Husband's IBS

[JayJayJay87]

AIBU to be struggling with my husbands IBS?

Burner as dont want to share medical info on my account!

Since a few years into our relationship my husband has suffered with IBS. He has had regular flare ups and periods of 'remission' over the last 10+ years, with multiple drs appointments. We have tried lots of different approaches to managing his IBS. please dont give advice for miracle cures!

He is currently in the middle of a 12 month long flare up which has been particularly bad, and he is really suffering. He is taking medication which has improved things slightly, but the impact on his life has been more significant than ever before.

I need somewhere to vent because I am also finding supporting him really hard, and have noone I can talk to about it without sounding like an awful human! The only person I really want to talk to about it is him, but I dont want him to feel like a burden, or create extra pressure and stress.

Since this recent flare up I have ended up taking on more and more of the stress of running a household with two young children so that he can avoid aggravating symptoms. I do all drop off and pick ups so that he doesn't have to rush to and from work. I take DD1 and DD2 to all their clubs and parties so that he doesnt have to worry about toilet access. I plan and cook food to try and manage symptoms, and plan family day trips around toilets, flexible timings and taking 2 cars so that he can leave at short notice if he needs to.

Its got to the point that, even if he feels up to taking the kids I have to be on standby. He recently had to leave DD1s school play half way through as he was unwell. I couldnt leave work at short notice so she ended up without someone in the audience. The kids are starting to notice that he doesnt come with us on day trips etc and i just find it so upsetting that he's missing so much special time with our family.

I am happy to do these things. I want to be supportive and he is working really hard to feel better too. Im just finding it so relentless, on top of feeling worried about him and hating seeing him in pain. I dont know how much longer we can keep going like this.

So, AIBU to feel down and upset? Do I need to suck it up and count my blessings?

Surely he needs further investigations? My adult dd was told ibs for over 15 years. She actually has Crohn's disease...

Sounds really stressful and a lot to be in charge of. Are there any changes you could make to help it be more manageable for you (outsource stuff like cleaning, would meal kits like gusto work for your DH to reduce food planning, drop any DC hobbies, get friends to have the kids for playdates and do something just for you...)?

Or even drop a day at work?

Living with something so disabling must be awful for him. However, is there a reason why all his care management falls to you? Does he not meal prep/cook? Does he ever research and arrange trips specifically for his needs? Is there no breakfast clubs the children can go to so he doesn’t feel rushed getting to work? It reads like you’ve essentially become his carer and a single parent, your wellbeing matters as well.

I understand he might not be able to do stuff out the house in case he needs emergency toilet access etc

But what is stopping him planning meals and doing an online shop for example - why are you doing all the meal planning and cooking to manage symptoms?

Do you feel like he is using this as an excuse in some circumstances or is he trying his absolute best to do what he can when he can?

Also you mention he can't rush too and from work...couldn't he get up earlier so isn't rushing in the morning? Or request a change of hours or more wfh as reasonable adjustments to his symptoms? What is he doing to try and help himself and minimise the impact on everyone else?

I feel sorry for you both. I really do. Sounds miserable for him and difficult for you.
Like others have said, I think you need a rethink around certain areas to make it work better for you. He can surely take on meal prep and handle some gentle housework?

Is it definitely ibs as I spent 10 years getting told I have ibs and infact I have I have ibd. Maybe he can’t go out and about with his kids but surely he can do his share of the housework. Even in a flare he isn’t in the toliet or bed all day so why can’t he do hoovering, washing up etc. if he’s so bad then he needs more investigation as that isn’t normal.

It sounds more serious than IBS. Are you sure it isn't Crohn's or ulcerative colitis? Both of those need urgent treatment - but the right treatment can make a massive difference.

Thank you for being so kind with your messages and confirming im not a bad person!

He does try really hard to do what he can. But thinking about your comments I have probably ended up doing too much by trying to help and it has shifted too far the other way. I think I need to find a time to have a conversation about finding balance.

Interesting messages about further investigation. He is really resistant as he has felt brushed off in the past. Maybe another thing to discuss.

I totally sympathise. My DH has a condition that flares up (pain) and sometimes he just about manages to do his work (luckily he works from home, I have no clue how he would manage to get to and fro an office) and then crashes out in bed for a couple of hours.

He can't help it, he is medicated, he feels very despondent about it all and I have lots of sympathy for him.

BUT......... What about me?? What about my life??

We don't have small children, and i work from home a lot of the time and my hours a very flexible. But I still find it a strain.

12 months seems a long time for it to be dragging on. Has you DH been back to the Dr recently?

I can't offer any practical advice, unfortunately. Others have suggested he take responsibility for home-based chores to take some of the load off you and that seems sensible.

I would suggest telling him it's becoming difficult for you to keep all the plates spinning, so what are his suggestions? A cleaner maybe?

I agree with other posters there is no reason he can’t order a home shop, research recipes, cook, clean, do house admin - why on earth are you doing all this stuff?

Why can’t he get up earlier to take the kids to school? I am presuming he is working still so he isn’t incapacitated. He needs to take some responsibility for his health, stop impacting on your health (your health is just as important) and step up!!!

Sounds more like inflammatory bowel disease than IBS. I have IBD, I’ve never heard of a long IBS flare

He needs to do everything he can at home to compensate for the fact you have to do more running around.

Speak to him about the effect this is having on you. You ARE NOT selfish for bringing this up with him. The reality is his condition affects you all.

My DH has colitis and also diverticulitis and at the moment it seems like it’s one thing after another. How he is staying upbeat about it I don’t know. I try and be as supportive as much as I can, but it’s hard when I can see he’s in pain with a flare up at the moment. We were on holiday last week and he did really well, we didn’t go anywhere too far from toilets or the home we were staying in. We have adult DC, who work, so don’t see him during the day. The medication he’s been on has worked quite well up-to now, he has emergency antibiotics for a flare up, but would rather see it out.

He needs to be insistent on a consultant referral. After being told most of my life that I had IBS, I finally got a referral several years back to find that it was actually severe bile acid malabsorption and the medication has helped.

This.

It sounds more serious than IBS. I have Crohn's and it sounds like when I have a bad flare up (of course, there are many other possible causes).

IBS should only be diagnosed if other screening has not revealed a condition - has he been tested for coeliac disease, investigated for IBD (crohns or colitis)? Back to the GP I think.

Another vote for IBD here. My OH has colitis, which went unmanaged for many years before we were together, they just didn’t have the meds for it. He suffered terribly. But they’ve managed to get it under control now and things are much better for him.

I’d be annoyed with your husband for failing to follow up any further investigations, get to him the gastro ASAP!! This can be managed.

I’ll be totally honest, I think he probably needs to put his big boy panties on and do things even when he feels unwell and you need to give him space to do so.

I have chronic GI issues (exocrine pancreatic insufficiency, which he should be checked for btw, if they haven’t, you can do the test yourself privately for probably £100). My issues sound very similar, fatigue, discomfort, frankly I poo myself sometimes in uncomfortable situations.

But it largely doesn’t stop me doing all the things you say you do now. I do nearly all the school runs. I do the meal planning and shopping and cooking. I run dc to activities and play dates. I work, including with some commuting and travel. I have hobbies.

Yes, sometimes I feel rubbish. I do take time off work as needed. I’ve had a couple extended periods of sick leave. I will nap if I need to. I will stay home from a planned activity if I have to. But mostly, I take my medicine. I watch what I eat. I use toilets when I find them. I carry wet wipes for emergencies. And I crack on.

12 months isn't a flare up it's a chronic condition and doesn't sound like IBS.

I have IBS.

For some people (and to be clear I am not diagnosing your husband in any way) with bowel issues, anxiety can also impact significantly on them. And this of course is understandable given the risk of an ‘accident’.
This can unfortunately cause increasing avoidance of situations and impact on the family too. This may not apply to your husband and if it does, it doesn’t mean he doesn’t have a bowel issue as well. Often there is both. If it might apply to him then alongside medical investigation perhaps some Talking Therapy/CBT may be worth a try.

My dh has an autoimmune issue which causes a similar difficulty for him. However he also gets anxious. On a rational level he can (sometimes not always) acknowledge that if he is relaxed at home the ‘urgency’ is very much reduced. Once various pressures are added in his anxiety rockets - such as unfamiliar locations, not sure where toilets are, being in a position such as a school play when it would be embarrassing or upsetting to leave.

Also just to add OP you may have to make a conscious effort not to let this stress you. I was picking up on a lot of his stress and it wasn’t helpful - so then there were two of us overly worried about toilet access etc. And my empathy started to reduce as it is frustrating.

Please make sure you have time for yourself whilst still supporting him.
I do take short trips on my own and/or with the dcs - especially if dh is going through a stage of trying to micromanage events to an unreasonable level.

i have Crohn’s. I have to manage around it as single mum with much needed ft job. It makes me deeply anxious and ill. But there’s no one else to pick up the household routine so I do it. Your dh needs to pick up the slack more, stuff round the house as others have said, organise his own minimising-symptoms diet, get diagnosed if it’s showing such a long term flare, take meds to get through the kids’ events. I am clearly sympathetic to anyone with this type of thing but it’s also not a get out of gaol card.

Tell him to go back to the GP and ask for a faecal calprotectin test. It will measure the amount of inflammation in the intestines and what-not and is a non-invasive thing (you literally just hand in your poop in a test tube and they send it to the lab). No need for scans and probes etc.

I was fobbed off for years and told I had IBS. Finally got a few tests done and my levels were in the hundreds. Turns out I had Crohn's. Sucks but with meds it's manageable and I live a normal life.