Anyone have experience of Colitis fatigue?

[Jessingtonspa]

Posting for traffic. My DH was diagnosed with colitis earlier this year and suffers with fatigue. This means he needs to spend a lot of time in bed resting. He also expects the rest of the house to be quiet when he’s in bed- which is a lot, and the s expectation is causing a great deal of friction between us. Does anyone have experience of colitis fatigue and how to manage it with 3 kids in the house? He says earplugs and white noise don’t work, he won’t move bedrooms to a quieter part of the house and won’t put a time limit on how long we’re expected to quiet for. Any experiences would be really helpful.

Experience fatigue. But expecting everyone else to be silent is unreasonable. Can he not go rest in a quiet bedroom?

Agreed, fatigue is real but expecting the rest of his family to be silent for hours and hours is not on. Ask him to talk to the IBD nurses about living with his condition.

He doesn’t want to move bedrooms. He says he dies t expect silence but can hear my banging around angrily because he’s in bed which isn’t true, it’s just normal household noise. I can keep everyone quiet/ go out for a couple of hours but this is every weekend afternoon and every evening. He’s struggling, I can see that, but I don’t know how to find a way through this without compromise. He says that his health is the most important thing.

I have colitis too, diagnosed this year. I also have 2 kids, 6 and 3, and work full time, so yes, im permanently fatigued. Is colitis fatigue different? I don't go lay down unless dd is wanting company for a nap though. Things need to get done. Im not sure your dp is being reasonable, but maybe his experience of fatigue is different to mine? Sounds like he's not helping himself though if he wont go to a quiet room!

My daughter has Crohn's, which is another IBD associated with fatigue. Now she is on meds which are working for her, her fatigue is much lessened. Hopefully this happy outcome awaits your husband too.

My daughter 17 has UC/Crohns and the fatigue is real.

She can stay in bed all day and also has depression and anxiety which is very common in people with this disease.

What I've found with my daughter is that she puts all her energy into getting through college, her part time job and seeing her friends and has nothing left to give when she gets home.

It can be frustrating because she doesn't clean her room or help with any household chores unless she has absolutely nothing else on that day.

I will sometimes say to her that as she has no plans whatsoever for the day can she please clean the bathroom and loo and tidy her room/change bed sheets. I tell her that once she has done all that she can have the rest of the day in bed.

It's a bit different dealing with a 17 year old as a parent than it is for you dealing with a partner.

She doesn't demand silence but sometimes when she is feeling sick she gets very very sensitive to noise.

It is a horrible disease to live with and there is not much understanding from others. Even the drugs used to treat it sometimes cause fatigue and nausea.

I have crohns, my 72 year old mother has colitis, I also have 7 cousins with crohns or colitis.
Fatigue is awful, the right meds definitely help. However, I am a single mum to a 6 and 3 year old and work as a teacher, I don't get to just get to take to my bed whenever I feel that fatigue hit. I've had to work around it and compromise- batch cooking so on a work night there is something easy to have for dinner, relax with the kids by setting up toys, having a movie night on a Friday as I know the end of the week is harder, etc.
What your partner is doing is saying that his needs come before 4 other people in the house, and he isn't willing to compromise at all. Ear defenders ear plugs, white noise, calm music, changing room, resting while spending time with the kids, he could batch cook at the weekend to support you when he needs to rest after a day at work. But instead it sounds like he takes off to his bed and puts the workload on you, including keeping 4 people quiet.
He needs to compromise, or you'll end up burnt out, resentful, and your relationship will end. There needs to be a balance which requires compromise.
The fatigue is hard, it's awful. But he'll end up on his own if he continues down this path. He needs to speak to his IBD nurse and also consider if he has depression or anxiety (mine definitely increased shortly after diagnosis as it is alot to take in). Counselling will support him coming to terms with his diagnosis, and also join a fb group to meet others going through the same thing.

If I have a bad session I can suddenly feel fatigue and need to sleep. However I Would not expect everyone to be quiet and once I have had my sleep I can normally crack on albeit slowly

he needs to compromise here. He is not the only one in the house and life goes on. Colitis is not nice but he can’t be imposing conditions on everyone

he moves to the furthest room away, he wears ear plugs if necessary, ok kids could be told to keep the noise down a bit but he needs to seek drs help if necessary but find a way to carry on

I’ve had Crohn’s for nearly 30 years.

If I’m fatigued I’ll go and lay down but I most definitely do not expect everyone else to be silent.

Ear buds are a thing.

In the kindest possible way he needs to get
over it and just man up.

I work full time, and have a teen DD, dog, horse and a husband.

Yes it’s a life changing illness. But the more you let it get to you the further you sink.

I have just recently worked out that I may have UC based on my ongoing symptoms. Have not had any diagnosis yet, as I refused a colonscopy last year for suspected diverticulosis.

Have got a plan to start a food diary to see what is actually triggering the flare ups and am going to start taking probiotics too.

Please no comments on get the colonscopy, as my situation is rather complicated at present. Thank you.

Anyone got any suggestions for what helps prevent the flare ups in the first place please?

I went vegan and I've not needed medication for years. Prob not what you want to hear tho 🫢🤣

Sorry but that's pathetic. He can sit on the sofa and watch films with the kids. He just wants to be left alone. Sad.

What medication is he on?

Colitis is a disease and requires medication. You really need a proper diagnosis so it can be treated with medication if you have it. What you eat has little effect (during a flare up you might want to avoid vegetables and stick to white rice/chicken/pasta etc to reduce irritation), but all the consultants I have seen have confirmed it isn’t caused by diet.

You could have IBS which is more diet related?

I'm in a similar situation to you, also refused a colonoscopy as I discovered wheat was a big problem so I went gluten free, which cleared up the symptoms. About a year later I reacted badly to increasing my nut intake (was trying to get more protein as I don't eat any red meat) and again had to eliminate, ditto with strawberries (a real bummer!).

I do recommend keeping a food diary. Sometimes you may even need to keep a list of ingredients if you eat any shop-bought pre-cooked foods. That will help, it does take detective work, though, and I believe everyone is different.

@Jessingtonspa your DH does need to make some concessions, the most obvious being moving to the other bedroom. He can't expect the household to come to a standstill whenever he has to rest. I'd argue that his relationship is more important than his health, because if he loses that almost certainly his health will decline further! He also needs to get medical advice to see if anything can help.

I stick my headphones on and turn up the volume. What happens in the rest of the house once I have done this, I don't know or care about.

Thanks everyone. I know he’s struggling but this doesn’t seem like a fair expectation. He says he’s just asking for some consideration but when I ask him what consideration looks like to him he gets very angry and tells me to use my common sense. I need to know what level of quiet I’m aiming for if this is to work. Thanks for the replies it’s helping me understand what he’s going through.