Son with Crohns

[Mel]

My 19 year old son has recently been diagnosed with an aggressive form of crohns (July 2010).

He had been at home with sickness and diarohea and having been to the docs twice and being told he had a virus, I finally took him to hospital. Because he had been unwell for a while, his potassium levels had dropped to a critical level and he was admitted and put on a drip. It was whilst he was waiting for the drip to take effect that he had some blood taken and sent off for tests.

Within the space of 24 hours we had gone from having a normal family live to having our lives turned upside down with his diagnosis. He was kept in hospital for 10 days and in that time he had lost over 2 stone (there wasn't much of him before!).

The consultant kept asking if there was any history in our family of Crohns (which there isn't), and because of this he couldn't understand why it was so aggressive.

Whilst in hospital he had an endoscopy and also a scan because the ulcers were so large they couldn't carry on with the camera.

His whole life has been turned upside down, mainly because at the moment he is too unwell to play/train for football and he is also signed off from work. This is really getting to him and I feel he is trying to run before he can walk.

Since coming home from his first time in hospital he has been taken in twice since with a suspected blood clot (which has now been ruled out) and also a racing heart beat and low blood pressure - we cannot get any answers as to whether this is related to the medication he is currently taking.

If anyone has any advice on how to cope or answers to the above, please get in contact.

 

[Rebecca85]

Hello and welcome to the forum! What medications is your son taking at the moment?

I know it's hard for your son, but he needs to try and rest and relax. Stress will make his symptoms worse. Having a Crohn's diagnosis is not the end of the world, even though it might feel like it for a young lad!

Have you checked out the parents' forum? There are many other parents on here that could give you some good advice!

 

[DustyKat]

Hi Mel and :welcome:

I'm so sorry your son is having to deal with this. Just a couple of questions, Where is the Crohns located and what medications is he taking? Is he on Prednisone??

There are quite a few of us here that have children with IBD so we can certainly understand what you are going through and how heartbreaking it is to see your son suffer with this. Please stick around and browse through the forums, there is also a forum here for Parents of kids with IBD.

http://www.crohnsforum.com/forumdisplay.php?f=49

This is a safe and friendly place with loads of info and support so welcome aboard and good luck!

Take care,
Dusty

 

[Crohn's 35]

:welcome: Mel, so sorry your son is dealing with this disease in such an agressive matter. Ulcerations are common, mine are in the Ileum and just had a scope and it has progressed. There is no rhyme or reason, and not everyone has relatives who have it, some are little as 6months or born with. Nothing he or anyone has done but dealing with it is priority. Being his age group they don't have the healthiest diet, and he may have to watch his diet as well, avoiding sugar and greasy fried foods. Stress is a major culprit for bringing on an aggrivated gut. Trial and error, and the meds make a difference too.

I see you are in the UK, we dont use stones in Canada or US, so we there are many from your area and will jump in to help.

What kind of meds is he on and when does he see a Gi next? Glad you are here!

 

[Crohns08]

There could be multiple causes of low blood pressure and a fast heart rate. First thing I would check is if he is anemic. If he is, you'll want to get some iron in him to help alleviate that. If I were you I would look into some diet changes and try to find some safe foods he can eat, and eat only those things for awhile. You might want to try different nutritional shakes to keep nutrients in him.

It's tough for him, I know, I'll be eighteen in a month and a half and it's been a rough two years. You should tell him to come frequent the forum, there's a wealth of beneficial information here.

 

[Astra]

Hi Mel
and welcome

Your head is probably racing with this, both of you!
It will take some time to adjust to this dx, so firstly try to relax, and secondly it can be managed.
But at the moment your son needs to rest for a few months to heal his inflammation and that means complete rest, no footy!
in time he will be back to some normality, it doesn't mean the end of everything that he does forever, it's just for now.
read the sections on the forum, ask him to join us, loads of young uns here for him, any questions, just fire away, always someone here.
Oh, and if his meds are Prednisolone, he will heal quickly with lots of energy, just needs a few weeks to kick in.
lotsa luv
Joan xxx

 

[Dexky]

Hi Mel, welcome!! I'm another parent of a chronie. You and he will learn to overcome this initial fear you have. It's something you'll just have to deal with. There's no other choice. If he is on pred., he will probably go through the weight gain and the moon face but it will probably put him into remission. Afterwards, he will most likely regain a fairly normal life and be put on a maintenance drug. There will be blood tests to protect against ill side effects of his meds. I wish you both good luck and I hope he can get into remission soon so he can get back to his life. His life may be altered but it doesn't mean it's over!! Hope you stick around!!

 

[Mel]

Thanks Mark. How quickly did your child start gaining weight through taking the medication? My son has been on steriods for the past 6 weeks and hasn't gained what I would class a significant amount of weight, only about 5lbs and considering what he is eating as well, I feel it should be a lot more!

 

[Dexky]

Hi Mel, EJ's steroid taper was only I think 8 weeks long total and he was ten at the time so there wasn't a great weight gain. It was the first time in months that he acted like a ten yr old though and he has had a very good year chrohnswise so far. I'm sure the dynamics are completely different for a 19 yr old. I won't pretend to know how pred could or should affect him but most of the users on here often speak of their love/hate relationship with it.

If he's already been on it for six weeks, I would have thought you would be seeing a significant difference by now. What dosage is he on? Has he begun to taper? And, sorry for all the questions, when does he see his GI next?

The others on here are far more knowledgeable than me. Joan (Astra), above me in your thread, has a lot of pred experience. I think she is going through a taper with it right now.

Please keep us posted on his progress Mel!!!

 

[Mel]

Hi Mel
and welcome

Your head is probably racing with this, both of you!
It will take some time to adjust to this dx, so firstly try to relax, and secondly it can be managed.
But at the moment your son needs to rest for a few months to heal his inflammation and that means complete rest, no footy!
in time he will be back to some normality, it doesn't mean the end of everything that he does forever, it's just for now.
read the sections on the forum, ask him to join us, loads of young uns here for him, any questions, just fire away, always someone here.
Oh, and if his meds are Prednisolone, he will heal quickly with lots of energy, just needs a few weeks to kick in.
lotsa luv
Joan xxx

Yes our heads are like mush!

Matts medication is Trimedon? Prednisolone (reducing dose), Pentasa. He is in Cornwall at the moment, having a change of scenery - hoping it will help! But I have told him about this site and he is keen to read when he gets home, I am sure he will be able to give more information as to how he is really feeling!

 

[Mel]

Hi Mel, EJ's steroid taper was only I think 8 weeks long total and he was ten at the time so there wasn't a great weight gain. It was the first time in months that he acted like a ten yr old though and he has had a very good year chrohnswise so far. I'm sure the dynamics are completely different for a 19 yr old. I won't pretend to know how pred could or should affect him but most of the users on here often speak of their love/hate relationship with it.

If he's already been on it for six weeks, I would have thought you would be seeing a significant difference by now. What dosage is he on? Has he begun to taper? And, sorry for all the questions, when does he see his GI next?

The others on here are far more knowledgeable than me. Joan (Astra), above me in your thread, has a lot of pred experience. I think she is going through a taper with it right now.


Please keep us posted on his progress Mel!!!

Matts medication is Trimedon? 3 per day, Prednisolone (reducing dose) started on 40 per day, now down to 15 per day, Pentasa 3 per day. He is in Cornwall at the moment, having a change of scenery - hoping it will help!#

Thanks for your replies, it has helped more than you may realise.

 

[Crohn's 35]

Hi Mel , could the drug be Tramadol? It is a fairly strong painkiller. Prednisone is a good way to catch flares fast,Pentasa works in the Ileum to reduce inflammation, so when he tapers hopefully the Pentasa should hold. Good mild choice. 40mgis the norm for Prednisone and can cause him to not sleep. Getting his blood work done is a good idea to catch his b12 and potassium. He will need to be on good calcium supplements and Vitamin D3, Magnesium citrate helps to absorb and keep his bones healthy! Would be good to see him on here. Good luck!

 

[Mel]

Hello and welcome to the forum! What medications is your son taking at the moment?

I know it's hard for your son, but he needs to try and rest and relax. Stress will make his symptoms worse. Having a Crohn's diagnosis is not the end of the world, even though it might feel like it for a young lad!

Have you checked out the parents' forum? There are many other parents on here that could give you some good advice!

Matts medication is Trimedon? 3 per day, Prednisolone (reducing dose) started on 40 per day, now down to 15 per day, Pentasa 3 per day. He is in Cornwall at the moment, having a change of scenery - hoping it will help!

Whilst Matt was in hospital they tried to do an endoscopy, but the ulcers were so big they had to resort to a CT scan, all they said was all of his stomach is ulcerated through to his rectum. He also has ulcers in his mouth which they have said will be related. His next appointment at the hospital is Thursday of this week - boy do I have a list of questions for them!!!!

Thanks for your replies, it has helped more than you may realise.

 

[Dallies]

Hiya Mel, we have a 16 year old who had an appendicectomy in April which showed crohn's and her symptoms were tummy ache, vomiting, anemia and weight loss. Her small bowel closed up and to cut a long story short - she had a small bowel resection recently and is now eating, feeling great and is doing great. :ybiggrin: We hope for a long, long, remission!!

I found this forum and found strength and support here and friends that I consider to be the very best. Wishing you and your son all the very best.

Much love D xxxx

 

[Astra]

Aw good luck Mel!
write everything down, document it all, questions and answers!
and Yes, ulcers are related, from the mouth to the anus, so they say!
xxx

 

[bobby.parker]

I'm also 19, I don't come on her as much but I really like to talk to people with Crohn's at a similar age to me, so I'm not sure if he's on facebook which I'm usually on a lot more on and off, if so my link is at the bottom of my signature below this post if he wants to add me?

I was 7 stone, I've put on nearly 6 stone after my operation, I've built up a very energetic life style with weight lifting, mixed martial arts, high intensity cardio!

 

[gypsigirl28]

Hi Mel, welcome

 

[Zalanicht]

Welcome Mel. I was in your son's shoes about 6 months ago. Went from healthy to emergency surgery in 2 months. Feel free to message me with any specific or non-specific questions that you might have.

 

[Guest]

hi Mel & welcome to the forum.. i echo a lot of what's been said already, firstly that your son may really benefit from joining us as well as yourself - the support and information here is fantastic, and sometimes i still read something (even tho i've had Crohn's for many years) which i didn't know, and sheds light on things which i hadn't even realised were Crohn's related. apart from that, Crohn's can be one of those 'lonely' illnesses, one which is not easy to discuss amongst your peers, especially during teenage years.

i would certainly get his bloods checked regularly, especially for his Vitamin B12 levels - this vitamin is very often depleted in Crohn's sufferers, purely because it can only be absorbed from one specific area of the intestine, and if that area is affected by disease, or if we have poor absorption anyway, our B12 levels will eventually fall and start to cause symptoms.

many of us have to take B12 regularly, often by injection, i do - i used to have it 3 monthly, now i'm on 2 monthly as i was feeling the onset of depletion well before the 3 months was up.

also i would look at his diet right now - try to encourage him to believe that what he puts in his mouth will directly affect what happens in his digestive system... when things are bad (flaring) a good way to go is the low residue diet, eating things which do not require much work on behalf of the digestive system... things like mashed potato, scrambled eggs, soft-cooked chicken etc... and avoiding spicy foods, alcohol, raw vegetables etc.. we have a lot of discussions on diet here - just do a search and have a look through the various threads.

any problems or questions - just shout.