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Symptoms: fatigue, joint pain, flatulence etc etc....frustrated!!

Hi everyone
I’m new to this forum. I’m having a low moment and thought I would reach out to other people who suffer to see if anyone has had any similar symptoms.
I am 29 years old, British Indian and fairly fit and active. I weigh around 60kg, 5ft2 inches.

In the last 5 years or so I’ve suffered from IBS but my symptoms don’t seem to fit just with IBS. I’ve been to the doctors many times to discuss my symptoms which I summarise as follows:
- For around 10 years I have had piles; mostly manageable with a couple of very painful incidents that I’ve seen a doctor for. This includes bleeding.
- Fatigue immediately after a bowel movement which lasts for hours afterwards; sleepy, difficult to concentrate, feeling very thirsty, just want to lie down and sleep sort of feeling
- Pain below my gut area that lingers for hours
- Pain in my hands in particular my fingers, in my feet mainly toes, knees and legs – only really AFTER a bowel movement, which lasts for hours (and generally all over but these are the main areas)
- Pain in lower back after a bowel movement
- Bleeding after a bowel movement – when I wipe, sometimes in the toilet water (I believe this is to do with the piles, but I feel all this issues could be connected somehow)
- Feeling nauseous, but never usually sick after a bowel movement
- A weird feeling after a bowel movement like I need to empty my bowels again (but don’t usually need to)
- Bowel movements at least twice a day. Between 2-4 times a day. Sometimes within a short space of each other. This isn’t diarrhea. I don’t strain to poo, but it is painful due to the piles more recently (since I was on coronavirus lockdown abroad and on a longhaul flight back!)
- Bubbling sort of feeling in my bowels
- I feel quite bloated and can extend my belly and look like I’m pregnant
- I have lots of flatulence – and a very understanding boyfriend!! Sometimes smelly, other times not smelly but loud and long (quite impressive sometimes)

I don’t have a symptom of weight loss at all which I know is quite common for IBD, I have the opposite really! I can lose weight when I am trying to and I’ve previously lost weight a few years ago to around 54kg but that was intentional.

I’ve had stool samples and blood tests at the doctors many times, always comes back fine with no inflammatory markers. I’ve tried to push to be seen by a specialist but as my markers come back fine I’ve not been referred. Its frustrating as I feel all these things but on paper I’m fine. I know camera procedures such as a colonoscopy are quite invasive and a locum doctor asked me once why I would even want one; but I feel I need this to see what’s actually going on inside my body. It’s getting me really down and effecting me at work. I've cried at the doctors on occasions but I just feel this is always dismissed and advised for lifestyle changes. I was referred to a nutritionist but that didn't go further than one session and I didn't hear back after.

Any comments would be appreciated. It could be severe IBS but if it is an IBD then I want to explore further to try and get the help I need to manage it. I know IBD suffers can suffer very badly so I feel if it is an IBD it’s more on the mild side compared to some (although doesn’t feel mild at times!!). The reason I feel it may be an IBD is because of the joint pain mainly in my hands and feet

I look forward to hearing from you!

  1. Forgot to say i've had a coeliac test came back fine. Not sure what my trigger foods are. But it's pretty much daily with some days worse than others and definitely a really awful day per week

    1. Hi (love the name by the way)!

      I wish I could give you an answer, but it's something that many people with IBD have also experienced, often for many years, before getting a diagnosis.

      I agree that the next step should be seeing a specialist and/or going for a colonoscopy. We know how we feel and how our body feels more than any doctor does, so if you feel you should be tested further, it is just a matter of staying on their case. I know how hard it is - I've been there with IBD and with other issues, but it's worth it to get the investigations done.

      I know low FODMAP diet can be recommended for IBS, and that antispasmodic medications can be prescribed for cramps, as well as things like peppermint capsules which can help with things like flatulence (and sometimes also result in minty wind). Have you tried any of these? I wouldn't recommend changing your diet drastically without the help of dietician though!

      Good luck!

      - Sahara (team member)

      1. Hi Sahara! Thanks for your reply. I'm surprised the username wasn't taken already!

        I've had a phonecall with a doctor today, mainly to discuss painful piles internally at the moment which he thinks sounds like an anal fissure so I have an appointment next week for this to be seen physically.

        I also discussed everything in my last posts and he seem open minded. I was very upfront in what I wanted and explained that on paper my results seem fine but my body is not fine and I said something I haven't said to a doctor before; that I want this to be explored with IBD in mind as I think I have symptoms. He looked at my history and said that he can see that this issue has been chronic and said as my last samples are a year old he will take more samples and he also said that if results come back fine it doesn't mean it is fine so we can look into further. He seems equally supportive and baffled by the symptoms, so i'm hoping he will refer me to see whats going on in my bowels!

        I haven't tried FODMAP yet but try to avoid high FODMAP foods but without eliminating completely. I will look into your other suggestions, thanks 😀

        1. , I am really pleased that you seem to have found someone who is listening to you at last!

          Fingers crossed this time is THE time for you!

          - Sahara (team member)

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