Terrified that I have Chrones or IBD
I am trying to be rational, I really am but my anxiety is out of control. I had a nasty illness a month ago. Started with fatigue, migraine and stomach cramps followed by horrible gas and diarrhoea which turned bloody after a few days and then returned to normal colour but went on for weeks. All of those symptoms have stopped although I still have a little irritation. A stool sample came back clear and I thought it must have been a food poisoning bug but now I am worried it was a 'Flare' and that I actually have a chronic condition and this was my first episode of it and that it will come back. I have spoken to someone with an inflammatory bowel disorder and she said my illness would not have gone away on its own and that it would be very rare for me to have a disease such as IBD or chrones without pain. That still isn't helping me though. Can anyone please help me with this? It is ruining my life this worry :(
@Jenni855 Is there a reason why it's something you're particularly concerned about? Are you at risk of autoimmune conditions due to other health problems? Do you have a family history of IBD?
@AffyAvo A great aunt had Chrones but other then that, no. I just wish I could speak with someone who has one of these diseases as I am working myself up into such a state. It seems nothing can put my mind at ease :(
@Jenni855
sometimes our anxiety manifests physically. With higher muscle and energy usage, as well as higher cortisol levels, the gastrointestinal issues you decide may come from a particularly higher anxiety time for yourself
have you reflected on that time emotionally to track potential triggers?
Our anxieties love to bounce around with new features, so don't be too disheartened by the thoughts of it being more serious.
firstly, if it is though to be ibd/ibs you could try the fodmap diet and see if that improves stomach and bowel functioning for you
or you could do the CBT way and write out what happened that week, who, what, when, where, why and how your emotionally responded to see if there may have been a trigger for the upset stomach
as an IBS gal with anxiety it can be nearly impossible to tell if I've eaten wrong, or if I'm freaking out and it's my stomach signalling for me to slow down. It's tough
i wish you all the best, take it easy, track you emotions (and you poop if you need!) you'll get through these worries
peace and love ❤️❤️
@Jenni855
How long exactly have you felt this way?
I have experience with IBS and I had all those symptoms for 3 months before I was properly diagnosed (except the blood). My advice is for you to do an exam to your intestines (not sure how you say it in english sorry) and one to your stomach. Don't worry these exams are with anestysia and they're not painfull after either. This way doctors can see if physically there's something wrong. In my case physically everything was ok and what was provoking these physical symptoms was anxiety and a panick disorder I had no idea I had.
So I truly suggest you to do those exams and also try to understand if you have bad anxiety.
Most issues intestine and stomach wise usually are VERY related to people who happen to have anxiety.
Best of luck and if you can update me on your journey. Just don't despair ok? There will be a diagnosis and there will be medication to help with your issue. Stay strong!
Thank you both. I am petrified at the moment. All my symptoms seem to be adding up to IBD. Can't function as I am so worried about the tests and what this will mean for my future.
Hi there! As someone who was diagnosed with Ulcerative Colitis (a type of IBD, kinda similar to Crohn's but not as bad, admittedly) I hope maybe I can help ease your mind a little.
Firstly, I think your doctor is right - my first flareup didn't go away until about 5/6 weeks after I first got it, and even this was after being taken into hospital (due to dehydration) and being given lotsa pills, including steroids for my colon. Now I'm definitely no expert so don't take my word for it, but what you had may well have been a stomach bug, or perhaps you have IBS rather than IBD. As for your anxiety surrounding the fear of having IBD, I must admit I am not sure what to suggest there other than go to your doctor's again and explain your belief that you may have an illness of this sort, along with explaining your symptoms?? Maybe get a second opinion, or maybe they can help reassure you of other, less chronic causes of these symptoms with medical evidence (better than I could ever provide).
However, if you do happen to have IBD, I want you to try your hardest not to worry - I know 'not worrying' is a lot easier said than done, but trust me when I say, if you're right in what you're thinking then it's okay, you can still live a great life. Of course I can't speak for those with Crohn's, but I can tell you about my experience with Colitis:
When I had my first UC flareup, it was a pain, I won't lie. Lots of stomach pains, couldn't eat much other than white bread and grapes, and even then eating made me instantly need to go to the loo. As I said before, this went on for weeks, well over a month, and it was around 3 weeks before I got taken to hospital, so I'd lost a LOT of weight (around 10 pounds in about 2 weeks) and was generally very weak at this time. Now, this was in late March/early April 2015. You know what I did in summer 2015? At the end of June I had my end of school prom (and got veery drunk lol), went to Glastonbury festival the very next morning (and was able to enjoy most of it without getting too tired!), then 2 days after I got home from that I went backpacking around Europe for 2 weeks with some friends. Only 2/3 months after I was diagnosed! (Also note, I'm not one of those annoying cases where someone is doing really great, but it's because they are ridiculously fit and eat all healthy - I'm lazy af and really do not eat as well as I should, and I'm still going).
I also have an aunt with Colitis who drinks a lot and every so often runs marathons, and a family friend with Crohn's who is a huuuge foodie and is doing fine, all things considered!! (Of course having the disease will restrict you sometimes, and it does get me down, but I'm actually okay in spite of it). My point is, if you have developed a type of IBD, there are ways to manage - being careful with what you eat (for me that's red meat and spicy foods), taking approriate medicines and generally taking a bit more care of yourself.
I'm not sure I can do much to help you with your anxieties around whether or not you have IBD, but I hope that maybe hearing a personal story about what life with it can be like puts your mind at ease a little when you are thinking about the possibility of having this illness. It can be tricky, I won't lie about that, and occasionally the FOMO from missing out on things due to being too tired can really suck, but in all honesty it hasn't affected my life nearly as much as I thought it would! x
Thank you. I am panicking so much at the moment so this helped to hear. My doctor is confused as I have no tummy pain and never have. She pushed down hard on my stomach and I didn't feel any pain. Despite that I still have ongoing bouts of diarrhoea, acid reflux and horrible smelling gas, all of which point to an inflammatory disease. I also notice blood a few times and don't know if that is piles or the ibd.... I redid a stool sample for the doctor last week and I know it had blood in it :( So what doesn't make sense is: 1. How it suddenly came on me. If this was my first flare it was pretty severe, seems usual all the symptoms came on in stages and then went on their own. 2. How I had 3 weeks of being well inbetween 3. How I have no stomach pain It doesn't make sense and like people with IBD have said, they have never been able to come out of a flare without proper ibd meds. I guess I will be sent for a sigmoidscopy soon, does that hurt?mi am petrified of hospitals and procedures. Many thanks for your help and sharing your story xx
@Jenni855 Im afraid I cant give an answer for what I think might be causing your symptoms, and as Im definitely not qualified in the slightest I dont want to give you ideas. However I can still answer your questions using my personal experiences Im sure :)
In reply to your questions (if I'm reading them correctly - lemme know if I've got them wrong!)
1) My first flare up was definitely the worst, by far, and had all the same symptoms as you - blood in stool, stomach pains etc. - as well as a few more, and it did come on in the span of just a few days, maybe even one! What happened was that my whole family got a stomach bug at the same time (which I assume triggered my colitis), and yeah, basically everyone else got better but my symptoms continued, and so came the colitis into my life. So its true that, for most cases of Colitis at least, it comes on pretty quickly, but Im not sure it would have disappeared as quickly as it did with you if it was IBD… (definitely not a doctor though so dont take my word for it).
2) IBD isnt a constant thing - whilst its always there, you have good and bad days/weeks, depending on lots of factors (diet, alcohol intake, stress, other illnesses etc.)… so if this is the case, having good weeks wouldnt be abnormal. However we are still of course not saying its definitely IBD, as from my knowledge and what your doctors are saying, some of you symptoms dont make sense with typical cases.
3) For me, the stomach pain hasnt been the sort that hurts when you press down on it - its sharper, in fact pretty similar to period pains (fun, I know). It is something that pops up kind of regularly though, during flareups specifically - theyre quite intense sometimes, and only last a few seconds, rather than being a continuous ache, but theyre not particuarly hindering in my day to day life.
I wont lie, the sigmoidoscopy definitely isnt the most pleasant thing in the world.. would describe the feeling as odd rather than painful. However it is over fairly quickly, thankfully - could be just 10 mins! And from my experience the staff that help you through the procedure are super super lovely, which definitely helps. Also, I imagine, if you really need it, sedation can be provided - I got sedation for my colonoscopy and I literally cant remember feeling a thing, its all a nice floaty blur.
Hope this all also helps!
It definitely helps thank you. I have heard some horror stories around camera procedures so am hoping that my experiences will be as positive as yours. With the stomach pain I only had it for 5 days and then it gave way for the diarrhea. After this, I haven't experienced any pain at all which I know is unusual for IBD but I guess not unheard of. Having said that my doctor is confused as to why I am not in any form of pain in my tummy. I also find it weird that the bloody diarrhoea I had originally only lasted 5 days then returned to normal colour. I do hope it was just a nasty bug back then which is causing me after effects now...I guess what worries me is the blood. I see it here and there and my bum feels sore/I had all the symptoms of piles previously so maybe it is also that.... I am back at the doctors Wednesday and I am sure she will refer me due to abnormalities in my results. If it is IBD it is nice to know people like yourself can still go out, enjoy your food and drink alcohol. I have visions of myself never being able to go to a restaurant or be too far away from a toilet. It is a scary and unsettling time not knowing what is wrong with me especially as I was so healthy before all this :(
I got diagnosed with UC about 3 years ago now. The first flare was horrible, I felt like i never left the bathroom, horrible pain for a few weeks. I saw a few specialists, one was horrible and just thought I wanted pain meds so he was no help. Took 4 months to even get in for a colonoscopy, on steroids for over 6 months. Full body joint pain from the inflammation. Horrible time. But a lot of what you can do, is really pay attention to what you eat. For me, anything too spicy, or greasy or even too sugary can cause issues for me, so a lot of trial and error and a food journal. I can avoid certain foods.. even though i love spicy..and can avoid having to go in to the doctors for more issues than i need to. Doing this simple thing i have only had 1 major flare up in 3 years and haven't been on any maintenance medicine. I'm not saying everyone is the same, but its a good place to start.
Did you get better inbetween flares? By that I mean did you have your first flare and then recover or did it just get worse from then on before you got a diagnosis?
It got worse for me for a while, and was by far the worst flare I've had. It lasted about 5 months, getting a little better, a little better, then a sharp drop before the steroids really started working. After that, there were minor issues of I ate something I shouldn't have, but the minor ones are a day or 2 at most. As long as i eat right and avoid certain things, I am perfectly fine.
So I had a high calprotectin level so being referred :( I am terrified. My symptoms went as follows: Migraine followed by an episode of loose stools then stomach cramps for a few days. The cramps stopped then the diarrhoea hit (I actually had an accident the first time this happened :( . Diarrhoea turned bloody for a few days then returned to normal colour. I recovered from this and felt great for a month. End of November: Bum felt heavy and sore, noticed blood a few times. Assumed it was piles now realise it must have been an IBD symptom. Middle of December: Stomach felt all churned up and acidic, 2 weeks of diarrhoea with small amount of blood. Re did stool test and blood test at doctors, all fine except the calprotectin level :( Now: Toilet habits normal but sore ribs, back and upper stomach can feel like a heavy dull ache. Also noticed urine is cloudy. Is it just me or is this presenting weirdly? I didn't know IBD can stop/start. Surely diarrhoea can't stop on its own if the bowel is ulcerated? I just can't believe how I could have been so healthy before this and now have a chronic illness. :(
