Son recently diagnosed with IBD

[IBDmum]

Hello,

I live in the UK and my 12 year old has recently been diagnosed with moderate - severe IBD (likely UC) but doctors won’t confirm yet.

Hes being on prednisone and octasa for 3 months and Azathioprine added 2 months ago. We are nearly off the steroids and his gastro symptoms seem to be under control but he has suffered with steroid side effects. One being dramatic weight gain and then issues that come with weight gain - back pain, breathlessness, low self esteem etc.

I am just reaching out to find others who have been through this, I have found it heartbreaking seeing him go through all this but am slowly coming to terms with everything.
I am concerned about the future and what it will hold but am learning to take each day as it comes.
Thanks for reading

 

[crohnsinct]

My girls did not get weight gain with steroids so I can speak from experience but I have read on here numerous times that once they are off the steroids the excess/puffy weight gain will slowly go away.

Does your GI office have a psychologist as part of the practice or maybe they can refer your son to one. It could definitely help him process and deal with all the changes going on.

The beginning is scary and tough but it gets better. We usually say around here it takes a year to feel like you have control of things and a good understanding of the disease etc. Once you find a drug that works and your child is in a good solid remission, it gets easier.

I ave two daughters with Crohns for a total of 16 years with this disease and numerous drugs, flares etc. I can tell you that my girls have lived a VERY full and normal life. Both girls missed very little school, both were on varsity sports, competed in sports outside of school and one just completed two degrees in University and is going for her masters.

My oldest has been dealing with inflammation and flares for the past 5 years. There have been hospitalizations but nothing has stopped her from completing her degrees and doing everything she has wanted.

Read this thread https://crohnsforum.com/threads/success-stories.27079/

Most people come on the forum for help with trouble situations so if you read the forum it gives a skewed representation of what life with Crohn's is like. For every person on here there are many who are out there living their lives in good solid remission. They don't come on here because they have no need. We try to update the Success thread but when things are good we often forget but it is uplifting when you are down.

 

[pdx]

My child was also diagnosed at 12. The first year was really hard for us too! Hang in there--things will get better. This forum has been a great resource for me; I hope it will be for you too.

 

[my little penguin]

My kiddo was dx at 7 and now 17
Two things
Boys who are 12 tend to gain weight quickly all at once then get big feet then shoot up in height between 13-15
Add in steriods and emotions go every where
Depending on how fast he weaned the more side effects he may feel
But these things go away
Weight gain tends to stay since they are growing and grow into it
Puffy face etc do go away as well

the good news is he has meds and things will settle and he won’t be on steriods

it does get slot better honest
Just takes a bit to settle in the new normal

 

[Mountaineer01]

As someone who was first treated with steroids and was on them way too long, I can sympathize. My original GI was going to leave me on steroids permanently, but my GP felt it was a bad idea and weaned me off of them. While the steroids did their job and kept me in remission for several months, it wasn't permanent and I experienced several nasty side effects. I eventually went on Humira and am fortunately still in remission. I've never lost all the steroid weight, though the other effects went away over time.

At 12, he's at an awkward age anyway. Adding a health condition and the steroid effects doesn't help. Does he have any hobbies or interests, particularly things he thinks he would enjoy but hasn't fully taken up? That may serve as a constructive distraction for him. I wouldn't necessarily recommend any strenuous sports given he has IBD, but just about anything else he would be interested in pursuing, I would say to try it and see if it helps him. Learning a new skill or participating in a newly discovered interest can do wonders.

Also, you may want to look at what he eats and try to make some adjustments. Some foods, particularly overly processed foods such as deli meats or snack foods with a lot of preservatives in them can contribute to inflammation. I've also found in my own experience that I need to seriously limit dairy and red meat. As much as I love steak, it doesn't love me back. I also can't do any raw vegetables - everything has to be cooked and even then, I can't do vegetables that are known for causing bloating like cabbage or broccoli.

Good luck. One key point is to make sure to keep his morale up and for him to learn how to live with IBD versus letting it control him.

 

[Maya142]

Steroids are definitely tough. I definitely agree that seeing a psychologist can help him cope with having a chronic illness and the nasty side effects that come with steroids. My daughter has always been very, very thin and used to never gain weight on steroids, although she would get the puffy "moon face" (rounded face). But one time after being on steroids for 6 months, she gained a lot of weight - like 25 lbs. It was a real shock since she'd always been so slim. She had been on and off steroids for 5-6 years before that due to severe inflammatory arthritis as well as Crohn's, but had never gained weight before. But that time, she gained weight really suddenly and got these dark red stretch marks on her sides and had to deal with the puffy moon face etc. She also developed low bone density.

BUT she did lose some of the weight - not all, but definitely some. She only started losing weight once she was completely off steroids. And it did take quite a while (think months, not weeks). She didn't go back to her old normal weight (she was very thin) but is now in the middle of the healthy weight range for her height. And the stretch marks faded and the puffy face went away. She was done growing when this happened and had been on and off steroids so much (for years), so I think that really prolonged the amount of time it took the side effects to go away. Your son is still growing, and I'm sure he will even out. I know it's really hard to be patient, but unfortunately, that's what's needed.

My daughter was encouraged to move around as much as she could - she loves swimming and biking and also did physical therapy (she has inflammatory arthritis as well as Crohn's). She was also told to reduce sugar and processed foods and just to eat well. I wouldn't make any dramatic diet changes without consulting your GI or a dietician though, since your son is still growing.

The first year of being diagnosed was definitely the hardest for us. As you get used to your "new normal," things will get easier. Hang in there and definitely read the Success Stories thread!!