Hi everyone, my name is Tara and my 18 year old son was just diagnosed with Crohn's disease. I hope you all don't mind me joining you all for him. You all know how males are. We are going back to the dr tomorrow to discuss options. Can anyone tell me any of those options and the do's/don'ts to the disease?
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Son diagnosed with Crohn's
- Thread starter Hanvet
- Start date
nogutsnoglory
Moderator
Welcome to the forum and sorry to hear about your son. It's hard to say do's and dont's because whet works for some doesn't for others. Prepare to read a lot!
Generally if he has inflammation or scarring a low fiber diet, avoid fried foods, take meds.
Generally if he has inflammation or scarring a low fiber diet, avoid fried foods, take meds.
DustyKat
Super Moderator
Hi Tara and :welcome:
I'm so sorry to hear about your boy...:hug:...but by all means join us!...
We have a parents forum here that you may like to drop by and have a look around as well...
http://www.crohnsforum.com/forumdisplay.php?f=49
Also have a good look through the diet forum. Some doctors believe that diet plays no role in the disease, yes, it doesn't cause Crohn's but most people will attest to diet having an affect on their symptoms when flaring or helping them to maintain a feeling of well being when in remission. Diet, as in enteral nutrition, is also used as way of gaining remission for some sufferers...
http://www.crohnsforum.com/forumdisplay.php?f=17
http://www.crohnsforum.com/forumdisplay.php?f=161
Options generally do involve medication, perhaps diet modification, that sort of thing. Depending on your doctor some subscribe to a step up approach which means starting with milder drugs and building up as needed, whereas others believe in the top down approach which is hit it hard and get it into remission ASAP. Then there is surgery if he has complications that warrant that.
Where is your son Crohn's located and what symptoms does he have?
Good luck with the appointment and let us know how you get on. Welcome aboard!
Dusty. xxx
I'm so sorry to hear about your boy...:hug:...but by all means join us!...
We have a parents forum here that you may like to drop by and have a look around as well...http://www.crohnsforum.com/forumdisplay.php?f=49
Also have a good look through the diet forum. Some doctors believe that diet plays no role in the disease, yes, it doesn't cause Crohn's but most people will attest to diet having an affect on their symptoms when flaring or helping them to maintain a feeling of well being when in remission. Diet, as in enteral nutrition, is also used as way of gaining remission for some sufferers...
http://www.crohnsforum.com/forumdisplay.php?f=17
http://www.crohnsforum.com/forumdisplay.php?f=161
Options generally do involve medication, perhaps diet modification, that sort of thing. Depending on your doctor some subscribe to a step up approach which means starting with milder drugs and building up as needed, whereas others believe in the top down approach which is hit it hard and get it into remission ASAP. Then there is surgery if he has complications that warrant that.
Where is your son Crohn's located and what symptoms does he have?
Good luck with the appointment and let us know how you get on. Welcome aboard!
Dusty. xxx
KWalker
Moderator
Welcome, I'm not much older than your son (21). Don't even think twice about coming on here to ask for help, that's what we are here for! Like Dusty said, we can't really give you any options/opinions right now because we don't know what meds the doctors want to put him on, or his symptoms so if you could fill us in with some more info that would be great. We are not doctors, and with crohns each and every one of us is different, but there are a lot of very knowledgeable people on this website that would be glad to help. Hope to hear from you once you visit the doctor
Angrybird
Moderator
- Location
- Hertfordshire
Hi Tara and :welcome: Depending on how severe your sons symptoms have been and what the tests has shown the docs may want to try the diet route, if not it will be meds. I was diagnosed not long before my 17th birthday and was to embaressed at the time to speak to 'strangers' about it, now though after going through a tough time I am so pleased I joined the forum, the people here are wonderful and very supportive. Best of all they GET IT, if you or your son ever needs to vent about what is going on this is the place to be Let us know how you get on tomorrow.
Let us know how you get on tomorrow.
xJillx
Your Story Forum Monitor
Hi and welcome! I am sorry about your son's recent diagnosis. I think it is wonderful you've joined the forum for your son. You'll learn so much from those who deal with Crohn's daily.
There are many different treatment options. Unfortunately, there isn't a miracle drug. Some meds work well for one person, and not at all for another. It can take time to figure out the right treatment plan. What direction your son's GI decides to go with depends on your son's disease location and severity. If your son's disease is considered mild to moderate, his GI may start him on an anti-inflammatory called 5 ASA's (ex: Pentasa, Lialda, Asocol). These drugs are considered mild with little side effects. He may also put your son on a course of steroids for a few weeks. Steroids should help immediately giving the maintenance drug time to kick in.
However, if your son's disease is more severe, his GI may suggest starting him on an immune suppressant (6MP) or biologic (Remicade or Humira). These drugs are used to hopefully calm down the over active immune system. Of course, there is a concern of increased risk of infection or even cancer with this type of drug. However, the risk is very low, and with severe disease, the benefits of these drugs greatly outweigh the potential side effects.
Of course, as Dusty said, there are diet & lifestyle changes that can help, as well. Sometimes a combo of traditional meds, diet, and lifestyle changes is needed. It all depends on the individual.
Do your homework and write down your questions, so you won't forget anything. Good luck and let us know how it goes.
There are many different treatment options. Unfortunately, there isn't a miracle drug. Some meds work well for one person, and not at all for another. It can take time to figure out the right treatment plan. What direction your son's GI decides to go with depends on your son's disease location and severity. If your son's disease is considered mild to moderate, his GI may start him on an anti-inflammatory called 5 ASA's (ex: Pentasa, Lialda, Asocol). These drugs are considered mild with little side effects. He may also put your son on a course of steroids for a few weeks. Steroids should help immediately giving the maintenance drug time to kick in.
However, if your son's disease is more severe, his GI may suggest starting him on an immune suppressant (6MP) or biologic (Remicade or Humira). These drugs are used to hopefully calm down the over active immune system. Of course, there is a concern of increased risk of infection or even cancer with this type of drug. However, the risk is very low, and with severe disease, the benefits of these drugs greatly outweigh the potential side effects.
Of course, as Dusty said, there are diet & lifestyle changes that can help, as well. Sometimes a combo of traditional meds, diet, and lifestyle changes is needed. It all depends on the individual.
Do your homework and write down your questions, so you won't forget anything. Good luck and let us know how it goes.
Sorry I didn't give much detail. All I really know right now is he has active colitis which she said was Crohn's disease. I know it is in the lower part of his small intestine. I don't exactly know what that region or name really is but will tomorrow. Some of you may know. He also has gastritis which they are already treating. The test results just came back yesterday about the Crohn's so we haven't discussed anything with the dr yet. He has had these symptoms for about a year now off and on and we just played it off to not eating right and not taking care of himself like he should. He worked at a fast food restaurant at the time and that is what he lived off of diet wise. The symptoms (cramping, diarreah, achy body) got really bad about 3 weeks ago and he started running a fever so I took him to the ER thinking it might be his gallbladder. He has good and bad days. I have researched a bit and he has recently stop smoking thank goodness and has taken greasy foods from his diet. He has been on tylenol every 4-6 hours for over a week now just to get some relief. They give him an IV in the hopsital and morphine for pain that day and did a CT scan. Since then he has had a endoscopy and colonoscopy.
Angrybird
Moderator
- Location
- Hertfordshire
Hi, sounds like the disease is at the terminal ileum which is a common place for crohns - this is where mine is at it's worse although I have issues all through the large bowel as well. Look's like all the tests required have been done to put a good plan of action in place tomorrow. I hope it goes well and good luck.