Hi! Although newly diagnosed, I'm thinking my story might provide an interesting perspective for some people on coping, diet, stress, medicine, and so forth. So, here we go. I am/have been:
- a pretty health-conscious, real-food loving vegetarian for most of my adult life (recently added fish again for omega-3s)
- a yoga and meditation practitioner/teacher (in addition to other work) who - although living in our often rough world and sensitive by nature - practices stress management and leisurely joy
- physically active and fit for pretty much all of life
That is to suggest, I've led a healthy lifestyle overall. Sure, I'm human and have had diet and activity slip-ups as well as times that were very stressful, and there's only so much one can do to limit environmental exposures, but you get the picture.
I'm in my mid 30s and, after what I now recognize as a bad flare (for which I was hospitalized), have been initially diagnosed with severe IBD that requires further testing/evaluation to determine if it's UC or Crohn's. At my colonoscopy, I had severe pancolitis and an extensive anal fissure that, well, let's just say drew a lot of warranted sympathy. Looking back, I've had issues with diarrhea since my teens, started noticing significant blood with/in my stool on and off since my teens, and am pretty sure I had a fissure that left a skin tag during a pretty rough time around 4-5 years ago. I also have had to manage a lot of fatigue and discomfort at times. Despite my usual health consciousness, I was super hesitant to tell anyone about it until my late 20s because, well, I just didn't talk about those things with people and wanted to seem like a sweet and desirable female (sigh). I did visit a gastroenterologist in my late 20s, who unfortunately was obnoxious and dismissive and did not even examine me.
So it basically appears that I've probably had the disease for 10-15 years and it has worsened to the point that it finally had to get my and a new - and fabulous - gastroenterologist's attention. I should add here that I'm on prednisone, cipro, and flagyl and recovering nicely right now despite some common side effects from the pred.
The interesting thing to me is that, while I'm just one case and we're all unique, I feel like my history provides a perspective on someone who leaves the disease untreated for a while but is on a good diet, tries to manage stress and relax, and generally leads a pretty healthy lifestyle. For me, the disease really increased in severity and intolerability.
Taking drugs involves weighing risks and benefits. For me, it seems pretty clear that, right now, the risks of not trying drugs are greater than the risks of the drugs, and that I also have a great physician who will help evaluate and monitor how I'm doing. We'll have to see how I do in terms of side effects and prognosis, as I'll just start tapering off the pred next week and will be started on another med, TBD. (I'm also trying to keep track of any personal trigger foods that increase symptoms and increasing my relaxation and rest.) I hope I'm one of the lucky ones who finds a drug that helps reasonably well for a long time with no or tolerable side effects. If not, I might feel like I'm choosing between the lesser of two evils in terms of dealing with issues with drugs vs. letting the disease potentially worsen while trying alternative approaches that don't clearly work for everyone.
But I have to say that I have some peace about it all from the perspective that life doesn't always give us what we think we want and we basically just have to sit with what's really there, roll up our sleeves, cope as best we can, and make the most of it using whatever resources we have within and around us. I just hope to make the most of whatever I can when and while I have it in life, and use illness to further cultivate self-care and compassion. Also, I have hope that additional treatment options will be discovered over the course of my lifetime.
I know I'm just starting out, but perhaps this could provide some fresh perspective to those who feel challenged in terms of all the drugs or who wonder if their big macs are an issue. (I have to say, the latter is a no brainer to me: A diet of big macs is not good for health. They're not helping anyone, IBD or not.) Sometimes we get so caught up in the web of our thoughts and feelings, or just can't see beyond terrible pain, that we need to hear other perspectives. I can't know what it's like to be in another's shoes, but I am pretty sure that there's no escaping that life isn't easy at times and we just do our best to cultivate resilience, be able to self-nurture, and find and be grateful for sources of meaning and fulfillment, no matter how small.
Wishing everyone peace and wellness. We'll see where this journey goes!
- a pretty health-conscious, real-food loving vegetarian for most of my adult life (recently added fish again for omega-3s)
- a yoga and meditation practitioner/teacher (in addition to other work) who - although living in our often rough world and sensitive by nature - practices stress management and leisurely joy
- physically active and fit for pretty much all of life
That is to suggest, I've led a healthy lifestyle overall. Sure, I'm human and have had diet and activity slip-ups as well as times that were very stressful, and there's only so much one can do to limit environmental exposures, but you get the picture.
I'm in my mid 30s and, after what I now recognize as a bad flare (for which I was hospitalized), have been initially diagnosed with severe IBD that requires further testing/evaluation to determine if it's UC or Crohn's. At my colonoscopy, I had severe pancolitis and an extensive anal fissure that, well, let's just say drew a lot of warranted sympathy. Looking back, I've had issues with diarrhea since my teens, started noticing significant blood with/in my stool on and off since my teens, and am pretty sure I had a fissure that left a skin tag during a pretty rough time around 4-5 years ago. I also have had to manage a lot of fatigue and discomfort at times. Despite my usual health consciousness, I was super hesitant to tell anyone about it until my late 20s because, well, I just didn't talk about those things with people and wanted to seem like a sweet and desirable female (sigh). I did visit a gastroenterologist in my late 20s, who unfortunately was obnoxious and dismissive and did not even examine me.
So it basically appears that I've probably had the disease for 10-15 years and it has worsened to the point that it finally had to get my and a new - and fabulous - gastroenterologist's attention. I should add here that I'm on prednisone, cipro, and flagyl and recovering nicely right now despite some common side effects from the pred.
The interesting thing to me is that, while I'm just one case and we're all unique, I feel like my history provides a perspective on someone who leaves the disease untreated for a while but is on a good diet, tries to manage stress and relax, and generally leads a pretty healthy lifestyle. For me, the disease really increased in severity and intolerability.
Taking drugs involves weighing risks and benefits. For me, it seems pretty clear that, right now, the risks of not trying drugs are greater than the risks of the drugs, and that I also have a great physician who will help evaluate and monitor how I'm doing. We'll have to see how I do in terms of side effects and prognosis, as I'll just start tapering off the pred next week and will be started on another med, TBD. (I'm also trying to keep track of any personal trigger foods that increase symptoms and increasing my relaxation and rest.) I hope I'm one of the lucky ones who finds a drug that helps reasonably well for a long time with no or tolerable side effects. If not, I might feel like I'm choosing between the lesser of two evils in terms of dealing with issues with drugs vs. letting the disease potentially worsen while trying alternative approaches that don't clearly work for everyone.
But I have to say that I have some peace about it all from the perspective that life doesn't always give us what we think we want and we basically just have to sit with what's really there, roll up our sleeves, cope as best we can, and make the most of it using whatever resources we have within and around us. I just hope to make the most of whatever I can when and while I have it in life, and use illness to further cultivate self-care and compassion. Also, I have hope that additional treatment options will be discovered over the course of my lifetime.
I know I'm just starting out, but perhaps this could provide some fresh perspective to those who feel challenged in terms of all the drugs or who wonder if their big macs are an issue. (I have to say, the latter is a no brainer to me: A diet of big macs is not good for health. They're not helping anyone, IBD or not.) Sometimes we get so caught up in the web of our thoughts and feelings, or just can't see beyond terrible pain, that we need to hear other perspectives. I can't know what it's like to be in another's shoes, but I am pretty sure that there's no escaping that life isn't easy at times and we just do our best to cultivate resilience, be able to self-nurture, and find and be grateful for sources of meaning and fulfillment, no matter how small.
Wishing everyone peace and wellness. We'll see where this journey goes!
