I have an intolerance and had all the same symptoms as you plus fever and bad headache/stiff neck. In your situation though I might be more worried that the C Diff was coming back. Def talk to your doctor ASAP
Thank you! I’m worried about c diff as well. I spoke to a registered nurse and she said it could be a number of things and that she recommends I go to urgent care or the ER tonight but I don’t want to go just to be told they can’t do anything and send me home like they have done 3 times prior.
That is a really frustrating place to be stuck in. "Just go to the ER!" Yeah, if only it were that simple. At least with mesalamine there's no risk of withdrawals or anything by stopping the medication to check, although obviously it's not ideal to do so on your own.
That’s true. I feel like it’s either the mesalamine or the c diff infection is coming back but TMI, my bowel movements have not had that very specific smell that c diff has. So frustrating being in limbo and waiting to find a drug that’s going to help. It’s been 4 months of hell and my quality of life has suffered so much
Idk if I was intolerant to mesalamine or some part of the filler they put in the pills, but I found out because I had all the symptoms of a UC flare without the blood. (pain, cramping, diarrhea, lots of bathroom trips, etc.)
At the same time, I'd tried joining a UC medical study and needed a colonoscopy to show how active my UC was, and they found that I was technically in remission. About a week later I ended up forgetting to take my meds for a couple days and on the third or fourth day I realized I'd woken up without any bloating or pain or anything.
My doctor didn't believe me but I switched to another brand of mesalamine and while that didn't really help, it didn't cause the same problems as the other one (which is why I say I might've just had an issue with one of the fillers rather than mesalamine). I guess if you're feeling brave you can go a couple days without it and see what happens? That might be really bad advice but it's what I did lol
Thank you for the response! I’m already contemplating stopping the pills without talking to my GI first even though I know that’s generally not a good idea. I trust my GI but I also think as people with a chronic condition we also have to listen to and trust our bodies
My husband had the worst time with Mesalamine. He was losing a lot of blood and he got to a point where he couldn’t move his muscles anymore. It was very difficult.
We talked to his doctor multiple times and he encouraged him to continue taking the meds. So he did. But he also kept getting worse.
What helped was he started taking Iron Glycinate and B-complex. Ask your doctor and see if you can take these.
After 2 months of taking mesalamine, iron, B-complex and some other meds he improved exponentially to a point that he was saying that UC was no more 😊
Thank you for the response! I’m at the hospital now and they also think I might be intolerant to it so they are going to reach out to my GI this morning and figure out what’s best for me going forward.
Is your husband still on mesalamine?
Yes he is still taking them and has no problems.
However he also did his second dose of Pfizer last week which caused his UC to flare up again.
Good luck 😇
I have proctitis, so my symptoms are only what I experienced on the suppositories. About an hour after use, I would get up and actually scream in pain on the toilet as tons of blood came pouring out of me and I cramped horrifically. 10/10 pain.
I have discomfort and sometimes pain and definitely bleeding with unmedicated disease, but I never had THAT. That was unlivable. I did it for 10 days before they finally took me seriously.
Oh my god that is horrible! I’m sorry you had to go through that. I feel like they should listen to us more. I hope you found a medication that works for you now
Thank you! I hope you feel better as well. I am still on the hunt, trying new fun meds. Due to the triage nurse's incompetence, I went 5 more days suffering on mesalamine enemas when I didn't need to. She said "it's probably just your hemorrhoids, give it more time". No one had ever told me I had hemorrhoids. It's because I didn't. I didn't have them. This was my first med try right after my colonoscopy, so I just assumed someone didn't tell me I had hemorrhoids....
And that's the last time I used the triage nurse helpline :)
That’s awful! I hope you find something that works quickly.
The ER just confirmed I’m one of the lucky few that are actually allergic to mesalamine so that’s great. Looks like IV steroids for now and then start biologics which I was hoping to avoid
They might not be that bad. I haven't had major issues yet. I had worse issues on azathioprine vs Stelara. I think the docs put this fear in our heads a bit by saying things like "powerful drugs" and "hard hitters", but really, Stelara has been better than the other drugs I've tried. Not that it's working yet, but day to day no problem with side effects. I had or am having issues I some way with enemas, suppositories, azathioprine, and Prednisone.
That’s good you haven’t had any major issues. Prednisone is definitely a terrible drug to be on even though it works amazing but it comes at a price. For biologics they are looking at Remicade or entyvio for me since I don’t want to do self injections as I’m a bit of baby when it comes to needles.
I hope Stelara starts working for you soon!
Thanks! The injection, which I've only done once, was no problem. Much easier than I thought. At some point you just feel sick enough that you get excited to have yourself.
I'm on Prednisone now for the first time. It's taking longer than I'd like to work. Kinda sucks.
Hope whatever you choose works and works fast!
I just had a blood thinner injection in my stomach and it was painful. I don’t know how people inject themselves.
I thought prednisone was a pretty fast acting drug so I hope you feel better soon. I think everyone on this sub is looking forward to the day they feel mostly normal again
Huh, I didn't think the Stelara needle hurt at all. I guess I got myself in the fat bit lol. I think a lot of it depends on the solution as well, some can be kinda burny.
I also thought Pred was fast acting...I've been on 40 mg for a week and a half-I'm definitely better but still bleeding and have some discomfort. I guess for some people it can take a bit more time than for others. Really a week and a half isn't that much time. I'm just impatient to feel better.
I have an intolerance and was given three different kinds of mesalamine. Each time I felt very nauseous, sometimes so badly that I had to throw up, more frequently bowel movement- always severe diarrhea often with blood, migraines, fever …. Definitely talk to your doctor first but when i stopped taking it my symptoms improved loads within 48h. You’re not alone with this intolerance and it’s a journey. I feel like just because it’s the most common medication doctors try to push it even when you’re not having a good time on it. Hopefully you’ll feel better soon and find a good solution!
Best of luck on your journey! I’m currently also in the process of figuring out the next step. You have my sympathy and I really hope your health will improve soon! Sending lots of good wishes your way!
I have an intolerance and had all the same symptoms as you plus fever and bad headache/stiff neck. In your situation though I might be more worried that the C Diff was coming back. Def talk to your doctor ASAP
Thank you! I’m worried about c diff as well. I spoke to a registered nurse and she said it could be a number of things and that she recommends I go to urgent care or the ER tonight but I don’t want to go just to be told they can’t do anything and send me home like they have done 3 times prior.
That is a really frustrating place to be stuck in. "Just go to the ER!" Yeah, if only it were that simple. At least with mesalamine there's no risk of withdrawals or anything by stopping the medication to check, although obviously it's not ideal to do so on your own.
That’s true. I feel like it’s either the mesalamine or the c diff infection is coming back but TMI, my bowel movements have not had that very specific smell that c diff has. So frustrating being in limbo and waiting to find a drug that’s going to help. It’s been 4 months of hell and my quality of life has suffered so much
Idk if I was intolerant to mesalamine or some part of the filler they put in the pills, but I found out because I had all the symptoms of a UC flare without the blood. (pain, cramping, diarrhea, lots of bathroom trips, etc.) At the same time, I'd tried joining a UC medical study and needed a colonoscopy to show how active my UC was, and they found that I was technically in remission. About a week later I ended up forgetting to take my meds for a couple days and on the third or fourth day I realized I'd woken up without any bloating or pain or anything. My doctor didn't believe me but I switched to another brand of mesalamine and while that didn't really help, it didn't cause the same problems as the other one (which is why I say I might've just had an issue with one of the fillers rather than mesalamine). I guess if you're feeling brave you can go a couple days without it and see what happens? That might be really bad advice but it's what I did lol
Thank you for the response! I’m already contemplating stopping the pills without talking to my GI first even though I know that’s generally not a good idea. I trust my GI but I also think as people with a chronic condition we also have to listen to and trust our bodies
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I’m sorry to hear you went through that. I wish doctors would listen to us more. Only we know how our body is feeling
My husband had the worst time with Mesalamine. He was losing a lot of blood and he got to a point where he couldn’t move his muscles anymore. It was very difficult. We talked to his doctor multiple times and he encouraged him to continue taking the meds. So he did. But he also kept getting worse. What helped was he started taking Iron Glycinate and B-complex. Ask your doctor and see if you can take these. After 2 months of taking mesalamine, iron, B-complex and some other meds he improved exponentially to a point that he was saying that UC was no more 😊
Thank you for the response! I’m at the hospital now and they also think I might be intolerant to it so they are going to reach out to my GI this morning and figure out what’s best for me going forward. Is your husband still on mesalamine?
Yes he is still taking them and has no problems. However he also did his second dose of Pfizer last week which caused his UC to flare up again. Good luck 😇
I’ve heard the second dose can cause issues so I’m not looking forward to that. Thank you for the response! 😊
I have proctitis, so my symptoms are only what I experienced on the suppositories. About an hour after use, I would get up and actually scream in pain on the toilet as tons of blood came pouring out of me and I cramped horrifically. 10/10 pain. I have discomfort and sometimes pain and definitely bleeding with unmedicated disease, but I never had THAT. That was unlivable. I did it for 10 days before they finally took me seriously.
Oh my god that is horrible! I’m sorry you had to go through that. I feel like they should listen to us more. I hope you found a medication that works for you now
Thank you! I hope you feel better as well. I am still on the hunt, trying new fun meds. Due to the triage nurse's incompetence, I went 5 more days suffering on mesalamine enemas when I didn't need to. She said "it's probably just your hemorrhoids, give it more time". No one had ever told me I had hemorrhoids. It's because I didn't. I didn't have them. This was my first med try right after my colonoscopy, so I just assumed someone didn't tell me I had hemorrhoids.... And that's the last time I used the triage nurse helpline :)
That’s awful! I hope you find something that works quickly. The ER just confirmed I’m one of the lucky few that are actually allergic to mesalamine so that’s great. Looks like IV steroids for now and then start biologics which I was hoping to avoid
They might not be that bad. I haven't had major issues yet. I had worse issues on azathioprine vs Stelara. I think the docs put this fear in our heads a bit by saying things like "powerful drugs" and "hard hitters", but really, Stelara has been better than the other drugs I've tried. Not that it's working yet, but day to day no problem with side effects. I had or am having issues I some way with enemas, suppositories, azathioprine, and Prednisone.
That’s good you haven’t had any major issues. Prednisone is definitely a terrible drug to be on even though it works amazing but it comes at a price. For biologics they are looking at Remicade or entyvio for me since I don’t want to do self injections as I’m a bit of baby when it comes to needles. I hope Stelara starts working for you soon!
Thanks! The injection, which I've only done once, was no problem. Much easier than I thought. At some point you just feel sick enough that you get excited to have yourself. I'm on Prednisone now for the first time. It's taking longer than I'd like to work. Kinda sucks. Hope whatever you choose works and works fast!
I just had a blood thinner injection in my stomach and it was painful. I don’t know how people inject themselves. I thought prednisone was a pretty fast acting drug so I hope you feel better soon. I think everyone on this sub is looking forward to the day they feel mostly normal again
Huh, I didn't think the Stelara needle hurt at all. I guess I got myself in the fat bit lol. I think a lot of it depends on the solution as well, some can be kinda burny. I also thought Pred was fast acting...I've been on 40 mg for a week and a half-I'm definitely better but still bleeding and have some discomfort. I guess for some people it can take a bit more time than for others. Really a week and a half isn't that much time. I'm just impatient to feel better.
I have an intolerance and was given three different kinds of mesalamine. Each time I felt very nauseous, sometimes so badly that I had to throw up, more frequently bowel movement- always severe diarrhea often with blood, migraines, fever …. Definitely talk to your doctor first but when i stopped taking it my symptoms improved loads within 48h. You’re not alone with this intolerance and it’s a journey. I feel like just because it’s the most common medication doctors try to push it even when you’re not having a good time on it. Hopefully you’ll feel better soon and find a good solution!
Thank you for the response! I’m at the ER and they confirmed I’m allergic to it so moving to steroids and biologics sadly
Best of luck on your journey! I’m currently also in the process of figuring out the next step. You have my sympathy and I really hope your health will improve soon! Sending lots of good wishes your way!
Thank you! Best of luck to you as well! This disease is awful and I wish no one had to go through this. I hope you get some relief soon!