Ulcerative colitis, hospital not knowing when to stop pushing myself

[Manechai]

Hi All

I’m in hospital currently with my Ulcerative colitis for the very first time. I went to my GPs this week basically because my mum made me go as I seemed quite flat and was complaining of being tired and overwhelmed. (We thought maybe mental health). Anyway I was admitted as I was showing up as severely anaemic due to an ongoing flare causing blood loss and I’ve had to have two blood transfusions.

I feel quite scared as if my Heamoglobin had dropped slightly lower it could have been quite dangerous (mine at 70). And I think what’s scared me is I’m so used to feeling tired (between UC, two kids 3 and 1 years old and a full time demanding new job). And it was all so incremental that I just got used to feeling a bit more tired each week and I just lost all gauge or sense of when I was actually quite ill. And I just kept pushing myself and pushing through these feelings of being so tired.

I suppose I’m wondering if others have had this problem before of not recognising the signs of being unwell (even tho the physical symptoms are there) and not knowing when to stop. I mean I’m lucky I have a fantastic support system too and someone looking out for me making me go to the doctors. But I wouldn’t have gone if they hadn’t made me or at least not at the point they did.

I’m also quite scared now about the thought of going back into real life when I get out because stopping to rest in the hospital has made realise just how tired I was. Altho I suppose il be on new meds and my anaemia will be treated so it could all feel quite different. Its just made me feel anxious about my ability to cope

im not sure what my questions are really just wondering if anyone can relate

3 year old, 1 year old, demanding FT job? Can you do anything to down scale even a little bit? Must be exhausting. I know it is for most working mum's but stress can be a real trigger for us.
Hope your husband pulls his weight.

Well technically it is 4 days sorry should have been more accurate on that but realistically like many mums who work 4 days I end up putting the hours in to make it full-time. And on my day off I have both children.

Going less than 4 days isn’t an option in this job unless I could find a job-share scenario. Which is possible but would prob take minimum 9 months with getting sign off, recruitment and notice periods. I’d really like to be able to stay where I am if possible.

Also. Im still new to the job too and altho they seem to like me I won’t yet have the sway of an established member of staff and they’ll still be sizing me up I imagine.

My partner is fantastic in terms of support thank god

I’ve had the sodding disease 10 years and I never know when to stop. Had 3 flares this year so far. I have no kids or partner but it still gets me. Look after yourself please.

I think it’s very common with this and other conditions.

It sounds like looking for a job share would be worth it though?

Hope you feel better soon.

My DH has UC and it is a terrible illness.
He gets so exhausted and overwhelmed and tries to soldier on because otherwise I think he is worried he'll have no life at all. One thing I've been really asking him to do is start a symptom diary as to me he doesn't remember how bad things are day to day and will say things like, before this flare up I've been ok for 6 months when I know that's not quite true but he doesn't want to and I can't make him. In your case regular blood tests should keep an objective eye on things .

How is your condition being managed OP? What have the IBD team been doing to manage your flare? I’m surprised they didn’t tell you to go to A&E if you were losing that much blood so they’ve definitely dropped the ball here.

I have infusions every 8 weeks to manage my UC and they take bloods and a stool sample each time which is reassuring as it means they can monitor me and see if I’m going downhill; it means they can get ahead of a flare by double dosing my infusion etc.

Hi OP. Sounds like you are doing an amazing job OP with lots in your life and an illness to manage. I have found for me that it's really important to step back and understand how hard I am pushing myself and whether I am working so hard that I totally miss any concern for myself. I have found that I can work really hard, but the moment that I start resenting it or working with an attitude that the work matters more than I do that's when I push myself too hard and it's often when I get a flare up. Obvious other signal for me that I need to take a break is chronic lack of sleep. Regular sleep and rest is always a key part of staying well for me. I say this as a person who is able to hold down a very busy and stressful job, only made possible by sharp focus on meeting my own needs to reduce both hard work and stress when it's taking me close to the edge of what I can do without getting sick. Extreme exhaustion is always a risk sign that I might get sick, whether it is caused by the UC or caused by overwork, it's always a sign to take a break.

I think you need regular blood tests and stool test to monitor you going forward as it is so difficult to tell. Would your GP be helpful with that? If not, would you be able to use a private service like Medichecks to at least have your anemia followed monthly?

You seem to have the beginnings of having a strategy to manage this. So your mum noticed and your partner is very supportive. What can you identify as being the early signs, physically and mentally? You need to have a plan of taking action that bit earlier and looking after yourself. Is there a health professional who can help you talk through the symptoms and make a plan, and also talk to work about adjustments.

Thanks all I like the idea of getting regular testing and a strategy for noticing symptoms better.

I do have a great GP. It was him who sent me to hospital after my bloods and he called me literally the same day I had them done. My IBD team I just have an annual check up. And for example, I’ve been trying to ring them since Weds but there’s no answer and no voicemail or email it just says ring back tomorrow. And I’m into my third day at hospital and I still haven’t seen a doctor despite asking let alone an IBD specialist. One of the nurses told me that’s because the doctor priorities the ‘poorly patients’. I know she meant acute/emergency but that stung a bit when I’m feeling this shit. Anyway that last bits just a moan. Some really good idea here thanks as to what I can do

Sorry I did see a doctor initially who decided I should be admitted on to the ward but no one since. And it’s been really difficult trying to convince everyone that the original doctor said I needed two blood transfusions as someone wrote it in my notes wrong. I got it in the end but it took a full 24 hours of me just banging on about it.

I’ve had UC for around 10 years and I still don’t stop sometimes.

Life is busy, sometimes you don’t realise how you actually feel and a lot of the times it’s due to other things rather than solely UC.

I was also admitted for it recently and have been discharged this week. It doesn’t sounds like your getting the right care, you were admitted and have had blood so you are an unwell patient. Acute emergencies need to be covered first yes, but you should be seeing a doctor/nurse specialist on ward round each morning.

How are you doing now OP?