Good morning, I am a 45 year old female. Got sick last December, started losing weight, going to doctor, having test after test, starving, thinking I'm the crazy one....Finally last month they informed me that it was Crohn's. BTW...they tested for that back in march!! Currently on Entocort, debating flu shot, hoping for some insight to that! Never had flu shot before, but hearing that immune system is affected, nervous.
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Newly Diagnosed
- Thread starter sammyb22
- Start date
Hello and welcome to the forum.
Unfortunately your story is a familiar one here, many of us face months or even years of testing and waiting before we get our official diagnosis so most of us can relate to you in that way.
You are correct in thinking that there is some sort of immune involvement in Crohn's. There is no definitive answer to what causes Crohn's yet, but many theories suggest that there is an over-activeness of the immune system, which causes it to damage healthy tissue. This is why many of us are prescribed immuno-modulators which suppress the immune system in some way and therefore reduce the harm it causes.
Having the flu shot is an individual choice if you have Crohn's but it is reccommended when taking the immuno-modulators (suppressants) because these will leave you more vulnerable to some illnesses and infections.
You say you are currently on Entocort, which is a steroid. As good as these medications are they are not recommended for long term use, so you will need to talk to your GI about some form of maintenance treatment to keep your condition controlled long term.
Unfortunately your story is a familiar one here, many of us face months or even years of testing and waiting before we get our official diagnosis so most of us can relate to you in that way.
You are correct in thinking that there is some sort of immune involvement in Crohn's. There is no definitive answer to what causes Crohn's yet, but many theories suggest that there is an over-activeness of the immune system, which causes it to damage healthy tissue. This is why many of us are prescribed immuno-modulators which suppress the immune system in some way and therefore reduce the harm it causes.
Having the flu shot is an individual choice if you have Crohn's but it is reccommended when taking the immuno-modulators (suppressants) because these will leave you more vulnerable to some illnesses and infections.
You say you are currently on Entocort, which is a steroid. As good as these medications are they are not recommended for long term use, so you will need to talk to your GI about some form of maintenance treatment to keep your condition controlled long term.
Thank you for the welcome and your insight. I seem to get no guidance from G.I. doc. I do have another appointment next Thursday for a follow up. I notice that I am on one med compared to others, who seem to be on a handful of meds, do I stick with this path or do I need to find another doctor? I am very alone here, and don't know where to turn or who to talk to. It seems EVERYONE knows someone with crohn's, but me!!
I hear about support groups but can't find any near where I live, I just wish I knew more of where to look for some direction.:confused2:
I hear about support groups but can't find any near where I live, I just wish I knew more of where to look for some direction.:confused2:
Crohn's is a very individual condition, no two patients are the same and as such there are very different approaches to its treatment. Its pretty common to start people off on a steroid to bring the flare up under control and settle the symptoms down. I am currently on a different steroid called prednisolone which I'm in the process of weaning off.
Steroids are great drugs for bringing down inflammation and can make most people feel dramatically better within a short space of time, but they are not perfect and have a lot of side effects and risks. Prednisolone is the worse of those commonly used for Crohn's, it can have all sorts of effects including thinning the bones and creating steroid dependence. Entocort generally has far less side effects, but it is still a steroid and isn't meant to be used indefinitely . Due to this, it's common for people to be placed onto a medication such as an immuno-suppressant which aims to control the disease long term. The most common ones are Azathioprine, 6MP and methotrexate. These drugs do have potential side effects and you need regular blood tests to check your liver and kidney function, but they are generally much safer to use long term and have good success rates. The next step after these are biologics such as humira and remicade which work by targeting specific parts of the immune system and blocking their action, these drugs are usually used in severe Crohn's or in cases where the disease doesn't respond well enough to other treatments.
It's common to feel alone with this illness, it's very hard for people who don't have the condition to really understand how it makes us feel. You aren't alone though, there are lots of people here who can relate to what you are going through and how you are feeling and there's almost always someone around that has had a similar experience. While we cannot promise to always have the answers, we can at least share our own experiences and offer you our support.
I don't live in the US, so I don't know much about the support available there, but the Crohns and Colitis Foundation of America has lots of information and should be able to point you in the right direction.
Edited to add - don't be overwhelmed by the lists of medications some of us have in our signitures, some doctors prefer a combined approach or some of us have had reactions to some medications and have had to try an alternative path. There are also a number of members who have multiple conditions and therefore need a wider range of medications to control the various aspects of our illness.
Steroids are great drugs for bringing down inflammation and can make most people feel dramatically better within a short space of time, but they are not perfect and have a lot of side effects and risks. Prednisolone is the worse of those commonly used for Crohn's, it can have all sorts of effects including thinning the bones and creating steroid dependence. Entocort generally has far less side effects, but it is still a steroid and isn't meant to be used indefinitely . Due to this, it's common for people to be placed onto a medication such as an immuno-suppressant which aims to control the disease long term. The most common ones are Azathioprine, 6MP and methotrexate. These drugs do have potential side effects and you need regular blood tests to check your liver and kidney function, but they are generally much safer to use long term and have good success rates. The next step after these are biologics such as humira and remicade which work by targeting specific parts of the immune system and blocking their action, these drugs are usually used in severe Crohn's or in cases where the disease doesn't respond well enough to other treatments.
It's common to feel alone with this illness, it's very hard for people who don't have the condition to really understand how it makes us feel. You aren't alone though, there are lots of people here who can relate to what you are going through and how you are feeling and there's almost always someone around that has had a similar experience. While we cannot promise to always have the answers, we can at least share our own experiences and offer you our support.
I don't live in the US, so I don't know much about the support available there, but the Crohns and Colitis Foundation of America has lots of information and should be able to point you in the right direction.
Edited to add - don't be overwhelmed by the lists of medications some of us have in our signitures, some doctors prefer a combined approach or some of us have had reactions to some medications and have had to try an alternative path. There are also a number of members who have multiple conditions and therefore need a wider range of medications to control the various aspects of our illness.