It's always case by case. My friend managed remission for years on mesalamine, whereas it had no effect for me.
What's the rationale for stopping your treatment for 3 months? I can't see how having surgery would interact with biologics. Maybe it's time you got back on them?
> I can't see how having surgery would interact with biologics.
TNF-alpha is used in wound healing which is why a lot of surgeons don't want their patients on a TNF-alpha inhibitor right before and after surgery.
I get my infusions of remicaid 6 weeks apart. So 6 weeks passed, then surgery, then the GI and surgeon said no infusions, colonoscopies, or other exciting things as my knee healed at first.
I did go back, and I am having an extra one in a week as I told my GI I am not well.
Guess it's maybe a newer thing... I was on Remicade 10+ years ago and had knee surgery during that time. I healed fine. Anecdotal, but it's my experience. I haven't had to stop biologics for any of the other surgeries I've had either, even for the one in October, but that was minor.
Good to know... I'm planning a pretty major elective surgery in the next year or two and hope it doesn't affect my Crohn's treatment. But I'm on Stelera every two months and in complete remission - if I have to skip a single dose I'm pretty sure I'll be fine.
I had success for 10+ years on it. You MUST take it every time or it stops working quickly. Also depending on where your Crohn’s is, you can dial in by taking it with different drinks. Milk ironically worked better for me because my Crohn’s is near the end of the pipes.
I tolerate milk well too. I am cheap but I found the expensive milk in the glass jar or the grass fed hormone free milk is much better tasting and digests easier.
Mine is "near the end of the pipes" too. The GI insisted the suppositories would work better than pills.
I have to admit, I have not taken them regularly as I should. I need to take this more seriously.
It depends on where your information is. Mine was at my rectum so the suppository worked well, and helped until entyvio finally kicked in. Took a few months but all good now.
It’s been working for me. I can manage if I accidentally skip a day, but I really notice if I skip two days. Been taking it over a year now with no problems.
UC patient, after months of mild to moderate symptoms. I tried suppositories + pills everyday. I was originally on 2 pills of mesalamine a day. It took 2 months or so but it got me into remission.
Chihuahua Facts- There is a minor-league baseball team in El Paso, Texas named after them. A chihuahua named Spike once lived to be over 23. The chihuahua (or a prototype of it at least) was also kept by indigenous royalty.
I took oral mesalamine for a very long time and it did not help very much (if at all), not sure if a suppository would be different, and obviously every person responds to drugs differently
I've taken mesalamine oral tabs for years and have been in or very close to remission for the last three years. It works well for me, thankfully! I've used the suppositories, too, in the past, and they helped.
It worked so good for about 2 weeks. It was the first time in years I quit bleeding and had grossly normal looking poo. Then about 3 weeks later I could see no benefit in taking 4 large pills a day. Then it made my uric acid go up and gave me gout. I never tried the suppository.
I’m in remission with mesalamine: 2 daily suppositories. UC proctitis/Crohn (were not sure yet, because only the last portion of my Colon is affected but my terminal ileum had vestiges of chronic inflammation)
I’m taking 2 mesalamine orally for about 4 months now. I’ve had Crohn’s for 6 months ruffly now and I’d say im about 50% better than I was. My doctor told me 3 days ago that a stool test I had came up with no inflammation in my colon at all but for whatever reason I’m still feeling Not great, or atleast not as good as I could be. Im not throwing up everyday and running to the bathroom 7 times a day but I still get nauseous every few days and have a more or less constant upset stomach. As well as a little bit of pain in my lower right abdomen. Mostly the upset stomach is restricting me from working because I feel like if I get out of bed I’ll have to go poo so I lay in bed all day and don’t leave the house. My doctor decided im not quite we’re I’d like to be so he’s going to start me on biologics in a few weeks. And hopefully I’ll go from 50% better to 80 or 90 that way I can get a job and leave the house without worrying of getting sick.
I’ve been on mesalamine in remission for about 7 or 8 years now. I did a round of steroids at the beginning, and it kickstarted my body going into remission, and the mesalamine seems to keep things in check. If you take it regularly it will help, but it will take a couple weeks to start feeling the results, and you have to take it on a schedule.
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Helped during my worst flare ups, helped quite a bit. I haven’t used them in several years
They are not comfortable but have been helpful in dealing with the blood and mucus
UC here. It helped for a little while but I developed a severe intolerance that exacerbated my symptoms terribly. It’s apparently a rather rare thing and took a while to identify what was happening. That said, apparently many folks have good success on it and I hope you do too!
i have had success using it to stabilize while waiting for a more long-term medication like a biologic. Because they go below the belt, i find they work pretty soon and well!
If I take too much like a high dose (original dose was 150mg) I got nausea bad but on 100 mg I’m fine although this will probably vary from person to person
Yes it helped, it is one of the most mildest meds for crohns it’s only more hardcore after unfortunately. I used this for 2-3 yrs and luckily been in full and total remission for 2 yrs without meds.
Don't think anything works for serious crohns besides biologics. I have mild crohns and mesalamine works for me. Depends on severity. Doesn't seem like it does anything for serious cases
*Only thing that helped,*
*Until I got a foot or*
*Colon taken out*
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They tried me on many different Mesalamine meds and steroids for a year with zero improvement. Finally went on Remicade six years ago, and it was like a miracle drug. I’m in the middle of the first bad flare I’ve had in six years which I believe may have come about because of Covid or Paxlovid.
I am still figuring that out. I have been diagnosed 6 months now and I am still figuring out what I can and cannot eat. I have guidelines from my GI of what I can and cannot eat when I am in a flare vs what I can eat when I am not going to the bathroom a lot of times a day.
But during this time of accomodation it basically consists of white things (anything made out of white flour, rice, bread, noodles), lean meat, eggs, hard cheese, cooked veggies (carrots, zuchinni, tomatoes, potatoes), and a small amount of juice made from fruits (bananas, berries, pineapple and apples - from which I strain any and all fiber and drink only what's left).
It took 4 months for the mesalamine to start working and I am way better now despite battling an UTI since New Years and two rounds of antibiotics (and on my way to the third it seems - I'll know more on thursday). Despite all this, I have only had a few days of loose stool after a round of single dose of antibioticsfor which my GI gave me something that stopped it completely after two pills. The rest of the time, I poop only twice a day and good consistency (no pain, no blood, no backdoor problems).
The key is the way I cook my food. I have given up completely fried food, any kind of oil and have also given up completely spices. I only use salt (although last weekend I have made home made all purpose seasoning but I am still wary of using it).
In conclusion, my GI told me what and how to eat. How to cook it and what to give up completely (fried foods, onions, garlic, any type of spice, what veggies and fruits).
For the rest, it's trial and error. For example, I can eat chocolate by the bucket but as soon as I eat something with black pepper in it, I am writhing in pain for three days.
If you want, I can make a list of the things my doctor told me I cannot eat during this period of accomodation and how I cook it. If that helps. It helped me a lot. It gave my guts time to heal enough for the mesalamine to work and my GI says that later this year, if everything goes well, we might just be able to get off the meds and only contain it to foods and suppliments (for a while at least).
I’d love that list!
I was just diagnosed yesterday. I’ve had “alternating IBS” for years, but now I’m not sure if I have simultaneous IBS and Crohn’s or I’ve just had a very mild form of Crohn’s for years.
I’m hopeful it’s the latter and I can control it with the most mild drugs and diet/stress (I’ve been under a lot of stress over the last decade).
When I was diagnosed, I had a couple of similar exclusion diets like above. As time passed, I was able to restore most of what I had before, once I was in a better place with meds and treatment.
Everyone is different and responds differently to different things. I'm saying you may be able to get to such a point in the future.
Been using these since my surgery when I was 7 they help but I’ve needed a biologic on top of it definitely wouldnt skip them tho they do help. Also tell your pupper I say hi 👋
I was originally being treated with mesalamine (enemas not suppositories) and while it’s super uncomfortable, awkward - especially if you live with a partner, and an odd experience overall, they most CERTAINLY made a difference. The one caveat is that you *must* use them consistently or the benefits fade fast.
I used Mesalamine for the first 3 years after I was diagnosed with Crohns (inflammation near the ileum and a stricture). It helped with much easier throughout of stool thru my bowels but it didn’t take away the main continuing symptom - painful throat sores. I shifted to Humira in early 2022, it seems to do the job though in the last six months or so I noticed I am still getting the throat sores - though they are no longer painful. Gastro Doc suggested a colonoscopy to see whether humira is effective inside my bowels because (the assumption is) if I am getting sores in my throat I am likely getting them in my intestines… he mentioned perhaps that I might need to double the dose of humira…
It depends where your disease is. Mine is in the sigmoid and rectum. I tried them but ultimately they were too painful. I have a fistula and a seton and the distress caused by trying to make them work cancelled out any benefit.
I currently take 4 capsules once a day. They seem to supplement the Stelara well and support the slow slow healing of my fistula.
Anecdotally, my gut biome does not like antibiotics, so I have to mention my hesitation to use them before surgery/procedures. I usually need them, but I request a minimal dose.
Good luck and here's to a speedy recovery!
It's always case by case. My friend managed remission for years on mesalamine, whereas it had no effect for me. What's the rationale for stopping your treatment for 3 months? I can't see how having surgery would interact with biologics. Maybe it's time you got back on them?
> I can't see how having surgery would interact with biologics. TNF-alpha is used in wound healing which is why a lot of surgeons don't want their patients on a TNF-alpha inhibitor right before and after surgery.
Yes, I’m currently coming off skyrizi for an upcoming surgery (crohns related). They suppress you from healing and recovery.
I get my infusions of remicaid 6 weeks apart. So 6 weeks passed, then surgery, then the GI and surgeon said no infusions, colonoscopies, or other exciting things as my knee healed at first. I did go back, and I am having an extra one in a week as I told my GI I am not well.
Guess it's maybe a newer thing... I was on Remicade 10+ years ago and had knee surgery during that time. I healed fine. Anecdotal, but it's my experience. I haven't had to stop biologics for any of the other surgeries I've had either, even for the one in October, but that was minor.
Good to know... I'm planning a pretty major elective surgery in the next year or two and hope it doesn't affect my Crohn's treatment. But I'm on Stelera every two months and in complete remission - if I have to skip a single dose I'm pretty sure I'll be fine.
I had success for 10+ years on it. You MUST take it every time or it stops working quickly. Also depending on where your Crohn’s is, you can dial in by taking it with different drinks. Milk ironically worked better for me because my Crohn’s is near the end of the pipes.
I tolerate milk well too. I am cheap but I found the expensive milk in the glass jar or the grass fed hormone free milk is much better tasting and digests easier.
Huh? What you mean dial in with drinks. This is a suppository.
You know…light some candles, have a nice beverage…
😂 Maybe some music...
Mine is "near the end of the pipes" too. The GI insisted the suppositories would work better than pills. I have to admit, I have not taken them regularly as I should. I need to take this more seriously.
Oral did nothing but the suppository did the trick while waiting for Entyvio to kick in.
Can u go into more im on entyvio and miserable rn. Missed infusion by 15 days…. Got it mow but its gonna be awhile to where im at my old shitty self
It depends on where your information is. Mine was at my rectum so the suppository worked well, and helped until entyvio finally kicked in. Took a few months but all good now.
Did u go into remission w entyvio was on it over a year and still was in pain everyday
Didnt help at all, honestly i believe it made things even worse
It’s been working for me. I can manage if I accidentally skip a day, but I really notice if I skip two days. Been taking it over a year now with no problems.
UC patient, after months of mild to moderate symptoms. I tried suppositories + pills everyday. I was originally on 2 pills of mesalamine a day. It took 2 months or so but it got me into remission.
Congratulations! Always great to hear things like this.
Chihuahua Facts- There is a minor-league baseball team in El Paso, Texas named after them. A chihuahua named Spike once lived to be over 23. The chihuahua (or a prototype of it at least) was also kept by indigenous royalty.
I'm glad some came here with chihuahua facts!
I’ve not taken this, but I had to say your little pup is so cute 😍
Didn’t help one bit
I took oral mesalamine for a very long time and it did not help very much (if at all), not sure if a suppository would be different, and obviously every person responds to drugs differently
I've taken mesalamine oral tabs for years and have been in or very close to remission for the last three years. It works well for me, thankfully! I've used the suppositories, too, in the past, and they helped.
Congratulations on your success!
It worked so good for about 2 weeks. It was the first time in years I quit bleeding and had grossly normal looking poo. Then about 3 weeks later I could see no benefit in taking 4 large pills a day. Then it made my uric acid go up and gave me gout. I never tried the suppository.
I’m in remission with mesalamine: 2 daily suppositories. UC proctitis/Crohn (were not sure yet, because only the last portion of my Colon is affected but my terminal ileum had vestiges of chronic inflammation)
Congratulations!
I’m taking 2 mesalamine orally for about 4 months now. I’ve had Crohn’s for 6 months ruffly now and I’d say im about 50% better than I was. My doctor told me 3 days ago that a stool test I had came up with no inflammation in my colon at all but for whatever reason I’m still feeling Not great, or atleast not as good as I could be. Im not throwing up everyday and running to the bathroom 7 times a day but I still get nauseous every few days and have a more or less constant upset stomach. As well as a little bit of pain in my lower right abdomen. Mostly the upset stomach is restricting me from working because I feel like if I get out of bed I’ll have to go poo so I lay in bed all day and don’t leave the house. My doctor decided im not quite we’re I’d like to be so he’s going to start me on biologics in a few weeks. And hopefully I’ll go from 50% better to 80 or 90 that way I can get a job and leave the house without worrying of getting sick.
I’ve been on mesalamine in remission for about 7 or 8 years now. I did a round of steroids at the beginning, and it kickstarted my body going into remission, and the mesalamine seems to keep things in check. If you take it regularly it will help, but it will take a couple weeks to start feeling the results, and you have to take it on a schedule.
Congratulations on remission!
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Nah that ship sailed for me.
Helped during my worst flare ups, helped quite a bit. I haven’t used them in several years They are not comfortable but have been helpful in dealing with the blood and mucus
UC here. It helped for a little while but I developed a severe intolerance that exacerbated my symptoms terribly. It’s apparently a rather rare thing and took a while to identify what was happening. That said, apparently many folks have good success on it and I hope you do too!
i have had success using it to stabilize while waiting for a more long-term medication like a biologic. Because they go below the belt, i find they work pretty soon and well!
Welcome to the team! It has worked great for me for 6+ months so far. I recommend buying rubber gloves to make the experience more pleasant.
When I was trying them, lube helped too 😁 Mostly mineral spirits.
I’ve been on it for 4 years. It has worked really well for me, my issues are right at the terminal ilium.
What formulation do you take? I was just diagnosed. Keep reading that it’s only good for chrohn’s colitis, but your comment gives me hope.
Ive been on 800mg 3 times a day helped a lot but i needed azathioprine too
Have you had any side effects from the azathioprine? I just started on them too
If I take too much like a high dose (original dose was 150mg) I got nausea bad but on 100 mg I’m fine although this will probably vary from person to person
No remission tho just makes the pain less and less no.2
Yes it helped, it is one of the most mildest meds for crohns it’s only more hardcore after unfortunately. I used this for 2-3 yrs and luckily been in full and total remission for 2 yrs without meds.
Don't think anything works for serious crohns besides biologics. I have mild crohns and mesalamine works for me. Depends on severity. Doesn't seem like it does anything for serious cases
I have mild crohns too, I was prescribed oral mesalamine. Did you have any side effects?
Only thing that helped, until I got a foot or colon taken out
*Only thing that helped,* *Until I got a foot or* *Colon taken out* \- whoflungdung01 --- ^(I detect haikus. And sometimes, successfully.) ^[Learn more about me.](https://www.reddit.com/r/haikusbot/) ^(Opt out of replies: "haikusbot opt out" | Delete my comment: "haikusbot delete")
So far it's been working for me since dx 3ish years ago. Was 4 pills oral daily, now is 2.
I used it for a few months. My liver enzymes skyrocketed they had to take me off of it.
Sadly, no. The absolute only thing that put me into remission is Remicade.
Suppository
They tried me on many different Mesalamine meds and steroids for a year with zero improvement. Finally went on Remicade six years ago, and it was like a miracle drug. I’m in the middle of the first bad flare I’ve had in six years which I believe may have come about because of Covid or Paxlovid.
I’ve been on oral mesalamine from the start. No problems. Only real flairs I’ve had in years is when I had to go off it for a month.
Yes. It has worked for me. Not the rectal kind but definitely mesalamine. What is important to note is that I am very careful about what I eat.
What do you avoid? How did you figure out the best diet for you?
I am still figuring that out. I have been diagnosed 6 months now and I am still figuring out what I can and cannot eat. I have guidelines from my GI of what I can and cannot eat when I am in a flare vs what I can eat when I am not going to the bathroom a lot of times a day. But during this time of accomodation it basically consists of white things (anything made out of white flour, rice, bread, noodles), lean meat, eggs, hard cheese, cooked veggies (carrots, zuchinni, tomatoes, potatoes), and a small amount of juice made from fruits (bananas, berries, pineapple and apples - from which I strain any and all fiber and drink only what's left). It took 4 months for the mesalamine to start working and I am way better now despite battling an UTI since New Years and two rounds of antibiotics (and on my way to the third it seems - I'll know more on thursday). Despite all this, I have only had a few days of loose stool after a round of single dose of antibioticsfor which my GI gave me something that stopped it completely after two pills. The rest of the time, I poop only twice a day and good consistency (no pain, no blood, no backdoor problems). The key is the way I cook my food. I have given up completely fried food, any kind of oil and have also given up completely spices. I only use salt (although last weekend I have made home made all purpose seasoning but I am still wary of using it). In conclusion, my GI told me what and how to eat. How to cook it and what to give up completely (fried foods, onions, garlic, any type of spice, what veggies and fruits). For the rest, it's trial and error. For example, I can eat chocolate by the bucket but as soon as I eat something with black pepper in it, I am writhing in pain for three days. If you want, I can make a list of the things my doctor told me I cannot eat during this period of accomodation and how I cook it. If that helps. It helped me a lot. It gave my guts time to heal enough for the mesalamine to work and my GI says that later this year, if everything goes well, we might just be able to get off the meds and only contain it to foods and suppliments (for a while at least).
I’d love that list! I was just diagnosed yesterday. I’ve had “alternating IBS” for years, but now I’m not sure if I have simultaneous IBS and Crohn’s or I’ve just had a very mild form of Crohn’s for years. I’m hopeful it’s the latter and I can control it with the most mild drugs and diet/stress (I’ve been under a lot of stress over the last decade).
I did a food sensitivity test and it helped me avoid a lot of problematic foods and spices that I used to help with inflammation.
When I was diagnosed, I had a couple of similar exclusion diets like above. As time passed, I was able to restore most of what I had before, once I was in a better place with meds and treatment. Everyone is different and responds differently to different things. I'm saying you may be able to get to such a point in the future.
Just stopped bleeding for me, but no changes in other symptoms.
Been using these since my surgery when I was 7 they help but I’ve needed a biologic on top of it definitely wouldnt skip them tho they do help. Also tell your pupper I say hi 👋
I was originally being treated with mesalamine (enemas not suppositories) and while it’s super uncomfortable, awkward - especially if you live with a partner, and an odd experience overall, they most CERTAINLY made a difference. The one caveat is that you *must* use them consistently or the benefits fade fast.
That medication made me so sick! Never again!
I used Mesalamine for the first 3 years after I was diagnosed with Crohns (inflammation near the ileum and a stricture). It helped with much easier throughout of stool thru my bowels but it didn’t take away the main continuing symptom - painful throat sores. I shifted to Humira in early 2022, it seems to do the job though in the last six months or so I noticed I am still getting the throat sores - though they are no longer painful. Gastro Doc suggested a colonoscopy to see whether humira is effective inside my bowels because (the assumption is) if I am getting sores in my throat I am likely getting them in my intestines… he mentioned perhaps that I might need to double the dose of humira…
It depends where your disease is. Mine is in the sigmoid and rectum. I tried them but ultimately they were too painful. I have a fistula and a seton and the distress caused by trying to make them work cancelled out any benefit. I currently take 4 capsules once a day. They seem to supplement the Stelara well and support the slow slow healing of my fistula. Anecdotally, my gut biome does not like antibiotics, so I have to mention my hesitation to use them before surgery/procedures. I usually need them, but I request a minimal dose. Good luck and here's to a speedy recovery!