12yr old with crohns

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smiler01

Joined
Apr 5, 2011
Messages
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Hi all, My son was diagnose 6months ago with crohns after having symptoms for 2yrs...
He has crohns in his mouth and rectum and is having is 4th op tomorrow for another peri-anal fistula..
since his first op he has constantly had a pus discharge from his anus, which antibiotics don't clear up, he has to wear a pad everyday to soak this up..
just before a flare up the inside his mouth, his lips and cheeks swell to a stupid animated size...then a week later he is in agony down below, where he is crying in pain, can't sit or sleep...
the specialist does'nt seem to think a gluten, diary or sugar free diet will make any difference..
its all starting to get him down now...anyone else with the same seniario, I know this disease is unpredictable and everyone is different..but if anyone has similar story, your thoughts would be appreciated
xxx
 
Hi! Sorry to hear your son is going through all this pain and suffering. Please visit the parent sub forum here. Many people on that sub forum that are in your situation. Bucket loads of support from some very big hearted people.
Good luck to you and your son,
Michele
 
Hi Smiler and welcome! I am so sorry to hear about your son. My Crohn's affects my rectum, and I know how uncomfortable and painful it can be. However, I have not had any experience with a peri-anal fistula. I certainly hope he will get relief after tomorrow. Good luck and let us know how tomorrow goes!
 
welcome smiler! I'm so sorry about your son! I was diagnosed at the same age so I know how hard it can be. I hope you and your son stay strong, and hopefully this forum will help you a lot :)
Good luck!
 
Hi Smiler and welcome!

I'm so sorry to hear about your son's condition. The teenage years are hard enough without dealing with all of this on top of the usual teen angst!

Hope he is able to find some relief soon. Good luck with the op tomorrow. Please let us know how he is doing.

- Amy
 
Wow -he has it bad. The poor guy! Is he on any of the stronger meds like Remicade? Remicade is known to help heal fistulas. Or how about prednisone just to give him a break and hopfully feel better?

Good luck with the fistula surgery.
 
Hi Smiler and :welcome:

I'm so sorry to hear about your boy......:(

What medication other than antibiotics is your son on?

I was going to say the same thing as Joe, the biologics are known for healing perianal fistulas. Has the GI mentioned these at all?

I hope you stick around 'cause this is a fab place for support and info. Maybe you could give us a general idea as to where you are located, that way if there are others here in the same location they may be able to point you in the right direction to good docs and hospitals in your area.

I hope your son can find some relief very soon. Good luck and welcome aboard!

Take care, :hug:
Dusty
 
Do most kids see pediatric G I doc's? In my area, the adult md's WON'T see kids. Who diagnosed your son? I have had good luck, but there was a time in my past that a second opinion was a good choice. If you feel he is suffering, and something isn't right.........might not be a bad idea?
 
Sorry to hear about your son, I was diagnosed with Colitis at 8 and had my large intestine removed at age 9 after a year of being on parenteral nurition and lots of hospitalization...it took about 8 years for them to finalize the Crohns dx so I have some idea how it is for your son and as a parent now I know how hard it is when your child is ill with such a frustrating disease so I wish you much strength while you are going through this. What I wanted to respond to is that I was treated at a childrens hospital until I was 16 with intermittent stays at adult hospital in between (we didn't actually live in an area with a childrens hospital). If acess to a pediatric specialist or pediatric hospital is on option I would highly recommend it for both the medical expertise (drugs, doses in children etc...) and also for the psychological factor being treated by someone who treats other children or being hospitalized with other children was really helpful for me to reduce the feeling of being weird or abnormal or a freak (having a colostomy at 9 was a bit distressing)....also your son might meet other kids with similar problems that he could talk to.....hope this is helpful in some way.....all the best to you and your son.
 
Hi guys and thank you for your feedback, i must say it is nice to have others that know what my son is going through...you don't feel so alone and lost..
He had his operation on wednesday at the childrens hospital, which found 3 more fistula's and one large abcess...we just got home now, and he is doing ok, alot more comfortable now...
The GI specialist wants to start him on meds now, either Infliximab or Azathoprine, one is a older drug taken everyday, the other is fairly new given by infustion 3 times over a 3 month period which should last for 8 months...both have side effects...one of which is they can mess with yr bone marrow, although he would be closely monitored :frown:
we have a week think about which one to start..Ihave a friend who is a nurse who is getting me the info on each drug...if any of you guys have tried them would love your thoughts.
Hope you are all doing ok, xxx
 
I had a peri anal abcess with 3 fistulas. They drained 500mls of puss in emergency surgery! Ive been on Azathioprine and Inmfliximab and steroids etc. I STRONGLY STRONGLY reccomend trying an Elemenal diet. Within 2 weeks all my bottom pain had gone, and one of my fistulas fully healed. If he can manage without food for at least 2 weeks, i promise the difference will be amazing. I'm currently on the Elemental diet myself to keep my abcess at bay, i have been on it for almost 2 years straight.
Good luck with everything.
 
thanks vicky, is that the diet where all food is eliminated for 6 weeks and you just have a shake type drink...
you have been on it for 2years!!! wow you poor thing, i seen the pain my son was in, glad you have relief now,
The GI specialist did mention this diet, but he did'nt think it would be helpful to my son, but i really think it is worth a shot before doin meds, I hate meds, they help one thing but upset another.
what are your feelings on those two drugs??
xxx
ps great name vicky odd socks lol
 
Welcome Smiler!! There is a Remicade club (same as infliximab) under the Treatment section. Most have had their lives given back to them with it. There are others of course for whom it has failed. I don't think Vicky means she's been on the shakes for two years:). After a certain period of time on the shakes, you slowly introduce other foods back in.
 
Hi there. I have perianal abscess and fistula as well, although not that bad I think. You can read my story I posted to find out more. I'm going to start on remicade in a week. I'll let you know if that fixes the problem I've had with the drainage for the past year.

:) Tell your son to stay strong, and maybe seek a therapist or a psychologist for the phsycological effects of this disease, I'm certain I would be very depressed if I were him. He is so young. :(
 
Dexky said:
I don't think Vicky means she's been on the shakes for two years:). After a certain period of time on the shakes, you slowly introduce other foods back in.
Click to expand...

I HAVE!! lol! I started on the 1st of June 2009. To my consultants knowledge i am the longest someone has ever been on it! Thats how well it works! I even ran a half marathon last year! PLEASE give it a go! I think it works just as well, if not better than any meds ive been on. I managed to stop ALL my meds for the past year :)
Good luck!
 
Yup, ive eaten odd bits at christmas, but thats all!
It gave me my life back. Without wanting to bore everyone, and preech, but i wish everyone with crohns would try it, especially those with fistulas. Its totally worth it. :D
 
hey vicky,
my son would like to know what these shakes taste like, how many times a day you take them, do you feel hungry all the time on them, do you lose to much weight on these shakes, and is it hard to stick to the shakes??
Thanks vicky, i would really like to give this a go, just need the young fella to get his head round it first x
 
Aw your poor son!
Just to give another opinion on the elemental diet - I thought it was awful!
I went on it when I was about 10 and they taste absolutely disgusting! (maybe they've had taste advancements in 9 years though aha) They are so creamy and gross which I didn't want when I was so so poorly. I couldn't get them down and kept throwing them back up so I had a feeding tube for another 6 weeks. Also, they made my inflammation levels worse and I had to be hospitalised after it for 3 weeks and put on a really high dose of steroids for about 6 months.
Although, it may work better depending where the Crohn's is...

Mine is in my ilium and small intestine so maybe it doesn't have a good effect where mine is.

I'm on azathioprine and its amazing :) my mum has Crohn's colitis and it's worked for her too! And don't be worried about the side effects too much. When I'm well on aza I can pretty much forget I have an illness.
I really hope your son gets all the help and treatment he needs!
Lots of love
xxxxxxx
 
With the liquid diet, I would recommend modulen. It is like a milk drink and you add a powder to water and shake it up, it does not taste particularly nice but you can add flavourings to it, I add nesquik chocolate milk falvouring, you can add other kinds too. I started modulen a week ago and the results are incredible, my energy levels are up and I have had no abdominal pain. I admit I do not know what fistulas are.. I only heard of crohn's a few months ago and I know that it really varies so I am not sure if modulen is suitable but it is designed to give the gut 'a rest'. I am 15 and although my friends and family have had little sips of the drink and find it disgusting I really am starting to like it! I am on it for 6 weeks and missing food is awful, I leave when people eat but I miss mealtimes so now sit at the end of the table so I can't smell the food but still join in. I hope this is of some help to you! :)
 
Oh and they give you your dose of it based on your weight and you gain weight on it. I have 1950mls a day and spread it out like this; 400ml breakfast, 250ml snack, 400ml lunch, 250ml snack, 400ml dinner and then a final 250ml snack. When you first start it it really fills you up but now I manage 1950ml easily. You just have to try it to see if you like it, some can manage but other's find it unbearable, I think you have to like milk to like it, but it is still quite different to milk. I am allowed clear hardboiled sweets, mints and chewing gum also and you can freeze it into ice lollies so it can be like eating, as I said before I have been on it for a week now and already gained 2kg which is good because I lost quite a lot. :) really would recommend a liquid diet but as you can see from above it doesn't work for everyone, but when it does the success rate is very good!
 
Hi Smiler01,
My story with the Elemental started when i was 17 and it was strongly recommended that i have an ileostomy due to my rectal abcess and fistulas. I obviously didnt like the idea of that at such a young age, and thats when they mentioned the Elemental. I was not hopeful, and resented having to do it, but i was willing to 'give it a go' in the face of an ileostomy.

I really didnt like them at first, it took me at least an hour to drink one carton and i had to have 9 a day (bearing in mind i weighed about 11 and a half stone - the ammount is calculated on your weight, so i imagine your son will have less).
I found the taste pretty gross at first, but after the first couple of days i was begining to like them and WANT them. Now, i could happily drink one a minute - i LOVE them! And have been known to drink them voulentarily when i havnt needed to! :)
In terms of sticking to them, it is hard. But in the face of all your son has had to go through, he may find not eating easy in comparison of the pain a rectal abcces brings! After my first initial couple of weeks on the elemental i can honestly say i was a TOTALLY different person!! Even my surgeon and doctor couldnt believe the difference, i had a no pain and no discharge and the fistulas started to heal. So for me the difficulty of not eating was FAR FAR outweighed by gaining my life back, so i just got on with it. The same as now, i know what the alternative is so i can quite happily not eat because i get to experence a million other things i wouldnt if i was eating. Maybe it helped me because id been house bound throughout the age of 16 and 17 so i knew what the alternative was.
I also managed to get off all my meds, i was on a maintanence dose of Remicade for years, azathioprine, steroids, pentasa, others i cant remember, you name it, i tried it. Nothing worked nearly half as well as the elemental did for me, with NO SIDE EFFECTS!

I really do think its something you should consider, if your son can manage 2 weeks and finds no improvement id be extreamly suprised. I think its worth a go, and im sure hes willing to try anything by now! Please let me know how you get on with it, if theres any questions please feel free to PM me :)
Completely unrelated to the Elemental diet, im having a permanent ileostomy this Thursday. The reasons for which are because i have strictures that are un fixable (and largely due to previous surgery and Remicade), and of course the problems i had in the past with my abcess and fistulas arnt worth the risk of reconnecting my intestine. But i can say without a shodow of a doubt, if it wasnt for the elemental diet i would have had the surgery back when i was 17, and im so so so greatful the the elemental gave me these years of health (I'm 25 now). If i could go back i would have gone on it as soon as i got diagnosed!
I hate seeming 'preechy' about it, but i had such astonishing results, i wish i could get everyone to try it! lol! Its so so worth it!

Vicky

P.s you do get a bit hungry for the first couple of days but after that your stomach adjusts, and i get full after one carton! :D
 
butterfly said:
Hi there. I have perianal abscess and fistula as well, although not that bad I think. You can read my story I posted to find out more. I'm going to start on remicade in a week. I'll let you know if that fixes the problem I've had with the drainage for the past year.

:) Tell your son to stay strong, and maybe seek a therapist or a psychologist for the phsycological effects of this disease, I'm certain I would be very depressed if I were him. He is so young. :(
Click to expand...

Thank you, that would be great if you could let us know if you get any relief..I really hope you do, and yes i think thats a great idea about a councellor, he is getting really down with it, x
 
vickyhunter, charlotteee and vickyoddsocks, thanks for your feedback girls, Brian (my son) has been reading all your replies, they have been really really helpful to him, he is still in pain even after the op, and has decided to give the elemental diet a go for 2 weeks to see if that works for him, if it does'nt he wants to give the meds a go...thank you all so much, will let you know how he gets on with it all xxx
 

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