Newbie

[Wendles]

Hi guys been reading yiur stories for a while now and have finally joined my son was diagnosed in may with crohns after having bouts of vomiting and pain since the start of the year , we got diagnosed fairly quickly thank goodness. Had the colonoscopy and endoscopy he has ulcers down his digestive tract and inflammation of the small bowel. He has been on predisolone and is currently taking imuran 75mg this seems to be doing some good as the vomiting has subsided abd the pain nowhere near as bad . He does still have pain ( I think this is when he has eaten something he shouldn't) he is on a high protein low fibre diet and takes Ensure drinks three times a day . He is 12 years old abd weighs 32kg. He is anaemic and we are having trouble with iron tablets I'm now scared to give him any as they always upset him. Anyone have any ideas?? Should he be taking any vitamins ?? No one has ever mentioned this ? We will see his dietician again tomorrow. I juice for him every night includes fruit and veg. Trying to stay strong he's a good little kid. That's our story look forward to chatting

 

[Angela and Rylee]

Hello wendles, i just read your story i am new to all this to, it is all so daunting.. my daughter has just been diagnosed with Crohns, she hasnt started treatment yet.. she has just turned 13 last week.. I dont know where to start with the diet and vitamins either, we have an appointment on thursday with our doctor so hopefully he will start treatment and dietician for Rylee.. i hope you dont mine if a tag along with your post so i can learn about these also?? Ange

 

[Hope345]

Wendles,

glad you found this site. you will find great support and lots of information. It is so overwhelming trying to take it all in and stay strong for your child.

Does he get nauseated even when the iron is taken with food? It is good you are seeing the dietician, hopefully she/he can offer some ideas too. Our daughter had 3 iron infusions because she was so anemic and they helped too.

Angela and Rylee: welcome to you too. I hope the treatment she has started works for her.

Our 14 year old daughter was diagnosed with Crohns 1 1/2 years ago and has now been in remission for 3 months. For her it took 7 doses of Remicade and we had to double it to get her Crohns under control. It was a long year with lots of pain and bleeding, but we finally found what worked for her. I hope you find the meds that are going to work for your children soon that will put them in remission.

 

[Wendles]

Hello wendles, i just read your story i am new to all this to, it is all so daunting.. my daughter has just been diagnosed with Crohns, she hasnt started treatment yet.. she has just turned 13 last week.. I dont know where to start with the diet and vitamins either, we have an appointment on thursday with our doctor so hopefully he will start treatment and dietician for Rylee.. i hope you dont mine if a tag along with your post so i can learn about these also?? Ange

hi Angela and rylee it is very daunting this horrible disease also I only joined last night so I hope I'm doing all of this right our dietician has got us on a low fibre high protein diet we have just come off predisolone and Trent is currently taking imuran 75 mg which seems to be working ( thank goodness) he does still get pain but nothing Panadol can't take care of. We still don't know too much about crohns but slowly everyday I learn something new. I am constantly looking new things up and read a lot on this sight. It has all been so scary but finally I'm starting to feel a little less anxious. At the moment I'm constantly giving Trent bits of food and drinks through out the day he has put on 2 kg since he was diagnosed just waiting for him to grow now. The diagnoses at the start is horrible but believe me it does get easier the more you know . Trent has a great doctor at the royal children's and a great local doctor who does anything to help if he can they have both been great . I hope you and rylee are happy with your doctor it makes a world of difference . Do try to see a dietician as soon as possible they are great abd will set you on the right track. The drugs they have to take are quite scary but as a friend said to me after reading about imuran it is only a slight chance that anything bad can come out of them . I hope I'm not scaring you if you have any questions please ask as I'm new too and really could have used someone to ask about things ( before reading the worst on the Internet!!!!!) would live to hear from you and best wishes and big hugs to you both , Wendy

 

[Wendles]

Wendles,

glad you found this site. you will find great support and lots of information. It is so overwhelming trying to take it all in and stay strong for your child.

Does he get nauseated even when the iron is taken with food? It is good you are seeing the dietician, hopefully she/he can offer some ideas too. Our daughter had 3 iron infusions because she was so anemic and they helped too.

Angela and Rylee: welcome to you too. I hope the treatment she has started works for her.

Our 14 year old daughter was diagnosed with Crohns 1 1/2 years ago and has now been in remission for 3 months. For her it took 7 doses of Remicade and we had to double it to get her Crohns under control. It was a long year with lots of pain and bleeding, but we finally found what worked for her. I hope you find the meds that are going to work for your children soon that will put them in remission.

Hi Julie thanks for your support how did your daughter go with the iron Iv?? My doctor told me straight out worst case scenario if what could happen and that put me off right away I am currently looking at a product called Spatone it is meant to be a much easier iron suplement( no constipation) he wasn't sickwith the iron tablets but constipated which caused the pain too . Trent has never really had diahhorea he has leaned more towards constipation. Will try the Spatone as suggested by his dietician otherwise Iv hope things are all well your end thanks again Wendy

 

[Hope345]

Our daughter did very well with the iron infusions. Of course it takes a couple months for the iron to really get those red blood cells back to normal again. I told myself that we would keep up with the iron any time she is in a flare because those infusions were about $1200 a piece (x3).

She too tends to be more constipated and has not had to deal with diarrhea either. She was on Imurlax everyday as well, and now uses mineral oil: both are very mild. Other meds for constipation seemed to aggravate her flare ups. Hope the Spatone works much better for him.

sending my best to you and your son

 

[Clash]

Welcome to the forum, Wendles! And Angie and Rylee.

Wendles you asked about vitamins. Crohnies tend to be vitamin deficient since malabsorption is an issue due to the inflammation.

It is a good idea to get vitamin levels checked. Some of the ones that are affected by CD are B12, Vitamin D, zinc, folic acid and magnesium(although the magnesium test isn't the most accurate).

My son was very low in Vitamin D and now has to supplement. His CD is located in his TI and this is the area that the most Vitamin D is absorbed. It has been a slow process getting his level up.

 

[Wendles]

Welcome to the forum, Wendles! And Angie and Rylee.

Wendles you asked about vitamins. Crohnies tend to be vitamin deficient since malabsorption is an issue due to the inflammation.

It is a good idea to get vitamin levels checked. Some of the ones that are affected by CD are B12, Vitamin D, zinc, folic acid and magnesium(although the magnesium test isn't the most accurate).

My son was very low in Vitamin D and now has to supplement. His CD is located in his TI and this is the area that the most Vitamin D is absorbed. It has been a slow process getting his level up.

Hi clash, thanks for the information will definitely get these checked as all they have told me about is his iron. Trying to sort everything out but never know if I'm doing the right thing so I just keep trying thanks for responding hope all is well you end , Wendy

 

[Wendles]

Our daughter did very well with the iron infusions. Of course it takes a couple months for the iron to really get those red blood cells back to normal again. I told myself that we would keep up with the iron any time she is in a flare because those infusions were about $1200 a piece (x3).

She too tends to be more constipated and has not had to deal with diarrhea either. She was on Imurlax everyday as well, and now uses mineral oil: both are very mild. Other meds for constipation seemed to aggravate her flare ups. Hope the Spatone works much better for him.

sending my best to you and your son

Hi hope345, thanks for responding it seems like the Iv might be the best way to go will get spatone going for now and when we see his doctor again I will ask him . Gee they are very expensive over there I'm pretty sure our Medicare system will cover it but will check it out , doesn't matter anyhow as long as he is feeling good . Hope your daughter is doing great thank you and best wishes to you both too!!!! Wendy

 

[Angela and Rylee]

Hey wendles, im still stressing about everything she eats and drinks, luckily she loves water so at least she is hydrated i suspose.. but when were in hospital for the cameras she was severly dehydrate because she was so sick and couldnt stomach anything and needed a drip that was horrible, cause they couldnt find a vein and they had 6 tries in the end until they finally got one.. Rylee has lost 19kg to date, and im hoping when she starts treatment she will stop losing weight and put some back on..I rang Rylee's GI yesterday as she could barely walk as her joints are all swollen and inflamed, he told me to get over the counter panadine, which helps for about an hour then she has to wait until she can have some more.. I used wheat packs and sit here massaging her fingers and toes to help.. Im going to call our Gi again on tuesday for her results of her MRI he said she should then be able to start on Azathioprine but he doesnt think that will work but she has to have it for her to start on Infliximab Infusion the side affects of them scare me, but i don't know what else to do but try it.. Do you know if they test her for what vitimins she is lacking in so she can take them?? apparently the Gi we have is very good, so i am hoping he will help Rylee.. i cant wait till we see a dietician to find out exactly what she cant have so we can work on the things she can.. At the moment it is a waiting game for everything to start happening.. Im loving this site but, there is some great advice on here.. that can help us all.. Take care.. Angie

 

[Angela and Rylee]

Hey Wendles does your son have healthcare card?? the social worker at the hospital told me Rylee is because she has a chronic illness?? She said that nearly all treatment should be covered by it?? I phoned centrelink on thursday and am waiting for the paper.. Please dont answer if this is to private.. Angie

 

[Wendles]

Hey Wendles does your son have healthcare card?? the social worker at the hospital told me Rylee is because she has a chronic illness?? She said that nearly all treatment should be covered by it?? I phoned centrelink on thursday and am waiting for the paper.. Please dont answer if this is to private.. Angie

Hi Angie, no I haven't been told about this gee it would be great for all his tablets etc will definitely find out thank you so much With our dietician Medicare will cover 5 visits a year so make sure you check that out too. hope rylee is doing well chat again soon keep me updated on how things go Wendy

 

[Clash]

Angie and Rylee, Has your GI mention EIMs(extra intestinal manifestations) of Crohns? There are certain other issues that can go hand and hand with a CD flare or run independently of a flare. Joint pain is one of those EIMs and seeing a pediatric rheumatologist will help to get to the bottom of which type of joint pain EIM it is.

Eye problems is another, some eye problems are severe like Uveitis and others less severe like Episcleritis. So if you feel her joint pain it causing her any issues you may want to se the Ped rheumy. Many kids on here with CD also see a ped rheumy or ophthalmologist for EIMs of the joints or eyes.

You can get more info about EIMs by using it as the key word on the forum search bar. Dusty had a great PowerPoint on it I think and MLP also had some great info, maybe they will be along shortly.

 

[Wendles]

Hey wendles, im still stressing about everything she eats and drinks, luckily she loves water so at least she is hydrated i suspose.. but when were in hospital for the cameras she was severly dehydrate because she was so sick and couldnt stomach anything and needed a drip that was horrible, cause they couldnt find a vein and they had 6 tries in the end until they finally got one.. Rylee has lost 19kg to date, and im hoping when she starts treatment she will stop losing weight and put some back on..I rang Rylee's GI yesterday as she could barely walk as her joints are all swollen and inflamed, he told me to get over the counter panadine, which helps for about an hour then she has to wait until she can have some more.. I used wheat packs and sit here massaging her fingers and toes to help.. Im going to call our Gi again on tuesday for her results of her MRI he said she should then be able to start on Azathioprine but he doesnt think that will work but she has to have it for her to start on Infliximab Infusion the side affects of them scare me, but i don't know what else to do but try it.. Do you know if they test her for what vitimins she is lacking in so she can take them?? apparently the Gi we have is very good, so i am hoping he will help Rylee.. i cant wait till we see a dietician to find out exactly what she cant have so we can work on the things she can.. At the moment it is a waiting game for everything to start happening.. Im loving this site but, there is some great advice on here.. that can help us all.. Take care.. Angie

Hi Angie , poor rylee they do seem to go through so much before they get any better. Trent is on the azathioprine 75 mg and is doing well it does take a while to kick in he started off on predisolone and is finally off it. It is all so hard and scary but once they get her medication right things will get better Trent never had the joint pain they all are so different . The dietician will be able to help heaps ours is great. This site is great as everyone is so helpful and caring I have only been told that trent is anaemic so I will ask the doctor next time if any vitamins will help. Take care hope rylee feels better soon Wendy

 

[Wendles]

Hi Angie , poor rylee they do seem to go through so much before they get any better. Trent is on the azathioprine 75 mg and is doing well it does take a while to kick in he started off on predisolone and is finally off it. It is all so hard and scary but once they get her medication right things will get better Trent never had the joint pain they all are so different . The dietician will be able to help heaps ours is great. This site is great as everyone is so helpful and caring I have only been told that trent is anaemic so I will ask the doctor next time if any vitamins will help. Take care hope rylee feels better soon Wendy

Hey Angie Trent takes a drink called ensure his dietician recommended it he has put on 2 kg so far ( he only lost 2 kg though we got diagnosed pretty quick) look it up on the Internet and ask your dietician about it Trent only liked the vanilla with Cadbury drinking chocolate to flavor ( he didn't like the Choc flavor one ) just a thought , Wendy

 

[DustyKat]

This is the powerpoint that Clash is referring to:

https://louisville.edu/medschool/gimedicine/division-lecture-files/briley-lectures/Briley%20-%20Extraintestinal%20IBD%20Manifestations%206-2010.pdf

This is also a very good article that provides an overview of EIM's associated with IBD:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3127025/

Dusty.

 

[Hope345]

Wendles,

let me know how your son does with the iron infusions. It makes such a difference when their iron is low. Our daughter was so pale with dark circles all the time.

It can take a while but you will find all the right treatments that will work.
talk soon
Julie

 

[Wendles]

Wendles,

let me know how your son does with the iron infusions. It makes such a difference when their iron is low. Our daughter was so pale with dark circles all the time.

It can take a while but you will find all the right treatments that will work.
talk soon
Julie

thanks Julie it is all so stressing Its great having feedback from someone who has been tackling this longer than I you do give me hope wendy

 

[Angela and Rylee]

Hey Angie Trent takes a drink called ensure his dietician recommended it he has put on 2 kg so far ( he only lost 2 kg though we got diagnosed pretty quick) look it up on the Internet and ask your dietician about it Trent only liked the vanilla with Cadbury drinking chocolate to flavor ( he didn't like the Choc flavor one ) just a thought , Wendy

Hi Wendy, sorry I havent been on for a few days cause out house flooded and we are living in a motel.. it has just been a nightmare.. we found out results from Rylees MRI, he said the area that is serverly ulcerated probably wont react to meds.. he was talking about surgery, but is getting another doctor to look at it also for a second opinion.. and the fistulas and also not good, they have connected on to other parts of her intestine.. we have another app tomorrow to talk the GI more about it cause it was only a phone call yesterday.. I am trying to sit down and write all the questions down I want to ask but I dont know what to write.. Im sorry if this doesnt make sense beause im on my phone and feeling alittle down.. Angie

 

[Wendles]

Hi Wendy, sorry I havent been on for a few days cause out house flooded and we are living in a motel.. it has just been a nightmare.. we found out results from Rylees MRI, he said the area that is serverly ulcerated probably wont react to meds.. he was talking about surgery, but is getting another doctor to look at it also for a second opinion.. and the fistulas and also not good, they have connected on to other parts of her intestine.. we have another app tomorrow to talk the GI more about it cause it was only a phone call yesterday.. I am trying to sit down and write all the questions down I want to ask but I dont know what to write.. Im sorry if this doesnt make sense beause im on my phone and feeling alittle down.. Angie

Hi Angie what a shame this all has to happen now I'm glad your getting a second opinion it will make you feel better. I hope rylee is feeling a bit better.trent hasn't had his MRI yet we go in aug 19 th they couldn't get the colonoscopy tube through as it was too swollen he is feeling a lot better on the meds though which I think is a good sign. I hope things went well today with the doctor let me know when you can how it went . Post all of your questions on here there is heaps of help and so many people know a lot more than me . I hope the house isn't too badly damaged and rylee can get back to her own bed soon . My thoughts are with you chin up it can only get better Wendy x x

 

[Angela and Rylee]

Hey wendy, doc visit went better than expected, our GI and second opinon doc came back with no surgery at present and she starts on inflimax infusion on Saturday and aza also, it has made us feel abit better.. rylee must have similar to trent with the ulcerated area because they couldnt use the camera in one area as it was swollen.. two of the fistulas are connected up with other parts of her intestine and doc said theywill hopefully heal from having infusions.. I walked in today with my list and he was great at answering all the questions I had.. thats great Trent is feeling better, it is so stressful this disease.. I bought some Ensure today I hope Rylee can drink it.. she is still the same in herself, and really depressed hasnt attended school for 5 week because she is too sick, we have an appointment with a phycologist next week for her, so hopefully that will help.. how is Trent going with dealing with having Crohn's?? Angie

 

[Wendles]

Hey wendy, doc visit went better than expected, our GI and second opinon doc came back with no surgery at present and she starts on inflimax infusion on Saturday and aza also, it has made us feel abit better.. rylee must have similar to trent with the ulcerated area because they couldnt use the camera in one area as it was swollen.. two of the fistulas are connected up with other parts of her intestine and doc said theywill hopefully heal from having infusions.. I walked in today with my list and he was great at answering all the questions I had.. thats great Trent is feeling better, it is so stressful this disease.. I bought some Ensure today I hope Rylee can drink it.. she is still the same in herself, and really depressed hasnt attended school for 5 week because she is too sick, we have an appointment with a phycologist next week for her, so hopefully that will help.. how is Trent going with dealing with having Crohn's?? Angie

Hi Angie oh that's good news I was thinking about you all last night wondering how you went I'm glad your happier and got that second opinion. Trent is not to bad (depression wise) he does get upset easily but he always has . I'm not looking forward to his MRI we mix Trent's ensure with drinking chocolate or strawberry quik he actually likes it better and he knows it's helping abd also giving his body a rest from digestion . Trent hasn't had to have a lot if time off school thank goodness he is in grade 6 so off to high school next year . He has his fortnightly blood test tonight abd always ends up with me giving him money ( I hate taking him) I'm so glad with your news all up from here best wishes to you both abd keep me updated Wendy