Support for young adults with crohns

[rosie424]

How can I help my son who has been recently diagnosed with Crohns lead a life of health energy and vitality.  Last Friday he has had surgery to drain really complex abscesses from his peri-anal area. He is currently back in hospital,while they have him on various forms of antiboitics.  He is very low at the moment and doesn't feel like eating.  He has lost a lot of weight over the last few months due to the disease and I worry that he has lost all appetite. What can we do in order to restore hunger in the meantime?

He is such pleasure for a son and I am concerned that he will lapse into depression with this horrible disease. He has recently just started with study and is concerned that he won't be able to continue.

The time it takes to visit and evaluate the disease and sheer discomfort he has to experience as an 18 year old is devastating.

the colon rectal surgeon has suggest due to the extent of his abscesses a temporary Ileostomy which may give the peri-anal area to heal.... is this advisable or a last measure?

His Gastroentrologist wants to put him on Flixamab,  will this help him long term?  Or is it better that he goes through the Ileostomy solution in the meantime or maybe this has to treated from all areas surgically and through medication.

My main query though is how do you enhance an appetite in Crohns and build up a young person?

[mimi1225]

My son is 13 years old and was diagnosed with UC when he was 8 years old. He has been a very active boy. First sign was that he developed some bruises on both legs. Then he was having diarrhea. but he did not complain of any abdominal pain. We are blessed we have a really good insurance. We went to see the gastroenterologist right away and she ordered a colonoscopy and endoscopy the next day.  After the doctor finished the procedures she came up to me and gave me a preliminary diagnosis she said that my son had Ulcerative Colitis.  That was the hardest day of my life.  It is hard when they are so young.  He has been taking pentasa since then.  No other meds.  I worry about all the side effects. But now he has been complaining of some pain when he urinates and he feels that he does not empty his bladder. The urologist took some tests(urinalysis, bladder ultrasound) everything is normal.   Doctor thinks he might have a prostate infection due to the colitis.  Now he wants him to take antibiotics. Has anyone had any problems with the prostate?

[Heavytreads]

I would be careful of yogurt...the only one that might be tolerable is the Greek Yogurt...also its best to use only organic vitamins as they are not synthetic and do not effect the colon...I have had great success with them.
Let me know how it goes...also with regard to the book...I have used it as a guide for a long time but have found that it is possible to be flexible on some points in there...
It will be a long road to recovery...but there is light at the end of the tunnel and have faith and stick with it...and you will be rewarded.
Any questions or if I can help in anyway...let me know.
Thanks.

[UCBen]

I was diagnosed almost a year ago today.  I was in my senior year of college, and out on a rock climbing trip when the first symptom hit me.  I know what it feels like to go from super active and normal to hitting rock bottom.  I have spent the last year adjusting, and as a 22 year old kid who works as a rock climbing and backpacking instructor at school it is extremely tough.  

My appetite was almost zero and I lost forty pounds in six weeks.  They kicked the steroids up and I ballooned up sixty pounds over the past year.  It's a constant struggle with managing medicine.  I've been on every 5 ASA, Remicade, Hydrocodone, Hydrocortisone shots, Prednisone- you name it.  The best advice I can give would be to rest.  I know it sounds like pulling teeth, but if he can rest 8-10 hours a day every day, the body has time to heal.  I started a job and moved cities a few months ago and I'm constantly struggling with sleep.  If he has a job, sit down privately and work out a schedule that works best for his sleep habits and patterns.  The more accommodating people are, the less stress.  Somehow- less stress = less flaring.  

For activities and being normal again, I would say do what you can when you can.  I used to be on the Triathlon team in college. UC hit- and boom I'm off the team.  One thing I did, though was stay in the group and became the bike mechanic and transition coach.  There's always a way to stay involved with the things you love.  "Those that can't do, teach."  And sometimes you have to accept that your body says, "Hold up- time to go..." With that I'm always prepared.  I keep TP in my briefcase- formerly my backpack.  They sell bio-degradable stuff at Wal-Mart in the camping section.  Perfect.  

Last but not least, embrace it.  Don't get mad at it because there's nothing you can do but sleep well, rest up, and hit it hard the second you feel great.  Exercise is excellent.  Keep up with it and don't let a funk hit you.  If you can only bench 30 pounds and run for five minutes, so be it.  But always do something even if it's a walk around the block.  It'll keep your spirits up, trust me.  Remicade worked for me for a while until I had allergic reactions (like hay fever).  They're always going to be switching it up and it takes balls to man up and say "I'm going to be alright." Stay positive, keep your head up, and if you need support send me an e-mail.  ***@****

Cheers,
-Ben

[rosie424]

Great to hear what helps you.  I have ordered the book you mentioned so we can hopefully do this diet and hope my son doesn't grumble too much.  I think you are right about lactose but what about yogurt with proboitics.  I feel at the moment that if we go with the Remicade (inflixamab) as well as the diet and supplements we might have some success too.  It would horrible to think he may end up having to get a stoma at such a young age.

Thank you again for your help.

[Heavytreads]

When first diagnosed...I had to use meds also...it took sometime to get off of them...but eventually through diet and some trial and error...I did...the only thing about managing with diet, is when you do have a flare, it takes a little longer with diet for it to subside...but it always does...best thing is not to ignore it...
I have some other quick things that I have learned along the way that might be helpful...I stay away from milk...I use almond milk...also stay away from ingredients like cream, whey, msg, lactose and the only cheeses I truly have no issues with are Cheddar, Swiss, Parm, Jack and some others but I am very careful...
Also, it has helped me tremendously to take a food based Multi vitamin and a herb called Kombucha...being in tune with the immune system and taking immune boosting supplements has helped me with training a lot.
There are some other tips I have...if you are interested let me know....

[rosie424]

Hey thanks for that will look up that book.
The Omega 3 I have also considered from my research so it is good to see that someone has had some success.
My son has opted for the medication but I do worry that the side effects may be pretty horrible.
Thanks again.

[Heavytreads]

Check out the book Breaking the Vicious Cycle...it helps tremendously...from there you can branch out...I used this 12 years ago...now I run Marathons with no meds...there are a lot of things I have learned about managing this disease with diet along the way...but now I eat almost anything I want...and supplement with various natural things such as Omega 3, Food based probiotic vitamins, etc...