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Awaiting diagnosis, but what were your symptoms?

Hi, this is my first post here.

I’ve been suffering with a myriad of symptoms for the past 2 years, spoken to many (many!) GP’s, had many tests and scans and everything usually comes back ‘normal’.

I finally spoke to a GP that seems to be more knowledgeable than the others I’ve spoken to previously who, on listening to me talk about my symptoms, immediately said he thought I might have IBD. He requested a full blood count and a stool sample. I haven’t actually spoken to him again (appointment is coming up soon) since the results have been returned but my GP surgery called me back and said my GP requested to speak with me about referring me to the Gastroenterology department. I asked them if my stool sample had come back positive, to which they replied it had. My bloods showed higher than normal inflammation (this is the only thing that sometimes comes back high, not always though). So I’ve been in a bit of a tailspin ever since!

My symptoms are wide and varied, the worst being the abdominal and rectal pain. I get a really deep ache right under my ribs and sternum, all the way across, basically where my bra sits. Sometimes it’s after eating, sometimes when I haven’t eaten yet. It will also go into my back at times. Then there is the rectal pain! My goodness, this has been so debilitating at times. At one point I couldn’t sit down without the burning pain starting! It’s also made worse by exercising. I keep everything very soft but I get excruciating pain when going to the toilet and for a little while afterwards in the saddle area. I’ve had awful rectal spasms too. Just recently I started seeing small amounts of bright red blood, although it appears to be only occasionally. No urgency to go or anything like that but I do suffer on and off with diarrhoea and have done for years, this was always put down to IBS and anxiety.

I’ve had lots of other symptoms too, like coccyx pain, lower back pain, tingling in my lower legs and feet, very mild nausea, tongue/throat/lungs sometimes feel ‘weird’, headaches, developed chronic moderate dry eyes, achy muscles etc. All within the past 2 years. The ‘IBS’ symptoms I’ve had for about 8 years and 6 years ago I developed psoriasis so I’m now thinking that if I do have IBD then I probably had that before the psoriasis.

Has anyone else had similar symptoms to mine? The abdominal pain this week seems to have gone up a notch as it seems to be stretching from my ribs all the way down to my lower abdomen and I don’t usually get constant, achy pain there (only cramps when I have diarrhoea). Feels almost like a pulled muscle? My entire abdomen also seems tender to the touch.

Whilst I’m glad that I might finally get some answers for all these weird symptoms, I’m also worried about what the future has in store for me, I’ll be 40 soon so not a great way to start a new decade.

Thank you for reading and apologies that this has turned out to be quite a lengthy first post!

  1. Hi , thank you for being here and sharing what you are going through. Diagnosis can be so overwhelming - for me there was some relief that there was a name for what I was going through but also the terror that I'd be dealing with a lifelong illness. I was 21 when I was diagnosed and now I am 29 - in 8 years, I've been through a lot but I've also really learned how to listen to my body and manage my symptoms. I am confident you will also have this experience, though it may take time. In regards to symptoms, IBD symptoms can be really variable based on where your inflammation is. I definitely get pain in my rectum. I also get some in the lower left of my belly. I typically have a lot of bleeding, diarrhea, and urgency, but less pain in my upper stomach. I also get fatigue and muscle aches. That being said, not all my symptoms will be the same as yours and vice versa! I think when you see a GI, it would be good to bring a list of symptoms with you and find out what could be associated with your potential IBD so your GI can think through how to manage it. You might also ask to be tested for things like C.diff (a stool test) just to make sure you don't have any infections accompanying all this. I know this process can be long and tedious, but we are here for you! Feel free to keep us updated at each step. Sending <3! -Eshani (IBD Team Member)

    1. Hello, thank you for your reply!

      I feel the same as you about diagnosis. Whilst I am, in a way, hopeful that this explains all these strange symptoms (and that I am not just imagining everything!) and I might now get help for them, I too am terrified of what this will mean for me in the future. Thank you for sharing your experience too and I’m sorry you were so young when you were diagnosed, it must be even harder to comprehend at that age.

      Yes I’ve been doing lots of reading regarding everybody’s differing symptoms, experiences, treatments and outcomes. I realise it’s going to be a long road in finding my triggers (although I’m pretty sure stress and anxiety are

    2. Hi , it's great that you're already starting to do this research and take ownership of your triggers! Stress and anxiety can certainly be huge triggers for a lot of people, so making sure to get rest, take walks, meditate, etc, can help. I've also seen therapist for stress and anxiety. We may not always realize but diagnosis and illness can cause trauma, so having that support system has been useful for me. I definitely suggest taking it slow though in terms of trying to figure everything out. A lot of it is trial and error and learning your specific illness - so it's okay if you don't have it all figured out right away. You will have a better sense of your body each day you deal with this. Always feel free to reach out to us as you need! We are here to talk and share. <3 -Eshani (IBD Team Member)

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