My Story

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

C

Clare82

Joined
Feb 25, 2012
Messages
45
Hi everyone,

When i was 15 years old i became very ill, lost so much weight, stomach was so swollen and very sore, couldn't keep food or drink down etc, my mum took me to our gp and she actually asked if i was pregnant as i looked it!! I explained i didn't even have a boyfriend so there was no chance i was pregnant! It eventually got to the point i was very grey in colour and couldn't get out of bed as i was too weak and in too much pain. My mum took me to hospital where i was seen by a couple of surgeons who decided to stick a little camera into my tummy to see what was going on inside. I was in surgery for 3 hours because there was a blockage in my intestine and i had 6 inches of my bowel removed. The next day i was told i had Crohns Disease. The doctor also said it was the worst case of it he had seen and if i hadn't had the op when i did, i would have been dead within 24 hours!! Not nice to hear at 15 years of age!! My uncle was diagnosed with it just before i was. About a week after coming out of the hospital i ate an orange and almost ended up back in hospital, it caused excruciating pain. I'm now coming up to my 30th birthday so i've suffered with this nasty disease for half of my life!!

Foods my body can't tolerate are:

Lettuce, Peanuts, Tomatoes, spicy food, sweetcorn, peas, beans, oats (although i can eat porridge, it's things like flapjacks, or cakes with oats in them), oranges and high fibre foods.

As long as i don't eat any of these things i have no problems.

Unfortunately, i have watched my 11 year old daughter showing signs of the disease and was referred to a paediatrician who said if there was signs of crohns in her stool test she will be sent to a childrens hospital to see a gastroenterologist. Well a few days ago i received a call from our local hospital to say she has to go to the childrens hospital, so she must have crohns too. I'm so upset, i've suffered bad pains and had the op because of this and to think my daughter must have it too and may have to go through the same things I have 3 children and i'm worried incase any of the others get it.

Does anybody have any children with it who can offer advice?? I guess it's good that i have it and know what foods not to give her and can understand what shes going through.
 
So hard to see your kiddo suffer...especially when you already know firsthand what she is going through!
I hope that her first visit goes well...welcome and good luck!
 
Welcome Clare,
I hope your daughters appt goes well. It is so hard to see your child going through this. At least though you can offer advice and support since you know what she is going through.
 
Hi Clare and :welcome:

I'm so sorry to hear of all you have been through and what your daughter may now be facing...:hug:

My own daughter was diagnosed at a similar age to you, she was also undaignosed at the time of emergency surgery and we had the 24 hours later and it would have been to late too. :(

It must be so very hard for you see your daughter most likely having to face this diagnosis as well. In many ways it a blessing for her that she will have someone that is so close and loving knowing what she is going through and will be able to advocate so strongly for her. For you on the other hand it is a heavy burden to bear, experiencing that same pain and suffering yourself must make it all the harder to see your daughter going through it. My heart goes out to you Mum...:ghug:

You have found a wonderful place for yourself and your daughter. We will give you all the help and support we can and just know we are with you every step of the way. Good luck hun and welcome aboard!

Dusty. xxx
 
Thanks everyone for your comments, i had a strong feeling she may have crohn's, it's been like watching a replay of what happened to me. At least she's not as bad as i got, and i'm grateful for that. I took her to the gp in December, she was very pale and everybody was noticing it, he did some blood tests and it came up with iron deficiency anemia. Her platelet level was twice the normal amount and her white blood cell count was up. She was put on sytron iron medicine and 2 weeks later she went back to the gp for another blood test and the anemia hadn't improved at all although her platelet levels had come down and the white cells were normal. So he referred her to a paediatrician. I mentioned it to the gp that i was worried about crohns but he didn't think she had that as it's rare in children her age, but as i've got it and my uncle has it surely there was a good chance?? Anyway, when we went to the hospital appointment, i mentioned to the doctor that i suffer with anemia a lot because i have crohns and his face suddenly went serious. He went and spoke to the main paediatric doctor and they decided to check the blood for crohns and do a stool test. They also did a test for Coeliac Disease as that can cause persistent anemia. There must be signs of crohns if they are sending us to the childrens hospital. I'm just glad i kept mentioning the crohns. And she was tested for it. I would hate to see her get to the point she needs emergency surgery like me.
 
Welcome Clare! I know you don't want this for your girl but she is certainly lucky to have you in her corner! Let us know how it goes.
 
I've just a call from the hospital, they are sending some bowel prep to our gp and she is having a scope, i guess that means a colonoscopy x
 
Hi Clare,

Just wanted to welcome you to the forum as well and offer my support. While I can imagine that in having this illness, in some ways, it must be even more difficult for you to hear this diagnosis, however, as was said above, I'm sure you will be an invaluable source of support and guidance for your daughter.

Good luck with the scope. :ghug:
 
Hi, sorry to hear about your daughter - hope the scope goes well. Sorry I can't offer much help as my son is only recently diagnosed. Just wishing you well
 
Thanks sascot x How old is your son?? It breaks my heart to know young children suffer from this horrible illness :/ x If you need any advice on anything, just ask :)
I hadn't heard of it until my uncle was diagnosed just months before me, he too was diagnosed after surgery. I remember being told that's what i had and i just cried. I think it was the word disease that bothered me the most, and having to explain it to people.
 
Thanks Kimmidwife, i will keep logging her progress, if it helps other people i will be happy to do this :) I think there needs to be more awareness about the condition, it seems to affect a lot of people these days :/ x
 
I just wanted to say hi. I am very sorry to hear your daughter has been unwell. My son is 10 years old and was diagnosed a month ago. I hope the scope goes well and you get some answers. Not knowing is hard. Take care and let us know how it goes.
 
Thanks Twiggy930,

It's really hard watching your child suffer isn't it :( I've had my daughter sit on the floor in the middle of the supermarket and cry because of the pain :( I hope that one day a cure can be found so our children don't have to suffer x
 
Hello Clare,

I just wanted to welcome you. I am glad you have found this forum. I have found it really helpful to be amongst other parents who know how you feel.

My son had crohn's - he is six, and was diagnosed when he was 5. I think is is so hard for parents to come to terms with their child who has been well, then gets ill and are told they have a chronic condition. I have felt very distressed about it, and of course worry for the future. But I remind myself that I am lucky to have access to great doctors and hospitals and that research is always ongoing.

I can imagine that you would be feeling extra grief because you know how crohn's has affected you. Please give yourself the time and space to feel upset/angry/sad. I hope that things soon start to get better for your daughter.

Keep us posted how things are going.
take care,
LilyRose
 
Hi, my son was 12 when diagnosed - although had symptoms for a year and a half before (went through the mill with GP's,etc. One even said "sometimes we just have to live with a sore stomach"). I am glad it is diagnosed as we have a great team looking after him and they see him almost immediately if he is unwell (my paediatrician came in just for him last week). Not a great diagnosis but at least we have an answer.
 
Oh bless him :( x

We've just had a letter from the childrens hospital to say she is having the colonoscopy under general anestetic and just waiting now for the doctor to order the bowel prep x
 
Hi Clare
Just wanting to send my love & wishes to you & your daughter, i'm sure March 19th cant come quick enough so you have an answer.
I hope the conclusion is a good one but you know 1st hand if it isn't.

My son has crohn's age 14, diagnosed Nov 2010, its so hard watching your child suffer but knowledge is power & this forum is fantastic.

Be strong & hope all goes well as can be

love
Clare J
 
My daughter was diagnosed with Crohns after her colonoscopy. I have been in the hospital with her until today (7 days). A section of her small bowel is inflamed and she's got an ulcer on her stomach.
She is on the modulen diet, thankfully she can drink them so doesn't need to use a tube, and she is on Salfalk and iron tablets. She had an iron iv on Friday and has some colour back. She was on phosphate tablets too, apparently you get phosphate from cheese etc and because she is not allowed to eat, it caused her phosphate to become low, but she no longer needs the phosphate.
She has been very emotional, trying to come to terms with things, and also the fact she isn't allowed to eat for 6 weeks. But thankfully she said the modulen makes her feel like she has eaten.
It's such a relief to have a diagnosis and i'm really happy i pushed them to test for it!
She is back at the childrens hospital on 10th April for a barium meal x-ray and she has to go and see her consultant again in 4 weeks time.

Thanks to you all for your support :) x
 
Sorry to hear your daughter definately has Crohn's. However at least you have a diagnosis and as you said - you have alot of experience to help her. Good luck with the Modulen - my son couldn't stand it so he had the tube for 8 weeks (poor thing is in first year high school). Hope things improve from now on!
 
Hi Clare82,

So sorry to hear your daughter has Crohn's . It is terrible to watch your child get sick. My son just started the Modulen diet too, today is his 5th day on it. He hates the taste of the Modulen so he is having the feeds via a NG tube overnight. He learned how to insert the tube last week and I was SHOCKED at how easy it was for him. He is finding not eating difficult at times but other than that is doing pretty well with the treatment. Hardest part for me has been when he had his first meltdown 24 hours into not eating and was crying and begging for a piece of bread... tears a mother's heart apart. After much questioning he assures me that he isn't feeling hungry he just wants to have food. I hope the time passes quickly for them and that this treatment gets them feeling better quick. Good luck!
 
Sorry Clare! Glad you got solid answers though. Get her on the right track and keep her there!
 
Thanks for the update hun. :hug:

I'm so sorry that your girl has Crohn's but as you say, at least you now have answers and you can now put a plan in place!

Good luck and keep us posted on how things are going.

Thinking of you, :heart:
Dusty. xxx
 
Thanks everyone. She had her barium meal x-ray last week, her top half of her gullet is normal, they were going to take a closer look at her small intestine, as that is what is mostly affected (same as me), and they were sending report to her gastroenterologist. We are seeing the doc tomorrow so will get results then. Hopefully everything is ok. She has just one more week on the modulen before they introduce her to food again. She is looking forward to eating :) She is thriving now, she has put on all the weight she lost, she's growing again, very energetic etc. I'm a happy mummy now :D We are waiting on an appointment for a bone scan, just to make sure she hasn't developed osteoperosis due to not being able to absorb nutrients, there is a chance she may not have been able to absorb calcium.
 
So glad she is doing well and is almost done with the liquid diet! My son also did the six weeks without food - you really have to give them credit, shows you just how strong they are! :medal1:

Just FYI, my son's crohns is mainly in his TI with tests showing small patches elsewhere, his maintenance treatment has continued to be only the formula. He uses an NG tube overnight and his dosage was cut down to 1/2 the formula, 5 nights/week. During the day he eats a regular diet. It hasn't eliminated ALL the inflammation but has pretty much kept him in remission so far.

Good luck! I hope her well being continues for a long, long while! :)
 
We've had great news from the doctor today, her crohns is in remission, she is symptom free, and no inflammation was found in her barium meal x-ray. They are going to do an MRI scan to make sure there is no inflammation anywhere else. We can stop giving her the salofalk and she needs to take iron tablets for another 6 weeks, then we can stop giving her those. She is now on a food reintroduction plan. Will take 10 days to introduce all foods, but after 10th day she is free to eat anything she wants. Her modulen will gradually come down to 400ml a day and she will have to stick to the 400ml a day for maintenance to make sure she's still growing etc. I'm a very happy mummy today :) Thanks everyone for your advice and support x
 
Woohoo! Excellent news hun...:panda::panda::panda:...long may it continue!

:goodluck::goodluck::goodluck:

Dusty. xxx
 
Thanks everyone, we are all really pleased for her, just hope a flare up doesn't happen anytime soon, but if it does, i just have to phone her IBD nurse and she will get us an appointment straight away with the gastroenterologist :) x
 
Just thought i'd give an update:

Libby was supposed to go to the hospital in august but came out in chicken pox, so still don't have the results from her MRI but she is there Thursday 25th Oct so we will know then. She has been doing really well, had a major growth spurt and putting weight on really well, she has had maybe 2 or 3 days where symptoms have made an appearance but apart from that she is still not in any discomfort and she still has so much energy.
Will post results of MRI in a few days x
 
Thanks for the update! :)

I hope all continues to go well for Libby and good luck with the results!

Dusty. xxx
 
So Libby's MRI results showed that she has small bowel Crohn's (same as me), but it also showed strictured segments which the doctor is concerned about so he is arranging a meeting with his surgical colleagues to discuss whether surgery would be a good idea. It's not caused a blockage though thankfully. Been a bit upset today, just added to the guilt i feel that she's inherited this illness off me. Just got to wait for the doctor to get in touch with their decision.
 
Oh Clare...:hug::hug::hug:...I hate that you are going through this. :(

I hope Libby is okay and you hear from the docs soon. Thinking of you. :heart:

Dusty. xxx
 
Thanks Dusty.

The crazy thing is that she's still putting on weight and she's grown 9cm since she's been on the modulen and she's been so happy and bubbly, there was only 1 days where she complained of pain, but her doctor said if she shows signs of any symptoms to call her IBD nurse and they will get us seen straight away. Im just glad her doc decided to do an MRI scan as the barium meal x-ray and histology came back normal, it was only spotted on the MRI! He said she is only the 2nd person where all other tests were clear but showed on MRI! x
 
Sorry to hear this. It must be upsetting when all the other tests have been fine. At least you know she is feeling well in herself. Good luck with whatever the surgeon decides. I can understand you feeling guilty for "giving" her this disease, but you shouldn't feel bad. We have no history of any IBD in the family and I still "gave" it to my son. This is a horrible disease that seems to stike just about anyone.
 
I so glad they spotted it before things got worse.
I hope they come up with a good plan
and your girl stays feeling good!
 
It makes things so difficult when tests don't show what is going on. But thank goodness the doc is on top of things! :)

Dusty. xxx
 
Feeling really upset this morning.

My daughter was bombarded with texts from her school friends asking if she has cancer, because somebody has spread rumours that she was at hospital yesterday because she has cancer! As if she hasn't got enough to deal with, she is upset about it all :( x I've messaged one of her friends mum and told her about the condition and asked her to explain it to her daughter as i think it's best her friends understand what she's got. Has anybody else gone through a similar thing? x
 
Oh my goodness Clare, how awful for you both! :hug::hug::hug:

My children haven't gone through that but my daughter was subjected to the whispers type thing. Prior to her diagnosis her friends thought she had anorexia. I didn't know about this until after her diagnosis and I must admit I was pretty reactionary at the time. Year 9 girls are never generally renowned for their compassion, :lol:, but I was taken aback nonetheless. My daughter had emergency surgery and that is how she received her diagnosis, to say it was a stressful time would be an understatement and when she was transferred out of ICU and to the ward her friends came to visit. Most left the room crying and it was then they told me they thought she had been anorexic. I didn't carry on like a mad woman but I did say at the time that if they did think that then they should have spoken to me and not carried on with nonsense behind her back. I told them that I expected better of them and I hope that they have learn't something from this, how damaging it can be and that they don't repeat it again in the future with anyone. :eek2:

How is your daughter doing hun?

Dusty. xxx
 
Hugs...
So sorry to hear.
We haven't dealt with rumors yet.
8 year olds have different priorities but I am sure middle school will be different.
 
My daughter is fine now thanks :)

Just getting on with things and made it clear to her friends she doesn't have cancer and would like the rumours to stop. Libby is in year 7, guess it couldn't have come at a worse time when she's just made new friends in high school, but the rumours seem to have stopped now and i'm sure her friends will put people straight if anybody asks :) I've been trying to find a local support group that i could take her to but we don't seem to have anything where we are! x
 
My daughter went through something very similar when she was in 8th grade. She was 14 years old and recently diagnosed. She was taking Prednisone at the time, so the moon face was very much there. One day it went from having a broken leg, to getting bit by an animal and then to cancer. It was horrible. I had already talked o her very close friends mom's so they could explain it to their daughters. Her friends took care of everything. they stood up for Ashley and were always there for her never letting anyone say anything mean without defending her. When she would have a bad day, it was a quick call to a couple friends and her day was much brighter. Ashley had a great support system and her friends helped her right through it. Good luck to your daughter, kids can be so mean.
 
Hi everyone,

Didn't realise it's been so long since i wrote on here, Libby had an MRI scan a few months back which showed where her crohns was and also there is several strictures but they aren't bad and the doctor isn't concerned about them at the moment. She's still on no medication, just 400ml of modulen every day and she's doing soooo well. However, my own crohns isn't good at the mo, i have to have balloon dilation for a stricture that i have where the small bowel joins the large bowel. The affected area tested positive crohns, so i now have it in 2 places :( x Feels like we just sorted my daughter out and now it's my turn! x Hope you're all well and you children are ok x
 
Hi Clare, I'm glad to read that Libby is doing well. I'm sorry your Crohn's is acting up. That is scary to me that Libby isn't getting any treatment yet she has strictures. Are they monitoring her labs and doing sequential MREs to make sure she isn't progressing silently? How about you, are you on meds?
 
She gets checked out every 6 months, if she complains of anything i'm straight on the phone with her IBD nurse.

I used to be on Pentasa when i was diagnosed, but i found i had no problems if i avoided certain foods so i stopped taking medication. I had no problems for a few years but all the stress of my daughter being ill and diagnosed with crohns triggered all my symptoms. I am being put on aza after the stricture is dealt with, my doctor said the medication won't work until that's sorted, but thankfully i won't have to wait long.
 

Similar threads

Pilgrim
Little Pilgrim moves to 3rd Biologic
Replies
17
Views
2K
Maya142
Maya142
Anna's Bandit
Hospital
Replies
5
Views
651
Crohn2357
Crohn2357
Papantoine
Punching Crohn’s in the balls!
Replies
7
Views
673
RickS
R
D
My IBD history
Replies
1
Views
529
valleysangel92
valleysangel92
Papantoine
Neglect?
Replies
0
Views
248
Papantoine
Papantoine

Latest posts

Back
Top