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Crohn's Disease Forum » Support Forum » Undiagnosed Club » Likelihood of me having Crohn's?


02-08-2013, 09:17 PM   #1
AML
 
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Likelihood of me having Crohn's?

I apologise if this is the wrong section. I know it's selfish to just join and ask questions straight away so I promise I will contribute in the future... that is if I do have Crohn's.

I'm male, 17 years of age, overweight, rarely talk to anyone and I'm somewhat scared of doctors or any kind of confrontation. I also have a fairly bad memory.

With that said... I can't say exactly when I started to notice something was wrong, it takes me months and sometimes years to simply confront someone about anything because of the way I am (anti-social I guess). 4 Years ago I told my mum I had blood in my 'stool' (is that what I should call it? Trying to be polite). It would have took me a while to confront my mum with this so I've probably had blood in my stool for 5-6 years (11-12 years of age). She told me to let her know if it ever happened again... a few days later it did so I told her but unfortunately she just told me it would be nothing serious (my parents are undereducated, lazy and just generally a waste of space). The blood is never in serious quantities, I only recall 2 occasions on which it has visibly changed the appearance of the water to red, usually it's only noticeable on the toilet paper itself. I'd say I notice blood in my stool 1-3 times every 2 weeks but sometimes it occurs day after day. After each unpleasant experience I find it hard to walk and what not.

So that's the blood covered. Stomach aches? I have a fairly persistent stomach ache problem but I've never thought much of it. I just assumed it was related to my diet (I don't eat vegetables and until a year or so ago I did not eat meat too - I still do not like doing so but I have to). Around 2 years ago for 3 months (and also this occurred a few weeks ago, it seemed to be a one off), whenever I stood up quickly (well not quickly - pretty much the same as normal but in the terms of things...) I felt like I had been hit on the head with a baseball bat, a few times I fainted/passed out. I purchased a wrist electrical blood pressure monitor thingymagig a year ago and I've used it a few times since then. Each time when looking up what the results mean online it's said I have extremely high blood pressure and at times to a point where I should be hospitalized and have it reduced immediately. I've survived until now so I didn't think much of that either.

What made me worry was when 3 months ago whilst talking to my step-dad (this is a rarity!) he mentioned my real dad had Crohn's disease (I've never met him and I was surprised my mum didn't mention it) - or, I thought that was what he said. It definitely sounded like that, not knowing what it was I looked it up online and noticed I had some of the symptoms;
- Bloody diarrhoea,
- Severe/persistent stomach aches,
- Upper Abdominal pain,
and more recently my joints have began to ache but this is probably related to my weight. When I experience 'upper abdominal pain' this is when the stomach ache is severe in my opinion since I'm pretty much used to standard stomach aches. Another possibly unrelated thing, my heart... or chest... or... you get the point. I experience extremely intense pain on my right side of the chest and sometimes nearer the heart. My remedy for this is to punch myself as hard as I can in the area of pain which usually does the trick (well it takes my focus off of it anyway - I know this isn't the best solution).

I'm a bad writer, I've probably missed a lot of things but I'd appreciate it if someone could tell me the likelihood of myself having Crohn's and also what I should do. I've been trying for weeks to confront my parents about this but it's extremely hard for me to do so. I also don't like the idea of being probed anally by someone. Oh err, I have Eczema (I read somewhere skin rashes may also be related) and I suspect I have diabetes (I've never been diagnosed with... anything).

Any advice is extremely appreciated. Would be nice to have a day without high levels of anxiety . For any of the above pains I mentioned I've been taking a strong form of cocodomal (codeine?). It's prescription only I think but it's the only thing that seems to work. My step-dads brother gets it for something I don't know about and gives them to my mum whom I get them from.

Thanks!

Edit: Also... with my diarrhoea, I never know when I need the toilet until just a few seconds before I actually have to go, don't worry I've never soiled myself.
02-08-2013, 09:42 PM   #2
dannysmom
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Hi AML and welcome. You will find you can get lots of support here. I do not know the odd of a child having Crohn's if a parent does, but it is much higher than if your Dad did not have Crohn's. I am sorry you suffer from anxiety and it is hard to even talk to your Mom. Maybe print out some of your letter here? (btw - I think you did a great job of describing your situation.) You should really be seen by a doctor ... for many of your symptoms. Do not worry about the scopes ... you will be sedated.

You may want to enter your post in the Your Story forum too. There may be more readers there ... but you are surely welcome in the Undiagnosed Club!!

Good luck!
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02-08-2013, 10:08 PM   #3
jlm
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Hello AML welcome truly the only way of finding put is going to a doctor. Which I highly encourage you to do. Your chances are definitely increased since your dad has it. The tests are nothing to be scared of. If required they make you pretty comfortable. I've lost whole days from colonostomys. My doctors are very generous lol
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02-08-2013, 10:33 PM   #4
kiny
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Hiya. Like jlm said, the only way to know is through trusting a doctor who will diagnose you. Only a colonoscopy with biopsy is able to properly diagnose you with crohn's disease, there is no other way, so make sure you find a doctor and hospital you trust.
02-08-2013, 10:48 PM   #5
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AML so sorry you are going through all this alone. So glad you found your way to the forum to ask for help and guidance!! Please talk with your mom or step dad...or even your real dad if that is possible. I am sure your anxiety is much of the unknown. You really need to see a dr and have the colonoscopy and tests done - they will sedate you so you won't feel a thing! Feel better soon!
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02-09-2013, 12:37 AM   #6
723crossroads
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Welcome to the forum,
My suggestion is to convince yourself that you really do have a severe illness and you need to see a Gastro. Especially in light of the fact that your real father also had crohns. Your symptoms are pretty clear that some sort of intestinal problem exists. The way I was finally diagnosed was when I had a stomachache everyday for 6 months and they sent me for a colonoscopy and endoscope and I was diagnosed with crohn's. The colonoscopy was a breeze as they put me asleep. I never felt a thing or had any after affects or symptoms. The blood could be from hemmorhoids if you are going alot , they may be bleeding. Mine do and it's blood red. If it's from up inside I heard it turns black, but that's not to say for sure it's hemmorhoids. So don't take my word. You truly need to see a specialist and get tested.If you thought you had cancer, would you put it off? No, I doubt it. So plz realize this can be serious to your health and tell them straight out, you need to go. OK? Plz let me know what happens. Good luck!
02-09-2013, 12:57 AM   #7
AML
 
Join Date: Feb 2013
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Thanks for all the replies! I just need to find a way to build up enough courage to ask my parents to take me (no way I could do it by myself - I don't even know how to go about it to be honest). My parents never take me seriously so it won't be an easy task.

Thanks!
02-09-2013, 01:50 AM   #8
upsetmom
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AML you really need to see a DR.

And if your parents won't take you speak to a relative and ask them to take you.
02-09-2013, 01:51 AM   #9
AML
 
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I have no relatives other than my mum unfortunately =(. How would I go about getting help myself?
02-09-2013, 02:02 AM   #10
upsetmom
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I'm not sure about your medical system there...Hopefully someone from the UK will read this and be able to help you.

This might be a horrible thing to do but next time there is blood in the toilet leave it and show your mum maybe then she'll take you more seriously.
02-09-2013, 02:24 AM   #11
KayleighMeek
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Hello
Sorry you are going through all these problems. If you need to sort out an appointment you just need to find out if you are registered at a GP surgery and if not go to one locally and say you would like to register with them. They will give you a simple form to fill out just name and address things like that and then make an appointment with one of the Dr's there. You will go over your symptoms with them and the likelihood is you will be sent for blood tests and refered to a specialist, if they don't do this first time be persistent a lot of people have had the problem of symptoms being dismissed and being told its IBS without any proper investigation. I know as I was told this for over a year even though I was very poorly.
Wishing you luck
02-09-2013, 09:45 AM   #12
had_enough1980uk
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Goto the GP, they will refer u to a GI specialist and it will go from there. Meds, scopes, MRI are all common at that stage.

Honestly u are best getting answers now
02-09-2013, 12:58 PM   #13
UnXmas
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Just to add to what's been said about going to doctors in the UK - you can register when you turn up for your first appointment, so you shoud be able to call your nearest surgery and make an appointment and register when you arrive. (That's how it works where I am anyway, there can be variations with different GP practices.) You will need to take some forms of identification the first time when you register - birth certificate, drivers lisence, etc. - call and ask what you need before you go. Although this might be different as you are still a minor - might be they need your parents' ID. Most GP surgeries have websites now too.

If you are at school you can ask the school nurse about this also.

The GP should refer you to a consultant - this may take quite a few months before you get to see them. In the mean time you can keep regular appointments and maybe regular blood tests with the GP to monitor you and make sure you don't need your appointment any time sooner.

Don't be embarrassed! Tell the doctor everything, no matter if it sounds embarrassing or not. It's the best way to get this diagnosed and treated, and you will find talking about it gets easier once you've done it the first time.

Last edited by UnXmas; 02-09-2013 at 01:14 PM.
02-09-2013, 01:47 PM   #14
xmdmom
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Remember doctors have heard and seen it all. There is nothing that you can tell a doctor that would shock him/her. If you have difficulty face to face,
write out a paragraph describing your symptoms and how long you have had them.
02-09-2013, 03:05 PM   #15
Scopey
 
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Hi,

You should really be seen by a Doctor! If you're worried that you're mum won't take you, have you tried calling NHS Direct? They would be able to advise, they're probably tell you need to see a GP but then least you've told someone!
If you're not registered with a GP, they do have Out Of Office GP's where you can be seen in the evenings and don't have to be registered so that way might be quicker.
If not, you could always go into A&E tell them your concerns and even if they do some blood tests, etc it's better than nothing!
If you're worried about talking to the doctor, write a list with all that's happened so you don't forget anything!
But please get seen! If you have Crohn's if will only get worse before it gets better untreated!
02-11-2013, 06:02 PM   #16
upsetmom
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Hi AML
Just checking to see how you are.
Have you been to the DR.
02-11-2013, 06:11 PM   #17
Niks
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Just catching up with this post AML

Really hope you've plucked up the courage to see a Doctor. Once someone starts taking you seriously I think you'll feel better in yourself and hopefully you can quickly get treatment for your symptoms.

x
08-06-2013, 09:39 PM   #18
AML
 
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Haven't been to the doctors yet and I honestly forgot about this forum until a few minutes ago.

I woke up this morning to find several, possibly a dozen spots around the anus (haven't managed to get a look at them yet but I can feel them). It really hurts to sit down or go to the toilet, I've generally been feeling horrible lately too.

My right inner forearm has been flooded with spots (not my Eczma), they're not bumpy spots. Looking it up online it may be Milaria (not Malaria) due to the extreme heat in the UK at the moment. I don't believe this is tied to the spots around the anus though.

My blood pressure which I spent a year reducing from a constant 200/120 to 120/80 has flared up to 140/80. I've also been forced to quit college and I'm about to be kicked out of my house as I can't get a job due to the diarrhoea problem, I lied in my original post... it does cause me to soil myself a lot.

Has anyone experienced spots around the anus? Also does anybody have advice as to what I should do about getting a job?

Thanks a lot.
08-07-2013, 12:14 AM   #19
723crossroads
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Haven't been to the doctors yet and I honestly forgot about this forum until a few minutes ago.

I woke up this morning to find several, possibly a dozen spots around the anus (haven't managed to get a look at them yet but I can feel them). It really hurts to sit down or go to the toilet, I've generally been feeling horrible lately too.

My right inner forearm has been flooded with spots (not my Eczma), they're not bumpy spots. Looking it up online it may be Milaria (not Malaria) due to the extreme heat in the UK at the moment. I don't believe this is tied to the spots around the anus though.

My blood pressure which I spent a year reducing from a constant 200/120 to 120/80 has flared up to 140/80. I've also been forced to quit college and I'm about to be kicked out of my house as I can't get a job due to the diarrhoea problem, I lied in my original post... it does cause me to soil myself a lot.

Has anyone experienced spots around the anus? Also does anybody have advice as to what I should do about getting a job?

Thanks a lot.
The best kind of job is one you can do alone like online work answering phones and taking orders for infomercials. Making your own hours. Or babysitting kids that aren't too young. Then you can go whenever you need to. Also house cleaning is another good one if you can handle it. Try Questran for your D problem. It works pretty good for me. It is by prescription. Ask your Dr. for it. Or you can try Psyllium husks. Dusty recommends them and her kids both use them.
08-07-2013, 01:18 AM   #20
PsychoJane
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Hi AML,
I think you can pretty much forget about the malaria in UK unless you went to a tropical country, it would be pretty much impossible for you to get that other than in equatorial area.

As for the spots... it can be a few things. If ever you are dealing with crohn, it would not be such a surprise to have some perianal involvement. It happens either fistula or fissures for instance.

Pressure can fluctuate from pain... maybe this is part of your issue.

One thing is sure, there is not much you can do by yourself and you will need to get advise from a doctor/ medical team to allow you to feel better.

Can you go to a walk-in clinic or something? What is keeping you from consulting? Is it just the fear of the answer you will get or is it, as you said, the fear of having to deal with "being probed anally by someone"?.

Either way it needs to be face. You can't keep up on your own without proper care if you are dealing with crohns. Trust me, that disease can take you down the road without you even knowing that you were on it at times. It is really not the case for everyone but it is not a chance to take. It worth going through these fears and getting answer. Once you will know, you will feel better either it being crohn or not.
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