My son has crohns

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

charmainexx

charmainexx

Joined
Oct 18, 2012
Messages
7
My son (12 yrs) was diagnosed with crohns in December 2011 and he's been on pentasa 3 tabs a day. He's not coping with it a tall and has a lot of stress and anxiety and not going to school alot. He keeps waking through the night and has the urge to go to the toilet about 4 times but and about 8 times through the day but doesn't actually go. Is anyone else experencing this with their child with the urge to go to the toilet all the time. His doctor has said he can have a full diet but I've been reading up and people say they can only eat certain things I'm just really confused. He's hasn't grown in the past year and his really tired and very white he has to go in for a gastroscopy and colonoscopy next week. I am a single parent and noone really to talk to regarding this as I don't know much about this illness. Can anyone give me any advice?
 
So sorry to hear about your son! It's so hard helping them deal with this. We don't have experience with Pentasa, but it sounds like it's just plain not working for him. The results from the scopes next week will tell you more and the doctor will advise you what action to take. My son doesn't have issues of feeling the urge to go without going, could be a stricture. Lots of people on the board here recommend Enteral nutrition. Speak with a nurse at your doctor's office about that and maybe using a stool softener, or see whatever other advice they can give. Best of luck! <hug>
 
When the rectum is inflamed the urge to go usually starts.
That is what happened to DS .
Agree it doesn't sound like pentasa is working.
The scope should give the doc the info he needs.
DS was on pentasa for a month .
It did not work for him.
He then tried 6-mp.
He was dx last sept and is 8.
Good luck
 
So sorry to hear about your son.:(
I can't Imagen going though this by myself.
My heart goes out to you.
No real advice to add, just support.:)
Hang in there and welcome to the forum.:hug:
 
Hi, many thanks for your support and advice :) someone at work mentioned to join a support group online and now im glad I did (thankyou). Just finding it really hard watching my son go through this as we all are. Does anyone know if certain foods make the condition worse? He has just finished a course of Prednisolone and for the first week he was feeling better then he caught flu and the symtoms started again. But glad I came on here thankyou:)
 
Hi Charmaine, you will find a lot of support on here. I found it invaluable when my son was diagnosed in August 2011 aged 12. Matt was on pentasa but he had a rare bad reaction to it experiencing complete loss of appetite and vertigo, so they took him off it. The colonoscopy and gastroscopy next week will show them what is going on inside and help them to decide if the pentasa is helping or if some other meds are needed. Read everything you can find, knowledge is power with this disease, there is lots of info on here. Ask lots of questions as well and never allow yourself to be fobbed off, you are your sons advocate in this situation. I hope you get some answers soon and he starts to feel better.
 
My daugter is on Pentasa (5 tabs per day) and Remicade every 6 weeks. Since school started in September her stress level rose and so did her symptoms. SImilar to your son, having the urge to go to the bathroom and nothing coming out. And at least 3 times during the night. This was very new to her. Even after her Remicade infusion the symptoms were still present when before the Remicade cleared everything up. Her GI doc just raised her dose this last infusion. She tells me now this is the best she has felt in a very long time. I'm just wondering if your son may need another medication to get control of his symptoms. Good Luck
 
Hi and welcome to the forum. Sorry to hear about your son! It is very difficult watching them suffer. My son was diagnosed last year (age 12) after about a year and a half of trying to find out what was wrong.
If your son is still suffering then it sounds like the medication he is taking isn't doing the trick and it's time for something different. The medication part of the forum is great and has lots of information.
I'm assuming his doctors agree that the meds aren't working if they are going to be doing the colonoscopy, etc next week. At least then you will know for sure what's happening so that he can then try a different med that will hopefully get him back to enjoying life!! Good luck.
 
Hi charmainexx and :welcome:

I am so very sorry to hear about your boy...:hug:...and of all you are both going through.

My children have not had the urgency issues that your boy is experiencing but as mlp has suggested it may be due to inflammation and since your son appears to be not responding to treatment this may well be on the cards.

Where is your boy's Crohn's located?

When were his bloods last done?

Do you know what his bloods results are showing?
Particularly his inflammatory markers (ESR and CRP) and his haemoglobin.

If he has not had any done recently I would request the following be done very soon:

FBC (Full Blood Count)
LFT's (Liver Function Tests)
UEC's (Urea, Electrolytes, Creatinine)
B12
Iron Studies
Folate
Vitamin D
ESR
CRP
and if they will come to the party, faecal calprotectin

What is of concern is your son's failure to grow in the last 12 months. Chronic inflammation can affect a child's ability to grow and develop whilst ever it is present so it is good to hear they are making moves to see what is going on next week. :) They really do need to keep on top of it.

Request copies of the results of all blood tests, scopes, imaging and so on. Doing so allows you double check that what you are being told is accurate and it also allows you track your son's progress independent of anyone else.

EEN (Exclusive Enteral Nutrition) is a very viable alternative to Prednisone when dealing with flares. Was your son given this initially?
It will provide him with all the nutrition he requires as well as allowing the bowel to rest and heal.

As to diet in the long term? Well it can be a very individual thing, what suits some is horrendous for others. It really is trial an error for the most part when it comes to individual foods just like it is for those without Crohn's, most of us have at least one food, if not more, that doesn't agree with them. I personally believe the best approach is to eat as process free and organically as is possible.

Good luck with the scopes next week! I hope it gives you solid answers and a treatment plan that brings your boy long and lasting relief.

Dusty. xxx
 
Just wanted to send my support your way.
My daughter was diagnosed June this year. It does take time to figure out the things that will work for your child we are still in the early stages with finding the right medication.
Regarding food I tend to let my daughter decide what she feels like and if something doesn't sit right, chocolate is a big no no, we cut it out. Her body tends to tell her what she wants. Though I do try to avoid popcorn and grainy type foods as I read a lot that these can cause problems.
It's a bit trial and error but you'll get there. This forum is greàt x
 
Hi and welcome. This is a great forum for support. Your son should not have to feel this bad - hopefully they will try other medications. The list of tests recommended by Dusty is important ... as well as saving copies of the results.
 
Hi Charmaine,
( I liked typing that name, so pretty).
Welcome to Suckville, sorry you're here.
Mayor Dusty gave excellent advice.

As you're in the UK I would think your boy's doc shall recommend enteral nutrition. I would take advantage of its benefits asap.
Violet's doc is a big fan of it though here in USA it is far less commonly prescribed, sadly.
He's also big on nutrition and thinks it is an underaddressed issue in this pt population. I do too after reading on these forums, so many undernourished/underdeveloped kids, delayed puberty and far underweight seems to be almost accepted as par for the course.
It's very difficult for these kids to get the nutrition they need via food alone as much is malabsorbed.

To that end, V's been on formula feeds at night since diagnosis and her growth/development have not been impeded DESPITE ACTIVE DISEASE all along.
Her stats to encourage you to use EN:
before dx: (age 10) 55in/78lbs
at dx after 7weeks of symptoms: 55in/59lbs That is life threatening degree of weight loss
3mos post-dx and 3mos on EN: 57.5in/99lbs. NO steroids, that was true body mass accrual, 40lbs and 2.5in in three months, 20lbs re-gain of losses and 20 more "catch-up" gain (she has quite a big frame, big bones, feet etc)
Yes I know that is unbelievable
At present, after 4yr on EN (plus eating a reg diet): 64.5in/142lbs

Her doc took her case to IBD bigwigs in Canada as her response to EN was so noteworthy and that she GREW while NOT IN remission. He said he had never seen such growth recovery in a kid not in remission.

So her case proves the efficacy of formula feeds, and refutes the notion that remission is required for growth/development to be on target.

Your boy has already lost a year of growth time likely due to the combined factors of inflammation inhibiting growth in and of itself and malnutrition secondary to malabsorption.

Sorry for the length, I so hope it helps you decide to use this excellent and adverse effect-free treatment.

Julie (who sounds like she has stock in Abbott; I don't. I just like kids to be well nourished dammit)
 
Second the EN .
DS was similar 50lbs for over two years from kindy to 2nd grade (dx)
Added EN last nov 2011.
He is now 69 lbs .
He was on pred for 5-6 months so growth is an issue but
We are hopeful considering the two to three months he was steroid free he did grow.
He still drinks 2-3 peptamen jr a day orally.
We were also one of the first to try EEN for our GI.
Learned about it here.
Good luck
 
thankyou for all your support and comments when my son was diagnosed in december he we was placed on modulen for 8 weeks and they gradually introduced the different food types and then he went on a full diet. He was placed on steriods a few weeks ago and now he has finished the course but he still has the urge to go to the toliet through the night and day. My son has been having blood tests regulary and they have been coming out as normal, these are the only tests that have been done recently Many Thanks dusty will speak to his doctor on Thursday and request if any other tests can be done. He isn't going to school at the moment as he's up most of the night just wish this would end. But a huge thankyou for everyone's support and advice xxx
 
hey there, my 9 yr old son was diag with Crohn's in August, he has just finished 7 weeks on EEN and he gained over a kilo in 5 weeks. I limit alot of things in his diet including popcorn, corn, grainy breads, nuts, seeds, vegie and fruit skins but I still have alot to learn. He is currently on a low fibre diet until we head back to the dr.

Best wishes and you will find alot of support here..keep posting x
 
Hi, Many Thanks for all your support and advice you have given me just been told that my son has got a flare up and they have now prescibed him steroids and also Azathioprine which he has to take for 2 years. Reading the information sheet for Azathioprine it can have quite a few side effects has any of your children had it and if so how were they on this medicine my son has got very upset and is worried about taken this?
 
Sorry about the flare.
He may or may not be on Aza for 2 years.
DS took 6-mp for 8 months . But it didn't really help.
The side effects are listed but just like any other drug you may or may not experience them.
DS had to stop. Since it was not working and his liver blood levels kept raising.
You just have to make sure they check his blood every two weeks at least for a few months to check ast / alt levels + WBC etc....
Good luck
 
Just wanted to wish your son luck with the Aza - hope it works well for him. I dont' have a lot of experience with it, my son was on it for 6 weeks but his liver function kept going up - having said that, he had no side effects he noticed while on it.
 
Jack was on it for 3 years except for a couple of months (he started taking it at 10yo). He was put on it right away along with prednisone directly after diagnosis we had bloodwork, promethus testing done about every 2 weeks for the first 3 months but were having a hard time reaching theraputic levels, liver function was always good but we just couldn't get to the right level so we tried methotrexate but he had a pretty severe reaction to it. So we went back to the azathioprine and dropped it down to the lowest dosage and added allipurinol. It was explained to me at the time why we were trying that - something about the allipurinol making the azathioprine more potent in the right spot. It worked really well for him and continued to work the only reason we stopped is we were given the option to try LDN which seems to be working as well. Hope the aza works, it really made a difference with Jack and he started feeling really well.
My husband has been on it for about 8 years now and no side effects. Hope he is feeling well.
 
Thankyou for all your support this has made me feel better. spoken to my son and he has agreed to try this but he's still very worried, but at least he's agreed to have it.
 
Hey charmaine,

Both of my children take Azathioprine. They were both a little older than your son when diagnosed and both were put into remission via surgery. Neither have had side effects from it.

I will just repeat what mlp has said...just ensure that bloods are monitored and at the outset that should be weekly.

Good luck!

Dusty. xxx
 
Hi my son has know started taken prednisolone and azathioprine for just over a week now and he still getting up through the night with the urge to go and not being able to. should he start to feel better by now or does it take a while for the med to start working?

No one is getting any sleep and he's already had a lot of time of school and just really can't handle seeing him like this. Please any advice would be great? but thankyou for the support from you all it really helps :)
 
The pred should start working soon. aza will take up to 4 -6 months to start working.

Sarah noticed improvement within a couple days but pain was her only symptom.
 
Hi Charmaine

I was diagnosed about 20 and i was put on asacol and preds. This cleared 90% of my bowel of inflammation, but when i was healing i was also feeling the urgency to go to the toilet and little or nothing was coming out. This is pretty normal. Sometimes at work id sit in the toilet most of the day straining and panicking to leave because i knew i would need the toilet.
I had no choice but to take 6 months off work, i had no stress and got back to full health. i didnt have the need to use the toilet all the time.
I would ask your doc about Asacol.
But your son will improve, it is a mixture of anxiety and inflammation.

Hope this helps
 
Hi, when my son started Aza we were told it could take up to 3 months to be working properly. Hopefully within a few weeks your son will be feeling better.
 
Hey Charmaine,

As has already been said, Azathioprine will take at least 3 months to become fully therapeutic. The idea of using the combination of steroids and Aza is that the steroid is fast acting and hopefully will get you boy into remission. As the steroids start to taper the Aza should be building up so by the time the steroids are finished the Aza can take over.

People do respond differently to steroids, some find dramatic results very quickly, for others it can take a week to two and yet for others they don't get much of a response at all. Most though have a noticeable response in the first couple of weeks.

When do you see the doc again?

Dusty. xxx
 
Hiya, I don't see his doctor until 05th January, managed to get him to school today but he's just really tired he was up most of the night on the toliet but nothing coming out. Will give the med some time to work but thanks for all your comments and support above. Just want him to feel better he's always been a well child and then suddenley this happens and he's finding it really hard to cope with.
 
Hi Charmaine,
It is really hard waiting for these meds to kick in!! My son was also started on Aza and pred. The pred should start to help soon and you will hopefully see an improvement each day (even if small). The aza (as has been said) takes awhile to kick in. Unfortunately the tiredness will probably continue till you get the crohn's under control (sometimes longer if they are significantly anemic). I know my son was sitting on the toilet for very long times waiting for something to happen. Hang in there mum, you are doing a great job under very trying circumstances. We have been there also and understand how you are feeling. Blessings to you both xx
 
So sorry to hear your boy is struggling with his Crohn's. When Lucy was taking prednisone it took about 2 weeks to start working and worked really well after that.
 
So sorry to hear.
Even once the inflammation goes down your child's Gi track has been "pushing" / working harder to get everything through so....
It sometimes takes a little extra time for the system to figure out it doesn't need to push so hard .
DS constantly had the feeling like he had to go .
6 weeks after starting remicade it finally stopped.
It is frustrating having to wait for meds to work.
But once they do it is soooo worth it.
 
I'm sorry to hear about your son. Crohns sucks... I empathize with you - my son is 19 and dx'd with Crohns a year ago. Im a single mom too. Dont worry, You can do it! My son had worsening diarrhea for 6 months, lost a considerable amout of weight and developed fissures. After a colonoscopy, He started on Entocort and did marginally better on that. I hesitated on more aggressive treatment until he got an abscessed fistula. At that point, after his surgery, doc convinced me that he should go on Imuran - so far it's helped him a lot physically (though his last colonoscopy showed ongoing inflammation - we have to deal with that next but for now physically he's ok). I know that fissures and inflammation can make that "end" feel an urgency when you don't have to go.

Things that have helped him - keeping a sense of humor, metamucil every morning, sitz baths (see sense of humor), belly shots probiotic juice, NO caffeine whatsoever, NO dairy, switched to almond milk. Eating becomes an issue for a lot of reasons - keeping him nourished is important - we never did anything extreme, he drinks supplements like ensure and I nag the crap out of him :) as long as his albumin level is ok, i would just keep focused on knowing his trigger foods, eating high value stuff and supplement orally whenever he'll accept it.

There is a large mental component to having disease - it's so hard for a teen with all their anxiety in general over life and fitting in and all that stuff. They are so strong to deal the way they do. My point of view - I took full advantage of having a teen boy - I went right for the butt humor and that was our way of him keeping me aware of all the "happenings" down there without being embarrassed. That way at least I knew and we could decide together how to deal with it or what was working or making things worse. Or when we needed the doctor. We've been on our Ass Watch 2012 campaign all year, and it helps keep things in perspective and helps us communicate....

Anyway best of luck and hang in there. The folks on this board are great for support and info.
 
theresad said:
I went right for the butt humor and that was our way of him keeping me aware of all the "happenings" down there without being embarrassed. That way at least I knew and we could decide together how to deal with it or what was working or making things worse. Or when we needed the doctor. We've been on our Ass Watch 2012 campaign all year, and it helps keep things in perspective and helps us communicate....

Anyway best of luck and hang in there. The folks on this board are great for support and info.
Click to expand...



With talk like that all I can say is....................................
WELCOME ABOARD!!!!!
:D
 

Similar threads

C
Jaw swelling,
Replies
9
Views
1K
asadmom
A
M
7 year old in pain not diagnosed
Replies
4
Views
1K
my little penguin
my little penguin
D
Waiting for Results
Replies
4
Views
979
DC23
D
C
Crohns help!
Replies
2
Views
1K
Opieshuffle13
O
D
What's the story with Flagyl
Replies
2
Views
1K
Pangolin
Pangolin

Latest posts

Back
Top