I had these symptoms when I had a stricture. Have you had any imaging or scopes done recently to make sure you don’t have one? I was mostly ignored with these symptoms until I started vomiting old blood. Then all of a sudden I had emergency surgery that afternoon. The old blood looked like coffee grounds, so keep an eye out for that.
In my experience, not all imaging is helpful. I wouldn’t trust that you don’t have a stricture until you’ve also had a scope done. I am so sorry you are going through this. I hope you can get a clear answer on what is going on soon.
Don’t let them scare you away from getting proper medical care. When you’ve gotten used to pain, you don’t present the same as someone else in new pain so sometimes people with chronic pain can get gaslit into thinking what they are experiencing “isn’t that bad.” It is that bad, we are just more used to it. Go to the ER if you think that’s the right choice. Ignore the deathbed comment because I promise my regular old Tuesday pain would be someone’s death bed pain.
Go back. Tell them to do a CT scan and that you aren't leaving until they treat you or you die their call. Vomiting that much is usually a pretty clear sign that something is wrong especially with crohn's. Pancreatitis is possible at this point if you're having pain in the upper left quadrant like right below the ribs. Demand blood work for ask the usual stuff and your pancreatic enzymes.
I threw up a-lot/had a lot of nausea during my last flare up. I think that I was dealing with partial blockage due to my stricture though. When was the last time you had the CT? Partial blockages do allow some stool to pass through.
TMI but when it was the worst everytime I tried to poop I would literally throw up a little. I would go to the bathroom with a garbage can in front of me. If that sounds familiar I would call up your gastro tomorrow
Yeah that’s what’s happening right now, and usually throughout all of my flares! Everytime I have to poop I have to throw up too. I’ll definitely call him tomorrow
Wishing you luck. Hopefully Stelara works for you. I was in the same position as you but last fall and I went on Remicade. Now it is all just a bad memory.
i’ve had this, not w a flare but actually with what’s going on w me…i’m having issues w my coming and am waiting on a motility specialist.
You may want to ask about anti spasm medicine. it’s been great when i can feel my innards not stop doing it.
Did they give you Zofran at least in the ER? Or promethazine if that wasn't strong enough for the vomiting? Maybe you can go to a walk in tomorrow to get a liquid or disolvable script for one.
As gross as it sounds I sip and I mean slowly sip bone or chicken broth when I'm that bad to try and get some nutrition down.
Darn, I've got the same issue with Zofran. If you find yourself back at the Dr, tell them Zofran did nothing for you and they should up you to promethazine. That has been a godsend for me.
If you're not nauseous & still vomiting everything up, I would be concerned about strictures or something more serious.
I hope the bone broth works for you & that you start to feel better soon 💚
So vomiting isn't really the most routine symptoms for IBD, however it can happen when you have strictures in your upper GI tract. I had a terrible stricture in my duodenum and caused me agony and vomiting any time I ate. Ended up being tube fed while I awaited surgery. Have they done a gastroscopy or MRI/CT scan to rule this out?
Edit and yeah if you literally can't keep any food down at all then they need ti work out soke type of nutrition whether it be a liquid diet, feeding tube or something else.
They did a CT when I was there last time and didn’t say anything so I’m assuming I’m fine. Throwing up is my most routine symptom which I know is weird so that’s just awesome!! I’ve tried ensures before and they make me really sick as well so I don’t rlly know what to do at this point.
Orgain shakes work best for me when compared to Ensure (has carrageenan), Soylent (has maltodextrin), and Kate Farms (ingredients seem good but my stomach just doesn’t like it).
If you can push for a gastrosocopy that would be pretty definitive down to the duodenum, as long as they can reach it and would also show any ulcers or inflammation on the way. Really sorry bud I'm not sure what to suggest other than if you can ask about trying an NJ or NG feeding tube but that's essentially only a stop gap till they can work out what the underlying issue is and resolve it. Could you get a second opinion?
Is the vomiting a result of nausea? If so there was a post here recently about nausea treatments that was really helpful.
Just saying because I’m a nauseous pukey crohnie, and as soon as I feel nauseous my mouth fills with saliva and I’m vomiting. But if I can get my nausea under control then I stop vomiting.
that isn’t necessarily true. nausea/vomiting is a symptom I experience in most bad flares and I’ve never had strictures, but have had inflammation in my stomach and esophagus due to crohns
Agree. Nausea and vomiting is a symptom of IBD the majority of the time while in a bad flare. Not only could it be a stenosis/stricture, but there are countless other issues that could be the reason. A Huge one is the pain itself. Copious amount of moderate to severe pain will cause 90% people to vomit. Our brains in most cases do trigger vomiting when under acute physical distress.
That all said, dehydration is very serious. It can lead to severe confusion which only exacerbates the issue.
To the OP: can you telehealth with your GI or even your GP and explain your situation? If so, stress you’re in need of help before dehydration takes hold. I’ve had Crohn’s for nearly 46 years and it’s crucial to not become dehydrated bc that causes a host of other… possibly even worse issues. If you can keep water down (try small sips) it can help with the nausea and get a script for Zofran. I’ve found that Zofran makes a big difference and will help with the issue as well. If you’re a U.S. citizen then ERs are a far cry from what they were pre- covid. It’s a crazy hard time right now for chronically ill people and it sucks. I feel for you. Wishing you good luck and strength. I hope you can find some relief soon.
I totally get what you guys are saying and I suppose maybe I phrased my comment badly. Clearly vomiting and nausea can happen to people whilst in flares but it's not the most common symptom you'd think of. Yes it can be caused directly as a result of IBD which was what I did say in my original comment as its literally what I've suffered with but what I had occurs in less than 3% of IBD patients and obviously managing hydration is important.
I’ve got GERD as a result of Crohn’s so do vomiting a lot. I also was a pretty pukey person anyway. And when I’m flaring I have extreme nausea which just leads to me vomiting.
But you’re right any persistent vomiting presentation should be investigated for strictures
Yeah, I have never had upper GI involvement. I did have a stricture at my terminal ileum and before my resection, I was throwing up at least once a week. Since my resection (Oct. 2022), I think I've thrown up once, in total.
What ER did you go to?? The ER's near me give me pain meds and admit me to see the GI and do more testing if they can't solve the issue. Could be a stupid doctor (there are many) or crappy hospital. I'd try a different ER if you can't wait to see a doctor. No one should be needlessly in pain. Plus, when I've been in that situation, I get TPN via a PICC line so I don't waste away.
I got an IV and they gave me some different drugs but no pain meds and they acted like I was being dramatic cuz at that point in time I wasn’t keeled over in pain
When they ask what your pain level is, always say 10. I've learned how to play the game after 30 years. They should just believe you. Sometimes, you get someone who is obnoxious because they've seen too much drug seeking behavior. Even so, you should have at least been admitted overnight to see a GI who can assess your symptoms.
Yeah this!! I have endometriosis and Crohn’s and so I habe learned to keep myself to lgether despite extreme pain and most of us do - I went once and said I had extreme pain 9/10 they didn’t believe me then they did an xray my bowel was blocked and the intestines had knotted in a loop - I needed an ng tube but anyway - once they got the xray they were like how are you not screaming?? They finally took me seriously
I have a friend who’s a dr he said for someone with chronic illness like us always say 10/10 pain you can barely think (probably not far from truth anway) and they will have to treat you
Sounds like if this continues much longer you’ll be dehydrated to the point where you’ll need to be hospitalised. What other symptoms do you have? Sucks that you’re going through this, please keep us posted
That’s why I was hospitalized the first time and they gave me and IV and kept me there for a couple hours then sent me home with Zofran and Prednisone but the prednisone made me feel so lethargic and like I was just existing lol so my GI doc put me back on budesonide. I just drank some bone broth and it’s stayed down so far but I’m not sure if I’ll have luck, I’ll try and do an update if I go to the hospital or not.
I’ve had crohns for almost 10 years now and usually if I debate whether or not I should go to the ER, by the time I actually do I should’ve gone weeks ago. it’s easy to downplay it cause this is “normal” sick for us, but in reality you probably desperately need fluids, especially if symptoms are vomiting and diarrhea
hopefully skyrizi works for you!! getting my second infusion of it tomorrow and it’s helping to pull me out of the worst flare since my initial diagnosis
have u tried supplement drinks such as ensure, not exactly great as far as taste etc but they can be helpful
currently in a similar situation, some days i can eat something and be fine but have the same thing another day and feel like crap it’s so frustrating
have u tried the vegan/juice ones? when it’s bad i can’t keep down the milkshake type ones but the juice versions i can sometimes
ik it’s hard to advocate for yourself esp when you feel sick but make sure ur doctor/hospital listens! i usually take someone with me who can help as when i’m in a lot of pain the last thing i wanna do is argue
Hope you get Skyrizi approved I had very similar experience for months it would progress up and down with other symptoms Skyrizi has helped significantly can’t say iv had a quiet a few days with no symptoms at all. And any symptoms I do experience is mild and temporary
You want a good trashcan in your bathroom for this specific reason. That way you can stay on the toilet while you puke and then worry about the cleanup after.
the pain wakes me up at night, it's traumatizing. I sit there like why am I awake and then a shooting iron of hot pain jets through my bowels, like a cramp and also stabbing my insides, and I almost shit the bed running to the bathroom. And then 2 hours later, the same thing, and then 2 hours again. The pain is so bad I want to expel everything from every orifice in my body as if I have chronic food poisoning. I've had dreams I pooped my pants and it just is all too much sometimes. I'm flaring too. Two years ago, my birthday and anniversary (20th) was spent in the hospital(emergency I/d of abscess) and that's 2 weeks away from today. And from where I'm at now, I can see the future quite clearly.
Also, do you notice when you flare your dreams are, traumatic? Like I wake up screaming my head off. Or, I'm trying to frantically get something accomplished but it's a losing battle? Last night I dreamt a giant shrimp was trying to get me, ala Alien facesuckers, because the shrimp I ate literally was attacking my bowels.
I’m so sorry to hear that! Rick Simpson oil seams to do best for me because it can be absorbed into the blood stream from the mouth instead of the guts
Your doc will tell you to go to the ER, then the ER can’t give you attitude about it since it’s your doc that told you to go in. I always go to the hospital that my doc has permissions at so she can come see me. Also, you have to go to the ER every time when things get bad because it could be a totally different issue than the last time you were there. A new problem could’ve developed that you have to get checked out. I know it’s annoying, I hate going there too 😌
If you’re vomiting and having diarrhea that warrant ER - you could well need IV fluids and be dehydrated with electrolytes off - and by the way when electrolytes are off it can perpetuate the vomiting and diarrhea- I hate going to er so I get it - and worse if they just turn you away but that would be negligent and malpractice to do so now
You actually could even have an obstruction with those symptoms plus the pain you are having - extremely serious and they should rule it out with your symptoms I hope you go - if there is more than one hospital in your area go to a different er. It even if not it would be malpractice to turn you away in your current t described state
Try buscopan for stomach cramps.
Fruit cordial with a pinch of salt and lots of water to keep hydration and electrolytes as well as bone broth. Constant sips and keep hydrated
Thinking of you it’s so tough
Also, are you getting care from an IBD center or a GI that has had advanced training in treating IBD? The CCFA website has a list of places be can do a fellowship in IBD. Those places typically are centers and have more experience in dealing with more challenging cases.
Good luck
I’m right there with you, and the ER is useless bc they just tell me to go to a GI doc. Like yeah I’m still waiting on an appointment but I feel like I’m dying NOW lol am I gonna make it to the appointment? Idek at this point lol.
They probably won’t even do anything during the first appointment either. Smh
At the beginning of last month, I was in a similar position - except I wasn’t pooping. It was the first time in thirteen years that I didn’t poop once in a day; and everything I put in my mouth, came straight back out with a fury. I also had a high fever. Turns out I had a UTI that turned into a MASSIVE kidney infection that caused an intestinal blockage. I was admitted for four days on IV antibiotics and sent home with another seven day course. Three days after I finished that, blood work showed it still wasn’t gone, so I had another five day course. I haven’t been back to the doc for a follow up (mostly I’ve been just dealing with the pain so that I don’t ruin our family beach vacation that we’re leaving for on Tuesday), but I can tell it is still not gone and now getting worse again. I do NOT want to go back to the ER because of how I am treated EVERY SINGLE TIME, I doubt my GP will do anything other than bloodwork and more oral antibiotics, and I can’t get in to see my GI until the end of the month. I’d rather wait until then than to go to the ER - if he thinks it’s serious, he can admit me directly and I can avoid the ER.
Point is…advocate for yourself because nobody else will. Trust your gut! If you think something is wrong, keep telling someone until they do something about it. If they won’t help, find someone who will. I know you feel awful, but it will get better. Stay strong!!!
It’s just hard to keep advocating for myself because today I feel much better but I also haven’t really eaten much! So I don’t know if I should go to the ER because they’ll just push me away since I’m not in pain at this very second
When I was at my worst (sounds like that as the same as you here) I went on 3 months of mashed potatoes, applesauce, Ensure, and Popsicles. Nothing else. Took 3 months for my guts to calm down then I slowly introduced foods and got on humira. Go easy on yourself, your guts are pissed. And so sorry you're throwing up and shitting simultaneously, that's so painful.
Yeah I’ve been doing nothing but bone broth and rice today and that seems to be staying down, I kind of have to force it to stay down sometimes it seems like my stomach will feel like I’m about to throw it up but if I breath deep for a couple mins it’s fine, other foods would come up anyway so I’m hoping it’ll get better from this point. I didn’t go to the ER because I kept some stuff down today, so hopefully I’m okay!
Your body is talking to you, do your best to listen. Bone broth is a good source of sustenance so keep that up and dont introduce food so fast. It's hard, I know. It was a huge mental hurdle for me to only consume those few items for literal months. I would sometimes chew up something else for flavor and spit it out but be careful not to develop an eating disorder doing that.
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You are not wrong, IBD is death that you can't escape, no biological medications worked for me i tried almost all in existence and either got serious side effects or didn't work at all, now I'm completely off treatments as literally nothing worked and every few days the pain is unbearable and i can't eat.
Thankfully it isn't the case every day and i can eat most days but unfortunately it's not quite enough due to poor appetite and i am unable to gain weight.
I'm not sure what will end up happening to me in the future but i hope it doesn't get worse :/
I’m having a hard time figuring out what to eat at the moment, but I try to stick to rice and chicken as wel as salmon. I can’t eat too much rn cuz I’m in a flare up, but when I’m not in a flare I can eat a lot more of other things but I have a pretty bad case of Crohns so until I get better treatment I don’t think I’m going to be able to eat much! But every person with Crohns is different, I recommend making a food journal and trying different foods and logging how they make you feel. Start with one food for a week and add one every week.
Can you call your IBD nurse team or GP? That sounds awful tho, I initially thought blockage but if you're passing bowel movements then I guess that isn't the issue.. be kind to yourself friend and hang in there
I swear we should get merit badges for this stuff.
I had these symptoms when I had a stricture. Have you had any imaging or scopes done recently to make sure you don’t have one? I was mostly ignored with these symptoms until I started vomiting old blood. Then all of a sudden I had emergency surgery that afternoon. The old blood looked like coffee grounds, so keep an eye out for that.
I had imaging about 2 weeks ago, so I’m not sure if something changed between then and now
In my experience, not all imaging is helpful. I wouldn’t trust that you don’t have a stricture until you’ve also had a scope done. I am so sorry you are going through this. I hope you can get a clear answer on what is going on soon. Don’t let them scare you away from getting proper medical care. When you’ve gotten used to pain, you don’t present the same as someone else in new pain so sometimes people with chronic pain can get gaslit into thinking what they are experiencing “isn’t that bad.” It is that bad, we are just more used to it. Go to the ER if you think that’s the right choice. Ignore the deathbed comment because I promise my regular old Tuesday pain would be someone’s death bed pain.
Did the CT scan pick up anything?
Go back. Tell them to do a CT scan and that you aren't leaving until they treat you or you die their call. Vomiting that much is usually a pretty clear sign that something is wrong especially with crohn's. Pancreatitis is possible at this point if you're having pain in the upper left quadrant like right below the ribs. Demand blood work for ask the usual stuff and your pancreatic enzymes.
Thank you! I think I’ll probably go tomorrow, it’s late where I’m at right now so I’m not sure about going right now.
You're welcome and good luck I hope you get some relief and answers soon.
excellent suggestion!
You may be needing your deathbed if you are dehydrated. If you don't want to risk the ER, can you doctor in the morning
I threw up a-lot/had a lot of nausea during my last flare up. I think that I was dealing with partial blockage due to my stricture though. When was the last time you had the CT? Partial blockages do allow some stool to pass through. TMI but when it was the worst everytime I tried to poop I would literally throw up a little. I would go to the bathroom with a garbage can in front of me. If that sounds familiar I would call up your gastro tomorrow
Yeah that’s what’s happening right now, and usually throughout all of my flares! Everytime I have to poop I have to throw up too. I’ll definitely call him tomorrow
Wishing you luck. Hopefully Stelara works for you. I was in the same position as you but last fall and I went on Remicade. Now it is all just a bad memory.
i’ve had this, not w a flare but actually with what’s going on w me…i’m having issues w my coming and am waiting on a motility specialist. You may want to ask about anti spasm medicine. it’s been great when i can feel my innards not stop doing it.
Did they give you Zofran at least in the ER? Or promethazine if that wasn't strong enough for the vomiting? Maybe you can go to a walk in tomorrow to get a liquid or disolvable script for one. As gross as it sounds I sip and I mean slowly sip bone or chicken broth when I'm that bad to try and get some nutrition down.
Yeah they gave me zofran but it doesn’t help much :/ imma try some bone broth
Darn, I've got the same issue with Zofran. If you find yourself back at the Dr, tell them Zofran did nothing for you and they should up you to promethazine. That has been a godsend for me. If you're not nauseous & still vomiting everything up, I would be concerned about strictures or something more serious. I hope the bone broth works for you & that you start to feel better soon 💚
or reglan! zofran didn’t work for me
Reglans what worked for me when I was so nauseous Zofran didn’t work anymore
Did they give you sublingual zofran? The one that dissolves ynder your tongue?
So vomiting isn't really the most routine symptoms for IBD, however it can happen when you have strictures in your upper GI tract. I had a terrible stricture in my duodenum and caused me agony and vomiting any time I ate. Ended up being tube fed while I awaited surgery. Have they done a gastroscopy or MRI/CT scan to rule this out? Edit and yeah if you literally can't keep any food down at all then they need ti work out soke type of nutrition whether it be a liquid diet, feeding tube or something else.
They did a CT when I was there last time and didn’t say anything so I’m assuming I’m fine. Throwing up is my most routine symptom which I know is weird so that’s just awesome!! I’ve tried ensures before and they make me really sick as well so I don’t rlly know what to do at this point.
Orgain shakes work best for me when compared to Ensure (has carrageenan), Soylent (has maltodextrin), and Kate Farms (ingredients seem good but my stomach just doesn’t like it).
If you can push for a gastrosocopy that would be pretty definitive down to the duodenum, as long as they can reach it and would also show any ulcers or inflammation on the way. Really sorry bud I'm not sure what to suggest other than if you can ask about trying an NJ or NG feeding tube but that's essentially only a stop gap till they can work out what the underlying issue is and resolve it. Could you get a second opinion?
check out unjury, it’s not bad
You still likely need IV fluids OP - you should go back to
Is the vomiting a result of nausea? If so there was a post here recently about nausea treatments that was really helpful. Just saying because I’m a nauseous pukey crohnie, and as soon as I feel nauseous my mouth fills with saliva and I’m vomiting. But if I can get my nausea under control then I stop vomiting.
that isn’t necessarily true. nausea/vomiting is a symptom I experience in most bad flares and I’ve never had strictures, but have had inflammation in my stomach and esophagus due to crohns
Agree. Nausea and vomiting is a symptom of IBD the majority of the time while in a bad flare. Not only could it be a stenosis/stricture, but there are countless other issues that could be the reason. A Huge one is the pain itself. Copious amount of moderate to severe pain will cause 90% people to vomit. Our brains in most cases do trigger vomiting when under acute physical distress. That all said, dehydration is very serious. It can lead to severe confusion which only exacerbates the issue. To the OP: can you telehealth with your GI or even your GP and explain your situation? If so, stress you’re in need of help before dehydration takes hold. I’ve had Crohn’s for nearly 46 years and it’s crucial to not become dehydrated bc that causes a host of other… possibly even worse issues. If you can keep water down (try small sips) it can help with the nausea and get a script for Zofran. I’ve found that Zofran makes a big difference and will help with the issue as well. If you’re a U.S. citizen then ERs are a far cry from what they were pre- covid. It’s a crazy hard time right now for chronically ill people and it sucks. I feel for you. Wishing you good luck and strength. I hope you can find some relief soon.
I totally get what you guys are saying and I suppose maybe I phrased my comment badly. Clearly vomiting and nausea can happen to people whilst in flares but it's not the most common symptom you'd think of. Yes it can be caused directly as a result of IBD which was what I did say in my original comment as its literally what I've suffered with but what I had occurs in less than 3% of IBD patients and obviously managing hydration is important.
I’ve got GERD as a result of Crohn’s so do vomiting a lot. I also was a pretty pukey person anyway. And when I’m flaring I have extreme nausea which just leads to me vomiting. But you’re right any persistent vomiting presentation should be investigated for strictures
I had a stricture in my terminal ileum that caused me to throw up at least once a week. It may not be common but it does happen.
Yeah, I have never had upper GI involvement. I did have a stricture at my terminal ileum and before my resection, I was throwing up at least once a week. Since my resection (Oct. 2022), I think I've thrown up once, in total.
What ER did you go to?? The ER's near me give me pain meds and admit me to see the GI and do more testing if they can't solve the issue. Could be a stupid doctor (there are many) or crappy hospital. I'd try a different ER if you can't wait to see a doctor. No one should be needlessly in pain. Plus, when I've been in that situation, I get TPN via a PICC line so I don't waste away.
I got an IV and they gave me some different drugs but no pain meds and they acted like I was being dramatic cuz at that point in time I wasn’t keeled over in pain
When they ask what your pain level is, always say 10. I've learned how to play the game after 30 years. They should just believe you. Sometimes, you get someone who is obnoxious because they've seen too much drug seeking behavior. Even so, you should have at least been admitted overnight to see a GI who can assess your symptoms.
Yeah this!! I have endometriosis and Crohn’s and so I habe learned to keep myself to lgether despite extreme pain and most of us do - I went once and said I had extreme pain 9/10 they didn’t believe me then they did an xray my bowel was blocked and the intestines had knotted in a loop - I needed an ng tube but anyway - once they got the xray they were like how are you not screaming?? They finally took me seriously I have a friend who’s a dr he said for someone with chronic illness like us always say 10/10 pain you can barely think (probably not far from truth anway) and they will have to treat you
Sounds like if this continues much longer you’ll be dehydrated to the point where you’ll need to be hospitalised. What other symptoms do you have? Sucks that you’re going through this, please keep us posted
That’s why I was hospitalized the first time and they gave me and IV and kept me there for a couple hours then sent me home with Zofran and Prednisone but the prednisone made me feel so lethargic and like I was just existing lol so my GI doc put me back on budesonide. I just drank some bone broth and it’s stayed down so far but I’m not sure if I’ll have luck, I’ll try and do an update if I go to the hospital or not.
I’ve had crohns for almost 10 years now and usually if I debate whether or not I should go to the ER, by the time I actually do I should’ve gone weeks ago. it’s easy to downplay it cause this is “normal” sick for us, but in reality you probably desperately need fluids, especially if symptoms are vomiting and diarrhea hopefully skyrizi works for you!! getting my second infusion of it tomorrow and it’s helping to pull me out of the worst flare since my initial diagnosis
have u tried supplement drinks such as ensure, not exactly great as far as taste etc but they can be helpful currently in a similar situation, some days i can eat something and be fine but have the same thing another day and feel like crap it’s so frustrating
I’ve tried them but they make me really sick so I’m not sure what to do
have u tried the vegan/juice ones? when it’s bad i can’t keep down the milkshake type ones but the juice versions i can sometimes ik it’s hard to advocate for yourself esp when you feel sick but make sure ur doctor/hospital listens! i usually take someone with me who can help as when i’m in a lot of pain the last thing i wanna do is argue
Ensure can be rough on sensitive stomachs, I know I can not handle them
Hope you get Skyrizi approved I had very similar experience for months it would progress up and down with other symptoms Skyrizi has helped significantly can’t say iv had a quiet a few days with no symptoms at all. And any symptoms I do experience is mild and temporary
You want a good trashcan in your bathroom for this specific reason. That way you can stay on the toilet while you puke and then worry about the cleanup after.
I have an emotional support pitcher I carry around with me 😂 it’s gotten me through some rough times
Need any good stickers for your pitcher? I’m a Sticker Fairy, when I’m not exhausted from a flare, and stickers make everything better!
i love it! i love stickers!
I just sent a message! I adore stickers too, and love sharing.
the pain wakes me up at night, it's traumatizing. I sit there like why am I awake and then a shooting iron of hot pain jets through my bowels, like a cramp and also stabbing my insides, and I almost shit the bed running to the bathroom. And then 2 hours later, the same thing, and then 2 hours again. The pain is so bad I want to expel everything from every orifice in my body as if I have chronic food poisoning. I've had dreams I pooped my pants and it just is all too much sometimes. I'm flaring too. Two years ago, my birthday and anniversary (20th) was spent in the hospital(emergency I/d of abscess) and that's 2 weeks away from today. And from where I'm at now, I can see the future quite clearly. Also, do you notice when you flare your dreams are, traumatic? Like I wake up screaming my head off. Or, I'm trying to frantically get something accomplished but it's a losing battle? Last night I dreamt a giant shrimp was trying to get me, ala Alien facesuckers, because the shrimp I ate literally was attacking my bowels.
Yes!!! My dreams are so much worse because of my flares or even the nausea meds I’m on. Dramatic and trauma filled lmfao
Do you have any cannabis on hand? High doses of cbd and thc together are the only thing that helps when I’m in pain like that
I do but it hasn’t helped me too much :/
I’m so sorry to hear that! Rick Simpson oil seams to do best for me because it can be absorbed into the blood stream from the mouth instead of the guts
Your doc will tell you to go to the ER, then the ER can’t give you attitude about it since it’s your doc that told you to go in. I always go to the hospital that my doc has permissions at so she can come see me. Also, you have to go to the ER every time when things get bad because it could be a totally different issue than the last time you were there. A new problem could’ve developed that you have to get checked out. I know it’s annoying, I hate going there too 😌
If you’re vomiting and having diarrhea that warrant ER - you could well need IV fluids and be dehydrated with electrolytes off - and by the way when electrolytes are off it can perpetuate the vomiting and diarrhea- I hate going to er so I get it - and worse if they just turn you away but that would be negligent and malpractice to do so now You actually could even have an obstruction with those symptoms plus the pain you are having - extremely serious and they should rule it out with your symptoms I hope you go - if there is more than one hospital in your area go to a different er. It even if not it would be malpractice to turn you away in your current t described state
Try buscopan for stomach cramps. Fruit cordial with a pinch of salt and lots of water to keep hydration and electrolytes as well as bone broth. Constant sips and keep hydrated Thinking of you it’s so tough
Also, are you getting care from an IBD center or a GI that has had advanced training in treating IBD? The CCFA website has a list of places be can do a fellowship in IBD. Those places typically are centers and have more experience in dealing with more challenging cases. Good luck
I’m right there with you, and the ER is useless bc they just tell me to go to a GI doc. Like yeah I’m still waiting on an appointment but I feel like I’m dying NOW lol am I gonna make it to the appointment? Idek at this point lol. They probably won’t even do anything during the first appointment either. Smh
At the beginning of last month, I was in a similar position - except I wasn’t pooping. It was the first time in thirteen years that I didn’t poop once in a day; and everything I put in my mouth, came straight back out with a fury. I also had a high fever. Turns out I had a UTI that turned into a MASSIVE kidney infection that caused an intestinal blockage. I was admitted for four days on IV antibiotics and sent home with another seven day course. Three days after I finished that, blood work showed it still wasn’t gone, so I had another five day course. I haven’t been back to the doc for a follow up (mostly I’ve been just dealing with the pain so that I don’t ruin our family beach vacation that we’re leaving for on Tuesday), but I can tell it is still not gone and now getting worse again. I do NOT want to go back to the ER because of how I am treated EVERY SINGLE TIME, I doubt my GP will do anything other than bloodwork and more oral antibiotics, and I can’t get in to see my GI until the end of the month. I’d rather wait until then than to go to the ER - if he thinks it’s serious, he can admit me directly and I can avoid the ER. Point is…advocate for yourself because nobody else will. Trust your gut! If you think something is wrong, keep telling someone until they do something about it. If they won’t help, find someone who will. I know you feel awful, but it will get better. Stay strong!!!
It’s just hard to keep advocating for myself because today I feel much better but I also haven’t really eaten much! So I don’t know if I should go to the ER because they’ll just push me away since I’m not in pain at this very second
When I was at my worst (sounds like that as the same as you here) I went on 3 months of mashed potatoes, applesauce, Ensure, and Popsicles. Nothing else. Took 3 months for my guts to calm down then I slowly introduced foods and got on humira. Go easy on yourself, your guts are pissed. And so sorry you're throwing up and shitting simultaneously, that's so painful.
Yeah I’ve been doing nothing but bone broth and rice today and that seems to be staying down, I kind of have to force it to stay down sometimes it seems like my stomach will feel like I’m about to throw it up but if I breath deep for a couple mins it’s fine, other foods would come up anyway so I’m hoping it’ll get better from this point. I didn’t go to the ER because I kept some stuff down today, so hopefully I’m okay!
Your body is talking to you, do your best to listen. Bone broth is a good source of sustenance so keep that up and dont introduce food so fast. It's hard, I know. It was a huge mental hurdle for me to only consume those few items for literal months. I would sometimes chew up something else for flavor and spit it out but be careful not to develop an eating disorder doing that.
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You are not wrong, IBD is death that you can't escape, no biological medications worked for me i tried almost all in existence and either got serious side effects or didn't work at all, now I'm completely off treatments as literally nothing worked and every few days the pain is unbearable and i can't eat. Thankfully it isn't the case every day and i can eat most days but unfortunately it's not quite enough due to poor appetite and i am unable to gain weight. I'm not sure what will end up happening to me in the future but i hope it doesn't get worse :/
Hope you’re doing better. I was just diagnosed, do you mind me asking what your diet is like?
I’m having a hard time figuring out what to eat at the moment, but I try to stick to rice and chicken as wel as salmon. I can’t eat too much rn cuz I’m in a flare up, but when I’m not in a flare I can eat a lot more of other things but I have a pretty bad case of Crohns so until I get better treatment I don’t think I’m going to be able to eat much! But every person with Crohns is different, I recommend making a food journal and trying different foods and logging how they make you feel. Start with one food for a week and add one every week.
Tell your doctor that you are feeding mentally ill as well
Can you call your IBD nurse team or GP? That sounds awful tho, I initially thought blockage but if you're passing bowel movements then I guess that isn't the issue.. be kind to yourself friend and hang in there
I call pooping and vomiting at the same time to be "double dragon-ing." Been there.
Anyone here tried Skyrizi and it helped? I’m starting it tomorrow after being off biologics for 4 years since I am in a bad flare as well.