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To learn how similar fiber is to garbage trucks, check out a clip from one of my recent vlogs. In the full vlog I provide my diet tips for people with PSC + IBD. *
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#psc #primarysclerosingcholangitis #invisableillness #invisibleillness #bile #fiber #ibd #pscpartners #inflammatoryboweldisease #ulcerativecolitis #colitis #cholangitis #liverdisease #livertransplant #liver #vlog #pscnutrition
To learn how similar fiber is to garbage trucks, check out a clip from one of my recent vlogs. In the full vlog I provide my diet tips for people with PSC + IBD. * * If you’re interested in receiving my weekly vlog, DM me your name and email address (I only email once per week). * * * #psc  #primarysclerosingcholangitis  #invisableillness  #invisibleillness  #bile  #fiber  #ibd  #pscpartners  #inflammatoryboweldisease  #ulcerativecolitis  #colitis  #cholangitis  #liverdisease  #livertransplant  #liver  #vlog  #pscnutrition 
Blog post about my liver transplant journey up now over @ https://fightmacfight.wordpress.com/2018/07/13/the-start-to-a-new-life/

#FightMacFight #posttransplant #postlivertransplant #PrimarySclerosingCholangitis
The last two days rounded out our trip nicely.

On Wednesday we met with the insurance specialist, our transplant coordinator, and an Anesthesiologist.

On Thursday we met with an Infectious Disease doctor and our Social Worker.

General consensus is that Reid is a great candidate for a living donor transplant. We will, however, have to wait for the results of an ERCP that his doctor in Houston will perform to hopefully get more information on the potential cholangiocarcinoma. Fortunately we have an excellent relationship with his doctor here and he has squeezed us in to his first available date for the ERCP (which is still two weeks away). We don't expect to hear anything from Cleveland until we have those results, which may take another two weeks. So more waiting, but at least we have a direction forward and we feel so confident in the Cleveland Clinic and their abilities to perform the living donor transplant.

We are headed home today, and Sunday we'll be going to Alabama to get another opinion from a transplant surgeon there that we were put in touch with (we are taking the "exhaust all options" recommendation very seriously). We are so fortunate to have had some amazing friends step up and offer to be tested for living donor. We will be sharing more information on that process soon.

Thank you all for the thoughts and prayers!

#livertransplant #pscawareness #primarysclerosingcholangitis #supportsystem #expectmiracles #impatientlywaiting #gratefulheart #livertransplantevaluation
The last two days rounded out our trip nicely. On Wednesday we met with the insurance specialist, our transplant coordinator, and an Anesthesiologist. On Thursday we met with an Infectious Disease doctor and our Social Worker. General consensus is that Reid is a great candidate for a living donor transplant. We will, however, have to wait for the results of an ERCP that his doctor in Houston will perform to hopefully get more information on the potential cholangiocarcinoma. Fortunately we have an excellent relationship with his doctor here and he has squeezed us in to his first available date for the ERCP (which is still two weeks away). We don't expect to hear anything from Cleveland until we have those results, which may take another two weeks. So more waiting, but at least we have a direction forward and we feel so confident in the Cleveland Clinic and their abilities to perform the living donor transplant. We are headed home today, and Sunday we'll be going to Alabama to get another opinion from a transplant surgeon there that we were put in touch with (we are taking the "exhaust all options" recommendation very seriously). We are so fortunate to have had some amazing friends step up and offer to be tested for living donor. We will be sharing more information on that process soon. Thank you all for the thoughts and prayers! #livertransplant  #pscawareness  #primarysclerosingcholangitis  #supportsystem  #expectmiracles  #impatientlywaiting  #gratefulheart  #livertransplantevaluation 
Going on a hike or walk in nature (like Muir Woods national forest) is a great way to relax. It was SO calming walking through, listening to the chirping of the birds, and the soft sound of wind blowing the leaves far above our heads. I wonder if anyone was startled by me belting out, “...from the redwood forest, to the Gulf Stream waaaaterrs, this land was made for you and meeeeee!” 🤣 oddly, no one joined in. *
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#ibd #ibs #psc #spoons #relax #calm #sing #muirwoodsnationalpark #singing #walk #hike #redwoodforest #colitis #chrohns #staycalm #ulcerativecolitis #spoonie #crohnsdisease #autoimmune #primarysclerosingcholangitis
Going on a hike or walk in nature (like Muir Woods national forest) is a great way to relax. It was SO calming walking through, listening to the chirping of the birds, and the soft sound of wind blowing the leaves far above our heads. I wonder if anyone was startled by me belting out, “...from the redwood forest, to the Gulf Stream waaaaterrs, this land was made for you and meeeeee!” 🤣 oddly, no one joined in. * * * * #ibd  #ibs  #psc  #spoons  #relax  #calm  #sing  #muirwoodsnationalpark  #singing  #walk  #hike  #redwoodforest  #colitis  #chrohns  #staycalm  #ulcerativecolitis  #spoonie  #crohnsdisease  #autoimmune  #primarysclerosingcholangitis 
Day 10 - still on a soup diet, laying around in bed with pain. **update - Dr.Kid called me yesterday to check in. I think he assumed I’d be better and he could say ‘I told you so’ but my unresolved pain and ‘I’m planning on finding a new doctor’ may have sparked his newfound interest in having me back in today for a full blood work up. I’ll take it 👍🏼 #spoonie #spoonielife #invisibledisease #exhaustion #inflammatoryboweldisease #ibd #ulcerativecolitis #pancreatitis #primarysclerosingcholangitis #endometriosis #whatdoihavetodo
Day 10 - still on a soup diet, laying around in bed with pain. **update - Dr.Kid called me yesterday to check in. I think he assumed I’d be better and he could say ‘I told you so’ but my unresolved pain and ‘I’m planning on finding a new doctor’ may have sparked his newfound interest in having me back in today for a full blood work up. I’ll take it 👍🏼 #spoonie  #spoonielife  #invisibledisease  #exhaustion  #inflammatoryboweldisease  #ibd  #ulcerativecolitis  #pancreatitis  #primarysclerosingcholangitis  #endometriosis  #whatdoihavetodo 
At Coronado Beach with my wonderful daughter. Aaahhh. .... life is good!!! #beachlife  #lifeisgood  #lifeafterlivertransplant #sunandsurf  #primarysclerosingcholangitis
Yesterday was a very reassuring day for us! We had 7 appointments over the course of the day.

Reid had a Chest x-ray, EKG, and an Echo. Then we met with a nutritionist, a pharmacist, the transplant surgeon, and a dermatologist.

Meeting with the transplant surgeon was a nice surprise (it wasn't originally on our schedule). He is the head of the living donor program, so we got to talk with him at length about the program and ask all our questions. He thinks Reid is a great candidate for a living donor transplant, but agrees we have to get to the bottom of the potential cholangio first. He was really able to put our mind at ease about some of the living donor process, and we feel like we're making some real progress.

For the first time in the last couple of months, I've felt more at ease with where we are and the steps that we're taking. Let's hope that continues!

Oh, and of course Reid had to watch the game in between appointments! 
#livertransplant #pscawareness #primarysclerosingcholangitis #impatientlywaiting #transplantevaluation @clevelandclinic
Yesterday was a very reassuring day for us! We had 7 appointments over the course of the day. Reid had a Chest x-ray, EKG, and an Echo. Then we met with a nutritionist, a pharmacist, the transplant surgeon, and a dermatologist. Meeting with the transplant surgeon was a nice surprise (it wasn't originally on our schedule). He is the head of the living donor program, so we got to talk with him at length about the program and ask all our questions. He thinks Reid is a great candidate for a living donor transplant, but agrees we have to get to the bottom of the potential cholangio first. He was really able to put our mind at ease about some of the living donor process, and we feel like we're making some real progress. For the first time in the last couple of months, I've felt more at ease with where we are and the steps that we're taking. Let's hope that continues! Oh, and of course Reid had to watch the game in between appointments! #livertransplant  #pscawareness  #primarysclerosingcholangitis  #impatientlywaiting  #transplantevaluation  @clevelandclinic
This girl right here has helped us more than she knows, and we just met in person for the first time last night! Tish is a Nurse Practitioner for Cleveland Clinic. She saw our post that was shared on social media about Reid's potential bile duct cancer and needing a liver... And she reached out to help. We hadn't considered Cleveland Clinic, but she put us in touch with the right people and has continued to check in on us. And now we have another friend in Cleveland! We're so greatful (I mean, even my hat says so) for her friendship and selflessness in reaching out!

We're also so grateful for everyone who has been sharing our information. Connections like this wouldn't be possible without you all! You never know who it can reach. 
And one more thing... I'm loving this hat that @iyboutique made for me. It's a good reminder to be grateful for all that we do have! She took my idea and turned it into a super cute hat!

#livertransplant #pscawareness #primarysclerosingcholangitis #supportsystem #expectmiracles #impatientlywaiting #gratefulheart #transplantevaluation #transplantjourney
This girl right here has helped us more than she knows, and we just met in person for the first time last night! Tish is a Nurse Practitioner for Cleveland Clinic. She saw our post that was shared on social media about Reid's potential bile duct cancer and needing a liver... And she reached out to help. We hadn't considered Cleveland Clinic, but she put us in touch with the right people and has continued to check in on us. And now we have another friend in Cleveland! We're so greatful (I mean, even my hat says so) for her friendship and selflessness in reaching out! We're also so grateful for everyone who has been sharing our information. Connections like this wouldn't be possible without you all! You never know who it can reach. And one more thing... I'm loving this hat that @iyboutique made for me. It's a good reminder to be grateful for all that we do have! She took my idea and turned it into a super cute hat! #livertransplant  #pscawareness  #primarysclerosingcholangitis  #supportsystem  #expectmiracles  #impatientlywaiting  #gratefulheart  #transplantevaluation  #transplantjourney 
Yesterday was a good day! Sometimes I struggle with being here and needing to go through these steps for my 32 year old husband. It's just so crazy. We look around and there is not a single other patient our age or even close to it.

People look at Reid and think he's perfectly healthy. But he's not. One person even asked if he was here to be a living donor for someone else. 
We started the morning with blood work - a record 29 vials! (I'm a little upset that Reid didn't take a picture of the vials to document that moment)

We then had a Transplant Education Class - our 4th during this journey. But this one was 3 hours long and full of lots of good information. They included presentations from a patient who is post-transplant, and his caregiver (his wife). I spent the entire time choking back tears as they discussed how hard this process can be and how important it is to have good support. I long for the day when Reid and I can share our story from the other side (well crap, now I AM crying). We finished the day by meeting with a Gastroenterologist. She talked with us at length about potential cholangiocarcinoma (bile duct cancer), and how we need to get to the bottom of that. She wants Reid to do some additional testing when we get back home (I'll elaborate more later as to why we have to do that at home), and hopes that will give us more information as to whether the cancer is there. She thinks either way he will be a good candidate for a living donor transplant, but we have to get to figure out whether the cholangio is there first because that could change his protocol. Which is good that she wants to get to the bottom of it, unfortunately it will be more waiting.

Overall, it was a good day. Reid said he already feels more encouraged from this evaluation than any of the others we've been through. So let's hope this will help us get him a new liver soon!

#livertransplant #pscawareness #primarysclerosingcholangitis #impatientlywaiting #transplantevaluation #expectmiracles
Yesterday was a good day! Sometimes I struggle with being here and needing to go through these steps for my 32 year old husband. It's just so crazy. We look around and there is not a single other patient our age or even close to it. People look at Reid and think he's perfectly healthy. But he's not. One person even asked if he was here to be a living donor for someone else. We started the morning with blood work - a record 29 vials! (I'm a little upset that Reid didn't take a picture of the vials to document that moment) We then had a Transplant Education Class - our 4th during this journey. But this one was 3 hours long and full of lots of good information. They included presentations from a patient who is post-transplant, and his caregiver (his wife). I spent the entire time choking back tears as they discussed how hard this process can be and how important it is to have good support. I long for the day when Reid and I can share our story from the other side (well crap, now I AM crying). We finished the day by meeting with a Gastroenterologist. She talked with us at length about potential cholangiocarcinoma (bile duct cancer), and how we need to get to the bottom of that. She wants Reid to do some additional testing when we get back home (I'll elaborate more later as to why we have to do that at home), and hopes that will give us more information as to whether the cancer is there. She thinks either way he will be a good candidate for a living donor transplant, but we have to get to figure out whether the cholangio is there first because that could change his protocol. Which is good that she wants to get to the bottom of it, unfortunately it will be more waiting. Overall, it was a good day. Reid said he already feels more encouraged from this evaluation than any of the others we've been through. So let's hope this will help us get him a new liver soon! #livertransplant  #pscawareness  #primarysclerosingcholangitis  #impatientlywaiting  #transplantevaluation  #expectmiracles 
Living in the waiting zone is a tough place to be! 🙆🏼‍♀️ Check out today’s blog for @donordudes 👉🏼 https://chrisklugfoundation.org/blog/the-waiting-zone 👈🏼 where I share a personal update on where I’m at in the transplant process, as I wait for a life-saving liver. 🙏🏼 I discuss all of the work and waiting that surrounds transplant and the varying emotions along the way. ❤️ In the meantime, Noah and I are going to continue to hold on tight to one another, with the hope that healthier days are in sight! ❤️
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#caregiver #patient #unconditionallove #psc #primarysclerosingcholangitis #liver #transplant
Living in the waiting zone is a tough place to be! 🙆🏼‍♀️ Check out today’s blog for @donordudes 👉🏼 https://chrisklugfoundation.org/blog/the-waiting-zone 👈🏼 where I share a personal update on where I’m at in the transplant process, as I wait for a life-saving liver. 🙏🏼 I discuss all of the work and waiting that surrounds transplant and the varying emotions along the way. ❤️ In the meantime, Noah and I are going to continue to hold on tight to one another, with the hope that healthier days are in sight! ❤️ • • #caregiver  #patient  #unconditionallove  #psc  #primarysclerosingcholangitis  #liver  #transplant 
The best lunches are loaded with greens! Shredded kale base with leftover baked zoodles from last night, rainbow chard stalks sautéed in rendered bacon fat(😃), a small piece of Pacific cod (@krogerco brand), and a spoonful of beet kraut for good measure. Oh, and some good company (swipe to see my favorite friend/partner in crime, Maisy).
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#aip #aipdiet #aiprecipes #aippaleo #autoimmunepaleo #autoimmuneprotocol #paleo #jerf #foodismedicine #collegefoodie #paleocollegestudent #salad #saladbowl #saladgoals #iChooseToBeWell #eatlocal #ulcerativecolitis #primarysclerosingcholangitis #hashimotos #germanshorthairedpointer
The best lunches are loaded with greens! Shredded kale base with leftover baked zoodles from last night, rainbow chard stalks sautéed in rendered bacon fat(😃), a small piece of Pacific cod (@krogerco brand), and a spoonful of beet kraut for good measure. Oh, and some good company (swipe to see my favorite friend/partner in crime, Maisy). • • • #aip  #aipdiet  #aiprecipes  #aippaleo  #autoimmunepaleo  #autoimmuneprotocol  #paleo  #jerf  #foodismedicine  #collegefoodie  #paleocollegestudent  #salad  #saladbowl  #saladgoals  #iChooseToBeWell  #eatlocal  #ulcerativecolitis  #primarysclerosingcholangitis  #hashimotos  #germanshorthairedpointer 
Yesterday morning my #travelanxiety was real, but it ended up being a pretty good travel day. Since Reid was hospitalized last year, and listed for transplant, my anxiety is crazy when we fly or travel too far from our hospital and doctors in Houston.

Fortunately we made it to Cleveland, and we are looking forward to meeting with the Cleveland Clinic this week.

We are praying this is our answer to a living donation option, and that they will list him with their program so we can start that process. Living donation is not the best option for him, but it's better than having a cancer spread through his bile ducts. So we'll grasp any straw we possibly can.

I'm anxious and nervous and excited, but it's just a bit surreal that we're on yet another adventure to fight for a new liver for my husband. All good thoughts and prayers are much appreciated this week!

#livertransplant #organdonation #waiting #primarysclerosingcholangitis #pscawareness #impatientlywaiting #expectmiracles #gratefulheart #organdonorsarelifedonors #donatelife @clevelandclinic @reid.gray
Yesterday morning my #travelanxiety  was real, but it ended up being a pretty good travel day. Since Reid was hospitalized last year, and listed for transplant, my anxiety is crazy when we fly or travel too far from our hospital and doctors in Houston. Fortunately we made it to Cleveland, and we are looking forward to meeting with the Cleveland Clinic this week. We are praying this is our answer to a living donation option, and that they will list him with their program so we can start that process. Living donation is not the best option for him, but it's better than having a cancer spread through his bile ducts. So we'll grasp any straw we possibly can. I'm anxious and nervous and excited, but it's just a bit surreal that we're on yet another adventure to fight for a new liver for my husband. All good thoughts and prayers are much appreciated this week! #livertransplant  #organdonation  #waiting  #primarysclerosingcholangitis  #pscawareness  #impatientlywaiting  #expectmiracles  #gratefulheart  #organdonorsarelifedonors  #donatelife  @clevelandclinic @reid.gray
MY GRANDMOTHER & CROHNS | 📍

This woman has been through the worst 6 months imaginable. Not only did she lose her husband, but she was recently diagnosed with Crohns Disease at the age of 85. 📍

Up until this point, she has been relatively active and had been suffering from diverticulitis, as well as beating breast cancer 15 years ago... thankfully, it never returned. 📍

She now gets treated by my gastroenterologist and is on 6 weekly infliximab, which I've assured her is not a hospital trip that is too overwhelming in comparison to a colonoscopy and that dreaded Bowel Prep. In 2 weeks time, we have our first appointment together with our gastro. 📍 
Although, I hate that this has happened to her, I'm comforted knowing we now have each other,  can share our IBD stories and we are never alone in shedding tears. 📍

#Family #CrohnsDisease #UlcerativeColitis #primarysclerosingcholangitis #IBD #inflammatoryboweldisease #lovemygrandmother
MY GRANDMOTHER & CROHNS | 📍 This woman has been through the worst 6 months imaginable. Not only did she lose her husband, but she was recently diagnosed with Crohns Disease at the age of 85. 📍 Up until this point, she has been relatively active and had been suffering from diverticulitis, as well as beating breast cancer 15 years ago... thankfully, it never returned. 📍 She now gets treated by my gastroenterologist and is on 6 weekly infliximab, which I've assured her is not a hospital trip that is too overwhelming in comparison to a colonoscopy and that dreaded Bowel Prep. In 2 weeks time, we have our first appointment together with our gastro. 📍 Although, I hate that this has happened to her, I'm comforted knowing we now have each other, can share our IBD stories and we are never alone in shedding tears. 📍 #Family  #CrohnsDisease  #UlcerativeColitis  #primarysclerosingcholangitis  #IBD  #inflammatoryboweldisease  #lovemygrandmother 
Hey, hi, I am Julia. Here’s three things that are true about me:
🌲I have three autoimmune diseases
🌲I follow a strict autoimmune protocol (AIP) diet
🌲I am a college student
I began following an AIP diet after being diagnosed with Ulcerative Colitis, Small Duct Primary Sclerosing Cholangitis (a rare disease of the liver) and Hashimoto’s Thyroiditis in December of 2017 and I can honestly tell you it has changed my life. After my diagnosis I took a semester off of school to mentally and physically heal from the grueling six months that preceded my diagnosis. During this time, I learned about AIP and I was able to see first hand the power of food as medicine. As I prepare to start my junior year of college, I don’t want this positive healing momentum to stop upon my return to school, so I am foregoing a meal plan and I will be cooking all my meals in the communal kitchen in my dorm. I wanted to create this account to share what I learn about being on AIP and advocating for my health while simultaneously balancing my busy life as a college student. I found there weren’t many resources for people in my position, this account is my attempt to change that. I want to provide nourishing recipes and meal ideas -some original, some shared- and any other relevant information I learn along the way, for anyone, but especially for students following AIP. Cheers!
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#aip #aippaleo #paleo #aiprecipes #paleorecipes #ulcerativecolitis #primarysclerosingcholangitis #hashimotos #ibd #iChooseToBeWell
Hey, hi, I am Julia. Here’s three things that are true about me: 🌲I have three autoimmune diseases 🌲I follow a strict autoimmune protocol (AIP) diet 🌲I am a college student I began following an AIP diet after being diagnosed with Ulcerative Colitis, Small Duct Primary Sclerosing Cholangitis (a rare disease of the liver) and Hashimoto’s Thyroiditis in December of 2017 and I can honestly tell you it has changed my life. After my diagnosis I took a semester off of school to mentally and physically heal from the grueling six months that preceded my diagnosis. During this time, I learned about AIP and I was able to see first hand the power of food as medicine. As I prepare to start my junior year of college, I don’t want this positive healing momentum to stop upon my return to school, so I am foregoing a meal plan and I will be cooking all my meals in the communal kitchen in my dorm. I wanted to create this account to share what I learn about being on AIP and advocating for my health while simultaneously balancing my busy life as a college student. I found there weren’t many resources for people in my position, this account is my attempt to change that. I want to provide nourishing recipes and meal ideas -some original, some shared- and any other relevant information I learn along the way, for anyone, but especially for students following AIP. Cheers! • • • #aip  #aippaleo  #paleo  #aiprecipes  #paleorecipes  #ulcerativecolitis  #primarysclerosingcholangitis  #hashimotos  #ibd  #iChooseToBeWell 
If for no other reason I needed to post this for me. 
Haven’t seen the doc in 24 hours, but he’s now ordered a battery of blood work. Perhaps he’s starting to believe me that I’m suffering 🤷🏽‍♀️? #spoonie #spoonielife #spooniewarrior #ibd #ulcerativecolitis #invisibledisease #inflammatoryboweldisease #inflammation #primarysclerosingcholangitis #pancreatitis #whoknowswhatitis #hospitallife #pain
This is the juiciest, most delicious peach I've ever had! The juice is dripping down my hand! So good! I don't want it to end. The boys are at their grandparents for the weekend so naturally I've eaten junk food, taken a nap, and watched whatever I wanted on TV all afternoon. If I were any peachier I'd be a cobbler! (Did you know food tastes better (aka normal) when you have a healthy liver? Now you do!) On to some fun Friday night shenanigans!
#youreapeach #mommytime #freakinweekend #fabulousfriday #primarysclerosingcholangitis #livertransplant #inspiredlifemomwife #myreclaimedlife
This is the juiciest, most delicious peach I've ever had! The juice is dripping down my hand! So good! I don't want it to end. The boys are at their grandparents for the weekend so naturally I've eaten junk food, taken a nap, and watched whatever I wanted on TV all afternoon. If I were any peachier I'd be a cobbler! (Did you know food tastes better (aka normal) when you have a healthy liver? Now you do!) On to some fun Friday night shenanigans! #youreapeach  #mommytime  #freakinweekend  #fabulousfriday  #primarysclerosingcholangitis  #livertransplant  #inspiredlifemomwife  #myreclaimedlife 
Well... Today was delicious 🥑🍇🍌🍞🍅🥝🍋I know I'm posting a lot of food, recovery and fitness photos but guys... your diet and nourishing your body with foods that literally heal your body is so important. I've said it before and I'll say it again - last year my gut was full of inflammation and ulcers, my liver was starting to fail and I was in and out of hospital with liver and gut infections every few months, thinking I might be on the road to needing a liver transplant in the next few years. BUT! With the help of some amazing people, inspiring friends and a lot of research, I was able to switch to a mostly vegan, plant based diet and the results of my blood work and latest tests show that the ulcers in my gut have gone. I REPEAT - GONE, my liver levels though still very high, have started to improve, though my bile ducts are still blocked and this causes me chronic pain and other symptoms, I am hopefull that I can see positive results in that area too. Also, a week ago, because of my recent surgeries I couldn't eat solid foods, walk around the block or do much of anything... But once I was able to get off the pain meds, antibiotics, start meditating daily and start eating the right foods again? I'm now now back to cycling 10km a day and building up my circuit workouts again. I still have a long way to go but if I can do it, honestly anyone can do it. Health is wealth people. Never give up. Don't take your health for granted.
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#healthiswealth #beatingchronicillness #recovery #PSC #UC #chronicillnesss #veganfood #plantbased #fruitandvegheals #fitness #healing #meditation #detox #10kmcycle #believeinyourself #ificandoityoucandoit #chronicpain #plantbaseddiet #autoimmunedisease #primarysclerosingcholangitis #ulcerativecolitis #inflammatoryboweldisease
Well... Today was delicious 🥑🍇🍌🍞🍅🥝🍋I know I'm posting a lot of food, recovery and fitness photos but guys... your diet and nourishing your body with foods that literally heal your body is so important. I've said it before and I'll say it again - last year my gut was full of inflammation and ulcers, my liver was starting to fail and I was in and out of hospital with liver and gut infections every few months, thinking I might be on the road to needing a liver transplant in the next few years. BUT! With the help of some amazing people, inspiring friends and a lot of research, I was able to switch to a mostly vegan, plant based diet and the results of my blood work and latest tests show that the ulcers in my gut have gone. I REPEAT - GONE, my liver levels though still very high, have started to improve, though my bile ducts are still blocked and this causes me chronic pain and other symptoms, I am hopefull that I can see positive results in that area too. Also, a week ago, because of my recent surgeries I couldn't eat solid foods, walk around the block or do much of anything... But once I was able to get off the pain meds, antibiotics, start meditating daily and start eating the right foods again? I'm now now back to cycling 10km a day and building up my circuit workouts again. I still have a long way to go but if I can do it, honestly anyone can do it. Health is wealth people. Never give up. Don't take your health for granted. . . . . #healthiswealth  #beatingchronicillness  #recovery  #PSC  #UC  #chronicillnesss  #veganfood  #plantbased  #fruitandvegheals  #fitness  #healing  #meditation  #detox  #10kmcycle  #believeinyourself  #ificandoityoucandoit  #chronicpain  #plantbaseddiet  #autoimmunedisease  #primarysclerosingcholangitis  #ulcerativecolitis  #inflammatoryboweldisease 
Most days are good. Really good. Some days my phone rings and my heart starts racing. I see the phone number and my stomach lurches. I answer it only to discover it's a recording reminding me of an upcoming appointment. I spent the last two years answering phone calls to schedule medical procedures, get lab results, and hear bad news. It seems silly to have anxiety associated with getting a phone call, but it's my reality. I know I'm not alone. 
My pain has changed me. I live a little more freely, I love a lot more fiercely, and I say what I need to say. I cry a lot more. I try not to live in fear, but to live in hope. I have some difficult days ahead of me still, but today is a pretty good day. Some days are hard. Most days are good.
#myreclaimedlife #phoneanxiety #livefreely #lovefiercely #saywhatyouneedtosay #liveinhope #gooddays #fromdeathtolife #primarysclerosingcholangitis #livertransplant
Most days are good. Really good. Some days my phone rings and my heart starts racing. I see the phone number and my stomach lurches. I answer it only to discover it's a recording reminding me of an upcoming appointment. I spent the last two years answering phone calls to schedule medical procedures, get lab results, and hear bad news. It seems silly to have anxiety associated with getting a phone call, but it's my reality. I know I'm not alone. My pain has changed me. I live a little more freely, I love a lot more fiercely, and I say what I need to say. I cry a lot more. I try not to live in fear, but to live in hope. I have some difficult days ahead of me still, but today is a pretty good day. Some days are hard. Most days are good. #myreclaimedlife  #phoneanxiety  #livefreely  #lovefiercely  #saywhatyouneedtosay  #liveinhope  #gooddays  #fromdeathtolife  #primarysclerosingcholangitis  #livertransplant 
Well done to Fraser Garrow of AS Mosley for recently bagging the #edinburghmarathon and raising £2500 for @psc_support_uk. #gofraser #greateffort
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#edinburghmarathon2018 #running #charityrun #charity #helpingothers #runningforlife #givingback #edinburgh #psc #pscsupport #worthycause #primarysclerosingcholangitis
Off to Toronto General for a team of specialists. Gotta be back in a week for nuptial preparation. C'mon, just throw me something else world, I got this.  #privateplane #notsoluxurious #lilhiccup  #invisibleillness #chronicillness #beanorgandonor #livertransplantrecipient #livertransplantsurvivor #livertansplant #liverhealing #liverhealth #PSC #AIH #primarysclerosingcholangitis #autoimmunehepatitis #selfcare
1 colonoscopy, 1 liver biopsy, 4 blood draws, 2 IV sticks (I was a bit dehydrated from prep), and 1 bloody nose while waking up later!
I have annual colonoscopies for surveillance and checking for active colitis as I have had my diagnosis of UC for more than 10 years.
And my doctors and I decided to do a liver biopsy under the same anesthesia to check for possible autoimmune hepatitis in addition to already known PSC due to recent abnormal blood work.
Everything looked normal visually but have to wait for biopsy results. And now just resting, slowly beginning clears and food, laying on my right side, and cuddling with my lavender giraffe stuffie! Chocolate pudding is a must for me after colonoscopies 😊
I hope you are all doing well!
#ulcerativecolitis #primarysclerosingcholangitis #inflammatoryboweldisease #ulcerativecolitisfighter
1 colonoscopy, 1 liver biopsy, 4 blood draws, 2 IV sticks (I was a bit dehydrated from prep), and 1 bloody nose while waking up later! I have annual colonoscopies for surveillance and checking for active colitis as I have had my diagnosis of UC for more than 10 years. And my doctors and I decided to do a liver biopsy under the same anesthesia to check for possible autoimmune hepatitis in addition to already known PSC due to recent abnormal blood work. Everything looked normal visually but have to wait for biopsy results. And now just resting, slowly beginning clears and food, laying on my right side, and cuddling with my lavender giraffe stuffie! Chocolate pudding is a must for me after colonoscopies 😊 I hope you are all doing well! #ulcerativecolitis  #primarysclerosingcholangitis  #inflammatoryboweldisease  #ulcerativecolitisfighter 
This is about the only things I’ve accomplished today. 2 more days til my next #entyvio #infusion and I’m in tremendous pain. My brain feels like it’s in a fog. My legs feel like I ran a marathon. My upper colon is screaming. And I’m EXHAUSTED!!! I can’t seem to win today. 
Last night I went to the hospital to make sure the pain I was feeling wasn’t associated with my liver since we still haven’t ruled out #psc - luckily my blood work was all normal but I bet you my #calprotectin levels are through the roof. 
#primarysclerosingcholangitis #autoimmunedisease #inflammation #inflammatoryboweldisease #ibd #ulcerativecolitis #uc #invisibledisease #biologics #liverdisease #exhaustion #radiatingpain #imdone
This is about the only things I’ve accomplished today. 2 more days til my next #entyvio  #infusion  and I’m in tremendous pain. My brain feels like it’s in a fog. My legs feel like I ran a marathon. My upper colon is screaming. And I’m EXHAUSTED!!! I can’t seem to win today. Last night I went to the hospital to make sure the pain I was feeling wasn’t associated with my liver since we still haven’t ruled out #psc  - luckily my blood work was all normal but I bet you my #calprotectin  levels are through the roof. #primarysclerosingcholangitis  #autoimmunedisease  #inflammation  #inflammatoryboweldisease  #ibd  #ulcerativecolitis  #uc  #invisibledisease  #biologics  #liverdisease  #exhaustion  #radiatingpain  #imdone 
The warm sand beneath my feet.  Waves crashing... the smell of the salt air... beautiful blue water and sky... the sound of children laughing...all reminders of how precious life is.... and how blessed I am to live it.  I am acutely tuned in to every moment,  after receiving a second chance.  Life is beautiful...so very beautiful!!! #lifeafterlivertransplant  #lifeisbeautiful #beachlife #primarysclerosingcholangitis #autoimmunedisease
Roasted zucchini, squash, and cherry tomatoes.. some of my favorite roasted veggies and they’re even better with the low Fodmap-friendly garlic-infused olive oil I just got at a local farmers market. 🙌🏻🙌🏻🙌🏻
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#zucchini #squash #roastedvegetables #guthealth #lowfodmap #lowfodmapdiet #ibsdiet #ibddiet #psc #ibdcommunity #ibd #inflammatoryboweldisease #irritablebowelsyndrome #autoimmune #primarysclerosingcholangitis #spoonie #chronicillness #invisibleillness
Roasted zucchini, squash, and cherry tomatoes.. some of my favorite roasted veggies and they’re even better with the low Fodmap-friendly garlic-infused olive oil I just got at a local farmers market. 🙌🏻🙌🏻🙌🏻 * * * #zucchini  #squash  #roastedvegetables  #guthealth  #lowfodmap  #lowfodmapdiet  #ibsdiet  #ibddiet  #psc  #ibdcommunity  #ibd  #inflammatoryboweldisease  #irritablebowelsyndrome  #autoimmune  #primarysclerosingcholangitis  #spoonie  #chronicillness  #invisibleillness 
I start fasting before the directions given say to for a colonoscopy because sometimes my GI tract is a little slow and getting everything out takes a little longer. Previously I have eaten breakfast and a small lunch two days before. However in the last several months my GI tract has sped up so for this year's procedures I decided to eat a large brunch (largely influenced because I woke up late) on t-2 day
#ulcerativecolitis #psc #primarysclerosingcholangitis #inflammatoryboweldisease #glutenfree #crohns
I start fasting before the directions given say to for a colonoscopy because sometimes my GI tract is a little slow and getting everything out takes a little longer. Previously I have eaten breakfast and a small lunch two days before. However in the last several months my GI tract has sped up so for this year's procedures I decided to eat a large brunch (largely influenced because I woke up late) on t-2 day #ulcerativecolitis  #psc  #primarysclerosingcholangitis  #inflammatoryboweldisease  #glutenfree  #crohns 
So here are all the medicines I take in a day... but hey, I’m use to it🤭 and I’ll get through anything!🙌 #FightOn💪🏼 #sofun🙄 #liverdiseasesucks #primarysclerosingcholangitis #autonomicneuropathy
Back in the er yet again.. not sure if issues from surgery and can’t stay hydrated.. had a fever last night, hot and cold flashes... since Wednesday I have been going to the bathroom at least a total of 40 times... I’m not throwing up which is good but severe abdominal pain and dehydration hope this is an easy fix #chronicpain #chronicfatigue #chronicillness #chronicillnesswarrior #chronicpainsucks #pscbites #chronicillnessawareness #psc #pscsucks #primarysclerosingcholangitis #chiarimalformation #chiariawareness #chiaristrong #chiariwarrior #liverdisease #organtransplant #mmmp #medicalmarijuana #medicalcannabis #cannabis #cannabiscommunity #cannabiscuties #cannabislove #cannabiscures #cannabisculture #cannabislifestyle #invisibledisease #invisibleillness
Back in the er yet again.. not sure if issues from surgery and can’t stay hydrated.. had a fever last night, hot and cold flashes... since Wednesday I have been going to the bathroom at least a total of 40 times... I’m not throwing up which is good but severe abdominal pain and dehydration hope this is an easy fix #chronicpain  #chronicfatigue  #chronicillness  #chronicillnesswarrior  #chronicpainsucks  #pscbites  #chronicillnessawareness  #psc  #pscsucks  #primarysclerosingcholangitis  #chiarimalformation  #chiariawareness  #chiaristrong  #chiariwarrior  #liverdisease  #organtransplant  #mmmp  #medicalmarijuana  #medicalcannabis  #cannabis  #cannabiscommunity  #cannabiscuties  #cannabislove  #cannabiscures  #cannabisculture  #cannabislifestyle  #invisibledisease  #invisibleillness 
No filter hospital selfie for all us frequent flyers. Even us sickies are beautiful 😎🤒😉 #nofilter #beanorgandonor #livertransplantrecipient #livertransplantsurvivor #livertansplant #liverhealing #liverhealth #PSC #AIH #primarysclerosingcholangitis #autoimmunehepatitis #selfcare
Y'all it is entirely too hot to be messing with this nonsense! 
#summatime #maskwearin #sosweaty #florida #livertransplant #primarysclerosingcholangitis #inspiredlifemomwife #myreclaimedlife
ADVENTURES WITH AN OSTOMY | 
Taking a leap of faith 6m high! Heights and I don't really go well together, but I've decided to take more risks, try new things and be more active when I can... because after so many days bed bound and now not having to worry about urgency and diarrhea, I don't take for granted what I can do when I have enough energy 😁 #honeymoon #honeymooningwithanostomy #fatiguemanagement #takerisks #scaredashell #ostomy #ileostomy #primarysclerosingcholangitis #ulcerativecolitis #subtotalcolectomy #endometriosis
ADVENTURES WITH AN OSTOMY | Taking a leap of faith 6m high! Heights and I don't really go well together, but I've decided to take more risks, try new things and be more active when I can... because after so many days bed bound and now not having to worry about urgency and diarrhea, I don't take for granted what I can do when I have enough energy 😁 #honeymoon  #honeymooningwithanostomy  #fatiguemanagement  #takerisks  #scaredashell  #ostomy  #ileostomy  #primarysclerosingcholangitis  #ulcerativecolitis  #subtotalcolectomy  #endometriosis 
Ok so I’m in desperate need to find a friend who would be willing to pick either a day or night EVERY single week and do something with me, whether it be during the day, and taking your kids out to the park, or natural trails, Henry ford.. or a night thing, we we go out even just for coffee and adult conversations.... I really need to start participating in life, and I need to do it slowly I really want to make this a very weekly thing... so if anyone is up to the idea please please please DM me... I honestly don’t mind if I even need to be a tag-a-long lol
Ok so I’m in desperate need to find a friend who would be willing to pick either a day or night EVERY single week and do something with me, whether it be during the day, and taking your kids out to the park, or natural trails, Henry ford.. or a night thing, we we go out even just for coffee and adult conversations.... I really need to start participating in life, and I need to do it slowly I really want to make this a very weekly thing... so if anyone is up to the idea please please please DM me... I honestly don’t mind if I even need to be a tag-a-long lol
Ok so I’m in desperate need to find a friend who would be willing to pick either a day or night EVERY single week and do something with me, whether it be during the day, and taking your kids out to the park, or natural trails, Henry ford.. or a night thing, we we go out even just for coffee and adult conversations.... I really need to start participating in life, and I need to do it slowly I really want to make this a very weekly thing... so if anyone is up to the idea please please please DM me... I honestly don’t mind if I even need to be a tag-a-long lol
Ok so I’m in desperate need to find a friend who would be willing to pick either a day or night EVERY single week and do something with me, whether it be during the day, and taking your kids out to the park, or natural trails, Henry ford.. or a night thing, we we go out even just for coffee and adult conversations.... I really need to start participating in life, and I need to do it slowly I really want to make this a very weekly thing... so if anyone is up to the idea please please please DM me... I honestly don’t mind if I even need to be a tag-a-long lol
OSTOMY TIP: When your bag is filling up, just hide it with a prop and if on your wedding day, your bouquet 😜

#ostomyjokes #marriedwithanostomy #obsessed #weddingspam #ileostomy #lovelovelove #havetolaugh #ileostomy #ulcerativecolitis #primarysclerosingcholangitis
Episode 5 of #BigLivers is OUT NOW! 🎉 Here’s a tidbit, but you’ll have to go to @big_livers to see the whole thing. (Go ‘head and like the page while you’re there 😉) Thank you to @pmv_ceo for taking time out to be vulnerable and make a video, and thank all of YOU for your support! Lots of plans for Big Livers coming soon! 👀 Like the page to keep yourself up to date! 💕
Episode 5 of #BigLivers  is OUT NOW! 🎉 Here’s a tidbit, but you’ll have to go to @big_livers to see the whole thing. (Go ‘head and like the page while you’re there 😉) Thank you to @pmv_ceo for taking time out to be vulnerable and make a video, and thank all of YOU for your support! Lots of plans for Big Livers coming soon! 👀 Like the page to keep yourself up to date! 💕
Better late than never? I got @pmv_ceo to talk about his journey with #rhabdomyolysis, and a couple of things that really grind his gears when people speak without understanding. Hopefully these videos will help us all understand how we can better respond to and love our loved ones who have #chronicillnesses. If you have a story and want to be featured on @big_livers, shoot me an email or a DM!
Song: Take Off - @seanophreshpmv
Better late than never? I got @pmv_ceo to talk about his journey with #rhabdomyolysis , and a couple of things that really grind his gears when people speak without understanding. Hopefully these videos will help us all understand how we can better respond to and love our loved ones who have #chronicillnesses . If you have a story and want to be featured on @big_livers, shoot me an email or a DM! Song: Take Off - @seanophreshpmv
Livercare mengandung berbagai bahan alami berkualitas yang diproses menggunakan nanotechnology autofermentasi Diospyros kaki berkhasiat untuk mengatasi aneka penyakit hati (liver).
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➡️Untuk mengetahui informasi tentang Kesehatan lainnya bisa Anda lihat di
📧www.autoimuncare.com
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Layanan konsultasi kesehatan GRATIS silahkan hubungi nomor
📲 082320000832
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#obatherbal #nanoherbal #tanpabahankimia #tanpabahankimiaberbahaya #obat #kesehatan #tubuhsehat #bahanbahanalami #sehatalami #pengobatanherbal #pengobatantanpaefeksamping #pengobatanmurah #pengobatanalami #obatherbal  #sahabatodha #salampemudasehatberprestasi #penyakitliver #sakitliver #penyakithati #sirosishati #hepatitisb #hepatitisa #hepatitisc #demamkuning #hepatoma #penyakitbatuempedu #kolestasis #primarybiliarycirrhosis #primarysclerosingcholangitis
Livercare mengandung berbagai bahan alami berkualitas yang diproses menggunakan nanotechnology autofermentasi Diospyros kaki berkhasiat untuk mengatasi aneka penyakit hati (liver). • ➡️Untuk mengetahui informasi tentang Kesehatan lainnya bisa Anda lihat di 📧www.autoimuncare.com • Layanan konsultasi kesehatan GRATIS silahkan hubungi nomor 📲 082320000832 • #obatherbal  #nanoherbal  #tanpabahankimia  #tanpabahankimiaberbahaya  #obat  #kesehatan  #tubuhsehat  #bahanbahanalami  #sehatalami  #pengobatanherbal  #pengobatantanpaefeksamping  #pengobatanmurah  #pengobatanalami  #obatherbal  #sahabatodha  #salampemudasehatberprestasi  #penyakitliver  #sakitliver  #penyakithati  #sirosishati  #hepatitisb  #hepatitisa  #hepatitisc  #demamkuning  #hepatoma  #penyakitbatuempedu  #kolestasis  #primarybiliarycirrhosis  #primarysclerosingcholangitis 
Penyakit liver adalah penyakit yang disebabkan oleh berbagai faktor yang merusak hati, seperti virus dan penggunaan alkohol. Kerusakan hati berdampak pada luka di jaringan (sirosis), yang dapat menyebabkan gagal hati. Suatu kondisi yang mengancam jiwa.

Atasi penyakit Liver dengan Livercare dari Autoimun care. Livercare berperan sebagai anti virus yang menyerang liver seperti hepatitis A dan hepatitis B, anti peradangan (anti inflamasi) yang diakibatkan oleh aktivitas virus.
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➡️Untuk mengetahui informasi tentang Kesehatan lainnya bisa Anda lihat di
📧www.autoimuncare.com
•
Layanan konsultasi kesehatan GRATIS silahkan hubungi nomor
📲 082320000832
•
#obatherbal #nanoherbal #tanpabahankimia #tanpabahankimiaberbahaya #obat #kesehatan #tubuhsehat #bahanbahanalami #sehatalami #pengobatanherbal #pengobatantanpaefeksamping #pengobatanmurah #pengobatanalami #obatherbal  #sahabatodha #salampemudasehatberprestasi #penyakitliver #sakitliver #penyakithati #sirosishati #hepatitisb #hepatitisa #hepatitisc #demamkuning #hepatoma #penyakitbatuempedu #kolestasis #primarybiliarycirrhosis #primarysclerosingcholangitis
Penyakit liver adalah penyakit yang disebabkan oleh berbagai faktor yang merusak hati, seperti virus dan penggunaan alkohol. Kerusakan hati berdampak pada luka di jaringan (sirosis), yang dapat menyebabkan gagal hati. Suatu kondisi yang mengancam jiwa. Atasi penyakit Liver dengan Livercare dari Autoimun care. Livercare berperan sebagai anti virus yang menyerang liver seperti hepatitis A dan hepatitis B, anti peradangan (anti inflamasi) yang diakibatkan oleh aktivitas virus. • ➡️Untuk mengetahui informasi tentang Kesehatan lainnya bisa Anda lihat di 📧www.autoimuncare.com • Layanan konsultasi kesehatan GRATIS silahkan hubungi nomor 📲 082320000832 • #obatherbal  #nanoherbal  #tanpabahankimia  #tanpabahankimiaberbahaya  #obat  #kesehatan  #tubuhsehat  #bahanbahanalami  #sehatalami  #pengobatanherbal  #pengobatantanpaefeksamping  #pengobatanmurah  #pengobatanalami  #obatherbal  #sahabatodha  #salampemudasehatberprestasi  #penyakitliver  #sakitliver  #penyakithati  #sirosishati  #hepatitisb  #hepatitisa  #hepatitisc  #demamkuning  #hepatoma  #penyakitbatuempedu  #kolestasis  #primarybiliarycirrhosis  #primarysclerosingcholangitis 
Black bean burgers with fresh corn, gluten free bun, avocado mash, ketchup, mustard, pickles and potato wedges
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I love hiding black beans in various foods such as burgers or brownies ♥️ since I’m at an even greater risk for colon cancer, from colitis + PSC, so I try to eat beans as much as possible. Some evidence suggests that eating 2 servings of beans a week decreases colon cancer risk by 50%. One of the reasons for this, is because when they are broken down they are fermented into into butyrate. High levels of butyrate is protective against cancer. *
NOTE: The best time to start slowly adding beans into your diet is when you’re in remission. *
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#guthealth #autoimmunedisease #ibddiet #inflammatoryboweldisease #ibs #ibd #guthealthnutrition #rdn #ulcerativecolitis #crohnsdisease #crohns #colitis #pscdiet #chronicillness #microbiome #psc #spoonie #primarysclerosingcholangitis #autoimmune #burgers #blackbeans #pulses #beanburgers #beanburger
Black bean burgers with fresh corn, gluten free bun, avocado mash, ketchup, mustard, pickles and potato wedges * I love hiding black beans in various foods such as burgers or brownies ♥️ since I’m at an even greater risk for colon cancer, from colitis + PSC, so I try to eat beans as much as possible. Some evidence suggests that eating 2 servings of beans a week decreases colon cancer risk by 50%. One of the reasons for this, is because when they are broken down they are fermented into into butyrate. High levels of butyrate is protective against cancer. * NOTE: The best time to start slowly adding beans into your diet is when you’re in remission. * * * #guthealth  #autoimmunedisease  #ibddiet  #inflammatoryboweldisease  #ibs  #ibd  #guthealthnutrition  #rdn  #ulcerativecolitis  #crohnsdisease  #crohns  #colitis  #pscdiet  #chronicillness  #microbiome  #psc  #spoonie  #primarysclerosingcholangitis  #autoimmune  #burgers  #blackbeans  #pulses  #beanburgers  #beanburger 
Just had an amazing time at the PSC Partners conference in Sacramento California this past weekend!! I had the pleasure of meeting some amazing practitioners, researchers, and new friends. ♥️ already looking forward to next year! *
Together in the fight. Whatever it takes. *
PSC is a rare, progressive, autoimmune liver condition that is characterized by thickening and blocking of the bile ducts leading to liver failure.
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#guthealth #autoimmunedisease #ibddiet #progressivedisease #inflammatoryboweldisease #ibs #ibd #guthealthnutrition #rdn #ulcerativecolitis #crohnsdisease #crohns #colitis #pscdiet #chronicillness #microbiome #psc #spoonie #raredisease #primarysclerosingcholangitis #autoimmune #liverdisease
Just had an amazing time at the PSC Partners conference in Sacramento California this past weekend!! I had the pleasure of meeting some amazing practitioners, researchers, and new friends. ♥️ already looking forward to next year! * Together in the fight. Whatever it takes. * PSC is a rare, progressive, autoimmune liver condition that is characterized by thickening and blocking of the bile ducts leading to liver failure. * * #guthealth  #autoimmunedisease  #ibddiet  #progressivedisease  #inflammatoryboweldisease  #ibs  #ibd  #guthealthnutrition  #rdn  #ulcerativecolitis  #crohnsdisease  #crohns  #colitis  #pscdiet  #chronicillness  #microbiome  #psc  #spoonie  #raredisease  #primarysclerosingcholangitis  #autoimmune  #liverdisease 
Some people with IBD are afraid of drinking a lot of fluids. They probably feel like it’s counterintuitive; if you have a leaky bucket, why would you put more water in it? But that’s not true when it comes to people-especially people with IBD. We need to drink plenty of fluids-more than the recommended 8 x 8-ounce cups of water daily- because we’re losing a lot more water than our healthy peers. I definitely didn’t drink enough fluids when I was initially diagnosed with colitis. I would probably drink around 6 cups of fluid a day. Now, I’m in remission and I drink 3-4 liters of water a day and sometimes I still don’t think that’s enough!! Lol *
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#guthealth #autoimmunedisease #ibddiet #inflammatoryboweldisease #ibs #ibd #guthealthnutrition #rdn #ulcerativecolitis #crohnsdisease #crohns #colitis #pscdiet #chronicillness #microbiome #psc #spoonie #primarysclerosingcholangitis #autoimmune #spoons #hydration #water
Some people with IBD are afraid of drinking a lot of fluids. They probably feel like it’s counterintuitive; if you have a leaky bucket, why would you put more water in it? But that’s not true when it comes to people-especially people with IBD. We need to drink plenty of fluids-more than the recommended 8 x 8-ounce cups of water daily- because we’re losing a lot more water than our healthy peers. I definitely didn’t drink enough fluids when I was initially diagnosed with colitis. I would probably drink around 6 cups of fluid a day. Now, I’m in remission and I drink 3-4 liters of water a day and sometimes I still don’t think that’s enough!! Lol * * * #guthealth  #autoimmunedisease  #ibddiet  #inflammatoryboweldisease  #ibs  #ibd  #guthealthnutrition  #rdn  #ulcerativecolitis  #crohnsdisease  #crohns  #colitis  #pscdiet  #chronicillness  #microbiome  #psc  #spoonie  #primarysclerosingcholangitis  #autoimmune  #spoons  #hydration  #water 
GETTING MARRIED WITH AN OSTOMY |

Don't let it stop you is my advice! I took the ultimate risk knowing that I would have a slight bulge to show off during my wedding day. But I always wanted a tighter fitted dress, rather than an A line which would be an easy way to hide an ostomy... Yes when my bag filled up, you could see an uneven shape around my waist. But instead, I just emptied more than normal, and wore a fantastic @nancyganzau highwaist underwear, that weren't too compressed but gave a seamless finish when my bag was empty.

Couldn't be happier with saying yes to this dress! 
#gettingmarriedwithanostomy #ostomy #ileostomy #ulcerativecolitis #primarysclerosingcholangitis #subtotalcolectomy #ostomybag #marriedwithanostomy
GETTING MARRIED WITH AN OSTOMY | Don't let it stop you is my advice! I took the ultimate risk knowing that I would have a slight bulge to show off during my wedding day. But I always wanted a tighter fitted dress, rather than an A line which would be an easy way to hide an ostomy... Yes when my bag filled up, you could see an uneven shape around my waist. But instead, I just emptied more than normal, and wore a fantastic @nancyganzau highwaist underwear, that weren't too compressed but gave a seamless finish when my bag was empty. Couldn't be happier with saying yes to this dress! #gettingmarriedwithanostomy  #ostomy  #ileostomy  #ulcerativecolitis  #primarysclerosingcholangitis  #subtotalcolectomy  #ostomybag  #marriedwithanostomy 
A year ago yesterday, my "little" sister donated 60% of her liver to me. It was an ultimate act of kindness and the process put her strength and courage on complete display. Thank you for the gift of life Nikki. We have always been connected by blood, but our connection has evolved and will always be so much more. Happy liversary! 😍👭❤🏨💜#beanorgandonor #liverdonor #giftoflife #livertransplantrecipient #livertransplantsurvivor #livertansplant #liverhealing #liverhealth #PSC #AIH #primarysclerosingcholangitis #autoimmunehepatitis #selfcare
A year ago yesterday, my "little" sister donated 60% of her liver to me. It was an ultimate act of kindness and the process put her strength and courage on complete display. Thank you for the gift of life Nikki. We have always been connected by blood, but our connection has evolved and will always be so much more. Happy liversary! 😍👭❤🏨💜#beanorgandonor  #liverdonor  #giftoflife  #livertransplantrecipient  #livertransplantsurvivor  #livertansplant  #liverhealing  #liverhealth  #PSC  #AIH  #primarysclerosingcholangitis  #autoimmunehepatitis  #selfcare 
Infertility is hard. It's ugly, and it can completely steal your joy if you let it. I've found that one minute I'm so excited thinking about the future, and the next I'm terrified that we'll never get our miracles. Sometimes it all just seems impossible. Our past has brought us 3 pregnancy losses, nearly 4 years of infertility, lots of heart break, and lots of disappointment. Then you add in our fight to get my husband a new liver, and sometimes it's just all too much. Sometimes it feels like it may never end. I'm terrified to test because I'm terrified to see a negative. But I'm also so hopeful that we will get a break soon, and that good things are coming our way.

After we found out the 2nd round of IVF was unsuccessful, a friend sent the song "Miracles" by Unspoken to me, and I sat in my car and cried my eyes out listening to it. I've played it nearly every day since starting the 3rd round of IVF. And walk around humming it most of the day.

We have to have faith that our miracles are coming. Without that, I don't think I'd ever get out of bed. This journey is tough. But we're tougher. We are not giving up on our miracles.

#expectmiracles #impatientlywaiting #gratefulheart #ivf #ivfsupport #ivfround3 #ttc #ttcsupport #infertility #8dp5dt #livertransplant #pscawareness #primarysclerosingcholangitis #ucawareness #notgivingup #miracles
Infertility is hard. It's ugly, and it can completely steal your joy if you let it. I've found that one minute I'm so excited thinking about the future, and the next I'm terrified that we'll never get our miracles. Sometimes it all just seems impossible. Our past has brought us 3 pregnancy losses, nearly 4 years of infertility, lots of heart break, and lots of disappointment. Then you add in our fight to get my husband a new liver, and sometimes it's just all too much. Sometimes it feels like it may never end. I'm terrified to test because I'm terrified to see a negative. But I'm also so hopeful that we will get a break soon, and that good things are coming our way. After we found out the 2nd round of IVF was unsuccessful, a friend sent the song "Miracles" by Unspoken to me, and I sat in my car and cried my eyes out listening to it. I've played it nearly every day since starting the 3rd round of IVF. And walk around humming it most of the day. We have to have faith that our miracles are coming. Without that, I don't think I'd ever get out of bed. This journey is tough. But we're tougher. We are not giving up on our miracles. #expectmiracles  #impatientlywaiting  #gratefulheart  #ivf  #ivfsupport  #ivfround3  #ttc  #ttcsupport  #infertility  #8dp5dt  #livertransplant  #pscawareness  #primarysclerosingcholangitis  #ucawareness  #notgivingup  #miracles 
This is a clip from a recent vlog about IBD-friendly plant-based sources of protein. *
How do you meet your calcium needs? *
DM me your email address to get on my list for my weekly vlog (I only send out 1 email per week). *
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#guthealth #autoimmunedisease #ibddiet #inflammatoryboweldisease #ibs #ibd #guthealthnutrition #rdn #ulcerativecolitis #crohnsdisease #crohns #colitis #pscdiet #chronicillness #microbiome #psc #spoonie #primarysclerosingcholangitis #autoimmune #omega3fattyacids #omega3 #vlog #video #nutritionvlog #instahealth
This is a clip from a recent vlog about IBD-friendly plant-based sources of protein. * How do you meet your calcium needs? * DM me your email address to get on my list for my weekly vlog (I only send out 1 email per week). * * * #guthealth  #autoimmunedisease  #ibddiet  #inflammatoryboweldisease  #ibs  #ibd  #guthealthnutrition  #rdn  #ulcerativecolitis  #crohnsdisease  #crohns  #colitis  #pscdiet  #chronicillness  #microbiome  #psc  #spoonie  #primarysclerosingcholangitis  #autoimmune  #omega3fattyacids  #omega3  #vlog  #video  #nutritionvlog  #instahealth 
New blog post! I know I’ve been MIA recently online and in person, this hopefully explains a little bit why I’ve turned into my super antisocial self. I’m sorry to anyone I need to reply to messages from, my brain is kind of scrambled from painkillers for my leg 😳🙈 I would just love it, if once, everything could go according to plan without any hiccups! https://howtosurvivechronicillness.blog/2018/06/22/why-ive-been-missing-recently/ (link also in bio) #autoimmune #autoimmunedisease #autoimmunehepatitis #primarysclerosingcholangitis #cirrhosis #cirrhosisofliver #jaundice #💚 #endometriosis #endowarrior #💛 #ulcerativecolitis #ibd #ibdsuperheroes #colitis #💜 #chronicmigraines #migraines #blog #blogger #spoonie #spoonieblog #chronicillnessblogger #howtosurvivechronicillness #abscess #mia #keepswimming #surgery
New blog post! I know I’ve been MIA recently online and in person, this hopefully explains a little bit why I’ve turned into my super antisocial self. I’m sorry to anyone I need to reply to messages from, my brain is kind of scrambled from painkillers for my leg 😳🙈 I would just love it, if once, everything could go according to plan without any hiccups! https://howtosurvivechronicillness.blog/2018/06/22/why-ive-been-missing-recently/ (link also in bio) #autoimmune  #autoimmunedisease  #autoimmunehepatitis  #primarysclerosingcholangitis  #cirrhosis  #cirrhosisofliver  #jaundice  #💚 #endometriosis  #endowarrior  #💛 #ulcerativecolitis  #ibd  #ibdsuperheroes  #colitis  #💜 #chronicmigraines  #migraines  #blog  #blogger  #spoonie  #spoonieblog  #chronicillnessblogger  #howtosurvivechronicillness  #abscess  #mia  #keepswimming  #surgery 
Laughter increases the flow of oxygen to the heart and brain. It boosts endorphins that make us feel good and can temporarily reduce pain. So, try to find a new (or the same) funny meme, gif or video that makes you laugh out loud everyday. We need a daily dose of laughter just like our daily dose of prescribed medicine. ♥️
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#guthealth #autoimmunedisease #ibddiet #inflammatoryboweldisease #ibs #ibd #guthealthnutrition #rdn #ulcerativecolitis #crohnsdisease #crohns #colitis #pscdiet #chronicillness #microbiome #psc #spoonie #primarysclerosingcholangitis #autoimmune #instagram #instahealth #herbalteas #tea #teabenefits #herbalteabenefits #instahealth #laughter #funny #bestmedicine #LOL #haha
Laughter increases the flow of oxygen to the heart and brain. It boosts endorphins that make us feel good and can temporarily reduce pain. So, try to find a new (or the same) funny meme, gif or video that makes you laugh out loud everyday. We need a daily dose of laughter just like our daily dose of prescribed medicine. ♥️ * * * #guthealth  #autoimmunedisease  #ibddiet  #inflammatoryboweldisease  #ibs  #ibd  #guthealthnutrition  #rdn  #ulcerativecolitis  #crohnsdisease  #crohns  #colitis  #pscdiet  #chronicillness  #microbiome  #psc  #spoonie  #primarysclerosingcholangitis  #autoimmune  #instagram  #instahealth  #herbalteas  #tea  #teabenefits  #herbalteabenefits  #instahealth  #laughter  #funny  #bestmedicine  #LOL  #haha 
Brunch: almond flour pancakes and an egg

The almond flour pancakes are from SCD cookbook: Healing Foods Cooking for Celiacs, Colitis, Crohn's and IBS by Sandra Ramacher. @healing_foods

I don't follow a SCD diet so I used regular yoghurt instead, but I do appreciate the fact that the pancakes are gluten free and I like the recipes from the book 😊

#ulcerativecolitis #psc #primarysclerosingcholangitis #inflammatoryboweldisease #glutenfree #crohns
Herbal teas are packed with antioxidants (such as kaempferol, Turin, theaflavin) that may promote the likelihood of certain health benefits such as better sleep, prevention of bloating, increased immunity and decreased inflammation to name a few. Try decaffeinated teas to add some variety and flavor to your total fluid intake. 🍵 ☕️ *
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#guthealth #autoimmunedisease #ibddiet #inflammatoryboweldisease #ibs #ibd #guthealthnutrition #rdn #ulcerativecolitis #crohnsdisease #crohns #colitis #pscdiet #chronicillness #microbiome #psc #spoonie #primarysclerosingcholangitis #autoimmune #instagram #instahealth #herbalteas #tea #teabenefits #herbalteabenefits #instahealth
Herbal teas are packed with antioxidants (such as kaempferol, Turin, theaflavin) that may promote the likelihood of certain health benefits such as better sleep, prevention of bloating, increased immunity and decreased inflammation to name a few. Try decaffeinated teas to add some variety and flavor to your total fluid intake. 🍵 ☕️ * * * #guthealth  #autoimmunedisease  #ibddiet  #inflammatoryboweldisease  #ibs  #ibd  #guthealthnutrition  #rdn  #ulcerativecolitis  #crohnsdisease  #crohns  #colitis  #pscdiet  #chronicillness  #microbiome  #psc  #spoonie  #primarysclerosingcholangitis  #autoimmune  #instagram  #instahealth  #herbalteas  #tea  #teabenefits  #herbalteabenefits  #instahealth 
Tofu is a great source of protein, especially if you’re in a flare because it’s low in fat. I used olive oil and low sodium gluten free soy sauce and a mixture of corn meal and nutritional yeast to bread the tofu for additional flavor and nutrition. Then I baked it for about 30 minutes flipping them over halfway through. If you hate eating tofu because of the texture, try this recipe because it really provides a nice crispy feel on the outside. ♥️
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#guthealthnutritionist #guthealth #nutrition #tofu #nutritionalyeast #instagram #ibdflare #ibddiet #ibsdiet #ibs #inflammatoryboweldisease #instagood #primarysclerosingcholangitis #colitis #ulcerativecolitis #crohnsdisease #crohns #autoimmune #autoimmunediet #ibdcommunity #spoonie #spoons #cute #love
Tofu is a great source of protein, especially if you’re in a flare because it’s low in fat. I used olive oil and low sodium gluten free soy sauce and a mixture of corn meal and nutritional yeast to bread the tofu for additional flavor and nutrition. Then I baked it for about 30 minutes flipping them over halfway through. If you hate eating tofu because of the texture, try this recipe because it really provides a nice crispy feel on the outside. ♥️ * * * #guthealthnutritionist  #guthealth  #nutrition  #tofu  #nutritionalyeast  #instagram  #ibdflare  #ibddiet  #ibsdiet  #ibs  #inflammatoryboweldisease  #instagood  #primarysclerosingcholangitis  #colitis  #ulcerativecolitis  #crohnsdisease  #crohns  #autoimmune  #autoimmunediet  #ibdcommunity  #spoonie  #spoons  #cute  #love 
Here’s the ingredients in this smoothie and why I chose them:
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-Carrots- high in antioxidants including vitamin A -Banana- most IBD friendly fruit + contains a good source of vitamin B6 -Pineapple- packed with vitamin C + helps w/flavor
-Plain, non-fat Kefir- contains protein + probiotics + calcium + vitamin D -Walnut milk- contains plant-based omega 3 fatty acids + calcium + vit D
-Flaxseed meal- contains plant-based omega 3 fatty acids + both soluble + insoluble fiber + protein + prebiotics *
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#guthealth #autoimmunedisease #ibddiet #inflammatoryboweldisease #ibs #ibd #guthealthnutrition #rdn #ulcerativecolitis #crohnsdisease #crohns #colitis #pscdiet #chronicillness #microbiome #psc #spoonie #primarysclerosingcholangitis #autoimmune #instagram #instahealth
Here’s the ingredients in this smoothie and why I chose them: * -Carrots- high in antioxidants including vitamin A -Banana- most IBD friendly fruit + contains a good source of vitamin B6 -Pineapple- packed with vitamin C + helps w/flavor -Plain, non-fat Kefir- contains protein + probiotics + calcium + vitamin D -Walnut milk- contains plant-based omega 3 fatty acids + calcium + vit D -Flaxseed meal- contains plant-based omega 3 fatty acids + both soluble + insoluble fiber + protein + prebiotics * * * #guthealth  #autoimmunedisease  #ibddiet  #inflammatoryboweldisease  #ibs  #ibd  #guthealthnutrition  #rdn  #ulcerativecolitis  #crohnsdisease  #crohns  #colitis  #pscdiet  #chronicillness  #microbiome  #psc  #spoonie  #primarysclerosingcholangitis  #autoimmune  #instagram  #instahealth 
Do you know what today is?? It’s my transplantaversary!!! 9 years going 💪 I’m a survivor! #livertransplantsurvivor #primarysclerosingcholangitis
HOLIDAYS WITH AN OSTOMY |

It's certainly a love-hate relationship carrying this one around with me, particularly in foreign countries. I've just gotten back to our room with an almost 3/4 bag from a bus trip, that was difficult to stop on the side of the road and empty.

I could feel it starting to fill up and usually I wear 2 undies - one low rider and one high waisted, because I hate the feeling of the bag on my skin but also, because I'm prone to heat rashes. My stoma nurse advised to pop a baby's bib around it, which was creative. But my double undies does the trick.

This time, I was only wearing a one piece over the top so my ostomy was straight on my skin. I usually do a bag check to see where it's at and in the middle of town, I could feel it half way with no clean toilets in sight. As I was feeling the amount of room I had left under my dress, and pulling the end of my bag out of my swimsuit in the middle of a grocery store, some packers started staring at what I was doing. In their eyes I could have been stealing and hiding food under my dress. My husband quickly got us out of there... and then jumping on the bus, I could feel it quickly filling up in the hour... what must have been a combo of breakfast and lunch! It was an uncomfortable trip to say the least, but glad I made it home! #closecall

#honeymoon #honeymooningwithanostomy 
#ostomy
#ileostomy
#marriedwithanostomy 
#ostomybag
#ulcerativecolitis 
#primarysclerosingcholangitis 
#fillingupquickly
HOLIDAYS WITH AN OSTOMY | It's certainly a love-hate relationship carrying this one around with me, particularly in foreign countries. I've just gotten back to our room with an almost 3/4 bag from a bus trip, that was difficult to stop on the side of the road and empty. I could feel it starting to fill up and usually I wear 2 undies - one low rider and one high waisted, because I hate the feeling of the bag on my skin but also, because I'm prone to heat rashes. My stoma nurse advised to pop a baby's bib around it, which was creative. But my double undies does the trick. This time, I was only wearing a one piece over the top so my ostomy was straight on my skin. I usually do a bag check to see where it's at and in the middle of town, I could feel it half way with no clean toilets in sight. As I was feeling the amount of room I had left under my dress, and pulling the end of my bag out of my swimsuit in the middle of a grocery store, some packers started staring at what I was doing. In their eyes I could have been stealing and hiding food under my dress. My husband quickly got us out of there... and then jumping on the bus, I could feel it quickly filling up in the hour... what must have been a combo of breakfast and lunch! It was an uncomfortable trip to say the least, but glad I made it home! #closecall  #honeymoon  #honeymooningwithanostomy  #ostomy  #ileostomy  #marriedwithanostomy  #ostomybag  #ulcerativecolitis  #primarysclerosingcholangitis  #fillingupquickly 
Breakfast with a view featuring  a showcase of last night's dinner popping out 😂 #honeymoon #ulcerativecolitis #primarysclerosingcholangitis #endometriosis #marriedwithanostomy
A cyanidin (a type of anthocyanin) is a red pigment found in plants that may help control inflammation. Cherries contain a high amount of cyanidin because they have a bright reddish color. The highest cyanidin content is found in the skin, which is typically the part of the fruit that people with IBD avoid. I recommend trying to cook or blend fruits and vegetables to increase your likelihood of tolerating them. If you can’t tolerate cherries, try another fruit/vegetable in the same color family so that you’re not missing out on these essential antioxidants. *
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#guthealth #autoimmunedisease #ibddiet #inflammatoryboweldisease #ibs #ibd #guthealthnutrition #rdn #ulcerativecolitis #crohnsdisease #crohns #colitis #pscdiet #chronicillness #microbiome #psc #spoonie #primarysclerosingcholangitis #autoimmune
A cyanidin (a type of anthocyanin) is a red pigment found in plants that may help control inflammation. Cherries contain a high amount of cyanidin because they have a bright reddish color. The highest cyanidin content is found in the skin, which is typically the part of the fruit that people with IBD avoid. I recommend trying to cook or blend fruits and vegetables to increase your likelihood of tolerating them. If you can’t tolerate cherries, try another fruit/vegetable in the same color family so that you’re not missing out on these essential antioxidants. * * * #guthealth  #autoimmunedisease  #ibddiet  #inflammatoryboweldisease  #ibs  #ibd  #guthealthnutrition  #rdn  #ulcerativecolitis  #crohnsdisease  #crohns  #colitis  #pscdiet  #chronicillness  #microbiome  #psc  #spoonie  #primarysclerosingcholangitis  #autoimmune 
Best Father’s Day ever! Bringing this guy home from the hospital. Some restful healing days ahead, but so great to have him home with us. #primarysclerosingcholangitis #pancreatitis #acutepancreatitis #soakuplife #fathersday #autoimmunedisease #raredisease #kidsarehappy #wifeishappy
Th colon update: success pretty much. Entyvio is doing its job but not quite keeping the Crohn’s at bay to prevent blood loss through my gut and hence the anemia. Going to start #Uceris and maybe switch biologics (again). Thankful for no major gut swelling/structures that might require surgery. #nowthewaiting #andbreakfast 🥓 #crohns #IBD #anemia #inflammatoryboweldisease #primarysclerosingcholangitis #entyvio #crohnswarrior #runningwithcrohns #biggod #smallproblems #gutitout
Th colon update: success pretty much. Entyvio is doing its job but not quite keeping the Crohn’s at bay to prevent blood loss through my gut and hence the anemia. Going to start #Uceris  and maybe switch biologics (again). Thankful for no major gut swelling/structures that might require surgery. #nowthewaiting  #andbreakfast  🥓 #crohns  #IBD  #anemia  #inflammatoryboweldisease  #primarysclerosingcholangitis  #entyvio  #crohnswarrior  #runningwithcrohns  #biggod  #smallproblems  #gutitout 
Thinking about what people with #chronicillness go through, it’s even more important that we show the love and support we’ve so badly needed. Don’t just talk to someone about what you’re going through - be someone who people can talk to. 💕
Repost: @realjohngray
Thinking about what people with #chronicillness  go through, it’s even more important that we show the love and support we’ve so badly needed. Don’t just talk to someone about what you’re going through - be someone who people can talk to. 💕 Repost: @realjohngray
This is a clip from a recent vlog about omega 3 fatty acids and IBD. *
What’s your favorite way to get in your omega 3’s? *
DM me your email address to get on my list for my weekly vlog (I only send out 1 email per week 😊). *
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#guthealth #autoimmunedisease #ibddiet #inflammatoryboweldisease #ibs #ibd #guthealthnutrition #rdn #ulcerativecolitis #crohnsdisease #crohns #colitis #pscdiet #chronicillness #microbiome #psc #spoonie #primarysclerosingcholangitis #autoimmune #omega3fattyacids #omega3 #vlog #video #nutritionvlog #instahealth
This is a clip from a recent vlog about omega 3 fatty acids and IBD. * What’s your favorite way to get in your omega 3’s? * DM me your email address to get on my list for my weekly vlog (I only send out 1 email per week 😊). * * * #guthealth  #autoimmunedisease  #ibddiet  #inflammatoryboweldisease  #ibs  #ibd  #guthealthnutrition  #rdn  #ulcerativecolitis  #crohnsdisease  #crohns  #colitis  #pscdiet  #chronicillness  #microbiome  #psc  #spoonie  #primarysclerosingcholangitis  #autoimmune  #omega3fattyacids  #omega3  #vlog  #video  #nutritionvlog  #instahealth 
Sometimes we get tested in life. My husband was admitted to acute care on Monday; he was diagnosed with acute pancreatitis. The pancreatitis was triggered after a therapeutic ERCP scope and ballooning of his bile ducts. We were aware there was a 5-10% chance of #acutepancreatitis but it’s staggeringly painful. #autoimmunedisease #psc #primarysclerosingcholangitis #bileducts #bileductproblems #organdonation #organdonorawareness #greynunshospital #yeg
My ostomy playing nice in the pro photos... can't believe how nice our photos turned out #ostomy #ileostomy #ulcerativecolitis #marriedwithanostomy #primarysclerosingcholangitis