs medical treatment. . . . Schedule a consultation: Dr. Hitendra K Garg

📲 8920361841, 8920632657 📲 Follow us: @drhitendragarg Visit: www.drhitendrakgarg.com .

[livercaretreatment]

Early Signs and Symptoms of IBD You Shouldn’t Ignore

Inflammatory Bowel Disease (IBD), including Crohn’s disease and ulcerative colitis, can start subtly but progress quickly. Watch for these early signs:

🔹 Persistent diarrhea 🔹 Abdominal pain or cramping 🔹 Blood in stool 🔹 Unexplained weight loss 🔹 Fatigue 🔹 Urgency to have a bowel movement

Ignoring symptoms may lead to complications. If you experience these, consult a gastrophysician promptly for early diagnosis and treatment.

[vikashkumar7544]

🥦 CROHN’S DIET SURVIVAL GUIDE 🌱

You don’t need to suffer through flare-ups confused and alone. This article breaks down: 🍚 The foods that heal 🔥 The foods that hurt 🧠 How to log symptoms & track triggers ⚖️ How to balance nutrition and lifestyle 🔗 https://revisiontown.com/the-ultimate-crohns-disease-diet-guide-what-to-eat-and-avoid-for-flare-up-control/

[drjagveersingh]

Dr Jagveer Singh Choudhary - Best Gastroenterologist, Liver Transplant, Piles, Fistula treatment, Gallbladder

Dr. Jagveer Singh Choudhary is a distinguished clinician specializing in Gastroenterology. He completed his residency at the esteemed Institute of Medical Sciences, Banaras Hindu University, Varanasi. Dr. Choudhary received advanced training in Gastroenterology at Osmania Medical College and Hospital, Hyderabad, a renowned center of excellence in the field. With a commitment to evidence-based practice, he has successfully managed numerous patients with gastro and piles issues, demonstrating expertise in handling complex cases. For those seeking the finest gastroenterologist in Jaipur, Dr. Jagveer Singh Choudhary comes highly recommended.

[flaminghotcptsd]

“Metaphysical” Approach to Healing Chronic Pain etc?

Absolutely possible! Modern western “real doctors” with degrees working in hospitals have used the word “miraculous” to describe the remission of my Chron’s Disease.

What they call “impossible” becomes “miraculous” when it proves possible.

Others in online support groups call me every thing but a decent human for wanting to be better too. It’s obviously true that some people really do cling to their pain as much as it’s “wrong” to just say the obvious.

But I did not experience this “miraculous” level of healing until I started ignoring them, the doctors and the support groups, and sought other paths. Traditional Chinese Medicine has helped a lot and part of its help is that it offers simple but impactful shifts like eating according to your Chi.

The Chinese doctors are stunned at my progress too but not necessarily at the results of my healing; what they are stunned by is that I am actually willing to do the work. I’ve been told by multiple Chinese doctors across the WORLD now (I’ve moved a lot) that “white people never keep the diet, especially Americans”.

13 years ago it was otherwise predicted by “the real doctors” that I would have a colostomy bag to be alive by now but now I’m healthier than I’ve been since then and I haven’t had to have a colostomy afterall, as if I could ever afford it. When you’re this poor you just die. Doctors aren’t doing whatever to save everyone like on TV. Where those who have pensions and SSI get new tubes and bags, impoverished millennials with no families just die.

And in “the IBD community” I’m called ableist for not wanting a colostomy and for acknowledging that they are not accessible for all classes anyway. And for being happy with my self healing and believing that surely it’s possible for others like me? That’s hate speech in these online IBD support groups. Who/what are they really supporting? Seems like the disease itself more than those suffering with it.

You have to want it, you have to try and follow what feels right vs what the “official authority” deems should be correct, what is possible. And you have to learn to ignore others trying to tear you down along the whole way.

It’s not wrong to want to feel better. But honestly that was the common denominator I felt from all the “real people” who get to decide what’s possible for chronic illness, as opposed to “fake” like myself, like Chinese doctors etc.

The more I ignored the “real” people… from doctors to support group leaders alike, whose official authoritative advice was essentially just try to be more dignified and good humored as I suffer to the end (since I have never been in a position to afford the expense of GI surgery) and find ways to joke it off in the meantime …the more I have actually “miraculously” healed.

If you have IBD too and can relate to this post, to me and my desires to heal despite being told “to face reality” and “you’re ableist against yourself”, then you may (or not) be surprised at who is widely beloved and borderline famous among the IBD community who has been so discouraging toward healing, like on a one-to-one level resulting in online harassment and bullying at his behest. But when you build not just an identity and social media presence, but a brand and business on chronic illness (and a weird beard), it’s not that great for business to encourage people to truly heal on their own terms instead of listening to you and funding your new book, podcast, and international speaking tour.

This is the astro blog post that I am relating to:

[gastroenterologyucgconferences]

🚨 Don't Miss our Days 3 online Speakers Speech🚨 Join us for Day 3 of the 14th World Gastroenterology, IBD & Hepatology Conference is scheduled to take place from December 17-19, 2024, in Dubai, UAE. 🔗 Register today: https://gastroenterology.utilitarianconferences.com/discounted-registration

[creativecanva]

Ulcerative Colitis: Understanding, Managing, and Living with the Condition

Ulcerative colitis (UC) is a chronic inflammatory bowel disease (IBD) that affects the lining of the colon (large intestine) and rectum. It causes inflammation and ulcers, leading to uncomfortable symptoms that can disrupt daily life. While there’s no definitive cure, advancements in medical science have made managing the condition more effective than ever.

In this blog, we’ll explore ulcerative colitis in depth—its causes, symptoms, treatments, and how to live well with the condition. Whether you’re newly diagnosed or supporting someone with UC, this guide offers user-friendly, informative insights to navigate the challenges of this disease.

for more detail click on

[heterohealthcareofficial]

Join us this World IBD Day to break borders in care! IBD knows no boundaries, and neither should access to treatment. Together, let's ensure care reaches everyone. Take the first step with Mesarem

[livefitforever]

👉 IBS (Irritable Bowel Syndrome) is a functional disorder affecting the digestive system, characterized by symptoms like abdominal pain, bloating, and changes in bowel habits. It doesn't cause inflammation or permanent damage.

👉 IBD (Inflammatory Bowel Disease), including Crohn's disease and ulcerative colitis, is a chronic condition causing inflammation in the digestive tract, leading to more severe symptoms and potential complications.

🔍 Key Differences: IBS is a functional disorder, while IBD involves chronic inflammation. IBS symptoms are often manageable with lifestyle changes, while IBD requires ongoing medical treatment.

👩‍⚕️ Consult a healthcare professional for proper diagnosis and management if you're experiencing persistent digestive issues.

[drhitendrakgarg]

🤔 Crohn’s Disease vs. Ulcerative Colitis: What’s the Difference? Both are forms of Inflammatory Bowel Disease (IBD), but they affect your gut differently! 🩺🦠

🔍 Crohn’s Disease: Can affect any part of the GI tract from mouth to anus. 🔥 Ulcerative Colitis: Limited to the colon and rectum.

💡 Understanding the difference is key to effective management! 👉 Watch the reel to learn more! . . . Schedule a consultation: Dr. Hitendra K Garg

📲 8920361841, 8920632657 📲 Follow us: @drhitendragarg Visit: www.drhitendrakgarg.com

[ucdiaries]

A sliver of normalcy

I carry a diary with me that has my daily schedule. I glanced through the schedule today, and upon seeing it packed was frustrated about how much I have to do, and how tired I am already and how things are never getting over and the days pass so quick because I don't have a single moment of 'not doing anything'.

And then in a fleeting instant, I remember how 6 months ago, I was stuck in my bed. I was stuck in my bed almost every other day, because some part of me was hurting, and I couldn't get myself to work even if I wanted to. And all I could think of in those times, was when I would get back to a 'normal' life.

And the thought of it made me guilty for complaining today. And ungrateful - ungrateful for what I have now. A chance to live a slice of normalcy. And this is in spite of the fact that its just one of those busy weeks, and I am tired and I deserve a break from not using my brain constantly. But I still feel ungrateful for life giving me what I wanted six months ago. And in much more abundance than I had even wished. And I feel sorry for myself that I even have to debate this in my head, and keep shuttling between these two contrasting emotions. And try to make an effort to remind myself that I can feel both, and I can hold space for both. I feel sorry for what I went through, that my biggest wish through all of it, was a sliver of normalcy in life.