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New to the forum - undiagnosed, do these sound like crohns symtoms?

Hi all,
I'm new to the forum and I wanted to share my story. I was wondering if you could help me!?
I'm a 15 year old girl. I've been having symtoms since October 2011 and I still have no diagnosis. My first 'episode' in October 11 I was admitted to hospital with severe stomach pains, I was discharged 2 days later with 'constipation' (I had diarrheah?) and they gave me some fibergel. This increased the severity of my symtoms and I was now having diarrheah 2-3 times a day sometimes containing blood and mucus. I then had a colonoscopy and endoscopy which revealed a small patch of inflammation in the large bowel, some in the stomach and some inflammation from the biopsys they took. I was then given pentasa and omaprezole (sp?). I didn't think pentasa or omaprezole was working so the GI took me off them , my symtoms then got a lot worse. I was going to the toilet 6+ times per day with blood. This brings me up to recent, my GI now says there is a fine line I determining what is a 'normal' amount of inflammation. I am currently on nothing as he suggests its ibs. I'm currently quite unwell, I'm missing school and it difficult to get out of bed I'm that tired. I have 10+ diarrheah bowel movements per day and sometime all that comes out is bloody mucus (sorry!). I also have quite a few mouth ulcers that never go away and I feel so weak all the time and I don't want to eat anymore because it just causes me so much unbearable pain , to the point where I just lay curled up in a ball crying. I'm have started suffering with haemmorhoids and all my GI says is its IBS, there is nothing we can do.
What do you think this is? Any suggestions to help me!:sign0085:
I'm seeing the GI at the end of next month, I'm starting to feel really depressed about this now because sometimes I can't even make it to the toilet.:frown:
Thanks for reading my very long story !
 
Welcome to the forum I'm so sorry you are experiencing so many problems at this time.

Alot of the symptoms you list don't occur with IBS but do occur with IBD. Could you talk to your parents about seeking out a second opinion? Preferably at a Childrens' IBD clilnic? If you are still having so many problems and the GI you currently see says they can't help you then I think it might be advantageous to look into finding another GI.

I hope you find relief soon.
 
Hi Clash,
I am from the UK and I don't think my GI would let me get a second opinion, neither would my GP. I actually don't like him very much he is so laid back and doesn't really seem to care about what I'm telling him. My GP refused me any painkillers and made out as if I was lying. I'm just going to have to try get through to them. :thumbdown:
 
Elle97

In the UK you get what's called patient choice, the doctors don't tell you about this! But if you ask for it they have to refer you. My GI doctor makes me feel like a waste of her time, I'm going to see her on Wednesday to start treatment and then ask to be referred to Oxford as they specialise in Crohns. They don't like to refer people as it cost more money but they have to if you ask for it.

I'm a member of nacc (Crohns and colitis UK) have a look you may get more answers there. They also have a number you can call (think its open in the day).

Good luck.

I hope you get diagnosed soon.
 
I'm going to tag some people from the UK as they might can better assist you, umm let's see I think Stephyjane is from the UK, Sascot, they both have kids dealing with IBD, I think. They might can help. I do hope you find some answers soon.
 
Hi Elle97! I'm sorry for what you are going through right now.
I'm going to 100% agree with Clash and say you need to be seen by another GI specialist. My symptoms started at 12 and I had my first (and so far only) surgery at 15. I know what it's like to have these symptoms at your age. Because of that, I also highly recommend finding a pediatric gastroenterologist.
Good luck to you and hang in there!
 
Hi Elle97 I am so saddened to hear what you are going through. It sounds like you are having an awful time. My daughter Ella was diagnosed last year at 9 yrs. we have a local GI ( there is only one paediatric one) but they have to share care with one of the bigger hospitals. Ours being Oxford where Ella is reviewed at the moment every 3 months.
Are you bring cared for by the paediatric team? Also you should have open access to the children's wards at your local hospital for when you need emergency treatment.
I agree with contacting the Crohn's and Colitis association for advice. You need to talk to an understanding dr or Ibd nurse.
If you feel you are getting nowhere still, if you feel awful take yourself to A&E and insist they help you.
Do you have anyone that you can talk to at school, the nurse or head teacher.
I'm just trying to think of everything off the top of my head.
I really hope you feel better soon xxx
 
Hi Stephyjane,
Yes, I am being cared for by a paediatric gastroenterologist. Even though I frequently have bloody stools he insists its ibs. I have been to A&E several times before and they get the same GI doctor down who just gives me painkillers and then leaves. I think I might talk to someone at school that's a good idea:thumleft:
Thanks for your advice, me and my mum are considering going to the hospital today after passing a lot of blood last night and this morning:thumbdown: and I'm in quite a bit of pain.
 
Have you had blood tests done recently. Especially your ESR and CRP as these are inflammatory markers. That is how they first knew something wasn't right with my daughter.
Do you have a different A&E you can go to? You may get taken more seriously and they may run the relevant tests before your GI gets informed.
You really shouldn't have to go through this to be taken seriously.
Don't be too polite to show them you are in pain, I know with Ella outwardly she always looks well even when she was really poorly so you need to tell them over and over again how awful you feel.
Please let us know how you get on. Good luck to you and your mum, as I know how awful it is to watch your child suffer however old you are xx
 
I have had CRP done in the past but it always come up normal. Ive never had ESR done though. I think once or twice my WBC was high though. I always look ill when I'm well and well when I'm ill ! :goodluck: with your daughter by the way, I hope she's doing well :)
 
I have a serious autoimmune disorder, and my CRP and ESR are never average if you look at the statistical population they are way over) but they are within the distribution for an averagely healthy 67 yo female, so on the blood test it never says high - but there's not a study of a healthy young person who has that level. So my guess is, as you are not a 67 yo old female, and you are regularly having blood in stool, this is not IBS.

Be aware that people (possibly even you own family) may assume that you are exaggerating symptoms. Please, do not underplay it. If you are lucky, it's constipation of some odd bug you got on your holidays. But it could be other things, and to be honest, blood is the number one concern.

I'm sure others here have further detail, and good luck
 
Hey Steph,
It's not going well. Since posting I have got worse, I hardly slept last night with the constant toilet trips and dry heaving. I really don't want to eat or drink because of the pain I'm in. I think it's looking like a hospital trip today :frown: . To make things worse ive come down with a cold too:thumbdown:
 
Hi Elle it definitely sounds like you need to go. You could be dehydrated. I don't know if you read much in the Parents Forum but a lot of the parents on there really endorse the liquid diet EN. My daughter tried it it her age it was just too hard, but I know a lot of others had huge benefit from it. I know not being diagnosed makes it all the harder for you. But at least you would be getting the calories and nutrition, even if you had a couple of drinks.
I really hope you go and get seen at the hospitals and let us know how you get on. Steph x
 
I've got an update !
I decided it was best not to go to the hospital so I waited to see my GP today. My GP wasn't in (luckily I hate her) and I saw a different doctor. He saw how much pain I was in and I told him the pentasa helped (sort of lol), he put me back on the pentasa and gave me a load of painkillers. Hopefully I'll start to feel abit better soon but I'm going to see the GI on the 21st Feb so we will just have to wait till then and see what he has to say. Oh and they have lost my records (everything from tests for the pain to the surgery I had on my ovary) which made me angry :ymad: I hope they find them! I have started to drink but I'm not eating yet because of the pain I get afterwards and the amount of toilet trips I know will follow.
That's all I have for the moment :ysmile:
 
I thought id let you all know, I went to see my GI today. I saw a different man and he was great he listened to everything I said and I spent over an hour with him. He agrees that my condition has worsened and he says he will speak to his colleagues but he wants top put me on steroids and thinks its the likely option and thinks its very likely I have some form of IBD. I also have a colonoscopy and endoscopy booked :). At last someone listened so I've had 7 tubes of blood taken and he wants to do stool samples.
:ybiggrin: I'm glad it's not being blamed on ibs anymore.
 
Hi David ,
He says he's 99% sure it's some form of IBD because of the inflammation that was there previous. He says he will check with his seniors but because of the long waiting list they don't want me to suffer whilst waiting for a colonoscopy and endoscopy. He gave me a prescription for 60mg of soluble prednisolone and to decrease 5mg per week and to start when he rings us.
 

nativesith

GTA ModLeader Psx-Scene
Location
Hobbema,Alberta
Did they say or do anything about the hemorrhoids? When I had a colonoscopy done by a surgeon he seen took care of em. They can cause constipation bleeding and pain.
Have you any B12 or Iron supplements? Take that when ya bleed. I use Lax a day and it works well without bleeding.
See another Gi! that one sounds like a total nutjob lol.
It is like my case, been inflamed for too long and they say they can na find anything. i refuse to believe this is nothing. This is not normal.
I also say let them know how much pain you are in, tell them it is a ten.
What we think is a 6-8 others say is 10, I believe.
We are all too use to this kind of pain and we hide it well.
Drink some Gatorade for electrolytes and Ensure for calories and vitamins.
 
No, they said nothing about the haemmorhoids even though he got a student doctor to look and she came out looking green :ylol: I will just keep using cream until I have the colonoscopy. I don't need laxatives lol! That my problem, I have severe diarrheah causing the haemmorhoids.
 
I'm glad to hear things are improving with your doctors. Perhaps you don't need advice so much now - you sound pretty sorted with your doctors and tests - so just for the record:

You are always entitled to a second opinion, and if you develop new symptoms or your symptoms get worse, you are allowed to see another consultant regardless of how many you've seen before.
You can also register at another GP surgery, or see a different GP from your current surgery.

I can't believe any doctor would think your symptoms could be IBS! And even if you did have IBS, he shouldn't have said there was nothing to be done - he should have tried treating it!

Good luck with the tests, and I hope the meds make you feel better very soon.
 
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