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Leanne1994

Leanne1994

Joined
Apr 4, 2014
Messages
83
Hello,
My name is Leanne a 19 year old girl and I live in the Netherlands. So i'm sorry if my english isn't that good.

It all started in June 2012, It was a sunday and I had a bbq planned with my school. My tummy was very sore and i didn't want to go to the bbq. But I thought it will probs go away soon. At the bbq i didn't eat anything because of the pain. I had loads of painkillers but it didn't work so i went home.

It was the week that you were able to retake your schooltests so i didn't have time to be sick. In 2 days i lost 7 kilo's. So on wednesday I phoned the gp and I had to come immediately. I had to go to hospital to get my blood checked. I had to phone the gp back on thursday, so I did. I had to come immediately, the results from my blood weren't good. She thought there was something wrong with my appendix but she wasn't sure. So I had to go back to hospital again but this time it was urgent. I stayed in hospital untill sunday, but they couldn't find what it was. I had an exploratory operation and I did have a ultrasound and they saw fluid

They took my poo and checked it and they found a bacteria. The bacteria should go out of your system in a few days. So i waited but 2 months later it was still there. In august they found that I am lactose-intollerant.

But eventhough i don't take lactose I still had a sore tummy and loads of diarrhea. In september I had a coloscopy, but they couldn't find anything. So i just had to live with it. I went back to the gp a few times tried different drugs but nothing helped.

In the summer of 2013 i changed gp and I went to my new one. She thought I had colitis, i finally thought yes maybe i can finally do something about it. I also changed hospital. I had to go to hospital, got an ultrasound and he took my blood. But there was nothing. I didn't believe it so i wanted another coloscopie. He didn't want to but because I wanted it i got it, but again nothing. That was last october/november. Again i got different drugs but nothing helped.

I am fed up with it.
My symptoms;
- i have diarrhea everyday about 2-5 times
- i have pain at the right buttom of my tummy
- sometimes i only poo mucus or mucus with blood
- load of times I have blood in and on my poo and on my toiletpaper.
- the diarrhea are different colors from green to really dark black.
- sometime I can see my food in my diarrhea
- there is fluid coming out of my bum it is not sweat
- my heartbeat is high between 100 and 110

And I have loads of joint pain, aspecially in my fingers. I can't even peel a patato or an apple, I can't hold my phone for to long, or holding my pushbike.
But also my knees and wrists.

I don't have hemorrhoids

I probably forgot loads, i will answer everyones questions.

I am so tired and fed up with it.

Thank you!
 
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I am sorry you are sick. I am not a Doctor so I can not tell you what you have, but I will say that your symptoms are not normal. Have you visited a Gastro? Did you have biopsies done at colonoscopy? What kind of tests they did? What medicines have you tried?
 
Hello, I am not a doc but I have had crohn's disease for a long time. Your symptoms sound like all of the same that I have had. I know that crohn's can occur anywhere from the mouth all the way through. My cousin has it in her throat as well as small intestine. I recall that she had a tough time getting proper diagnosis as well.

I am sorry you are so sick. I think you need to push it further with your doc. I was told that I needed mental help by the first doctor I told about the awful pain and other symptoms I was having. For awhile I wondered if I was going to die soon it hurt so much. Back then there weren't many GI docs except for in large cities. I finally got to a GI clinic and went directly to surgery from there. They removed 3 feet of small plus half of my colon. Symptoms were gone for about a year.

The symptoms that you are having are serious and I hope you find out what is going on very soon. Maybe the problem is further up in your system than they are looking with colonoscopy?

I wish you well. If you have any questions there are many people here that can answer them. This website is good.
 
I typed something but now it is gone..

Thank you both so much for replying so quickly!
I am so sorry that you both have to deal with this aswell
I have had a colonoscopy with biopsies. I have had a ultrasound twice. A colonoscopy twice and a lactose test.

I haven't visited a gastro or had one. My gp send me to hospital for that because she thought I had colitis. But ofcourse hospital wasn't co-operating.

Because my blood was okay a bit higher but not extremely and i don't have fever. I never have it even if. I feel really sick I never have fever. And the couldn't find anything with colonoscopy the call it IBS. I do not agree with this.

But because they call it IBS, I don't really get drugs. I used movicolon, pepermint oil, antidepressants. And something else but I can't recall what it was.

I wish there was a private clinic in Holland where I can go to. And that they just check everything.

Thank you!!
 
All I can say is that the symptoms you describe are very similar to crohns. You should definitely find/get a referral to a GI (gastroenterologist) doctor and make an appointment. It's one of their specialties
 
I'm so sorry to hear you're having such a tough time with all of this. I have Crohn's and all of what you have described sounds like it to me. I don't know what the protocol is in Holland but where I live (UK) they can do a test called Faecal Calprotectin that measures inflammation in the stool. Basically most people it should be low but if you have IBD it is high and a good marker for further investigation. It is a relatively cheap test and coupled with bloodwork a good basis for further investigations. It is really hard to fight your doctor but try and keep pushing to see a Gastroenterologist. Research online for diagnostic tests and challenge him/her as to why they aren't doing them. Good luck to you. You know your own body and when something isn't right.
 
Leanne, in the netherlands you have a right to a second opinion.
But in your case, as you haven't been referred to a specialist, I would ask for that first.
Ask your huisarts (GP) to refer you to a specialist, to do more test.
Ask for he Caprotectin test as well, your GP can refer you for that one, but it isn't very well known with most GP's!
If you are still having blood in your stools you need to be examined more.

You can take contact with http://www.crohn-colitis.nl/ for more info. (patientenvereniging)
 
I have had a second opinion. I first went to a normal hospital and then I went to an academic hospital. I have seen a specialist but I have only had a colonoscopy down under, and not through my mouth.

Sorry if that was not clear!

Thank you all so much for supporting me!!

Btw my family lives in the UK, I am going there in may, do you think I can do anything there? I don't think I have a chance but maybe I can see a doctor there if I have really bad tummy attacks?
 
That is what I thought and a couple of doctors said that as well. But the specialist said it is okay probably a cut or something. Is what he says.
 
I would ask your GP to do more blood tests, stool tests to check your inflammatory markers. I would also keep a note of all your symptoms and take it with you to the GP.
If you don't have a definite diagnosis I don't think they would do anything for you here in the UK. You can see a GP as a visitor or go to A&E but they will no doubt just try to help your pain relief and doubt they would schedule diagnostic procedures for you :-(
 
Leanne, I don't think the UK system will be able to help you if you're just there for a holiday. There are long waiting listst there. (much longer than Nld)
But in an emergency you can always call a doctor there.
I would just visit your own GP again and tell him again what your problem is and that you feel that you are not taken seriously.
 
I am so upset and it makes me so frustrated :(.
I read loads of comments that they say: "they can't find crohn with a colonoscopy" not everyone is the same. Why don't they look any further then for me?
Even my mum doesn't think I have something else than IBS and I just have to deal with it.
I really don't know anymore, and I found a private clinic who does MRI-scans, but it is 400€, I can't afford that I am a student.
Why do the doctors not want to help me :(.
I have 2 GP's, it just depends on which day you come. And the lady Gp send me to hospital for a endoscopy through the mouth, but why did the hospital gave me a colonscopy then...
pffffffffffffffff :(
 
Leanne, what was the answer of this lady GP to the question "why a endoscopy?" Make an appointment and ask... Make a list of your questions, your fears and all other things you need to know and say that you must have an answer to all this.

Further make a summary of all that has happened, what kind of examinations and what kind of problems and how often.
you can lodge a complaint about the treatment with your zorgverzekeraar (insurance) and ask them to help you through this maze. But they need facts from you.
 
Hi Leanne,

I'm sorry to hear you have been having such a hard time getting a diagnosis and that you are dealing with all those symptoms. :(

I can tell you from my personal experience it can take time to get a diagnosis for some annoying reason. I was hospitalized 3 times with bowel obstructions and infections before I finally got a diagnosis. They did a ton of crazy tests on me and on my second colonoscopy years in to my symptoms they finally could confirm Crohn's. Some other tests I've had were CT scan, MRI, barium enima, endoscopy, blood tests and a couple oddball ones I don't even remember. There is also the pill cam, which can help but my insurance didn't cover it, so I never tried that one. You might ask about some other tests like these and if they would help you get a diagnosis, so you can get treatment and relief!

I hope you can get answers soon and I hope you feel better soon as well.
 
I'll phone the gp this week, and see what he has to say..

And I will deffo say about, that a lot of people have crohn eventhough you can't see it in a colonoscopy. (I think I will, I'm always scared to say things like that because they know more about it)

Thank you both!
And I hope you all are doing okay!!!
 
I added this to my story: And I have loads of joint pain, aspecially in my fingers. I can't even peel a patato or an apple, I can't hold my phone for to long, or holding my pushbike.
But also my knees and wrists.
 
Hello,
I know the symptoms your getting are hard to live with and make you feel terrible. After 2 years i'm still trying to get a diagnosis. Its a very long process sometimes but just push to get the tests to make sure. Ask to see a Gastroenterologist and dont take no for an answer. Also i think an endoscopy is probably your next step to check nothing is going on with your small bowel as colonoscopies can only see the large bowel and wouldnt rule out anything on your small bowel, and ask them to take pleanty of biopsies!

The other thing i'd ask your GP is have they checked your thyriod when doing blood work. Hyperthyroidism can cause fast heart rate and diarrhoea. Whilst no it doesnt cover all your symptoms, it might be worth checking as if there was anything going on it might be making it worse for you.

As someone has already said a bit further up, British A&E is unlikely to do anything but give you pain relief. The GI's over here seem backed up and were having to wait up to 6 months to see a GI between appointments. So as far as it goes with getting a diagnosis you would be much better to push your GP now as the British health system is unlikely to give you any answers, only temporarily relieve pain, which isn't what you need.

I'm sorry your feeling so bad. Just keep pushing with your GP and put your foot down. Tell them you want an endoscopy of the small bowel and your not going to leave until you get one. They can't rule IBD out until they have checked both ends of the bowel. Just don't give up, if you tell them exactly what you want and that your not giving up until you get it, you might get somewhere. Good luck and keep us all posted :)
 
Hey Leanne I am having the same problem. With the joints, the pain is unbearable and I know what your going through, my fingers are swollen and my knees are shot, along with my feet. No one is doing anything for it and I am extremely frustrated. I'm sorry for your pain and I wish I could help but if anyone has any further information please comment
 
Thank you both,
I have to phone the GP this week and then I will try to get a ct scan or something. Because if I want a endoscopy i first have to go to a specialist in hospital. And they weren't really helping me last time. I am going crazy.

I am only 19 years old, and when I miss school they talk about it. That i am not really sick blabla. Just because it doesn't have a name doesn't mean I am not really sick.

Megan, what do you do when your joints are really killing you? I have it in my shoulders aswell.

Rosanna, thankyou i'll check in a min what it is. Because it is not normal for a 19 year old to have a heart rate of 100-130 when i do nothing.
I think i have a fast heart rate becauseof something in my bowl..
How do you cope without a diagnose?

Thankyou!!
 
Well i'm only 17 and its been a very difficult couple of years. I have a very fast heart rate, pulse varying between 110-140 at resting. Which ovbiously isn't normal. They checked my thyroid first to rule that out but now i've been referred to a cardiologist as they need to rule out underlying conditions with fast heart rate as it can be very dangerous and i was told can cause sudden death syndrome, which is why they are pushing it in me, also i have family history of heart problems so they decided that it needed checking.

As for coping without a diagnosis, well i have to take it day by day. Get some good anti-diarrhoea medicines, i'm currently on codeine and loperamide, but they wont put you on them for long. There is also something called cholestyramine which i know many people find very useful for diarrhoea relief. As for pain relief thats more difficult, paracetamol can be useful to a certian extent and i use codeine for it as well as diarrhoea relief. You need to take each day as it comes and fight the hurdles on that day, somedays i don't cope at all, i'll end up staying in bed/in the bathroom because i'll be so rough. I work part time at the moment as i was exhausted in full time and was making me worse. Just don't over do it. I had the 'your not ill' card thrown at me the whole way through high school. Ignore it, you know your ill and you dont need there 'approval' to be off ill. You know your body and you can tell your own limits, don't push them as you really will make yourself worse.

If you need anymore help, advice or just to vent it off please feel free to send me a personal message and if i can help i will. There is also people on the undiagnosed support club that will be able to answer some questions as they are undiagnosed longer than me and have a lot of knowledge on meds that can help when your undiagnosed. But push your healthcare professionals, as they need to at least rule it out best as they can. Best of luck with trying to get the tests you need :)
 
Hi Leanne, I was also diagnosed with Crohn's at Age 19, I'm now 23 but i had some of those symptoms you had the first few years.

- i have diarrhea everyday about 2-5 times (this never went away for me but it depened on what type of food i ate, start recording how certain food affects it, usually for me its spicy food that gives me diarrhea other than milk but thats just me being lactose intolerant)
- i have pain at the right buttom of my tummy (i had surgery since my intestines were inflammed after that it was gone)
- sometimes i only poo mucus or mucus with blood ( if you're pushing too hard sometimes it bleeds just calm down is what i noticed it helps the healing of the openings)
- load of times I have blood in and on my poo and on my toiletpaper. (same reason as above, but diarrhea is the main reason i had blood when wiping, change diet/food eaten will affect and soften the stool)
- the diarrhea are different colors from green to really dark black. (dark black usually are dead blood cells on the stool, green is probably just un digested vegetables)
- sometime I can see my food in my diarrhea (with Crohn's we can't digest very well)
- there is fluid coming out of my bum it is not sweat (fistulas are the cause of this, stop trying to force out poop and it'll help heal slowly, took about 2-3 months for it to heal for myself)
- my heartbeat is high between 100 and 110 (exercise more actually helps maintain weight, and digest better as far as ive been doing it, feels great too)

:) hopefully my experiences will help you this is my first post here after reading your story since i know how it feels at age 19 during school, had to drop out of college and all. Don't give up all you need is change a few things you do in daily life.
 
Hello Rosanna, I checked what you said what it could be, but I don't think I have it. I am so sorry that you also have to live like this. Painkillers don't help, so I don't take them, why should I put drugs in my body if it doesn't help. Waist of money, and I don't want meds in my body if they don't help.
Thank you!


Kerby, I am not diagnosed with crohn, they can't find anything in a colonoscopy so they said I have IBS.. And I don't agree with it.
And I don't push my poo out, if it doesn't come out, it doesn't come out. But normally it comes out easy. So the blood is not there because I pushed.
And also the green is not from veggies..
I don't do any sports, but I do exercise, i walk aprox an hour every day, and sometimes I go on my pushbike.
 
I would suggest for coping purposes to try an anti diarrhoea medicine, i didnt want to take tablets but they are my only coping mechanism right now, so even if pain relief isn't wanted, something to slow the diarrhoea helps with coping everyday :)
 
I know you can take anti D. pills, and I have them. But that is not my point. My point is that the doctors don't really cooperate. That all my symptoms look like IBD and not IBS. But they are to lazy to do anything. Why would they? It's not their health we are talking about.
And I don't want to take painkillers because they never help, why take tablets if they don't do any good.

I am so frustrated!
I will phone the GP tomorrow, I am always so scared, because I don't know how to handle it.
 
I have a appointment at my Gp on thursday morning,
It is for my fast heart rate, so I will hint him, that I might have a fast heart rate because of my tummy being so painfull.
 
You have just got to put your foot down and do it now... don't hint with things because unless you say it it wont make a blind bit of difference. You have to say exactly what you want. If you want an endoscopy to check your small bowel so they can rule out IBD then just say to your GP i want to be refferred to a specialist and i want an endoscopy. You will have to tell the specialist you want an endoscopy, whether you feel like they care or are being helpful physically say 'i want an endoscopy and i'm not leaving without an appointment or referral for one'. You just have to say it because they dont seem to take the hint, just say it straight out as your more likely to get somewhere if you tell them what want and can justify it with symptoms and wanting to rule IBD out before they throw you the ibs card. Just put your foot down now, sometimes thats what you have to do. Good luck with the GP :)
 
Hi Leanne! I hope you are feeling better. I totally know how you feel. When it first started I went on the BRAT diet for a week. It calmed my stomach a little. The diet consists on Bananas, Rice, Apples, and Tea. Tea is especially helping me now. Whenever my stomach is bothering me I just drink a nice cup of peppermint tea.
 
I find the peppermint tea is the best! I hope that its not true :( I've become obsessed with tea at the moment. They say to stay away from sodas and juices because they are tough to handle. I have a lot of ulcers in my stomach so I'm hoping they heal overtime.
 
my sister in law has crohn disease and she can't handle hot drinks.
I hope you can keep drinking tea!! I hope so for you aswell! Stupid tummy's!!

I have to go to the GP tomorrow morning :(
 
I feel for you, Leanne. I think many of us have been there before. I went through a period of nearly a year and a half without any period of remission. I'd wake up, lose a pint of blood in the bathroom, and spend the next 6 hours pathetically recovering, laying on the floor. It's a terrible disease. But after much consultation with my doctor I have been able to achieve periods of remission. I wish you good luck on your journey
 
Thankyou I hope you are doing okay!!

I am in hospital now to get my blood taken. I went to the male GP and he doesn't believe I have IBS.
 
Yeahh i was so relieved, no I hope they can diagnose me with something and help me. It is not that I want crohn or cu but then I finally know what it is and what I can do. And if it doesn't work i can try different things!

But still I am to scared that i wont get a diagnose.

Thankyou
 
Just dont forget, even if there is no diagnosis after further testing there are ways to control your symptoms and get a normal routine. So don't lose hope no matter what!
 
I agree with RosannaKate! I think for this we all need to keep positive and I think that's what will help. The treatment sucks but I'm very hopeful that I will see the light at the end of the tunnel. I am so ready to be in remission. I hope you are feeling better Leanne!
 
No i am feeling terrible I couldn't move this morning because of the pain. And I had to go to apprenticeship. It was a horrible day. I hopenthe results come back soon.

And I have something in the back of the bottom of my mouth the rightside, it hurts to talk, to eat and to swallow. And it just hurts being there.


I hope everyone of you is doing well! And keep the hope and faith!
 
I got my blood results back today. And they found parasites (again) in my blood. Now I have to get my stool checked.
 
And I have to go back to hospital I will get a letter or receive a phone call in the next few days..

I am quite scared..
 
Sorry you're going through such a rough time and feel so scared.I hope you get some questions answered soon.I'll send some good thoughts your way.
 
Yes I am so scared that they wont find anything and i have to live like this for the rest of my life, without knowing what it is, or what to do about it.

Thank you so much!!
 
I recently started a product called VSL#3. It's a probiotic clinically proven to help people with IBD.... Seems to be making things a little better for me and you do not require anything from your doc to get the product..... Some people claim it's fixed them.... Just start on low dosage.....
 
They found a parasite in my blood, so they wanted to check my stool. But my stool was normal..
Anyone an idea what it is?

Still waiting for the letter from hospital about the appointment..
 
I'm sorry that you are still looking for answers. Did they tell you what the parasite was that they found in your blood? Have they mentioned that this may be causing your symptoms? What are the next steps that they are recommending? As long as you are experiencing symptoms I would keep pushing for more tests. Sometimes the docs have to think outside of the box and need prodding from the patient to do so. I would definitely have them follow up on the blood work.


Hope you get some answers soon!
 
I did some blood work and thats when they found a parasite (they never told me which one) thats why I needed a stooltest. And they found nothing in my stooltest. But I am going to hospital to see a specialist for sure. This was just a pre test. But I am still waiting for the appointment.

In don't know which test the specialist wants to do..

Thank you
 
I have to go to hospital on the 23rd. I had to quit my job, because my body can't handle it.. Now I havo no school, no work, no income..
 
Is there someone that can go with you to your appointments? A friend or family member or loved one? Or is there a buddy system or advocate service available at your IBD society over there?

Sometimes I think it helps to have another person there that could ask questions and back us up and be a bit more insistent than some of us naturally quiet people can be. When I was younger I would sometimes take my Dad or Mum and Doctors sometimes seem to take younger females problems more seriously when they are backed up by someone (especially someone who is not easily pushed around, and feeling unwell to start with!)

Best of luck with your journey. I hope you get some answers soon.
 

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