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Crohn's Disease Forum » Treatment » New to crohn's please help.


09-24-2010, 06:26 AM   #1
marcus
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Join Date: Sep 2010
Location: United Kingdom
New to crohn's please help.

Hello, my little brother was diagnosed with crohn's a few days ago after a colonoscopy,the said he was a bit inflamed, we are all still sort of in a daze at the minute, i'm really close to my little bro and i am trying not to be a mess around him. He had his first visit to A&E the other week he was pale had the runs with a bit of blood and and a bit of stomach pain for a few days, he is better now, but is still going the loo alot but not the runs or blood just frequently, and has no stomach pain he is just tired.

Now they told us all about crohn's and how there was no cure, but to keep in remission was the goal, so they gave us prednisolone to take home, 60 mg first week, 40 mg second, then down roughly five mg each week for roughly three months, now i have done some research on prednisolone to say i'm scared is an understatement the sides look horrible i can't believe they have nothing better.

I suppose what i want to know is:

Does this sound like too high a dose for his symptoms.

Will he get some of the nasty sides on this dosage, like problems with bones, dependency, swelling etc

Should we ask the doctors to consider something else less potent as this makes sense to me, i think with those type of sides it should be a last resort.

What are the other options for my little bro to try.

Thanks for reading and your help is really appreciated
09-24-2010, 07:17 AM   #2
Guest
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hi Marcus, welcome to the forum. i hope you can find some reassuance here - i can tell how worried you are about your little brother.

looking at the positives - it's good that he's been diagnosed and put on meds so quickly - the longer Crohn's is left untreated the further the journey back to health, and the more damage is done. it is also good that you've been told he was 'a bit inflamed', sounds to me like it's a mild case.

pred is very often the first port of call when diagnosed with Crohn's - it reduces the inflammation & stops further ulceration in its tracks.. so that's why it's given straight away, to get him out of this flare situation. you may find further down the line that his consultant will put him on different meds to keep things under control, which work in a totally different way.

i would suggest that either you or your parents make sure you're all fully informed at the next appointment, so you don't have to go worrying.. if necessary write down all the questions & take the notes with you.

i wouldn't think his bone density will be compromised with such a short dose of pred - particularly if you can get a good calcium rich diet going for him (that's if he's ok with dairy) - things like milk, yoghurts, cheese and also green veg are rich in calcium... also Vitamin D helps calcium to be absorbed properly.

diet can play a massive part in whether we're suffering or not.... there are loads of threads here on good diets for Crohn's sufferers, and also for when we're flaring - at those times it's importance to reduce the fibre, so low residue foods are the way to go when things are hurting, or even liquid diets if necessary.

try to encourage him to keep off acidic things, raw vegetables, spicy foods.... also gas can cause problems so fizzy drinks should be limited (they also leach calcium from the bones).

just shout out if there's anything we can help you with, and have a good mooch around the forum.
09-24-2010, 07:38 AM   #3
marcus
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Thanks for the quick reply dingbat, they said he looked sore and inflamed sorry i didn't explain correctly they will be doing another test where he swallows a liquid and has an xray i forget what it was called exactly i'm hoping for the best on that, he seems okay, only needing the loo frequently i'm not really sure how to gauge how he is in terms of a flare up because it's never really happend before.

I'm just glad there are places like this where info is available and other people to talk to about it, it hasn't really sunk in yet, and i'm very close to him it's horrible not seeing him playing sports going to school and all the rest of it i hope it wont be too long before he can do those things again.
09-24-2010, 07:45 AM   #4
Crohn's 35
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Hi Marcus, You are amazing to come on here as a brother, usually we only get spouses and parents, rarely a sibling.

Sorry he is diagnosed, but as Dingbat mentions the high dose is too "catch' it before it gets out of hand. Be thankful he has no pain, that is the main problem with Crohnies. Prednisone is a nasty drug, but mostly long ter. His doctor has him on high doses which I was only on in my initial diagnosis. But he will in the near future need something to keep it at bay which is usually Asacol or Pentasa, depends on where his Crohn's is active. I was on Entocort which is a mild forum of Prednisone, way less side effects and usually safe for most of us in the mild stages. Some are put on Pentasa and Entocort. If he is in the mild stages it is best to stick to milder drugs.

Try to encourage him to drink water, alot of people dont realize we can dehydrate very easily and will help keep his liver and toxins out better. Look up low residue diet. Most do well on that. How old is your brother and do you know where his Crohns is active?

Glad you are here, keep us informed, and let us know how he is doing. Lots of help here! Take care.
09-24-2010, 09:13 AM   #5
marcus
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How old is your brother and do you know where his Crohns is active?
He is fifteen in november i'm not sure exactly where about he is having trouble, but they showed us the diagram after his colonoscopy i'm going to see if i can find out more as i'm still learning about crohn's, thats why i'm on here as this is all new to me.
09-24-2010, 10:17 AM   #6
Dallies
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Hi Marcus, it's wonderful that you are here for your brother. What a fantastic brother you are!

I know we were concerned about the amount in mg, Meg our 16 year old daughter had to take of azathriprine when she was first diagnosed and then they upped the dosage!

We were told it's to do with body weight as to her dosage, regarding how many mg she had to take. A great big welcome to you!!!! xxxxxxx
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Dallies xxxx Parent of a 21 year old daughter diagnosed with Crohn's Disease in June 2010

Meds: humira

Surgery:hemicolectomy June 2010

Last edited by Dallies; 09-24-2010 at 11:53 AM.
09-24-2010, 12:57 PM   #7
saidinstouch
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Location: San Francisco, California
If the doctors didn't tell you this, then start having him take a calcium citrate supplement (make sure it is the citrate form). He should take around 1000-1500mg of the calcim supplement a day. Also, add in a vitamin D3 (cholecalciferol) supplement at 1000 iu a day. Ideally you want to get a liquid calcium supplement (or pills that say they are rapidly dissolved like caltrate) and a gel cap type vitamin d. This will help with absorption and help to protect his bones.

As for the other side effects, find healthy snacks that he can eat at all hours of the day. When I am on pred I will randomly get very hungry and need to snack or eat an extra meal, even at 4am. If you want to help stave off weight gain, the best thing you can do is find healthy snacks that are also filling. I found string cheese, hard pretzels, and granola bars to work very well for me. Also, fruits and vegetables are obviously good healthy choices, assuming those don't aggravate the crohns.

The dependence you speak of isn't an addiction in the normal sense. Your body stops making cortisol (the form of prednisone our body naturally makes) so you cannot stop without doing the taper his doctor described or you can die. This is an important fact to note as if you travel it is crucial that you DO NOT EVER forget to bring the prednisone along. A missed day isn't terrible safety wise, but your brother will feel like a zombie who got run over by a truck about 1000 times. If while your brother is tapering he notices a serious lack of energy or fatigue, then it is recommended to slow the taper from 5mg to 2.5mg a week. This is mostly only an issue for people when they are under 15-20mg of pred a day, so he can taper from 40 down to 15 or 20 in the 5mg a week increments. Once he is down to 5mg a day, he should probably do a 2.5mg a day week after instead of just stopping as it makes the last step a bit easier. Once he gets down to under 15-20mg a day he will also notice the side effects starting to become less severe if he experiences and serious ones.

I would recommend he takes the prednisone mostly in the morning, but when he is on 40mg and higher it is probably a good idea to split the dose. If he takes an afternoon/evening dose, have him take it at least like 6 hours before bed. One of the biggest issues prednisone can cause (minor side effect longterm, but one of the most annoying effects) is that it can be hard to sleep. Taking the prednisone earlier in the day helps to alleviate this problem significantly.

Your brother might also notice extreme changes in mood or emotions. This is normally not a problem so long as your family is understanding and accepts that if he is angry it isn't his fault. You do have to watch out to make sure he doesn't go completely manic and becomes a danger to himself or others, but this is a rare occurrence and you would know if this is happening.

Hopefully this will help to alleviate some of your concerns about his taking prednisone early on. As stated, it is one of the best drugs for controlling a flare and is never used as a longterm treatment unless all other options have failed. Once the flare is controlled the doctor will put him on a maintenance drug. Depending on the severity of the crohns it will likely be: pentasa, 6mp, or remicade (or drugs related to these ones). Each has their own benefits and side effects, but you can cross that bridge once his doctor decides what to put him on. We have a new wiki on the forum that is an excellent resource on most of the drugs commonly used to treat crohns disease. I would start there for information on what is in his future. Then you can look through the treatment subforum to read stories and experience of people on most of the drugs as well. If you have any questions about a specific drug, there is almost certainly someone here who has experience with it and will gladly answer your questions as quickly as possible.

This disease has no cure, but it can be controlled. Your goal should be helping your brother find a program that works for him. Good luck and if you have any further questions, don't hesitate to ask here or PM me.

-Andrew
09-24-2010, 02:32 PM   #8
marcus
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Join Date: Sep 2010
Location: United Kingdom
Hi Marcus, it's wonderful that you are here for your brother. What a fantastic brother you are!

I know we were concerned about the amount in mg, Meg our 16 year old daughter had to take of azathriprine when she was first diagnosed and then they upped the dosage!

We were told it's to do with body weight as to her dosage, regarding how many mg she had to take. A great big welcome to you!!!! xxxxxxx
Thanks, i wish i could do more for him it's very frustrating for me, i'm going to get lots of info so i can offer advice and i can help him that way.

I wish you and Meg all the best.
09-24-2010, 02:50 PM   #9
marcus
Member
 
Join Date: Sep 2010
Location: United Kingdom
If the doctors didn't tell you this, then start having him take a calcium citrate supplement (make sure it is the citrate form). He should take around 1000-1500mg of the calcim supplement a day. Also, add in a vitamin D3 (cholecalciferol) supplement at 1000 iu a day. Ideally you want to get a liquid calcium supplement (or pills that say they are rapidly dissolved like caltrate) and a gel cap type vitamin d. This will help with absorption and help to protect his bones.

Your goal should be helping your brother find a program that works for him. Good luck and if you have any further questions, don't hesitate to ask here or PM me.

-Andrew
Thanks for taking the time to write all that for me , the people on here have been great, i will make sure to look in to the vitamins and supplements i think they will be very important while he is on prednisolone, i'm just really confused about diet there doesn't seem to be a standard one for crohns, i will make sure to read up in the diet section.
09-24-2010, 05:08 PM   #10
tflock
 
Join Date: Sep 2010
Location: Mooresville, Indiana

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hi Marcus. I am 16 and i was diagnosed on April 7, 2010. My colonscopy came back and the dr. said that i was a 7 out of 10 when it comes to inflammation of the colon. Only in my colon and not in the small bowel. Pred is a very common to use at first and that is what i did. I started at 50mg and tapered everyweek by 10mg until i reached 20mg. I then was getting bad symptoms and moved to 6mp. I am still on pred today and at 20mg of it. I was on 5mg on monday of this week but was getting bad again to say the least. The physical dependency of pred becomes present after awhile (cant say for sure how long...sry). I have suffered the side effects that suck (facial swelling, irritability, muscle loss, 150 over 90 blood pressure at times, and a laundry list of others). Try to watch his symptoms and look for the side effects but really pred is very standard and the dosage sounds fine.
09-24-2010, 05:10 PM   #11
seaofdreams
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Welcome Marcus!
The information everyone has given here is great, there's nothing I could add if I tried haha.
You sound like a really great brother and your support will mean so much through your brothers journey with Crohn's
__________________
~ Nicci

"Never feel guilty for being sick and try to stop comparing yourself and your life to others. You're doing the best you can under the circumstances you have and you're doing great."

Diagnosed with Crohn's in August 2009
Medication: 20mg Methotrexate injection weekly
Supplements: Folic Acid|Vitamin D|B12|Iron Complex|Magnesium Complex|Calcium|
09-25-2010, 02:49 PM   #12
rayzorblade
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Just wanted to add that I think you're a great brother and I hope that your little brother's journey with Crohn's improves. This really made me smile. Good luck!
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