My 15 year old nephew was recently diagnosed with crohns. He just moved in with me over the summer and was just diagnosed a few weeks ago(in the hospital). They haven't put him on anything but prednisone for now. He has a appointment with a GI doctor December 3rd. But until then I no like nothing about crohns. All I know is it affects your digestive tract. Also he just started basketball he did play football before this but last night when he came home he was so sick and even today he is just not himself . He has had only one really bad flare I'm just worried how do you tell the difference from stomach bug to flare ???
New to crohns looking for some information
- Thread starter Kaitlynn
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Welcome Kaitlynn,
Often times it is hard to tell the difference. Sometimes it is just my gut telling me it is not the flu or a virus. Other times it's a little bit wait and see if it is a virus my son is usually feeling better after a few days.
I would imagine they will discuss a maintenance medicine with you at his appt. Prednisone works quickly to reduced inflammation but it you need something else to keep it under control and long term pred use is not good.
I would suggest a couple of things keep a diary of food and symptoms. This will help in the future to know what a flare looks like for him also if any foods set him off. I also keep a binder with all tests and notes in it. Makes for easy reference and also makes it easier to see any patterns or just go back when you have had more time to absorb. I know it's hard sitting in that doctors office trying to take it all in and forgetting much of what is said.
I hope you are able to get everything under control quickly and he is back playing basketball with lots of energy soon
Often times it is hard to tell the difference. Sometimes it is just my gut telling me it is not the flu or a virus. Other times it's a little bit wait and see if it is a virus my son is usually feeling better after a few days.
I would imagine they will discuss a maintenance medicine with you at his appt. Prednisone works quickly to reduced inflammation but it you need something else to keep it under control and long term pred use is not good.
I would suggest a couple of things keep a diary of food and symptoms. This will help in the future to know what a flare looks like for him also if any foods set him off. I also keep a binder with all tests and notes in it. Makes for easy reference and also makes it easier to see any patterns or just go back when you have had more time to absorb. I know it's hard sitting in that doctors office trying to take it all in and forgetting much of what is said.
I hope you are able to get everything under control quickly and he is back playing basketball with lots of energy soon
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Hi Kaitlynn,
welcome to the forum. your nephew is blessed to have you in his life because you are already taking the time to start researching.
My daughter has Crohns Colitis and she is 15 as well.
It is a tough disease. Each person is different however and will responds differently to each medication.
My heart goes out to your nephew.
What medications has the GI mentioned starting him on while the Prednisone starts working? As you know, prednisone has a lot of side effects but is needed for a short term.
With our daughter, if she gets the flu, she also gets a flare. bugs to a Crohns patients usually means they will go into flare. It is often the nature of the disease.
The latest research is proving to be very exciting and it could be a great way to learn more about Crohns. They are 2 years out in the U.S. with clinical trials, but have been very successful with intense antibiotic treatment in Australia. It is called the anti M.A.P. therapy and we are looking into it ourselves.
I would be glad to answer any questions you might have. also feel free to private message me.
Julie.
welcome to the forum. your nephew is blessed to have you in his life because you are already taking the time to start researching.
My daughter has Crohns Colitis and she is 15 as well.
It is a tough disease. Each person is different however and will responds differently to each medication.
My heart goes out to your nephew.
What medications has the GI mentioned starting him on while the Prednisone starts working? As you know, prednisone has a lot of side effects but is needed for a short term.
With our daughter, if she gets the flu, she also gets a flare. bugs to a Crohns patients usually means they will go into flare. It is often the nature of the disease.
The latest research is proving to be very exciting and it could be a great way to learn more about Crohns. They are 2 years out in the U.S. with clinical trials, but have been very successful with intense antibiotic treatment in Australia. It is called the anti M.A.P. therapy and we are looking into it ourselves.
I would be glad to answer any questions you might have. also feel free to private message me.
Julie.
Hi kaitlynn, and welcome! Sorry to hear of your nephew's illness, but you'll find great support and info on this forum. I have! My son was dx'd in March at age 8. He started getting sick in Jan with a flu, but then it morphed into something different. He was having daily fevers, night sweats, fatigue, abdominal pain, etc., and I knew it was no longer a flu. I'm not sure if your nephew would still be experiencing symptoms of his flare, or if it is a bug. I know my son started feeling better on Prednisone right away, but it took a good month before he really felt like his old self. Hope the upcoming appt goes well!
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Welcome to the forum Kaitlynn, I'm so sorry to hear about your nephew!
You may also want to look into Enteral Nutrition. It's a nutritional formula that is sometimes used to induce remission but can also help with nutrition. You are probably familiar with Boost and Ensure, these are a type of these formulas. There are others which are specially formulated to be easier to digest and more easily absorbed. When you have inflammation in your small intestine, malabsorption can be a problem. These other formulas are easier to digest, so more of the nutrients will be absorbed. A common one used by kids here is Peptamin. Many of the kids here drink these shakes as a supplement to their diets.
My son used it exclusively (meaning, no food, formula only for six weeks) to induce remission and then used it as a maintenance treatment (1/2 dose with regular diet added back) for almost two years. Unfortunately, it's not as successful at maintaining remission and he's had to add remicade. However, he still continues with 1 to 2 shakes a day.
Mineral deficiencies may be contributing to his fatigue. My son was also quite athletic when he was diagnosed and I truly believe the nutrition he gained from these shakes kept him in remission and continue to contribute to his wellbeing.
Its well worth asking the GI about enteral nutrition (EN). Also, it may be covered by insurance... I'm not in the U.S., so not very familiar with your med system, but other here may have advice for you, if necessary.
Here is a link with some info on EN - http://www.crohnsforum.com/showthread.php?t=36345
As far as crohns itself, as was mentioned above - it's different for everyone! :ymad: Makes it very hard to get clearcut answers! A diary of how he feels, what he's eaten, etc. may help you find some trends/triggers. Also, as Jacqui mentioned, as time passes, you and your nephew will learn how he presents with a flare opposed to a virus (but, even after time, it's sometimes hard to tell). There are no consistent set of symptoms - some people have diarrhea, others constipation, some both, some have fevers, some joint pains, some fatigue, etc.
It's up for debate whether diet plays a role... Most GIs will say no. I don't believe diet will trigger a flare, however, I do believe diet plays a role in controlling symptoms, ie high fibre is tough to digest and can irritate an inflamed intestinal tract, same with seeds, nuts and popcorn. Some find spicy food, dairy or gluten to be a problem. There are members who find that controlling their diets do help, however. Here are links for diet subforums you may want to look through.
http://www.crohnsforum.com/forumdisplay.php?f=268
http://www.crohnsforum.com/forumdisplay.php?f=17
There are a number of treatment options - look through the Treatment subforums for some info. At the top of each of the medication subforums, you'll find a 'sticky' - a thread with general information on the medication.
http://www.crohnsforum.com/forumdisplay.php?f=16
And, feel free to ask any questions!! There are lots of wonderful members and parents here who can help you learn about crohns and all that comes with it! :ghug:
You may also want to look into Enteral Nutrition. It's a nutritional formula that is sometimes used to induce remission but can also help with nutrition. You are probably familiar with Boost and Ensure, these are a type of these formulas. There are others which are specially formulated to be easier to digest and more easily absorbed. When you have inflammation in your small intestine, malabsorption can be a problem. These other formulas are easier to digest, so more of the nutrients will be absorbed. A common one used by kids here is Peptamin. Many of the kids here drink these shakes as a supplement to their diets.
My son used it exclusively (meaning, no food, formula only for six weeks) to induce remission and then used it as a maintenance treatment (1/2 dose with regular diet added back) for almost two years. Unfortunately, it's not as successful at maintaining remission and he's had to add remicade. However, he still continues with 1 to 2 shakes a day.
Mineral deficiencies may be contributing to his fatigue. My son was also quite athletic when he was diagnosed and I truly believe the nutrition he gained from these shakes kept him in remission and continue to contribute to his wellbeing.
Its well worth asking the GI about enteral nutrition (EN). Also, it may be covered by insurance... I'm not in the U.S., so not very familiar with your med system, but other here may have advice for you, if necessary.
Here is a link with some info on EN - http://www.crohnsforum.com/showthread.php?t=36345
As far as crohns itself, as was mentioned above - it's different for everyone! :ymad: Makes it very hard to get clearcut answers! A diary of how he feels, what he's eaten, etc. may help you find some trends/triggers. Also, as Jacqui mentioned, as time passes, you and your nephew will learn how he presents with a flare opposed to a virus (but, even after time, it's sometimes hard to tell). There are no consistent set of symptoms - some people have diarrhea, others constipation, some both, some have fevers, some joint pains, some fatigue, etc.
It's up for debate whether diet plays a role... Most GIs will say no. I don't believe diet will trigger a flare, however, I do believe diet plays a role in controlling symptoms, ie high fibre is tough to digest and can irritate an inflamed intestinal tract, same with seeds, nuts and popcorn. Some find spicy food, dairy or gluten to be a problem. There are members who find that controlling their diets do help, however. Here are links for diet subforums you may want to look through.
http://www.crohnsforum.com/forumdisplay.php?f=268
http://www.crohnsforum.com/forumdisplay.php?f=17
There are a number of treatment options - look through the Treatment subforums for some info. At the top of each of the medication subforums, you'll find a 'sticky' - a thread with general information on the medication.
http://www.crohnsforum.com/forumdisplay.php?f=16
And, feel free to ask any questions!! There are lots of wonderful members and parents here who can help you learn about crohns and all that comes with it! :ghug:
