Could I have Crohn's? :(

Hi

I think you need to change your doctor and they can tell if you have Crohn's from your stool sample and blood and a colonoscopy

The fact that they didn't complete it makes me wonder if they have missed it because when I had mine they didn't find Crohn's until they got right to the end of the bowel so I think you should go back and tell them you want it done again properly

I had the same symptoms as you and everything the doctors said it wasn't like appendicitis so I think you could well have Crohn's

Hey Jennifer,

I have just read your post and am so sorry to hear of such an awful time you have been having.

I was no way near as bad as you, but have been suffering with horrific abdominal pains and bloating since April, urgency to go to the toilet and generally feeling unwell. I was on omeprazole for a few weeks, admitted to hospital 4 times due to the pain, my CRP was going up and up and all they could suggest was gastritis. After countless visits to the doctors and being told to avoid acidic foods and drinks (this did not help in the slightest) I decided to pay privately to see a gastroenterologist.

I haven't experienced half of what you have, but I couldn't take the pain anymore and needed to find out what it was. It was very expensive to see a consultant - but I booked a colonscopy for 5 days later (again - very expensive) but had to be done!

I received my biopsies yesterday but was put on steroids immediately after the colonoscopy. This helped with the pain a lot! More than any other medication they had given me. Had no idea it was going to turn out to be Crohn's after months of being told I had an acid reflux and gastritis.

I know that not everyone has the money, I certainly didn't myself - but for me - paying to go private was the only option and they are now feeding me back onto the NHS for other tests which hopefully I won't have to pay for.

I would suggest looking for a private gastroenterologist local to you and they may be able to help you from there. Going private is very different to the NHS because they have the time to actually look at you individually and someone may finally take you seriously.

I hope that someone is able to help you and you start to feel better soon.

So sorry to hear you're having such a sh*tty time (no pun intended) I think you should change your doctor or ask to see someone at your practise who specialises in gastro things. Voice your concerns about Crohns. Ask if you can be tested specifically for it (if you haven't already) Don't let them fob you off... it's your life being ruined, not theirs! It took over a year for my crohns to be diagnosed It's 26 years ago now so hopefully tests are better nowadays. I felt like they thought I was making my symptoms up! Have you had any weight loss?

Good luck, keep us updated... and don't give up! x

First of lety me say that I a very sorry for what you are going through. It appears to me that both your doctor and consultants are not experienced enough. I am firmly convinced that IBS is just an excuse when the don't know what it is. As I have now said many times on these forums I have had crohns for 52 yrs and in those days there was little known about this complaint, like yourself I had never heard of it

?Another similarity to your self was that I was rushed into hospita with suspected appendicitisl.I had my appendix removed but it was during that operation that found that I was also suffering from crohns. It seems that expority surgery is one way of making sure..  I would certainly look into finding another consultant with more experience of this complaint, I cannot believe some of the thing that they have come up with, food poisoning indeed.that has lasted for 5 yrs. I am appalled how long it is taking to diagnose patients.  There is a new procedure out now where you swallow a capsule that incorporates a camera and takes photo's of yout whole gastric tract where endoscopy and colenoscopy can some time miss out some parts of the tract. I hope that you soon get a diagnoses so that you can start getting the correct treatment.I am sorry that I cannot be of more help.Keep me informed as to your progress.

Sadly your story does not sound unique...

I struggled for years, about 10 years ago I had a colonoscopy & told on the day that I had Crohns disease. However when I went back a few weeks later for the lab results I was told they were normal and had IBS.

Eight years later & a new GP who I'd seen a few times re IBS & I described the pain in comparison to the birth of my two kids without pain relief. His words were almost a relief "That's not IBS!". A few months later I was diagnosed with Crohns!

I wouldn't accept the food poisoning line - do you share a house / meals. Anyone else at the same time? That was one of my arguments, odd time you may get a bug & the rest of the family escape it but a dozen times? I now know they were Crohns flares and obstructions due to strictures. You need to push for repeat of colonoscopy or an mri scan. Blood/stool samples need to be tested for inflammatory markers.

Good luck

Hi Everyone,

Thank you so much for taking the time out to reply. It means so much to have people that understand.

I think I'll go to the doctors and beg one last time for more tests and then seriously think about going private, i can't go on like this!! It seems everyone has had a hard time of being diagnosed . Of course it might not be it Crohns but all I want is for someone to take my serious and get to the bottom of what's causing this!!! Xxx

Hi Jennifer,

How awful for you. I really can sympathise. It took a while for me to get a diagnosis - if you click on my username I think you should be able to view my other responses that detail everything.

Have you had a calprotectin stool test? You can ask your GP for this. A high calprotectin level indicates inflammation in the intestines ( IBS does not cause inflammation but IBD does so this is a good indicator and I think is the only reason that I managed to get a referral to a GI for further investigations) ( it's also worth noting that other things can cause inflammation in the intestine - the key thing is that if your calprotectin level is high then they cannot just tell you it's IBS).

I agree with the other post - if you can afford to it is worth getting a private appointment to see a GI consultant. I did this. I paid £250 for a consultation and was able to get an appointment the following day. I then asked to be referred back to the NHS ( was kept under the same consultant).

All of my blood tests, colonoscopy, MRI came back clear. I became so ill and honestly wondered if I was imagining things were worse than they were or if I was just being a bit pathetic. Like you I was having to go back to bed during the day.

I eventually managed to get the pill cam procedure done ( capsule endoscopy) on the NHS ( it costs around £1000 if done privately) and got my diagnosis from this. It showed that I have Crohns in my proximal, mid and distal small intestine. I have extensive ulceration, mild stricturing and cobblestone mucosa ( meaning I've had it for a long time) ( incidentally, my pain started around 7-8 yrs ago in my appendix region) and have been told that I wouldn't be a candidate for surgery as the whole of my small intestine is affected. ( both my mum and aunt have had surgery to remove an affected section of their intestine and both are med free now).

I still find it hard to believe that all of my tests were coming back clear yet my disease was so extensive.

This disease can be difficult to diagnose but don't give up. Keep pushing - I know how hard it is when you are feeling so ill. I eventually went back to my doctor again and told him that I had reached my limit and couldn't cope with the daily pain anymore - he was very good and helped to speed up getting the pill cam results through which can take around 4 weeks normally.

Once I had a diagnosis and treatment things improved very quickly.

I hope that you can get some more help. Please do ask for the calprotectin test. Even if you have had it before, if your symptoms are getting worse it may have increased even more.

I had one doctor tell me that they'd expect something abnormal to show in my bloods if I was so ill - don't let anyone tell you that - I knew it wasn't true as my mum had clear bloods yet had to have emergency surgery for her Crohns ( it took years for her to get her diagnosis and she also ended up going private as her gp was prescribing anti - depressants!)

Sorry it's such a long post. I hope that something I have mentioned might help.

xxxxx

Just another thought. It might be worth contacting Crohns & Colitis Uk. I think they have a contact number online - they may be able to give you more advice xxxx

I'm so sorry for the trouble you're having getting diagnosed.  I had horrendous trouble 32+ years ago, I kept repeatedly going to a GP and he kept brushing everything aside, weight loss was because I was running around after two young children: substantial hair loss, (I thought I was going to go bald) skin rashes and sores, period problems all being exagerated, abdominal pain that was IBS, my own fault I was worrying too much etc, etc.  I was treated as a hypochondriac.  He never once took blood tests or even my blood pressure that I can remember.  It wasn't until my husband bluntly told the GP he buried his mistakes that we abruptly changed surgeries.  We were accepted by a new surgery on Friday afternoon, I saw my new GP Monday morning and he called for an ambulance from the surgery.  The excessive pain and swelling in my tummy was being caused by Crohn's abcesses forming, bursting and bleeding into surrounding tissue.  It took time to sort out what was going to happen next.  Eventually I had surgery and I've never looked back.  Okay I get very jittery and worried from time to time, but I'm so lucky..

I think you are now at the point you need a different GP.  I wish you good luck and I hope someone somewhere will diagnose what's wrong and how it's going to be treated.

This sounds so much like what my son is going through.  He is having Calprotectin done but the doctors think its pubuerty, IBS, or anxiety.  They don't know my son.  Having severe pain to me where you can't bend over, wake up in the night, cannot participate in PE, Etc seems more to me than what my son's docotors tell me.  They refused the MRI, refused the pill cam, refused the colonoscpy.  I feel like no none cares about the pain my son has been in since January.