What people with IBD should know

I am often asked, “What would you tell someone recently diagnosed with IBD?” So, this is what I think you should know! Look out for clickable links in this blog, leading to more detailed information! For many, a definitive diagnosis is a massive relief after a long period of being unwell. This does not mean that acceptance is easy, after all, you have just been diagnosed with a chronic disease which has no cure. Do NOT panic, we’ve got this, life is not over! It is worth pointing out that no two IBD patients’ lives are the same. The disease does not always manifest in the same way, and the fact that a treatment works for one person does not mean it will work for another. This makes IBD notoriously difficult to treat. That said, some IBD patients may have one flare, find the right medication straight away and never have another, and that is fantastic! For the rest of us, being diagnosed with Crohn’s Disease or Ulcerative Colitis may mean some lifestyle changes and som

Just complaining about IBD, my Jpouch, and everything else

Please bear with me whilst I throw my brain at the page!

I'm really angry. I am tired ALL of the time, like ridiculously so. I feel thick, and like I can't function properly, and like my brain is not engaged half of the time.

I thought long and hard about having my Jpouch reconnected. I had reservations, but I went ahead and did it anyway back in November, in the hope that I wouldn't flare again.

I have pains back in my side already that weren't even related to the Pouchitis; they were caused by my twisted intestine last time and are above the pouch. I'm confused. Surely it can't be twisted again!? It was odd that it had even happened the first time! I wonder if it is all in my head... but it's not. It can't be, I can feel it!

Since this latest reversal, my Jpouch has been 'OK'. The frequency has been more than normal but that's not too much of a bother, but, I keep having accidents at night. This is annoying as this also never happened with my Jpouch before. It's the same pouch for Christ's sake!

I had a cancer scare that caused me a lot of stress for weeks on end. I've seen the IBD nurse and she has upped my Loperamide in an attempt to stop the accidents, which seems to have worked but they are making me feel uncomfortable and bloated.

I have a flexi-sigmoidoscopy booked in for next Wednesday to check for inflammation etc which I wasn't feeling when I saw the nurse last Thursday but now I am! I'm pretty uncomfortable at the minute... and again, angry.

My face has been/ is being stupid. Acne and psoriasis have been plaguing me! What are the chances that I would have a dry skin condition and greasy skin condition at the same time!! I hate my face! I've got new meds for the acne, new creams to calm psoriasis and am finally seeing an improvement. But still... I hate my face.

I have an appointment to see the surgeon on April 2nd because I'm going to need them to cut my scar open and remove the stitches that are currently still poking out of it! I had this done twice before on the other side and whilst they are not poking out of the skin they are still just under the surface. I will speak to him about the pain in my side and expect to have to have barium X-rays again at Northern General. Northern general is a ball ache anyway because it's an hour away in the car and I don't drive so I'm always having to call on my dad to taxi me around.

So that's where I am.

I am fed up. If I have Pouchitis then Infliximab is my only option left to try after exhausting all other medications.

It probably looks like I am making a mountain out of a molehill, but in my head, I am completely exhausted, and I just feel like the battle never ends. After 8 years with IBD, I am now officially 'tired'.

That's all I got. I feel like that's all I am.