For the last 6-5 years I’ve been experiencing extreme abdominal pains, sometimes in the middle of the night which leaves me in 10 out of 10 pain, nausea, chronic Diarreha which can go on for up to 5 hours at a time. The next day I would have a sore stomach – it felt swollen, I couldn’t eat or I would get pain (even though I’m so hungry), and I would be extremely lethargic. It happens every few weeks so going to see a GP wasn’t something I could do, I would have to be in the middle of these ‘attacks’ for them to see how sick I was. Plus I was embarrassed… But in April 2013 I decided that I’d bite the bullet and go and see my GP, I found it hard to describe what was happening to me without it sounding like I was getting food poisoning every few weeks. I was sent for bloods and tests: Celiacs disease was ruled out, B12 and Iron was very very low (well below low levels) and my Calprotectin was high but not alarming. I saw a Gastroenterologist where I had a Colonoscopy and Endoscopy. The GP said I had a very small ulcer in my terminal ilium – which meant very mild Crohns Disease (mild?!?!? Holey crap I would hate to know what Bad was like, I’m not sure I would survive it). He wasn’t sure if it was crohns though so my slides, info and findings were taken to a regular gastroenterologists gathering where they could discuss my case (there were also microbiologists and a few other smart people like that) and they came back with ‘yes, mild crohns because of the small ulcer’. (yet again… mild? I feel like I’ve been cut to shreds with a rusty box knife and my guts are on the floor and being jumped on!) I was put on Pentasa – probably one of the worst things ever!, I was in pain constantly, my hair fell out in clumps, I was having silent migraines (one pupil extremely large, and the other was a pin prick) and I was on the verge of vomiting all of the time. I was told that the side effects would eventually stop. A month later I begged to stop taking this horrible drug and I started feeling better within a few days. My doctor told me that he wanted me to have a scan of my stomach, unfortunately at the time my Father passed away suddenly and going for a scan fell off my list of priorities as I had a family to look after (as my mother passed away a few years before that), I had to sell their house, and pay for burials, lawyers etc etc (none of which caused a flare up… not stress reactive) A month went passed and I got a letter from my Gastro guy saying ‘don’t bother with the scan, if you haven’t done it by now then you obviously don’t need to’ so that was nice....! yes my health is important to me, but I was in another part of the country attending to my grieving family – which is far more important, thank you very much. A few months later I went to a dietician to see if my flare ups were due to food – I did a FODMAPs diet to eliminate food groups, nothing caused a flare up, so that was a waste of a few hundred dollars! I did a fructose drinking test – apparently I can’t have fructose and that might be my trigger. I saw a nutritionist to tailor a diet for me, and I am still being horribly sick. There is no pattern, so nothing in my diet is triggering this. The problem I have is… I don’t have fructose (glucose syrup, corn syrup, invert syrup etc) in my diet, I pretty much stick to a very natural diet, veges and protein. I am very careful with everything I eat, I don’t eat rubbish, I exercise, I drink lots of water (no fizzy or orange) and yet I have spent the last two days metres from my bathroom and not being able to go out. I would love nothing better than to go to the beach or a mall or hang out with friends. I can’t even stand up straight without my stomach hurting!! (I just moved a tiny bit now and it feels like I’ve just been roundhouse kicked in the stomach) I am in constant pain and I don’t believe that ‘mild’ crohns should be this painful – In the middle of my ‘attack’ I feel like I am dying (I know that sounds like I’m being dramatic, but until you’ve been here then you can’t judge me). The pain is so intense that I sob uncontrollably, I lie on the bathroom floor because its cold, I want to vomit (sometimes I do), and I am as white as a ghost. I just have to wait for the pain waves to stop. It’s been two days so far, and will probably take that long for me to come right. I logged onto a crohns forum on my phone while on the floor one day, and mentioned how ill and in pain I was, looking for support in my darkest hours on the bathroom floor. And they were so mean to be because they said that I knew nothing of pain until I’m on ‘X’ amount of drugs and had ‘X’ amount of surgeries. They even said if I was in that much pain I shouldn’t be on my phone (I was sick for 72 hours!!!, I’m sure I’m allowed to be on my phone in that time) So I feel let down by people who should know!! Apparently those people are the gate keeps of the pain scale…. Who knew? I feel let down by my Gastro person. I feel as if I’ve been given the shove because I have ‘mild’ crohns. I read through the crohns disease forums and I don’t get all of the symptoms that those people have – boy I feel sorry for those guys! But I haven’t lost weight, I don’t have any blood, I don’t lose my appetite, I don’t have depression, no abscesses, ulcers or fissures. The only thing I have in common is a small ulcer in my ilium, pain and Diarreha. I have a good friend who has crohns and is on Hurmia yet our symptoms are different. I don’t know what to do anymore. I don’t believe I actually have crohns, I think I have an ulcer because something else is going on! I will go to another gastro person, but if I don’t work, I don’t get paid, so aside from the fact that I don’t trust doctors, I want to know as much as possible before going in to see someone else who treats me like I’m a ‘mild case’. The pain I am experiencing is not mild, in fact if anyone told me it was mild during my attack I would actually punch them in the face. I’m lost… sore, tired and let down by so many. Help I’m desperate (33 year old female NZ European) Other things: I have asthma, gastro reflux Charlie Girl