My story so far- recently diagnosed.

Hey, im new to this forum but I thought posting my story would be a great way to start off and im hoping I'll make some friends who have been through what Ive been through. * This is kinda long...sorry*

So, im Ki3, im 13 in august and I was diagnosed with Crohns Disease in january 2013. In 2012, in october, is when it all started. It wasnt that bad to start with, just a stomach ache. After we realised that my stomach ache wasnt going, I went to the doctors. I was told its probably just a winter bug, and if it wasnt gone after a week come back, so I did. Again they said its probably just taking a while to go, so go home, if it doesnt go, come back.
I kept going back and on about the fourth trip the doctors they did some blood tests. I was not a celiac, but I was aneamic. They gave me nothing for the stomach pains, but they gave me iron supplements. After about 7 trips, I was referred to a clinic at my local hospital. Thats when it got a bit scary. I went to the appointment, and we were told to go and have some blood tests then come back in two days time. I went and had the tests and as we were just about to walk out to the car park I collapsed into a chair and was sick. We went to the clinic and explained what had happened, as I have never reacted to having a blood test before, it wasnt me at all. My doctor was concerned at how ill I was and the next day I was admitted. I stayed in hospital for about a week, not getting very far. Then I was told they were going to do an MRI scan. I hated the scan, but im not going to go into that... After the scan we were told they suspected it was Crohn's disease, and I was to go up to St.Georges hospital to have an endoscopy and colonoscopy to confirm the diagnosis. I hated the whole expierience of it but they said afterwards it was crohns and sent me home with steroids and put me on azathioprine. When I was on 7 tablets a day I loved the steroids, my symptoms were gone and I felt amazing, but then when they went down to about 3 tablets, I had a moon face, joint pain, Insomnia, bloated bellie and my stomach aches were back. I hated it and didnt want to see my friends as my cheeks were big and red.:ymad: the only good thing was the increased appetite and weight gain. I was extremely underweight before and i could feel almost every bone :hallo3: so as I took less and less of the steroids my stomach pains got worse and worse. One evening I had a really bad stomach ache. If on a scale of 10 being the worst possible pain ever and 1 being not bad it was at about a 7. i somehow managed to get to sleep but at 1am I was woken up. The pain was at about an 8 and a half now so I wasnt sure what to do. I have an extremely high pain threshold so I just did what I do best, put up with it. After about half an hour, in just a split second the pain went up to a 10. I screamed and sat up, I didnt want to but for some reason I couldnt help it, it was like a reflex to the pain. I staggered into my dads room and told him that he had to stop the pain, I couldnt take it any more.

I was in so much pain he didnt want to wait for an ambulance so he carried me to the car and we went to a&e.

As doctors were examining me and asking me questions, the pain just kept getting worse, at about 3am we were admitted to the childrens ward there. They tried paracetomol, buskopan and Kodine but nothing worked. I needed sleep so they put me on morphine, the pain didnt go, but it made me sleepy, so I slept until the morning. I had an ultrasound but nothing was significantly bad, there was inflamation but thats normal with crohns. On the second day even Morphine wouldnt stop my pain, my mum was so upset as I was in agony and she couldnt do anything to help. After about a week the pain was a bit more under control and we were sent home.

After about a week of being at home we went back to the hospital...yep...again.. Im not going to explain what happened then, as for a week nothing happened, then eventually they mentioned starting me on remicade. I had to go to st georges about a week later, just for a blood test to make sure I was allowed to start remicade, but when I saw my doctor she said she wanted to try me on a liquid diet before starting the remicade. I said I already tried the drinks, and I couldnt drink the 7 a day I would have to take, so she said to go to my local hospital and get a silk tube put in.

So I survived the weekend then went to my hospital to get the tube put in, we only expected to be there for a day or two. I hated the idea of being awake when they put the tube down, as I have a high pain threshold like I said, but for some reason tubes up noses are my weakness, its like a phobia, i cant stand them. I was sadated and they put a tube down... but it wasnt a silk one as they didnt have any. It was harder than a silk tube, and it actually scratched my throat and made it bleed. I was started on my elemntal diet down the tube, and we discovered with the tube down I couldnt take any meds by mouth. One evening I gagged on a painkiller, and as I leaned forwards to be sick, my back clicked loudly and hurt like hell. the doctor said I only sprained it but it felt so bad. I had to have annother MRI just to make sure nothing in my stomach was worse compared to the first one. They said I had a perforated bowel and had to have emergency surgery at St. Georges the next morning. We went by ambulance with the sirens on. When we got there people came and felt my stomach, said that it wasnt perforated and I wouldnt need any surgery. Turns out that it had been perforated, but closed up. So I stayed and St Georges and changed my feed to Peptamen, and it was going ok I guess. After about two weeks we went home and that leads up to now.

I am half way through my liquid diet, I do sometimes go insane without food but I hardly ever get stomach aches so I guess its good. I really hate my ng tube though, one night the lid came off and it leaked stuff all over my bed and back, then last night my tape came off and my tube slipped, so I had to push it back in (really painful)

Im sorry this is so long but thats my story and I hope maybe you can relate?

Many thanks for reading

Hey Ki3, welcome to the forum I'm glad you found us, I'm fairly recently diagnosed myself and have found this place so helpful, everyone here is very friendly and no question is too big or small, although we may not always have the answer, we will always do our best to support you and point you in the right direction.

My first symptoms were really similar to yours, and I had all sorts of tests but nothing showed so it took a long time to get diagnosed, during that time one of the things that really helped when my pain got bad was heat, so it might be worth a try for you if your symptoms re-appear during or after the liquid diet.

One of the best things anyone has said to me is not to feel embarrassed about your illness or your symptoms, while there are some aspects of crohns you may find hard to talk about with others in your family or school friends but here we're all in it together.

Your welcome to message me privately any time you need to talk, I've been sick with different issues since I was 13 myself and so can relate to what its like to try and deal with it at such a young age, along with many others here. You might also like to check out the teenage section where you'll find others around your age that can help and support you .

I'm glad the liquid diet seems to be helping somewhat, those tubes are nasty I know and your doing really well . Well done for getting this far, I hope your doctors come up with a more permanent solution soon that gets you back to health.

Im sure there's a few things ive missed, but hopefully someone with more experience will be along soon to fill in the blanks .

Thank you!

Even if I havnt got answers yet, its great to hear other peoples story and know that im not the only one. I've already managed to help someone else (wasn't expected)

Also thanks for saying about using heat! I found this helped my pain before I was diagnosed and until today I completely forgot! I'll get my hot water bottle ready
So hows your Crohns going? Is it controlled?

Your certainly not alone, and although it might feel like you are sometimes, just remember there'll always be people around here willing to help and support you, even if you've just had a rubbish day and want to let off some steam .
Awh glad i could help..

My crohns took 5 years to diagnose, i started to get symptoms just before i turned 15 and was diagnosed in december last year. At first my doctors put all my symptoms down to another condition called coeliac which means my immune system attacks my body if i eat anything that contains gluten which I first got tested for at 13. But even with this under control things got far worse and like you i was in and out of hospital so i finally got my scope and was diagnosed. Ive had Prednisolone and Entocort as steroids and Pentasa briefly and most of my inflammation has settled but I still have a stricture ( a narrowing in the intestine ) which the meds aren't helping so I'm on the waiting list to have that removed with a resection in the next few weeks.

http://www.crohnsforum.com/showthread.php?t=45025

theres a link to my first post for a little more background, and you'll be able to see what people suggested for me to see if any of it might help you too

Thank you for that, it seems are crohns symptoms are very similar! I guess im just lucky I didn't have to wait as long for a diagnosis. I too get the pain in the lower right of my stomach and I have strictures, but for some reason my doctors dont want to do surgery.. If I flare up there are two drugs they want to try first before even thinking about surgery, yet if they just removed the diseased part of my intestine im sure things would get so much better as they do for many other people I've heard about. I get that they might not want yo because im young but if it saves me from taking all these drugs im happy to have surgery, im pretty sure I need it.

Thank you for all your help! :smile:

I know it can be tough with the medication but surgery isnt something many doctors will do lightly, its generally a last resort as it does have risks and theres only so much they can remove, it can still come back, even surgery isnt a cure and most crohns patients will need it at some point but the longer its avoided the better, plus surgery works best when the inflammation is at the lowest possible as its easier for your intestines to fuse together. These days some medications can work just as well as surgery for some people.. Unfortunatly by the time they got to me they said there was too much scarring for the medication to be of much use ... I really hope it works for you though, it does become easier in time . If you have any more questions feel free to let me know.

I am new to this forum myself and have been finding the reading very interesting. I was sick for 7 months before I was diagnosed and another 3 months before they found a med that helped me. I am now finding success with Humira and Imuran combined. I still have some bad days but my quality of life has improved 10 fold. I could imagine it taking 5 years to diagnose me. I highly doubt that I would have able to deal with that so props to you valleysangel92. You are a strong person. I look forward to reading more and leaning on the people on this forum in the future.

Thank you both for all your help, hopefully if this liquid diet works, and I get into remission, I won't have to try any other drugs. Its so Interesting to hear other peoples story, thank you

Hey Ki3 welcome to this forum,

I'm so sorry you had to go trough all that before you were diagnosed...and at such a young age its just horrible....i'm having a difficult time at 24 so i can only imagine how your feeling

How long have you been taking the azathioprine for? and do you have side effects?
I know the Aza takes a long time to take effect so i realy hope it does the trick for you and you do well on the liquid diet..

Feel free to msg me at any time if you need to talk or vent....its better to get it out then to keep it it pent up inside...

Xx

Yanet

I have been taking azathioprine since I was diagnosed at the end of january. I havnt had any side affects, to be honest ive seen no reaction at all to it! It hasnt helped my crohns at all yet they insist I take it every day and that I must for the rest of my life. I dont think that its a good idea as if its not doing me any good then surely its better to not be on the drug as it can lower your blood cell counts or something?

Im no expert on it, but I just dont think its exactly my miracle drug.

Well Azathioprine is not everyone's cup of tea....with me i was allergic to it.
After 2 or 3 months you should be seeing improvements and if not i would contact your doctor because staying on a drug thats having no effect on your body seems kinda pointless indeed but dont go off them unless the doctor tells you.

So do question the doc about your meds and tell him your unhappy with how things have been progressing so far. How do your parents feel about all of this?

Xx

Yanet

Well everyone is confused about what to say as I have been put on this liquid diet, and it is working. So we cant exactly complain to a doctor that the azathioprine isnt working, as it might have started to work, but we wouldnt realise as the liquid diet has stopped the pain.

My mum doesnt think its right that it isnt exactly working (well we think not) but we dont have any proof anymore that it isnt, because as I said, the liquid diet has improved my symptons.

I guess im getting better so I should quit complaining lol :cheers:

Lol...dont ever stop complaining...its your body...and if something doesnt feel right...you have every right to complain....Time will tell i gues if the Aza is doing a good job or not...or when you go off your liquid diet after a while....

Xx

Yanet

I don't have anything particularly helpful or inspiring to add, but I did want to say welcome to the forum and you're welcome to PM me about anything!! I've never been on an NG tube, but I HAVE had to do the elemental route. Ugh, it's awful!
Okay, I'm rambling. I just wanted to extend a warm welcome - it's amazing here, I don't know what I'd do without it!

Thank you, I've already discovered so much here its amazing! I wish I could have done the diet without the tube, it would be hard to swallow 7 drinks a day but this tube is the worst treatment I've ever had for anything if I ever have to do the diet again im going to try it by mouth!

Hi Ki3. Thanks for sharing your story. My daughter is 13 (almost 14) and was diagnosed with Crohn's in January as well. Our doc wanted her on prednisone right off, but I asked for the Enteral nutrition first. It seemed more natural and doesn't have as many side effects. Like you, she had to be sedated to get the tube down as the first one hurt her nose and throat. She won't do with without sedation. She did drink the formula (Ensure) for the first 3 weeks, but that formula made her sick after a while with more tummy pains and diarrhea. She couldn't drink the other predigested formulas so she got the tube. She was really embarrassed by it and wouldn't go out much with it - afraid her old school friends would see her. She hates that everyone knows she has Crohn's as it is. Anyway, if you want to talk to her, I'll let her know. She is on the teen forum too, but I'd have to tell you privately who she is if she agrees.

Thanks it would be great to talk to her. I was so paranoid about going out to start with, but I've always looked different so I didn't think it would be that bad. EVERYONE stared at me, not just kid but adults too.(you would think adults would have decent manners but obviously not...)
Yesterday I went shopping and a kid asked me why I had a 'thing' up my nose and an other kid asked there dad what was on my face. I really hate small kids but I still go out because little kids you can just ignore and if anyone older is rude I have the right to tell them to p*ss off.

I mentioned it to my daughter and she'll come and look you up soon.

Hey how did everything go today at the doctors? Xx

Hey I didn't go to the doctors but the tube is out (yaaay) and finally eating food =D

Ki3 - welcome to the forum! You sound like a pretty brave guy with all that is going on for you. I'm glad to hear you have the tube out. Hopefully things continue to improve and you are able to eat and not need the tube again.
I'd recommend a really hot bath. A good soak in a hot tub seems to calm my belly down when pain is worse.
One thing to remember about little kids is that they are honest without judgement. They will forthrightly ask questions but it's just because they are curious. If the explanation that is given to them is honest and not judgemental, they should accept without prejudice. It's the way adults react that teaches them that something should be perceived negatively.
Best wishes for you. I'm hopeful that you'll improve. Give the meds some time - it's only been a few months and your body is fighting hard!