Steroids aren't working.

[caitlintg123]

Hi, I'd just like a bit of help understanding crohns, I don't have it myself but my bestfriend does. She's had it for a really long time but is quite in denial about it she only told me recently she has it. She's lost a significant amount of weird approx about 2 stone in a month and a half.

She told me she was on 14 pills a day and was worried about her steroids and how it'll change her. Today she came to me in a depressive state I've never heard her talk the way she did today she's usually the happiest person you'll ever meet never a dull or down moment. Today she was told her steroids aren't working today. She's pretty much scared for her life talking to me about how she doesn't think she can cope anymore and that she won't recover or put on any weight. I'm really scared for her. She's 17. She has a strong gut feeling she's going to die within the next year.

If any of you have experienced this or know how I can help her or reassure her maybe with diet schemes could you please get back to me asap I hate seeing her this way.

thank you.

 

[DJW]

Hi and welcome.

I'm sorry your friend is doing poorly. Steroids (prednisone) is a short term drug used to reduce inflammation until the other meds start working. Their are a number of people who find prednisone can have a dark effect on their personality. She needs to let the doctor know they are not working. The dose may need to be adjusted or she may need to be switched to a different med.

Crohns can caused depression. Continue to be a friend. She may want to isolate herself. Keep her engaged in life. She should also talk to her doctor. Counciling is also effective.

Keep asking question. Friends like yourself are very important.

Sending both of you my support.

 

[Liquid Bacon]

Tell her to hang in there and never give up hope! I was in a similar situation when I was 17 where I was wasting away fast (almost 6 feet tall and under 100 lbs) and none of the medications worked. Luckily when you turn 18, there are a whole bunch more approved meds her doctor can try.

What I had to do for a year (to avoid surgery and get me through till 18) was the tube feeding. Basically you don't eat at all - ever! - and using a machine with a feeding tube, pump about 12 cans of Boost shakes into yourself every night. It sounds crazy but it calmed me right down because the stuff is very easy for your body to digest. I even gained a little weight, and it got me through till I was able to try the "adult" drugs.

Having good luck with Humira so far.

 

[UnXmas]

Steroids can have major effects of a person's emotions. If it gets really bad, she may need to speak to her doctor about alternative treatments or about lowering the dose. Steroids do have worrying side effects, but most of them only come about with relatively long term treatment, so sometimes steroids are used for a short period to get the disease under control, before being reduced. Almost all the side effects are reversible, especially the short term ones, and she should go back to normal as she comes off the medication.

There are various diets that may help her put on weight. Food supplements like Ensure and Fortisip contain all the vitamins and things a person needs, and come in the form of milkshake or juice type drinks, which are convenient and easy to have. Some people may benefit from reducing the amount of fibre in their diet, as fibre is hard to digest. She should also be looking at calorie-dense foods - i.e. foods that contain a high number of calories without a large volume of food. This is why getting vitamins from supplements can be a good idea - it means she won't have to fill up on low-calorie fruit and vegetables, but can still get all she needs from her diet. Eating little and often may help, and liquids may go down easier than solids.

How closely is she being monitored by her doctors, and does she have a good relationship with her family? She'll need a lot of support and medical expertise.

It is very unlikely that someone will die from Crohn's. But it can feel very scary to get sick, especially when you are young and the expectation is for you to be healthy, and it can seem like all your peer group around you are healthy.

Good for you for being a good friend.

 

[If*]

Hello, so sorry for your friend. I read your post and can empathize. This illness can feel like it is consuming you. Wasting is a awful symptom. What could possibly be happening is the digestive tract surface is damaged or inflamed ~ making food limited to being absorbed.
Can your friend see a nutritionist, dietitian? I echo what Liquid bacon has suggested, with feeding. It has shown positive results and is worth looking into. Her Dr. can explain more on En/EEN.

my best to you.