IBD How did you feel before diagnosis

[Rainbowdrops2021]

Just wondering if anyone can tell me how they felt in themselves before a bowl disease diagnosis?
I’ve been referred for an emergency colonoscopy my fit test was positive for blood and my calprotectin levels were over 1000 but my main issue is how I feel in myself. I’m absolutely exhausted, I feel achey and I’m struggling to do the smallest of tasks. I don’t feel like I’m doing a good enough job as a mum and I’ve missed some work because I’m always just so tired or ill. I’m trying to tell myself it isn’t the big C but the way I’m feeling is scaring me a bit. Just looking for a bit of reassurance really and any advice from someone who’s been through this previously.

• BUMP I’ve failed the prep for the colonoscopy it was meant to be today but the moviprep made me violently I’ll, I’ve never been so sick in my life so now it has to be rescheduled. I’m feeling quite low now, fed up and tired and just want some answers as to what’s going on. 😢

Hey.
I had a colonoscopy last week.
The moviprep is horrendous. Managed the first litre but the second was so hard to swallow. I didn't just have the 💩, I felt sick, tummy pains and so weak. You have my sympathy.

How frustrating to have it delayed after suffering before and during. Are they giving you a different brand of prep next time?

I threw up using moviprep but when on the second lot and thankfully was enough. It really is difficult.

I was dx with very severe IBD as a child. The day before my 1st colonoscopy, with the laxative drinks, still stands out in my memory as the worst day of it all.

I really sympathise. Keep going though, force it down and take the taste away with ice lollies. It's 24 hours of hell in order to ensure you get proper treatment.

DH has Crohn’s colitis and he was very unwell, weak and debilitated before his diagnosis. We were on holiday and he had, what we realise now was, his third flare up. He spent the whole week in bed, he could barely stagger to the loo which is really unlike him. He is stable now and completely well for many years and has normal energy levels, so your symptoms don’t have to be sinister.

While he was waiting for diagnosis he drank yakults daily, took probiotics and fish oil supplements which he swears helped. There is some research evidence for them too.

Good luck with the Moviprep, it’s grim!

I’d had diarrhoea for almost a year before I went to the GP about it and I kept thinking that I’d get better soon.

I was exhausted and was pretty much going to work, coming home and going to bed.
I had citrifleet for my prep and I had an endoscopy and colonoscopy first time round and left with a diagnosis of pan colitis.
I’ve had varying meds since then and am currently off all meds as I was diagnosed with cancer in late 2020 (not bowel cancer) but I am having symptoms returning and am waiting to see the gastroenterologist again to discuss my options.

Thank you for all of your replies. I couldn’t keep the moviprep down at all in the end I was completely fine drinking it just as if finished the first litre I started to vomit and it didn’t stop 😩. They are having to reschedule the appointment and are going to try something different for the prep, so it’s just a case of waiting again now. It’s interesting to know that others have felt a lack of energy with other bowel problems, it wasn’t the other symptoms making me worry so much about cancer.

Sorry about your diagnosis @MrsPnut . I hope you get something that works soon, it’s really is draining and I can only imagine how awful it is for you with everything else you’re going through. I hope you’re feeling better soon.

@Rainbowdrops2021 i have UC. It took years and numerous GP and A&E visits before diagnosis.
Aside from the relentless bleeding and urgency in needing the toilet, my biggest memory pre-diagnosis was the sheer pain exhaustion. I was so weak and tired I physically couldn’t brush my hair - it took far too much energy. I’ve never felt exhaustion like it.
But the positive thing is once they did the colonoscopy and I got the diagnosis, I was started on the right medicine and felt a million times better quite quickly.
I hope you get a resolution soon x

@Nc58985 This is exactly how I feel at the moment, completing the school run feels like I’ve done a marathon 😅. My husband is also fed up he goes from working a full day to coming home to a messy house and kids to feed. It’s really reassuring that you’re feeling much better now though, hopefully it won’t be long and I’ll be the same.

just incase anyone ever stumbles across this thread with the same symptoms I thought I’d update, I’ve just been diagnosed with microscopic colitis.

Sorry to hear this. I have microscopic colitis as well. Diagnosed last year. It is the "lesser" of the IBD but life changing none the less.

How are you feeling? Has your consultant put you on any medication?

@Nadal I’m actually feeling quite relieved to have an answer. It’s gotten so bad I’ve fainted from dehydration twice. They said I’m going to be put on some steroid medication but I’m not sure when that will start. Can I ask is there anything you have tried that’s improved your symptoms? I would do anything at this point 😆.

@Rainbowdrops2021
It is probably budesonide as it is the "go to" steroids for MC. I have had 2 courses of it. It works wonderfully. Within 24 hours I was feeling better and regained my appetite. I was symptom free for 3 months after the end of the course and then it was back. Gutted. Same the second time. The downside is that it is a steroid so not a long term solution. That said, some take a low dose as a maintenance though.

For some people, budesonide keeps them in remission from symptoms for years, so fingers crossed you might be one of the lucky ones. Only months for me. I am trying diet changes and supplements before I go back for further medication. Currently on heather s tummy fibre which is soluble fibre and that helps. Not perfect but no more frequent diarrhoea. You might be better off waiting for the medication. How come you don't know when? Why haven't they just written the prescription out?

Oh no that sounds horrible having it go into remission only to have it kick back up again. I can’t imagine what someone with chrones or ulcerative colitis feels because this has kicked my ass even if it is the lesser of the evils.
The specialist said he had to write to my gp first so they could prescribe it but I called up today and they haven’t received any thing yet, I know it’s only one more day but it’s another day feeling like this so I will call the unit tomorrow if I don’t hear anything by lunch. I’ll look into that tummy fibre thing too. I really hope you can find something that works for you long term in the future.

Yes definitely keep chasing. How long have you had symptoms before diagnosis? It is such a relief to take budesonide. I just wish it wasn't a steroid, although it is a gut specific steroid so doesn't affect the rest of the body as much so less side effects.

Hoping you get it soon. Let us know how you get on.

@Nadal That’s good to hear because I was a bit worried about weight gain. I’ve had symptoms for around 8 months now 😕.
Thank you for all of your help.