Crohn's disease
Crohn's disease
I thought it was fantastic that we had our own forum and that people really knew what Crohn's disease was.
Re: Crohn's disease
it was a horrible week for me. My shot Stelara got delayed because of weather, then the delivery driver was slow today
I didn't get my shot until tonight after 6 pm. I suffered from Thursday - Tuesday.
Crohn's pain is the WORST
I didn't get my shot until tonight after 6 pm. I suffered from Thursday - Tuesday.
Crohn's pain is the WORST
- Tiredretiredlawyer
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Re: Crohn's disease
I have IBS and that pain can be TERRIBLE! But Crohn's!!! I am an amateur. Mucho, mucho sympathy! :bighug
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Re: Crohn's disease
Crohn's disease can be vicious!
"The jungle is no place for a cellist."
From "Take the Money and Run"
From "Take the Money and Run"
Re: Crohn's disease
My son has celiac disease. It took years to get it diagnosed. It still breaks my heart how long he suffered while I fought for a fact based diagnosis. Once CD was confirmed, everything changed. His life improved dramatically and quickly for the better.
Crohn's and similar disorders are common. We should acknowledge that.
Crohn's and similar disorders are common. We should acknowledge that.
You can't wait until life isn't hard anymore before you decide to be happy.
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Re: Crohn's disease
A few years back, when our kids were pretty young, we went on a multi-family, multi-day rafting trip on the Arkansas River in Colorado. There were 7 kids on the trip all under 10. Mr520 brought his river guitar and noodled in the background most nights around the campfire.
One family’s 6 year old, Fiona, had just been diagnosed with Crohn’s after years of being miserable but not having the words to convey her pain. Now it was her parents’ turn to be miserable, because all those years she complained and tried to make them understand she couldn’t eat, she wasn’t being picky or exaggerating, but they didn’t believe her and basically told her to suck it up.
Mom was freaking out about sand in the food and Fiona’s meds and the wind, rain, and lightening, and Dad was freaking out about Mom freaking out. (Actually, the conditions were intermittently awful for the first two days. Mom was absolutely right!) It was a tense few days and poor tiny 6 year old Fiona, who was feeling physically better than ever, felt every bitter word between them like a blow. By the end of day two, she was done.
Fiona changed the subject from fear and blame to Moving Forward. We came to a small weir (low-head dam) that was runnable, if a little gnarly with that logjam at the bottom. Our four boats eddied out above the weir, all touching, to decide whether to run or portage. Mom was insistent that they portage. Dad and Fiona wanted to run it. While they loudly “discussed” it, Fiona quietly got up, bouncewalked across the thwarts of the rafts to the farthest boat, and politely asked the captain if she could ride with them because it was getting cold and her parents were being silly. Everyone scootched over to make room, she plopped herself down, grabbed the hand loop, and eloquently refused to budge when Mom badgered.
“Let’s go. It’s getting dark,” she insisted.
It was a gnarly ride and Fiona was drenched but we made it to camp just before dark, thanks to Fiona not budging. A portage would have added an hour.
Mr520 played Tom Petty’s “Won’t Back Down” after dinner and we re-wrote the song to be about Fiona, singing loudly while the marshmallows toasted and the chocolate melted, and Fiona beamed:
One family’s 6 year old, Fiona, had just been diagnosed with Crohn’s after years of being miserable but not having the words to convey her pain. Now it was her parents’ turn to be miserable, because all those years she complained and tried to make them understand she couldn’t eat, she wasn’t being picky or exaggerating, but they didn’t believe her and basically told her to suck it up.
Mom was freaking out about sand in the food and Fiona’s meds and the wind, rain, and lightening, and Dad was freaking out about Mom freaking out. (Actually, the conditions were intermittently awful for the first two days. Mom was absolutely right!) It was a tense few days and poor tiny 6 year old Fiona, who was feeling physically better than ever, felt every bitter word between them like a blow. By the end of day two, she was done.
Fiona changed the subject from fear and blame to Moving Forward. We came to a small weir (low-head dam) that was runnable, if a little gnarly with that logjam at the bottom. Our four boats eddied out above the weir, all touching, to decide whether to run or portage. Mom was insistent that they portage. Dad and Fiona wanted to run it. While they loudly “discussed” it, Fiona quietly got up, bouncewalked across the thwarts of the rafts to the farthest boat, and politely asked the captain if she could ride with them because it was getting cold and her parents were being silly. Everyone scootched over to make room, she plopped herself down, grabbed the hand loop, and eloquently refused to budge when Mom badgered.
“Let’s go. It’s getting dark,” she insisted.
It was a gnarly ride and Fiona was drenched but we made it to camp just before dark, thanks to Fiona not budging. A portage would have added an hour.
Mr520 played Tom Petty’s “Won’t Back Down” after dinner and we re-wrote the song to be about Fiona, singing loudly while the marshmallows toasted and the chocolate melted, and Fiona beamed:
She graduated from college last year, a lovely young woman. Mom helped her manage the Crohn’s and she has stayed active and outdoorsy. She told us on a later trip that she never forgot us singing “Hey Fiona! There ain’t no easy way out.” But there is a way.Hey Fiona! There ain’t no easy way out.
....
No, I'll stand my ground
Won't be turned around
And I'll keep this river from draggin' me down
Gonna stand my ground
Re: Crohn's disease
That is really awesome Kate,
I could NOT imagine being diagnosed at 6 but then in our family one didn't go to the doctor unless one was not breathing or blood couldn't be stopped
Looking back I now recognize many times I should have been in the hospital or doctor but Crohn's disease wasn't something we knew about. I took Remicaide for about 12 years but after that long, I "failed" it and now I take Stelara. It has been barely 24 hours and I am almost pain free except for a slight punch in the gut residual pain but it is even less.
I could NOT imagine being diagnosed at 6 but then in our family one didn't go to the doctor unless one was not breathing or blood couldn't be stopped
Looking back I now recognize many times I should have been in the hospital or doctor but Crohn's disease wasn't something we knew about. I took Remicaide for about 12 years but after that long, I "failed" it and now I take Stelara. It has been barely 24 hours and I am almost pain free except for a slight punch in the gut residual pain but it is even less.
Re: Crohn's disease
What side effects have you had from Stelara? I was just reviewing three of the monoclonal therapies that work on the autoimmune pathway.
Re: Crohn's disease
It's really saddening to grow up and realize that one's parents really didn't care. I am not talking about the much better understanding of some diseases which we now have, I am talking about the fact that parents didn't take their children to see a doctor when their child was obviously suffering.sad-cafe wrote: ↑Thu Feb 25, 2021 3:20 am That is really awesome Kate,
I could NOT imagine being diagnosed at 6 but then in our family one didn't go to the doctor unless one was not breathing or blood couldn't be stopped
Looking back I now recognize many times I should have been in the hospital or doctor but Crohn's disease wasn't something we knew about. I took Remicaide for about 12 years but after that long, I "failed" it and now I take Stelara. It has been barely 24 hours and I am almost pain free except for a slight punch in the gut residual pain but it is even less.
I suffered from debilitating migraines as far back as I can remember. But my parents had six children and I was the oldest girl, so I was placed in charge of making dinner, the laundry, the dishes, the ironing, etc., because both my parents worked. They really didn't care that I was ill, because I was the free labour, and they needed me to do the work. They started caring when my younger sisters were ill with migraines, though. Left a lasting, and bitter memory.
So I am glad to hear that you are better now, and hope that you continue to be!
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Re: Crohn's disease
:BigHug:
"Mickey Mouse and I grew up together." - Ruthie Tompson, Disney animation checker and scene planner and one of the first women to become a member of the International Photographers Union in 1952.
Re: Crohn's disease
Really none-but, when it stops it is instant and your shot must be lined up back to back. It is much easier than infusions and it works almost instantly. There is not the draining like when I was taking Remicaide.
Re: Crohn's disease
Thank you!Azastan wrote: ↑Thu Feb 25, 2021 9:29 amIt's really saddening to grow up and realize that one's parents really didn't care. I am not talking about the much better understanding of some diseases which we now have, I am talking about the fact that parents didn't take their children to see a doctor when their child was obviously suffering.sad-cafe wrote: ↑Thu Feb 25, 2021 3:20 am That is really awesome Kate,
I could NOT imagine being diagnosed at 6 but then in our family one didn't go to the doctor unless one was not breathing or blood couldn't be stopped
Looking back I now recognize many times I should have been in the hospital or doctor but Crohn's disease wasn't something we knew about. I took Remicaide for about 12 years but after that long, I "failed" it and now I take Stelara. It has been barely 24 hours and I am almost pain free except for a slight punch in the gut residual pain but it is even less.
I suffered from debilitating migraines as far back as I can remember. But my parents had six children and I was the oldest girl, so I was placed in charge of making dinner, the laundry, the dishes, the ironing, etc., because both my parents worked. They really didn't care that I was ill, because I was the free labour, and they needed me to do the work. They started caring when my younger sisters were ill with migraines, though. Left a lasting, and bitter memory.
So I am glad to hear that you are better now, and hope that you continue to be!
I can relate. There were 4 girls and 2 boys. We girls cleaned the house and did all the dishes folded all the clothes and most of the cooking. My mom said there was no reason to have a dishwasher because she had 4. Her job was to smoke cigs and drink coffee and rock her nails across things. My sister that passed had surgery on her kneecaps (we have a weird thing where our kneecaps slide out of place) I was young at the time but I remember her doing dishes on crutches. When our baby brother tore his ACL he laid on the couch all the time.
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Re: Crohn's disease
Because I overshare, y'all are aware of the recent spelunking of my intestinal system. Due to the miracle of technology, I got the report yesterday. (MyChart is nice to have, gotta tell you.)
Seems I have inflammatory bowel disease of an unknown cause, diverticular disease-assocated colitis, and self-limited colitis. But, no malignancy nor dysplasia.
I'm thinking I probably need to change up my diet to help with the inflammation, but I'm not sure which direction to go. Should I go ahead and look at a Crohn's diet, if there is such a thing? I want to set up a consult with my colorectal doc to discuss next steps for the inflammation and all that.
Thoughts? Suggestions?
Seems I have inflammatory bowel disease of an unknown cause, diverticular disease-assocated colitis, and self-limited colitis. But, no malignancy nor dysplasia.
I'm thinking I probably need to change up my diet to help with the inflammation, but I'm not sure which direction to go. Should I go ahead and look at a Crohn's diet, if there is such a thing? I want to set up a consult with my colorectal doc to discuss next steps for the inflammation and all that.
Thoughts? Suggestions?
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Re: Crohn's disease
I don't have a specific diet.
My doctor told me to stay away from nuts, tomatoes and stuff with seeds.
My husband is allergic to Wheat so we follow a gluten free diet.
I must say I feel better doing that . When I eat something regular -pizza, regular bread and things my gut feels bloated
My doctor told me to stay away from nuts, tomatoes and stuff with seeds.
My husband is allergic to Wheat so we follow a gluten free diet.
I must say I feel better doing that . When I eat something regular -pizza, regular bread and things my gut feels bloated
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Re: Crohn's disease
Jean. Check online for the national organization for those with IBD. It should have updated everything. Nice to have a diagnosis, but not necessarily that one.
"Mickey Mouse and I grew up together." - Ruthie Tompson, Disney animation checker and scene planner and one of the first women to become a member of the International Photographers Union in 1952.
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Re: Crohn's disease
Cauliflower crust pizza is da bomb.
Re: Crohn's disease
Daiya makes a gluten free frozen pizza with vegan cheese that is actually quite edible. I’m not a vegan, and I don’t have sensitivity to wheat, but I am allergic to cheese, and I love pizza, so I decided to give it a try. The shocking thing is I can get it in this cultural backwater, but it’s about the only vegan cheese thing around here.
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Re: Crohn's disease
I have a sister-in-law who is lactose intolerant. I wonder if she would like something like that.Maybenaut wrote: ↑Mon Dec 13, 2021 8:36 am Daiya makes a gluten free frozen pizza with vegan cheese that is actually quite edible. I’m not a vegan, and I don’t have sensitivity to wheat, but I am allergic to cheese, and I love pizza, so I decided to give it a try. The shocking thing is I can get it in this cultural backwater, but it’s about the only vegan cheese thing around here.
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Re: Crohn's disease
A woman I greatly admire was a vegetarian and her daughter convinced her to go vegan. She confided that she really missed "real" cheese. IDK if things have improved since then. For your sake, I hope so!Maybenaut wrote: ↑Mon Dec 13, 2021 8:36 am Daiya makes a gluten free frozen pizza with vegan cheese that is actually quite edible. I’m not a vegan, and I don’t have sensitivity to wheat, but I am allergic to cheese, and I love pizza, so I decided to give it a try. The shocking thing is I can get it in this cultural backwater, but it’s about the only vegan cheese thing around here.
Re: Crohn's disease
I keep the provolone "cheese" in stock in my fridge. My grandson is allergic to cow's milk products, and he loves toasted cheeses sandwiches made from it. To use up a package, I made a toasted cheese sandwich with it one time for myself. It was actually really good. I'll have to see about the pizza.
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Re: Crohn's disease
I too miss real cheese. But they have gotten reasonably good at making fake cheese edible. Diaya is OK, but there are better brands. Kite Hill makes most excellent cream cheeses — many flavors, all pretty good. They also make a good vegan butter, which tastes and feels more like butter than most margarines. 365 brand (Whole Foods) sliced vegan cheese is pretty good, but I prefer Violife, which makes a great Smoked Gouda.filly wrote: ↑Mon Dec 13, 2021 11:54 amA woman I greatly admire was a vegetarian and her daughter convinced her to go vegan. She confided that she really missed "real" cheese. IDK if things have improved since then. For your sake, I hope so!Maybenaut wrote: ↑Mon Dec 13, 2021 8:36 am Daiya makes a gluten free frozen pizza with vegan cheese that is actually quite edible. I’m not a vegan, and I don’t have sensitivity to wheat, but I am allergic to cheese, and I love pizza, so I decided to give it a try. The shocking thing is I can get it in this cultural backwater, but it’s about the only vegan cheese thing around here.
I also make grilled cheese sandwiches using my own cashew and tapioca cheese from this recipe which I found on itdoesnttastelikechicken.com, a vegan website. The author calls it a mozzarella, but to me it’s more like an asiago fondue. I make a double batch, and instead of cooking it, I pour 2oz into ice cube trays and freeze (I have the large silicon trays with 3oz cubes and a snap-on lid). I thaw one in the microwave for 30 seconds to a minute (you want it half thawed), then I stir it with a spoon. The heat acts on the tapioca to make it stretchy. I spread that on bread to make a sandwich, then brown it on either side on a hot griddle.
https://itdoesnttastelikechicken.com/me ... mozarella/
"Hey! We left this England place because it was bogus, and if we don't get some cool rules ourselves, pronto, we'll just be bogus too!" -- Thomas Jefferson