I recently got diagnosed with Crohn's. I am 23 years old. I am on prednisone, 25MG a day (more/less as needed) I am starting Entyvio tomorrow. Any advice from the rest out there? Also drinking hot water helps relieve some/more pain in your intenstines. Let's get get through it together everyone.
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Crohn's
- Thread starter TribeTime101
- Start date
Hello, welcome to the forum, I'm the same age as you, was diagnosed when I was 19, had symptoms start at 15.
It's a confusing and sometimes frustrating time when you are first diagnosed, finding the correct balance of treatments and lifestyle can be tricky, so my first bit of advice is don't give up. It's not uncommon for it to take a few months for the longer term treatments to start to kick in and make a difference, and it's also not uncommon to have a few bumps in the road. I started entyvio myself yesterday, and have been warned it could take up to 14 weeks to really feel better, so please don't be disheartened if you don't notice any immediate differences.
The steroids should be a short term thing, so you should only be on them for a few months at most, but some of us do end up being on them longer if things aren't settling down. You will need to come off them slowly, so when you are told you can stop them you should be given clear instructions on how to do this safely, don't ever stop steroids suddenly. My consultant prefers a slow taper, going down by 5 mg every 2 weeks, but each doctor has individual preferences so it's important to find out what your doctor things is best for you specifically.
Find out if your hospital/doctors office has an IBD nurse, if they do, get her/his number. Where I am, in the UK, they aren't so common, but I'm lucky to have one and she is invaluable. They can get in contact with the doctors, run blood tests, give advice about medications and in some cases can even see you in clinic. In the UK, some, like mine, are also trained in prescribing and so can give courses of steroids or alter the doses of other medications and also help with symptom management, but this doesnt seem as common in the US.
Make sure you report changes like new or severe symptoms to your doctors, as even something that seems minor may have more significance than you think. I have found it's often the things I have discounted as unimportant or thought wouldnt be related that have ended up prompting them to run blood tests etc and find the route of problems. If you have any concerns, even slight, its good to make a note of them.
I agree with the above regarding a food diary, and would recommend adding a pain score to this. Write down what you eat, and how you feel before and after. This will help you to see if there are any specific foods that make your symptoms better or worse. Some people find a high fibre diet is bad for them, others struggle with a lot of fat in their diet, or some, like me, simply find that eating in general can increase the pain on really bad days. If there is an obvious pattern, you can try reducing the foods that seem to cause the most problems and see if you notice any improvements. This won't get rid of the inflammation, but it can help make the symptoms more manageable.
Don't be afraid of asking for help with pain or other symptoms like nausea, my IBD team put a big focus on trying to make patients more comfortable, particularly if they are going to be waiting a long time for a treatment to kick in. There isn't always a massive amount they can do, but there isn't any harm in asking them for advice if you are struggling with something.
Make sure you are getting regular blood work, this can help keep an eye on inflammation levels and can let them know if you are starting to suffer with any vitamin or mineral deficiencies. It is common for people with IBD to suffer problems like aneamia as the inflammation in the gut means we can't absorb nutrients normally.
If you have any questions or need any support then please feel free to come to us. We are not doctors and don't know everything, but there isn't much that we won't have come across as a group and even if we can't answer your questions directly we will always do our best to point you in the write direction and to give you a shoulder to lean on at the very least. There is no such thing as a silly question and there is no need to be embarrassed, we are all in the same boat here.
It's a confusing and sometimes frustrating time when you are first diagnosed, finding the correct balance of treatments and lifestyle can be tricky, so my first bit of advice is don't give up. It's not uncommon for it to take a few months for the longer term treatments to start to kick in and make a difference, and it's also not uncommon to have a few bumps in the road. I started entyvio myself yesterday, and have been warned it could take up to 14 weeks to really feel better, so please don't be disheartened if you don't notice any immediate differences.
The steroids should be a short term thing, so you should only be on them for a few months at most, but some of us do end up being on them longer if things aren't settling down. You will need to come off them slowly, so when you are told you can stop them you should be given clear instructions on how to do this safely, don't ever stop steroids suddenly. My consultant prefers a slow taper, going down by 5 mg every 2 weeks, but each doctor has individual preferences so it's important to find out what your doctor things is best for you specifically.
Find out if your hospital/doctors office has an IBD nurse, if they do, get her/his number. Where I am, in the UK, they aren't so common, but I'm lucky to have one and she is invaluable. They can get in contact with the doctors, run blood tests, give advice about medications and in some cases can even see you in clinic. In the UK, some, like mine, are also trained in prescribing and so can give courses of steroids or alter the doses of other medications and also help with symptom management, but this doesnt seem as common in the US.
Make sure you report changes like new or severe symptoms to your doctors, as even something that seems minor may have more significance than you think. I have found it's often the things I have discounted as unimportant or thought wouldnt be related that have ended up prompting them to run blood tests etc and find the route of problems. If you have any concerns, even slight, its good to make a note of them.
I agree with the above regarding a food diary, and would recommend adding a pain score to this. Write down what you eat, and how you feel before and after. This will help you to see if there are any specific foods that make your symptoms better or worse. Some people find a high fibre diet is bad for them, others struggle with a lot of fat in their diet, or some, like me, simply find that eating in general can increase the pain on really bad days. If there is an obvious pattern, you can try reducing the foods that seem to cause the most problems and see if you notice any improvements. This won't get rid of the inflammation, but it can help make the symptoms more manageable.
Don't be afraid of asking for help with pain or other symptoms like nausea, my IBD team put a big focus on trying to make patients more comfortable, particularly if they are going to be waiting a long time for a treatment to kick in. There isn't always a massive amount they can do, but there isn't any harm in asking them for advice if you are struggling with something.
Make sure you are getting regular blood work, this can help keep an eye on inflammation levels and can let them know if you are starting to suffer with any vitamin or mineral deficiencies. It is common for people with IBD to suffer problems like aneamia as the inflammation in the gut means we can't absorb nutrients normally.
If you have any questions or need any support then please feel free to come to us. We are not doctors and don't know everything, but there isn't much that we won't have come across as a group and even if we can't answer your questions directly we will always do our best to point you in the write direction and to give you a shoulder to lean on at the very least. There is no such thing as a silly question and there is no need to be embarrassed, we are all in the same boat here.
I was diagnosed with Crohns at 21, the same age my father was when he was diagnosed as well.
Be your own advocate. You know your body better than anyone else so if you notice a change talk to someone about it.
Did your doctor start you on budesonide prior to prednisone? Budesonide is a steroid as well but what's great about it is it puts a coating on the parts of your intestine that is inflamed. It also doesn't cause weight gain like prednisone does which was a selling point for he when I was diagnosed.
Be your own advocate. You know your body better than anyone else so if you notice a change talk to someone about it.
Did your doctor start you on budesonide prior to prednisone? Budesonide is a steroid as well but what's great about it is it puts a coating on the parts of your intestine that is inflamed. It also doesn't cause weight gain like prednisone does which was a selling point for he when I was diagnosed.