Hello everyone, I am new here, but in desperate need of some guidance from people 'in the know' about Crohns.

My Son was diagnosed a week after his 12th birthday back in March '09, he was given 6 weeks of Modulen through a nasal tube, which initially seemed to work. Barium x-ray showed otherwise, still had some inflammation. Now on Month 4 of Budesonide steroids, but down to 1 a day.

He missed so much of end of Year 7 at secondary, was trying to do half days, now he is struggling with getting back into a new Year 8. Not many close friends, but a wonderful year tutor.

On a good day, he seems like my Son again. On a bad day, we daren't leave the house.

I am divorced from his father,  and the kids live with me but see their Dad at weekends. Hence most of the caring and worrying falls on me. Don't think most people understand how it really affects ALL of us.

Consultant says my Son is growing and putting on weight, so they don't want to see him again till December, but I KNOW as his Mother that he's still not as well as they think. He still gets griping stomach pains and for the last 2 days, has had dizzy headaches in the mornings.

This Crohns came out of nowhere months ago and its knocked me for six, let alone what its done to my poor Son.

How do we see a light at the end of the tunnel?

Many thanks in advance for your help.

Hi and welcome. I couldnt have wished anything so terrible on you  at this time.
Your son and your family will be put  through an awful amount of stress for the next few years
until  he,and yourselves find a routine,and have some sort of manageble lifestyle together.

1st of all,the trauma of divorce unsettles everyone in the family,and its possible this could have
triggered of his crohns.Stress is normally the start of it,so try and keep things calm between
yourself and ex,when he is around.I dont want to get too personal,its nothing to do with me,but
i suggest you keep any pressure,or stress from your son,at this time.He will need all your support,
things will rough for a while,soiling clothes,bedding,mood swings,anxiety, or just being tired.
There will be many situations,and that will be best talked over with his gp.The most inportant
thing is not to blame yourself on this one, it would have come out sometime in his life.
Just be there for him,he will need your support,from you ,family,and dont forget his friends,they
need to be told what to expect,dont let him get bullied over this,as he will have accidents.

hope this has helped without me getting too personal........regards David.

David,

Many thanks for taking the time to reply. Divorce was 3 years ago, so a lot of the stress was dealt with before the Crohns appeared. Consultant says its often genetic, but nothing either side of the family as far as we are aware. As I said, it knocked us for six when we were told.

Tutor at school asked if pupils in his form class should be told from the beginning, and I said yes, tell anyone she thought needed to know, pupils or teachers, especially as he went back to school with the nasal tube in for a few weeks. Pupils were brilliant, lots came up to him in the hallway and asked questions, his two closest friends acted as 'fielders' for some of the time, they answered before he had a chance, it was quite funny. Teaching Assistant at the school has a son with Crohns so we met her and she was informative about how her Son dealt with things at school. All in all, that side of things has been ok.

I am concerned about the time it seems to be taking to get him into a decent remission. We were told the Modulen would work, and it did, to a point. Now we are on the steroid road. The last 7 months of our lives have been hell, I don't mind saying it to anyone. I need my old Son 'back', but to be honest, I wonder if things around here will ever seem 'normal' again.

Lynn

HI Lynn,
I was whizzing through the messages so realise I gave rather a promp reply. Then I saw the other messages. So thought I would take a bit more time to respond.
Joe was on the modulen but unfortunatley it didn't work. He went on steroids for months and months and is now on Azacol. The medics say he is in remission but his bloods are still up and his symptoms have more or less stayed the same.Apparently he also has irritable bowel and constipation and has an area which often becomes blocked if we don't keep a close eye. In the last 14 months he continues to have diarrhoea every day and awful pain. I have asked will he ever do a normal pooh again!!! I haven't seen one!!!  really understand where you are comming from. It is nothing less that tough tough tough....If it is a help to know others experience the same awful frustrations then I think it is helpful to feel that you are not alone and that others do understand.
As far as Joes growth. For the first time ever he has stayed in the previous years clothes. The medics aren't too bothered but as is mum it bothers me. I am very frastrated in this Crohns world.
However I think a big part of it is begining to axcept it.... Makes me feel very sad but that is the reality ... my view anyway....
Hope that helps. BH. Excuse poor spelling... in a rush!!!
Lisa

Hi Lisa,

Thank you so much for your time to reply. Yes I do feel we are struggling alone, we live in Cornwall and I only know of one other child with Crohns, and I met her Mother through Facebook! There must be more, but its how to find them. I tried an appeal on my local radio but no one came forward. There doesn't seem to be any groups anywhere to meet others and chat about stuff.

My other son is 8 (9 in December) and he is fit and healthy, well, a little chubby maybe, lol. Crohns has had a negative affect on his life too, because his brother is often ill, he doesn't get to do the things he might like. Bless him he seems to have understood it all rather well.

I am so glad I found this forum today!!

Lynn

HI again Lynn,
Just had a thought. Joe missed 50% of school last year. I became very frustrated about the lack of support if I were keeping him out of school unlawfully I would have been picked up by the education walefare. As it was they were not interested until I requested a commmon assessment framework (CAF) via the school nurse. It was liberating. It meant that we could begin to start working together. Joe is now on a statement at school which means he is reviewed reguarly. Teachers are now fully aware and support him in his needs. It is usually difficult to get Joe to school on time as he is up most of the night and then can't get up in the morning. I feel much more supported now. Might be worth you taking this route. As for stress I'm unsure about that one. I cannot think of any reason for Joe having crohns apart from something which occured in his first few months. I have discussed this with the medics. They have no answers. I think it isn't good to ask why but to try and move forward and cope with the day to day challenge.
BH Lisa

P.S Lynne!
I've got two others !2 and !3. Yes it has been a strain but they are very good at coping with Joe. They get frastrated understandibly but are adapting....which is good for me.
Lisa

Hi again Lynn, Iam so glad his friends are supporting him like that.So ok divorce 3 years ago
right we can rule that one out,but somewhere your family must have a history of stomach
problems or something.My gran had half her stomach removed when she was a teenager.My
mother had stomach,and digesting problems,my sister has problems,and her little girls tubes
were in a right mess,having to be hospitalised every 3 months.Anyone of them can start crohns
anytime,and apparently my girls and their children will be affected as it goes on in our genes.

When your lad finds the right medication that agrees,(and we are all different) with his crohns
then it will calm down,and settle for a while,hope its soon.

Take care.....David. PS I used to live in Devon,but the damp weather gets into my joints.
Thats another side effect,sorry.

Hi there, so sorry to hear your son has got crohns, my son has just been diagnosed with it yesterday, he is 10 years old, i am so glad to have found this forum, like your son this has come from now where, we have got to see the consultant on thursday to see which road we go down medically.  

I cannot thank you all enough for your replies, just knowing there are other people 'out there' that have real day to day knowledge of this helps a lot.

I am phoning our GP today, don't hold out much hope of getting any help, but this whole 'dizzy head' thing is driving me nuts, keeping him off school for the rest of the week now, hopefully I can make him rest more (some hope! lol) and build him up a bit ready for next week. This is the stressful part, from day to day you never know what each morning will bring, so life cannot be planned. Had a hair/lunch day booked for myself but thats gone out the window again! Crohns really screws you around.

Lynn

Hi Purple Linzee,

Sorry for all your problems with your son, must be hard for him to deal with, hard enough for me and i'm 34, like davie says, its all about finding the right meds, different things work for different people, unfortunately it seems a case of 'hit and hope', but good luck anyway and keep strong for him

Hi Linzee,

I'm another mum, this time of 10yr old Ben, diagnosed in March 2008. We have had very similar experiences. Lisa and I have swapped many a message. I just wanted to join in and say that we are all here to support one another, so welcome.  

I think one of our biggest problems is, as Lisa said, accepting it. It seemed almost a relief at first to have a diagnosis after him being so ill for quite a while, but now I think we are just about starting to come to terms with it all. Ben has done the feeds, steroids etc and he didn't get into remission at all. I asked if we were aiming for "normal"poo and no pain, was told that was the plan, but I now think that his current pattern of going 2-4 times a day with moderate/strong pain in between is going to be his "norm". He had surgery in May to remove the most severely affected section of his small bowel and since then he has managed to get off steroids for the first time in 18 months.
He deals with the whole thing remarkably well and we have had some support from school but again that was prompted by me. We have also started seeing a psychologist at the hospital, which we think is helping.

I also have twin girls aged 8 and feel as though they are being sidelined sometimes, but luckily they seem to understand.

Sorry to go on, once you get started on here, it's hard to stop.

Bye for now, take care,

Mary

To Lisa and Mary,

Thank you again for replying. At Callum's last appointment with Consultant (I didn't go, his Dad took him), it was said that because he was growing and putting on weight, they wanted him to reduce his steroids to 1 a day for a month and then come off them altogether, and they would see him again on 3rd December. They considered him to be 'doing well'.

Well, we reduced them 10 days ago and this week he has had dizzy headaches, 'mushy' poo and lots of pain. How is that 'doing well?' For a while when he was on the 2 steroids a day, we almost had 'normal' poo, down to twice a day. (When he has been really bad, its been 6 times a day and like Oxo gravy!!) Thank heavens we live in a flat all on one level, because if he had to run upstairs for the bathroom, he would never make it.

I am expecting him to be put back on the steroids in December or for them to suggest something else, as it is obvious to me, and I'm not a doctor, that he is NOT doing well!

I know lots of people have said to me that they can get Crohns into remission, but how long will it take for us? Will our lives ever have any sort of 'normality' again?

As it is, Callum has only been to school 1 day this week. Because of the dizzyness I have kept him home, but I am concerned about the amount of lessons he has missed, both last term, and now in the new school year.

Lynn

well i did reply but nobody seemed to anser me or acknowledge me ?

To 3littledarlings,

I am sorry I did not answer you personally. How did you get on yesterday with your Son's medical appointment?

Lynn