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New here and not yet diagnosed

Hi everyone,

I'm new here and have not yet been diagnosed. It all started in 2005 when I was 16 and noticed changes in my bm's (frequency, loose, urgency, mucus, small amounts of blood) and was experiencing cramps and also pain in my lower-right tummy. I went to my GP and he (without any examination) said it was IBS and sent me on my way with a script for membeverine (sp?). I stuck with this and tried eliminating things from my diet but nothing changed and he continued to say the same thing. Eventually things evened out and although my bm's were still not normal and I got sporadic pain, they became the norm for me if you understand what I mean. When you feel consistently ill, it sometimes becomes hard to differentiate between normal and not normal!

Things came to a head in April 2008 and when I woke in the middle of the night with excruciating stabbing pain in my lower right quadrant, D, fever, and vomiting. Being the kind of person I am and only having recently started uni and moved away from home against the advice of my parents I decided to just try and ride it out. Eventually at 8am in the morning I could take no more and phoned my dad who took me to the doctor. He simply said it was likely to be an ovarian cyst, I was vomitting from the severe pain, and the D was related to my IBS. He sent me on my way with antibiotics (I don't know why) and painkillers (I'm very allergic to anti-sickness tabs). I felt so ill that I caved in and stayed with my grandparents for a while and after a couple of weeks things seemed to go back to 'normal'.

Things seemed to continue the same until sep 2009 when my acne (of all things) got so bad that I decided to change GP to the same dr that my dad and the majority of my family are with due to my current dr doing nothing about it. Not long after I had my introductory appt with my new dr (who is an angel) my stomach problems worsened. I was having many bowel movements per day, pain, had eye infections, lots of pain, was hugely fatigued and lost about 20lb of weight off of an already low BMI (I'm very tall, which doesn't help). By jan 2010 and after a ruined xmas I decided I could not take it any longer and went to see my dr who instantly referred me to a specialist. I think this was due to the symptoms and the fact that my dad has Crohn's - was diagnosed 11 years ago when he was 40 and got a permanent bag last year after all other avenues were exhausted at least once. I got a flexible sigmoidoscopy (ow!) finally at the end of feb and all that was said to me afterwards was that they had found some patchy inflammation and had taken biopsies. I then got a letter a week later simply saying that an appointment had been made for me with the gastroenterology consultant on the 26th April at the GI clinic at the hospital,

I have still been having symptoms although not as bad as at the time my new dr referred me. I have been to see my GP since my scope about my skin etc and he says he has not heard anything from the hospital. He said if the biopsy results were simple and straightforward (normal) they would send both him and me a copy to save the hospital time and appts as they are so busy, but if they aren't they will have me in before they send him anything, and he highly suspects it is an IBD and will be very surprised if they say IBS. I have an important english exam on monday morning and the hospital appt on monday afternoon and I'm so scared and nervous and fatigued with it all. I can't concentrate on uni and it is making everything in my life so difficult. Further to this I have just lost my job due to the business doing badly so my financial difficulties are huge. I'm worried that I go on monday and they say it is Crohn's as my dad was so ill, but I think im possibly more worried that I go and they either say more testing or give me the old IBS chestnut again :( I just want an answer and some medication as I've felt like this for so long now :(

Anyway, I'm sorry for the long-winded tale, I suppose I was just looking to vent. Lol. Thanks if you managed to make it through!!

xxx
 

Astra

Moderator
Hi Sarah
and welcome

Poor you, yes you've been thro a horrible time! Hopefully on Monday they will give you some answers and the appropriate meds. They could start you on a short course of Prednisolone which would ease your flare and heal your inflammation quickly.
I suspect IBD too, considering your poor old Dad has it too! Don't be fobbed off with a dx of IBS, your symptoms don't sound like IBS to me, I'm no doctor, but I know that I spent 15 years being told it was IBS and all in my head! And, just for the record, my gastro said IBS doesn't exist, in his opinon, there's always a reason for bleeding, gas, bloat, D, pain and vomiting! And especially vomiting, it shouldn't be ignored.
It's hard to think positively at this stage, but you're on the right tracks, and stressing will flare your symptoms too! Try to relax now til Monday and revise for your exam.
Let us know how you get on, and any questions, just shoot, we're here to support you
good luck
and lotsa luv
Joan xxx
 
Hi Joan,
Thanks so much for the reply, it really means a lot :)
I'm trying (mostly unsuccessfully) to revise for my exam, I'm sure i'll scrape through it. By 'sure' I mean 'hoping' lol. Resits are my worst nightmare! I just feel like I'll be sitting in the exam hall thinking about my appt that afternoon while running to the toilet disturbing everyone and subjecting all 200 people in the hall to the godawful noises my stomach make - especially first thing in the morning! I'm not eligible to do it in a different room yet as I don't have a dx :(
I'm going to be seeking a second opinion if he gives me the IBS spiel, although I'm hoping he won't; it may just be my paranoia at being fobbed off since 2005 talking. I've actually doubted the existence of it myself, I kind of seems like just a cop-out for doctors who can't be bothered to actually do the job they are paid plenty for! Excuse my rage.
In hindsight I can't believe I actually put up with my old GP for so long - the last straw really should have been the night in april 2008 with the vomitting and pain etc, not because he wouldn't treat my spots properly! Damn vanity! Lol. It seems especially ridiculous considering my family history, which he knew about! And my dads Crohn's was (I don't know if it could still be classed as 'is' now that he has a bag and nothing left inside) so very severe. I suppose I'm lucky in that respect because as my dad got progressively worse and his remission times became less and less I made a point to educate myself on the subject. Although in a way that has now just made me more scared! I suppose I could drive myself mad with negativity and what if's, but I'm just going to try and be positive.
I'll keep you updated.

Love,

Sarah
Xxxx
 

Astra

Moderator
Aw Sarah

Just cos Dad ended up with a bag, doesn't mean you will too, hope you will be ok for your exam. How about you get up at silly o clock, very early, give your bowels time to empty and time for you to chill, and not rush?
Yup, GPs, god love em, just call any belly ache IBS! copious amounts of dosh they're on, but only a specialist can tell you for sure
Try and chillax now, not long to wait
xx
 
You're right. I'm gonna get up very early. Better that than rushing about stressing my head off
Would hate it to happen to me obviously (as everyone would) but have never seen my dad healthier, or happier for that matter, than since he got the bag. And when he first got dx and discovered what Crohn's was that was his worst nightmare.
I keep thinking if would be better if hospital in the morning and the exam in the afternoon, but maybe not! I love the NHS and am so appreciative of not worrying about the financial side of health care, but jeezo things take a while! I've waited month and a half from getting the letter about the appointment and it has to fall on the same day as my exam...just my luck. lol.
Thanks for chatting with me, sometimes its better to get an outside perspective. Think the thought of me having it instantly caused my dad blind panic and he instantly thinks it will be as bad as his - not the case I imagine.
Xxx
 
Hi Sarah,
You've gone a long long time without your symptoms being properly investigated. That GP wants a good ole clip round the 'earhole! You are very young and shouldn't have to go through all this worry. Like you and Joan, I too got fobbed off with the IBS chestnut for three years. I also got told that I was depressed and anxious. Er yes! Because I'm ill - geddit??? Even when I went to back to my GP after my consultant had given me the diagnosis, he looked at my incredulously and said, 'Really?' What, did he think I was making it up!
I also forgot what it felt like to feel ill and even doubted myself..thought maybe I was making too much of the pain etc....then when I got a Dx and the gastro gave me Prednisolone, I knew instantly how ill I'd been! I felt normal for the first time in three years.
So, even though you feel anxious about it possibily being Crohn's, be reassured that at least if it is, you will get proper treatment and you won't have to feel like this anymore. Things will get easier from now on.
So try to concentrate on your exam and please let us know how you get on. We will be here for you if you need us,
Gail
xxx
 
Hi Hedgehog.

Thanks for your reply. You are all so lovely. That bit about your doctor being incredulous about the results from your consultant made me laugh :) Unreal. It's easy for them to say that - I'm assuming they don't spend half their existence in the fiery depths of toilet hell!
I'm not a very assertive person, but I feel it has now been effecting my life for too long and many areas have been suffering, so I need some help. I'm struggling with the revision as I can't really get the health things out of my head, but I'll do what I can and hope for the best :)
Thanks again for the replies, and I'll let you know how I get on with my exam and results

xxx
 
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