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19 and diagnosed

well here i am, 19 and just been diagnosed with chrons.
its taken nearly 7 months for me to get a final diagnose,but i am glad that i now know what is wrong.

it all started back at the beginning of november 2006 when i started loseing weight, being sick for no apparent reason and not being able to stand up for long without wanting to faint. At first i didnt really think much of it and just put it down to a bug that would pass with time. After a while it didnt go away so i went to my doctor who prescribed me some anti sickness pills, these didnt help,so went back and got put on a different type of anti sickness pill, but once again this didnt help. Got put onto another type, these worked for about a week but then over christmas was being sick again (what fun that was not being able to keep xmas lunch down lol)

After the xmas period i was going to make an appointment to see my doctor again, but one saturday afternoon i started getting a weird feeling in my leg, almost like i had got cramp or pulled a muscle, went to bed and woke up suday with the pain still there, slightly worse. By the end of the evening i was in agony and could barely move. Monday morning i woke sometime early in the morning, not being able to move at all, with chronic pain in my left leg, got taken to hospital and after a few tests,they found 3 blood clots in the top of my left leg :(

now that i was in hospital, they took over trying to find out what was wrong with me. Had plently of blood and urine tests, but these didnt show anything up, except for a uriny tract infection and anemia. Got discharced after 5 days, but was given outpatients appointments. When i got home i could still barely walk, and because of the clots my left leg had swollen severly, so it meant i couldnt do the simpliest of tasks, like making a cup of tea. My mum was my saviour during this time, having to get things for me, helping me get dressed/undressed, and just generally being my servent. I was falling asleep most afternoons,was still being sick and was still feeling dizzy, even when sitting down.

duirng these appointmets they did a endoscopy, barium xray (yuck), more blood tests. First they thought it might be celiac disease, but that turned out to be wrong. once i got the results of the barium xray (middle of may), they confirmed that i had chrons. I unfortunatly was on holiday at the time,so i only found out when i came home. I was immediatly put on prednisolone starting at a 40mg a day dose for 2 weeks, then decreasing it by 5mg every 5 days. this has helped so much, i actualy feel myself again and can do everyday tasks without having to need help.

Looking at my family history, im not surprised that ive got it, my mum was diagnosed with it 30 years ago,and her dad was diagnosed with colitis, so it looks like it runs in the family.

now ive got the task of finding what foods/drinks agree and disagree with me and just generally getting back to my normal life, like getting back to college and seeing my friends and family
 
Hello and welcome to the forum!

I know you will meet a lot of people in the same boat as you and I here,
and they can help with any questions you may have.

I also know Crohn's most times takes a very long time to diagnose.
I'm glad they got you figured out and onto the prednisone.

There are eating tips in some of the forus here...
so feel free to roam through the rooms reading as you go.

Any questions? Ask away.

Again...welcome! :)
Hugs~Nancy
 
Make sure you let your college know about your Crohn's because if anything happens to you your teachers will be more understanding. Try to keep a food journal, they help a lot. Best of luck
 
yeah college know about my chrons. I havnt actually been there since my first hospitalisation in january, but ive been able to keep email contact with them and they have been very understanding about it.I was supposed to finish my college course in may, but due to being unwell, they have said that i can go back in september and do the work and take the exam in january.
 

Kev

Senior Member
Hi Kskitt.. Welcome to the forum. One of the biggest hurdles is getting it diagnosed.
You seem to have lucked out there. Now that you know what it is, you can get on with treating it appropriately. Good luck with school, and pop in whenever you want to chat, pose a question, make a comment, or just want to vent your anger, okay?
 
just a quick update.
Been to my consultant today and he is very pleased with how im doing on the prednisolone, but he wants to swap me onto Budesonide, which he gave me the prescription for which i am to start on tuesday. In the long term he wants to put me on azathiopine.Next seeing him in 8 weeks time.

Really glad that things are doing well, and i just hope that these medcations are going to mean i can live life normal again
 
Good luck in college. I am starting in August and I can't wait. I hope you can live life normally again but I believe that until the day a man or woman with Crohn's dies they will always know every bathroom in whatever area they are in or ask about it.lol

Best of luck
 
had a bit of a bad few days, first of all i did my back in, then later in the day i starte getting toothache in one tooth,then it also started up in another tooth.So went to the dentist today and they said that i got two absesses (one on each), and one of them is rather large and has caused one side of my face to swell up.
Theyve put me on anti-biotics,and some other medication that is supposed to help put the good bacteria back that the anti-biotics have taken out, but apparently it isnt sold in this country :ymad:
 
V

vikkytoria

Guest
hi,
im 17 and got diagnosed 2 months ago and it also took awhile for them to diagnose me BUT things are taking quite awhile to sort out my medication. got to go in to have a colonoscopy on the 19th , seen my consultant on the the 10th and what a **** he is. looked at me as if im using my crohns to stay off school and all this and that, and wanted me to be put back to 20mg of predisone etc... but i dont want that as it makes me put on weight and had tremendous mood swings. but in my hospital i doubt ile see him ever again. hes my mums consultant and shes only seen him twice on 10 years and one of those was with me. but im struggling with the whole why me etc... and to make it even more fantastic my fiance has been having trouble with his bowels and has suspected ibs but to me it seems worse but im not going to tell him that. he has a docs appointment on tuesday as he had his blood taken last wednesday (1st time ever he was quite scared bless him) so well see then. hopefully its just ibs (not too sound nasty but id rather him have that than crohns etc..)
KSKITT if you need to chat and stuff personal message me as were roughly going through the same thing and the same time.
:)
 
just a quick update>>>>
unfortunalty i was taken into hospital friday morning and have come out a few hours ago. My iron levels had become dangerously low and was told that i needed a blood transfusion, but my temp had risen to about 39, so they couldnt do it til it went down to normal.Theyve put me on antibiotics again to sort out the infection.
 
K

kpratte

Guest
Do you take daily iron supplements? I've been in the same boat as you and have been taking iron daily for as long as I can remember, helped quite a bit.

- Ken
 
nah, which is really bad because i kept on being told that im aneamic, them in not, then i am,and every time i get asked if i am on them and i say, but they never do anything
 
M

Mitchy

Guest
I also have to take daily iron supplements and have done for the last year and a half. I have also had to take folic acid for the last 3 months. Despite this I have had to have 3 blood transfusions, the last being in May!!!!

:ybatty:
 
Crohn's in Childhood Research Association
Body: if you want to buy a raffle ticket please let me know. They are 50p each and the prizes are as follows:

1st prize : Two tickets to any of the 2008 County Championship matches plus car pass for the day

2nd prize : £10 Pizza Hut Voucher

3rd Prize : £5 Peacocks voucher

4th Prize : £5 co-op voucher

More prizes might be added later, but i am still awaiting to hear from other companies.

Please tell your friends and family
 
K

kpratte

Guest
kskitt said:
nah, which is really bad because i kept on being told that im aneamic, them in not, then i am,and every time i get asked if i am on them and i say, but they never do anything
It's one of those things that won't change overnight, your levels will change very slowly. Hopefully for the better.

- Ken
 
M

marie

Guest
Hi! i'm also 19 and was just diagnosed with crohns about 5 months ago. Mine seems pretty mild though, just the pain, weight loss, a bit of fever and constipation. At first the doc said it might be IBS but a few months later they felt a lump, had an ultrasound and a blood test, then ct scan and finally a colonoscopy, which diagnosed it 100% as crohns.
Have been on sulfasalazine and prednisone since, they worked really well for me and i'll be off prednisone in about 2 weeks =D and haven't had any pain for a few months! It's amazing being able to eat without constantly getting bad pains!
I've been getting a lot more headaches lately though, I think from the sulfasalazine, did this happen to anyone else?
 
i would be careful marie, i have been off prednisone for a few months now, and i thouht that i could eat what i want, but now the pain has returned so i think i got to look carefully at what i eat
 

Kev

Senior Member
yeah, Marie, I agree with kskitt. Simply because some of the more evident symptoms go away due to meds, doesn't mean you are cured, and can SAFELY eat anything. Its one of the downsides of this illness.. Meds will alleviate symptoms, often even cause a remission, but you have to tred cautiously, and not put undue strain on GI system.
 
is this my crohns flareing up - my right side is all hard and lumpy, and i think it could be it flaring up?
 
If you are also getting severe pain in the right side, I suggest you see your doctor immediately. This happened to me 2 months ago. I started having pain and hardness in my lower right side, till one night I couldn't handle the pain and was rushed to the ER. The CT scan showed that my ileum was severley thickened, and the doctor brought me back on prednisone. Now a month after starting Prednisone, I'm feeling better, although there is still some pain, and trying to wean off now..
 
W

windowfitter

Guest
marie said:
Hi! i'm also 19 and was just diagnosed with crohns about 5 months ago. Mine seems pretty mild though, just the pain, weight loss, a bit of fever and constipation. At first the doc said it might be IBS but a few months later they felt a lump, had an ultrasound and a blood test, then ct scan and finally a colonoscopy, which diagnosed it 100% as crohns.
Have been on sulfasalazine and prednisone since, they worked really well for me and i'll be off prednisone in about 2 weeks =D and haven't had any pain for a few months! It's amazing being able to eat without constantly getting bad pains!
I've been getting a lot more headaches lately though, I think from the sulfasalazine, did this happen to anyone else?
hi marie i was diagnosed in july.i have had as lot of probs with meds including hedaches i keep being told its because im dehydrated and i need to drink more water im on predisolone sulphersalzine anzithioprine and lansoprosol they trying to get me off the predisolone it causing me too many problems
 
went to my gp this morning and i was told that it could be my crohns flaring up, so they have booked me in with my conultant this afternoon
 
D

DarrylP_Ajax

Guest
kskitt said:
went to my gp this morning and i was told that it could be my crohns flaring up, so they have booked me in with my conultant this afternoon
How did your appointment work out?
 
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