Inflammatory Bowel Disease

[PollyHutchen]

Close family member currently awaiting further tests, but GP has indicated this as most likely diagnosis.

Are there any Mumsnetters who are dealing with Crohn's/Ulcerative Colitis while also coping with work and small children.

Relative has 4 year old with quite a lot of additional needs - currently in special unit attached to mainstream schools. Also 2 year old for who nursery currently seeking ECHP. Work-focused husband who is planning to extend his responsibilities so that already long hours are extended and there will be more trips away - both in UK and beyond. He is a caring parent when around, but my relative has been taking sole responsibility for daily tasks such as cooking, organising general childcare, accessing the extra help the two children need. He doesn't really even do simple stuff like make her a cup of tea when she's tired. It wouldn't occur to him. Not a bastard, but rigid in his thinking. She is currently working 3 days a week, with some additional duties in evenings and at weekends.

I am interested in knowing more about the sorts of adaptations women with Crohn's/ulcerative colitis have made after being diagnosed.

I have a DD16 with IBD.

I can't say what it would be like if she had to run a house and look after children but it was tough for her managing school/college and she is often shattered after a day at her weekend job.

Initially it will depend on which treatment is offered as some are time consuming ( infusions). My DD had a tapering dose of steroids and immunosuppressants. She then went on to have infusions every 6 weeks which worked well and put her in remission. Some people have a liquid diet prescribed for a set period of time too. DD is now switching to injections every two weeks. There are side effects to some of the drugs and being immunosuppressed means you are vulnerable to any bugs doing the rounds.

The disease can affect people in lots of different ways. Fatigue can be awful. Joint pain in addition to stomach pain and nausea is frequent. Even the eyes and skin can be affected. Sometimes my DD will feel absolutely fine for a few weeks and then other times she has no energy at all. Depression is common in IBD patients too. DD has had to go on anti depressants.

She has lots of hospital appointments for check ups , treatment and regular blood tests so managing work and college around this can be tricky.

It's a misunderstood disease and other people tend to downplay it if they hear you have it - often mistakenly assuming it's just like IBS and they assume you can control it through diet which you can't.

She needs to make sure her DH is fully educated about the disease and how he can support her.

My kid is a teen now, but I did (Crohn's). You don't say how active that disease is currently for your relative. At its worst for me, it was very bad indeed, and I couldn't do anything at all. I had a colectomy years ago, and while that wasn't a cure, I have never been as ill since.

While my child was small, I worked 3 days a week, and partner took on their share too although they sometimes had to work away for weeks at a time. It was absolutely exhausting, but we got through it. Not a very tidy house, but everyone was clean and fed.

I would suggest your relative keeps on top of the concomitant nutrient problems with IBD. Low iron, for example, from blood loss and not being able to eat much. Anaemia is exhausting and can give other problems like persistent headaches. Low vitamin D can also make people tired. They need to do what they can to help themselves or their spouse will burn out doing everything. Hope things get better for the family soon.

Sorry@PollyHutchen I misread your post and thought it was the husband who had the IBD and wasn't doing anything around the house; that'll teach me to reread before I post. The advice on nutritive support stands though, it can really make things harder.

Thanks. That is really useful.

Look at C&CUK, brilliant informative charity.
Lots of information, advice and guidance.

Fatigue is profound and debilitating.