Hi everyone, my story and awaiting diagnosis

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Joined
Jan 31, 2012
Messages
9
Quick update 23/02/2012

Hi everyone,

I am currently undergoing tests to identify exactly what is wrong with my health issues i have.

I am 18 years old from the UK and have suffered with stomach related problems for i would say nearly all my life, that is from what i remember and the illnesses i picked up as a baby (Gastroenteritis) from what my mum told me about.

From the age of around 7-11 i suffered with very bad stomach pains at night time which caused me to get out of bed nearly every night and walk into the room were my mum was and say "i cant sleep, my stomach really hurts" after this continued for the first few months we eventually had a allergy test done which showed up that i am allergic to alot of things, main items including dairy and citrus products, and that cutting these foods out did seem to remove most of the pain. Since that age to now i have continually suffered from random bouts of diarrhoea, however over the last 2 years these bouts have become significantly worse.

Again at first we looked only at the logical answers as at the time i worked in a butchers so i automatically put it down to picking up illnesses due to being the cleaner. Its now been nearly 2 years since i quit the job because of illnesses and ironically the illnesses have become worse.

The pain in my stomach and chronic diarrheoa first really kicked in around september 2011 and it has been so bad i have been unable to live a normal life since early November 2011. The diarrhoea mainly happens late at night, during the night or first thing in the morning, but througout the day i have constant pain despite taking Buscopan tablets.

The night time flare ups are unbelievably painful and no one i talk to can comprehend how bad the feeling of not being able to sit down or lie down is but at the same having your body curl up in agony with the only release being running to the toilet and being stuck in there for an hour at minimum.

I have finally been referred to a specialist and have my first barium follow through on thursday this week, after this i have a colonoscopy in a few weeks time. The specialist who saw me believes at the very minimum i have is very severe irritable bowel, but when he asked me "when you get a flare up, how many times in one night would you need to use the toilet" and i replied "at worst it has been 12x in 1 hour and it wouldnt have stopped until i take diarrheoa calming tablets." he was in absolute shock and my bloodtests showed that the following day after that flare up my kidney protein levels were at 0.2 when bloodtests a few days later showed my regular kidney protein levels at 2.4.

I also have unusual syptoms which accompany my stomach problems throughout my life, i regularly get eye problems, infections, bright red eyes and continual blurred vision. Many times my eyes have been tested and there is no reason why this happens as my eyes are in perfect condition. I also have a randome inflammed area of the gum which my dentist has never been able to identify the source as i have perfect teeth and gums except for that one area.

(I know this was a long read but it was just nice to actually type it out and share it for once)

I hope within the next 2 months i will have a prognosis for what my condition actually is and then hopefully i can get my life back on track and go to university at last !!
 
Last edited:
Hi there and welcome! Based upon everything you've said, I'd bet good money that you have some form of IBD though I hope I'm wrong and it's something more benign. I'm so glad you're getting the barium follow through and colonoscopy as that should provide some of the answers that you deserve.

Please keep us updated as to your progress. :)
 
Welcome McColl ... good luck with your tests and I hope you are able to get help! Please keep us posted.
 
Hello and welcome, I do hope that it is not IBD but based on your symptoms..... during some of my worst times leading up to my diagnosis I too would spend most of the night on the loo, thank heavens I had an ensuite at the time. I would have to be up at 5am to get to work so I got so tired that I would end up having little naps whilst sat there waiting for the next go round. The barium should be able to show if something is going on and whilst the colonoscopy is not the most wonderful thing in the world I would say it is by far the best procedure to show what is going on inside, the other plus is the doc is able to give you a fair bit of info straight away. Has the doc given you anything to at least ease things whilst you wait for these tests to be done?
 
Hiya McColl
and welcome

I'd place an odds on bet at Betfred you've got an IBD! I really hope not, but at least if you have you'll get an appropriate meds regime and all the support to guide you through this.
good luck with the tests and lotsa luv
Joan xxx
 
Thanks for the comments and your thoughts :)

@Angrybird - I have had regular appointments with my local GP for around 2 months before being sent to see a specialist, i have tried mebeverine but they didnt seem to make much difference, and now i am on Buscopan to stop the abdominal cramping and also drastically changed my diet. The pain although more bearable is still consistent throughout the day and unfortunately the specialist has not provided me with any other possible medication.

I also have my barium follow through in around 7 hours from now so will just be happy when its over and done with due to comments i have read about how bad the liquid tastes.
 
Good luck today! I suppose one theory is that as you have not been given any meds they will not 'hide' anything whilst the tests are being done....
 
Just finished my barium follow through and actually quite enjoyed it haha. The acidic shot before hand was the much worse than the barium drink which i found pleasant with the strawberry flavour, took about 30 seconds to drink and that was with a bit of a pause to get a taste for it, the guy next to me was nearly being sick from it.

Only took 40 mins to pass through my system then got to see the doctor who poked my stomach with a wooden spoon, one part on the right was very painful to press against and all the real time pictures focused specifically on the right hand side.

Now that im home i just feel really ill and my stomach pain is alot more painful at the moment, hope it dies down a bit in the next few hours
 
barium

Barium is our enemy!!! It goes through our intestines like cement! But at least the test is over and you can expell (hopefully not too painful) that nasty stuff! :ytongue: Good luck and hopefully you will be on the right medicine soon and feeling better! Keep us updated......:rosette1:
 
Strawberry! Alright for some! I had stuff that tasted like aniseed, it was disgusting. You may find for the next few days you get white poops that don't tend to flush away very easily (made things interesting at work I must say :biggrin:). Hopefully things should settle soon with your tummy.
 
since yesterday the barium had a strange effect on my making me incredibly tired and i slept for aorund 5 hours yesterday afternoon which is very much unlike me. Hoever feeling back to my normal (well as normal as it gets) self. I got the majority of the barium out hours afterwards but only been once today and learnt what barium can do and now my toilet is requiring flushes every 30 minutes haha.

oh the joy of barium
 
Hi everyone

quick update since my last visit, been having an ok few weeks and last night was the first bad bout of diarrhea for nearly 6 weeks which is a massive improvement, the barium results came back as normal and i have my colonoscopy on tuesday for the first time.

the main worry is still the pain but also only just realised how much weight i have actually lost, i was close to 18 stone at the start of january and by the end of january when i was weighed in hospital i was down to 103 kg which is 16 stone 2 pounds, so in around 3 weeks i have lost over 1 and a half stone in weight, i never noticed the rapid change in weight loss though so i am going to have to inform the doctor op how quickly i am losing weight. Since then almost a month ago my eating habits have continued to get worse so i would not be surprised if i have lost even more weight since then :S
 
Thanks for the update. I'm glad the follow through was normal! Good call informing your doctor of the weight loss. Good luck with everything! :)
 

Latest posts

Back
Top