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Autoimmune disease

UC and general wellness

5 replies

pfrench · 26/02/2019 21:11

Apologies for my ignorance on this issue, but I have a question.

My partner was diagnosed with UC in 2013. He's been fine with the toilet stuff for months now, no flare ups. When he has them he manages with Pentasa.

My question is, has anyone else with UC noticed other illness stuff as a significant issue, and if so how have you helped alleviate these issues?

Ie, do you have more colds? Other allergies? My partner is almost constantly ill with something or 'feels like crap'. When I've brought it up as something I'm worried about, he dismisses it as just linked to UC 'I'll never be healthy', or says he's not ill often. I've kept a secret note of it, and he claims to feel rubbish on around 90% of days. He says it's not 'bum related' (how he describes flare ups).

Denial?

I want to help him, but need to tread carefully.

OP posts:
IJustWantToWearDungarees · 28/02/2019 17:13

I was diagnosed with UC a while ago and have found that the stomach stuff is really just the tip of the iceberg. I also get awful fatigue and joint pain. I haven't noticed a lower immunity apart from when I am
on steroids, which completely screw with me in a number of ways. The key thing is, though, that UC can affect people on completely different ways, so there is no definitive answer about whether this is "normal" or not. Do you think there is a possibility he could be feeling a bit low about his diagnosis, and that is impacting on his state of mind regarding his health?

The Crohns and Colitis society have a really good info sheet for friends and relatives of people with bowel disease - all about how you can help them but still make sure you care for yourself and don't get run down by it. Might be worth a look?

pfrench · 01/03/2019 11:54

Thanks for that. It sounds familiar - the joint aching particularly. He definitely had a period of adjustment mentally post diagnosis, but was partly relieved just to know what it was.

We had a chat yesterday about more consistent looking after of tiredness levels/stress levels, so will do some work on that first.

I'll check out the info sheet.

OP posts:
thebabessavedme · 01/03/2019 11:55

agree with pp, I have had UC for over about 12 years - everyone is different, I look after myself, watch what I eat etc however some days are awful, bone tired, joint pain, low mood, skin rashes and loo dashing. I do find sunshine really helps me as does staying active, I take supplements as some days I think I dont hold my food long enough to get any goodness from it iyswim? I have found that over the years I have worked out how to head off a minor flare (treating the strange rash I get on my leg with steroid cream, odd but works) getting enough sleep and eating very little, plain food helps, however, for me a major flare is harder to get to grips with. There is a 'normal' life to be had, you just have to listen to what your body is telling you.

I try to treat myself holistically, not just symptom by symptom, I try and get your dp to do the same, and as pp mentioned, watch his mood is not allowed to drop too low, ime depression is a large factor in the run up to a major flare. hth.

ArkAtEee · 09/03/2019 10:22

I have Crohn's and the problem is that because it affects nutrition, it can have a knock-on effect even if you're otherwise well (i.e. no current flare-up or other autoimmune disorders). I have problems with iron and vitamin D absorbsion so I have to permanently take these or I am just too tired to do anything.

As an aside on the joint pain, I have had erythema nodosum a couple of times after a flare-up and that started as joint pain.

en.m.wikipedia.org/wiki/Erythema_nodosum

BusMum79 · 06/05/2019 18:03

Hi. I have had UC for 25 years now (diagnosed at 14). Like your DH, OP, I am lucky that the actual bowel side of things is now fairly well controlled thanks to medication. But also like your DH, I struggle more with things like fatigue, joint ache, horrible headaches and sometimes dizziness (I’m quite anaemic). My medication - Azathioprine - is an immunosuppressant so I am very susceptible to infections (never just a cold, always becomes a chest and sinus infection etc). I find I have to be kind to myself, have learned when to opt for small portions of plain food and when I just need to do the bare minimum and get a lot of sleep. I have Vitamin B12 injections every 12 weeks and they really help with the fatigue. It can be so hard and overwhelming to deal with a chronic illness like UC, but he will find a good balance which works for him. I’m currently pregnant with DC3 (aged 39) which is something I never thought I’d be able to deal with physically but actually I find my symptoms improve during pregnancy (not uncommon, apparently). I hope your DH finds a balance soon- there will come a day (hopefully) when he will feel less like a sick person who’s sometimes well and more like a well person who has the odd bad day. When my consultant told me that as a teenager I couldn’t believe it, but things will improve. Good luck.

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