I always feel a lot more positive about my IBD after watching your videos because you're so positive. It makes me feel like I can deal with my symptoms like a brave person haha :)
Feels like labor! I've been dead sick since Christmas eve not able to move not even to make it to the hospital. Its been 4-5 days now? Idk I've lost count just laying in bed dying.
I started getting serious trouble last winter with exhaustion, my joints ache and muscles when I’m in flaire which has me completely exhausted. Then I get terrible diarrhea after a few days of this. I’ve changed my diet so as to not get irritation but it still hit bad. Doctors are dragging their feet to diagnose crohns although I spent a week in the icu with low hemoglobin. Another scope tomorroe
I don’t have IBD but I have chronic IBS and I do have flares with that. It’s always when I have a virus. I get so bloated and full of gas and even though I’m passing enough wind to fly to space the feeling doesn’t go away and I get no relief. It’s the worst, it will last days. Makes me nauseous too. My main symptoms are abdominal pain, gas and constipation.
I’ve had IBS since 13. I ignored it for 40 years. It’s now much more serious. I’ll be testing soon for crohns/UC and a host of rheumatology issues that could be related. You’re fine until you aren’t. Take care of yourself.
I have lived with mild to moderate U/C since May of 1966. There is one thing that I am curious about. Considering that you have not had your colon removed, considering the state of what appears to be permanent scaring and constriction, and that the risk of aggressive color cancer is substantially higher than the population, would it not be prudent to have it removed, but preserving as much of the rectum as possible, to be rid of that risk? The reason for keeping as much of the rectum as possible is so that a pouch can be constructed at a later date. I do have colonoscopy done on a yearly or bi-yearly frequency as a precaution. Back in 1996, I was in a clinical trial for Aceaman, which was a dried capsule concentrate of Alera verae that in my case dramatically cleared up any sign of U/C while the medicine was available during the trial. An ileostomy is something I would not particularly want!
Does it ever feel like your in "labor"? I keep having these "fits" as I call them when I suddenly get hot- then violently vomiting for hours and the pain comes and goes like I'm in labor.
Thanks Maggie, another great video. I would like to ask you how you manage your fluid intake. I'm have a ileostomy 8 month, and I when I take fluids, my ostomy pouch fills up rather quickly, I would drinking about 2 litres per day, food also transits quickly too, sometimes a little over a hour, depending on what I eat. My stoma nurse has suggested not to eat and drink together, not to consume fluids until about 30 minutes or so after eating. Have you any thoughts on this? K..
Thanks! So here's what I have noticed with fluid intake - if I take in just water, it does not seem to affect mt output, but if I drink liquid type foods (milk shakes, icecream, etc) my output becomes VERY watery. Spreading the times of eating and drinking does seem to help - your stoma nurse may be associating the problems to "dumping syndrome" where the stomach will dump the food too quickly from the stomach into the intestines, causing diarrhea. If you drink water at the same time as eating the food, it enhances this effect. It could possibly be related!
I never know if I have a flare, I’m always in pain but sometimes my pain is so bad I can’t sit up I can’t sleep. So I never know when to go to the Drs. I’ve not been able to eat for a few months I have bites of food but I’m in so much pain and so scared of eating because of the prolonged pain. But right now it’s awfully painful. I also never know when to go to the hospital, I try to ride it out even if I’m crying in pain
Know what I find weird? My stoma nurse said the small intestine has barely any pain receptors, hence why touching the stoma feels bizarrely sensation-less. However, when I'm in a flare, I'm damn sure I can feel pain. Wonder why that is?
I HAVE ALWAYS WONDERED THIS!! I mean, I definitely can't feel my stoma when I touch it, but then why would IBD cause all this pain? It makes no sense! I'm gonna have to look into this...
Im in so much fucking pain i cant handle it n it hurts like fucking hell, its a little bit blocked n i cant even get out of my bed does anyone have any tips?
Okay after hearing about your 200 year old house I soo want a house tour! Including the basement ;)
Very nice information I struggle with anxiety and depression when am in a flare then wake up few days later wondering why I felt like that
Thank you - and definitely agree with that!
I always feel a lot more positive about my IBD after watching your videos because you're so positive. It makes me feel like I can deal with my symptoms like a brave person haha :)
Aww thanks so much, I'm glad I can put a positive spin on such a negative disease!
Going through one right now , it's awful kinda feels like sharp contracting pain that comes and goes
Feels like labor! I've been dead sick since Christmas eve not able to move not even to make it to the hospital. Its been 4-5 days now? Idk I've lost count just laying in bed dying.
Im in agony and im not sure how to deal with it. Im only 17 n i got out of hospital 2 days ago. I stupidly ate a chinnese n got a severe flare up
I don't have IBD but I love watching your videos because of your great cheerful personality and beautiful looks :o)
Thank you so much Steve!!
you dirty old man
Your channel is gonna grow so much 💕 love it! Keep it up
Aw thanks! :)
I started getting serious trouble last winter with exhaustion, my joints ache and muscles when I’m in flaire which has me completely exhausted. Then I get terrible diarrhea after a few days of this. I’ve changed my diet so as to not get irritation but it still hit bad. Doctors are dragging their feet to diagnose crohns although I spent a week in the icu with low hemoglobin. Another scope tomorroe
I don’t have IBD but I have chronic IBS and I do have flares with that. It’s always when I have a virus. I get so bloated and full of gas and even though I’m passing enough wind to fly to space the feeling doesn’t go away and I get no relief. It’s the worst, it will last days. Makes me nauseous too. My main symptoms are abdominal pain, gas and constipation.
I’ve had IBS since 13. I ignored it for 40 years. It’s now much more serious. I’ll be testing soon for crohns/UC and a host of rheumatology issues that could be related. You’re fine until you aren’t. Take care of yourself.
I love this channel so much 💗
I have lived with mild to moderate U/C since May of 1966. There is one thing that I am curious about. Considering that you have not had your colon removed, considering the state of what appears to be permanent scaring and constriction, and that the risk of aggressive color cancer is substantially higher than the population, would it not be prudent to have it removed, but preserving as much of the rectum as possible, to be rid of that risk? The reason for keeping as much of the rectum as possible is so that a pouch can be constructed at a later date. I do have colonoscopy done on a yearly or bi-yearly frequency as a precaution. Back in 1996, I was in a clinical trial for Aceaman, which was a dried capsule concentrate of Alera verae that in my case dramatically cleared up any sign of U/C while the medicine was available during the trial. An ileostomy is something I would not particularly want!
What about hair thinning and hair loss with crohns I've had this happen and my hair hasn't really recovered From meds and crohns flares ?
Definitely another symptoms, whether it be from meds or the stress a flare puts on the body!
If you on steroids for treatment it will make you loose your hair, with meds it's hard to get it back!
What do you drink during a flair up?
Does it ever feel like your in "labor"? I keep having these "fits" as I call them when I suddenly get hot- then violently vomiting for hours and the pain comes and goes like I'm in labor.
That sounds like you may have a blockage! I'd go to ER next time it happens to see if it can be caught!
My pain comes like labor contractions. Usually when they are like that I have cdiff
Thanks Maggie, another great video.
I would like to ask you how you manage your fluid intake.
I'm have a ileostomy 8 month, and I when I take fluids, my ostomy pouch fills up rather quickly, I would drinking about 2 litres per day, food also transits quickly too, sometimes a little over a hour, depending on what I eat.
My stoma nurse has suggested not to eat and drink together, not to consume fluids until about 30 minutes or so after eating.
Have you any thoughts on this?
K..
Thanks! So here's what I have noticed with fluid intake - if I take in just water, it does not seem to affect mt output, but if I drink liquid type foods (milk shakes, icecream, etc) my output becomes VERY watery. Spreading the times of eating and drinking does seem to help - your stoma nurse may be associating the problems to "dumping syndrome" where the stomach will dump the food too quickly from the stomach into the intestines, causing diarrhea. If you drink water at the same time as eating the food, it enhances this effect. It could possibly be related!
Thanks for the information and explaining the mechanics behind it, make sense, I will try to be more mindful of my fluid intake.
Willy nelson
Hi Maggie geat video. I would love a tore of your creepy house it must have a lot of history do you know of any of it?
I never know if I have a flare, I’m always in pain but sometimes my pain is so bad I can’t sit up I can’t sleep. So I never know when to go to the Drs. I’ve not been able to eat for a few months I have bites of food but I’m in so much pain and so scared of eating because of the prolonged pain. But right now it’s awfully painful. I also never know when to go to the hospital, I try to ride it out even if I’m crying in pain
Now how are you
House tour please! 😍
Know what I find weird? My stoma nurse said the small intestine has barely any pain receptors, hence why touching the stoma feels bizarrely sensation-less. However, when I'm in a flare, I'm damn sure I can feel pain. Wonder why that is?
I HAVE ALWAYS WONDERED THIS!! I mean, I definitely can't feel my stoma when I touch it, but then why would IBD cause all this pain? It makes no sense! I'm gonna have to look into this...
Im in so much fucking pain i cant handle it n it hurts like fucking hell, its a little bit blocked n i cant even get out of my bed does anyone have any tips?
Are you better yet? Hope so!
@@indiradinah7715 yeah! so much better actually
You r sooooooooo beautiful 💛💛💛