My story

[Clare82]

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.

 

[mickey]

Food tolerance can be different for each person. I was told it is safer to bake fruits (i.e., apples sliced and peppered with cinnamon and baked), than eat them raw. Juice can be high in sugar, so perhaps juice your own fruits/veggies. Eliminate as much sugar as possible, which is good for anyone with any disease. Try probiotics (1/day) and digestive enzymes (w/ each meal). That can help some basic issues. Eat as healthy as possible, to give your body the ability to heal itself and reduce inflammation. Good luck!

 

[Crohn's Mom]

Hi Clare and Welcome !

I'm so sorry to hear how much and long you have suffered with CD, and I'm even more sorry to hear that your sweet daughter may have it as well.
I know how hard that must be for you to bear!

I wanted to let you know to come on over and check out the Parents of Kids w/IBD sub-forum. Unfortunately, there are a LOT of us parents here that have children with IBD. We all share your pain, frustrations, worries, etc.
They're a great group, and so loving and supportive. We're all in this together!

Hope to see you around there !
Hang in there and please keep us informed on your sweet girl.
:ghug::ghug:

Here is a link to the Parents section : feel free to copy and paste your story into a new thread there, or start a new one

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

 

[Angrybird]

Hello and Clare and welcome :hug: That was quite an introduction to the disease! From what you have put though you are in remission and stay that way through diet alone?

I am sorry though that your daughter may also have crohns, I agree that checking out the parents forum will bring you a lot of help and support so do check it out and keep us updated on how things go.

xxx

 

[David]

Greetings Clare, I'm glad you found your way to our little community. I'm so sorry to hear that your daughter is exhibiting symptoms as well, let's hope it turns out to be something more benign.

We're here for you anytime you need us. I wish you and your family all the best

 

[Clare82]

Thanks everybody for your support, i was in remission for a couple of years, didn't have any problems as long as i didn't eat the things that cause me problems, but for the last week i've been having cramps and spending lots of time on the toilet, feeling really tired and run down

 

[David]

Have you made an appointment with your GI for yourself? I know you're worried about your daughter, but be sure to take care of yourself as well

 

[Clare82]

I'm going to go and see my gp in the morning, he will probably send me to the hospital to see the gastroenterologist.

 

[David]

Great Please keep us updated!

 

[Clare82]

Thanks David, i will keep a log of how i'm getting on. This forum is great, i should have looked for something like this when i was first diagnosed. Oh well, better late than never eh? lol x

 

[Clare82]

Had so much going on, i forgot to update, my daughter WAS diagnosed with Crohns on 19th March after her colonoscopy and was admitted to hospital where she spent 8 days there. She has been on a modulen diet for 5 weeks now, she is going to slowly be introduced to foods again next week. I'm soo proud of her, she has been drinking it, which apparently not many people can do and there has only been a few times where she has been upset at not being allowed to eat. She comes home at lunchtime for some modulen and avoids seeing people eating in the cafeteria. She is on salofalk granules and iron tablets. Last week she had to have a barium meal xray and they said her top half of her gullet is completely normal but they were going to take a good look at her small intestine and send results to her consultant who we are seeing tomorrow and will get the results of the barium meal. Hopefully everything is ok. At her colonoscopy they also found an ulcer on her stomach With the medication and modulen diet, she has put on all the weight she had lost and is thriving, she is outgoing, very energetic etc! I'm a happy mummy again

I was so wrapped up with her, i didn't go to the gp about myself. I finally went last week and had some blood tests to see if there is any inflammation in my blood, and i've been referred back to the gastroenterologist. Just waiting for my appointment to come through. I'm sooo tired, it's unreal. Had my B12 injection at the docs last week aswell, so don't need another one now for 3 months. Seem to have a bit more energy again, but now it doesn't matter what i eat, i always seem to have to go to the toilet

 

[David]

Ugh, I'm so sorry to hear that your daughter was diagnosed as well My heart goes out to both of you. You may want to setup camp in our Parents of Kids with IBD forum as the parents there can certainly relate and offer advice if needed.

When was the last time you had your vitamin B12 levels tested? I ask because injections every 3 months is kind of on the low end of the duration scale. Some can do it, others need it more frequently. That you were experiencing fatigue tells me you need them more frequently as you never want to get anywhere near deficient enough to experience symptoms of deficiency. You want to keep depositing into your bank often enough that you NEVER overdraft.

 

[Clare82]

It was last checked in July last year. I've just had more blood tests last week but not sure what my B12 level is now, i'll phone up in the morning and see. I always know when it's getting low as i start feeling really tired.

I've already joined the parents forum on here, you're right the people on there are fantastic, so glad i found this site

 

[David]

Sound good I'd like to reiterate that you should NEVER get to the point you feel tired or have any other symptoms of deficiency. If you're actually experiencing symptoms, then a whole range of other things are happening physiologically that you do NOT want to be going on. It's extremely important to give your body every opportunity to fight this disease and function properly. Deficiency in any essential vitamins or minerals negates that. This is part of the reason I feel there is a HUGE difference between, "Deficient", "Low normal", "Normal" and "Ideal" levels. People with Crohn's disease want to strive for ideal. In regards to vitamin B12, that's a serum level in excess of 500pg/ml.

 

[Clare82]

Thanks for the great advice makes perfect sense, as I always feel groggy coming up to the 3rd month mark, will talk to the doc about it x

 

[Clare82]

Today i FINALLY saw my gastroenterologist!! I've been waiting since April for an appointment! I'm being put back on Pentasa, i have to wait for my gp surgery to order the tablets in. I also have to provide 3 seperate stool samples, and have a colonoscopy to see if i'm having a flare up. I feel sick a lot, headaches, really tired, and my joints hurt. They've also taken a lot of blood to test all my levels and for signs of inflammation. Apparently there is a waiting list for colonoscopies too so heaven knows when i will have it! GRR!! x

 

[David]

Hi Clare,

I'm glad you finally got your appointment It has been awhile -- remind me, are you on any other medications besides the Pentasa?

 

[Clare82]

Hi Guys, it's been a while!

So i had my colonoscopy on 7th Feb 2013, they took 10 biopsies from different areas and i was told i had an anastomotic stricture that needs to be sorted and to see my consultant in 3 weeks time.
I saw the consultant Thursday 7th March 2013 and was told that they couldn't get the camera through the narrowing in my bowel. But the biopsies that were taken from the narrowed section tested positive for Crohns so i now have it in 2 areas I will be having balloon dilation very soon to sort the stricture, as i'm feeling sick all the time and in pain, the doc says soon i will be vomitting and losing weight x I will be put on aza instead of the pentasa, but no point starting them til the stricture is sorted as they won't work. My blood levels were normal except my folic acid which is a little low. Just waiting for an appointment for the balloon dilation now. Really worried about it x

 

[David]

Hi Clare,

Awwww, you poor thing. I'm so sorry to hear about that I'm glad they're putting you on azathioprine. The thing is, it can take 3-6 months to kick in. Have they mentioned any sort of bridge therapy in the meantime? Maybe some enteral nutrition?

All my best to you.

 

[Clare82]

No nothing else was mentioned David, will speak to them about it x