Ulcerative Colitis and BMI of 12

[HermioneMakepeace]

Hi, I am posting on behalf of a friend. She suffers from Ulcerative Colitis. She has a flare up every few months. She is having a particularly bad run at the moment due to a lot of stress in her life. She is hardly eating and her BMI is 12.

Does anybody hear know anything about UC and have any tips for things that might help? She is on meds, but they are not working and the hospital are saying there isn't anything more they can offer.

Thanks.

UC is really painful, I assume she’s on prednisone & other medications to help? With a BMI of 12 I’m surprised she isn’t in hospital, it must be so hard to function. Does she take pro-biotics? My UC is dormant at the moment and has been for about 15 years but in my early 20s it was dreadful.

I have UC and as it’s an autoimmune disease I find stress makes it worse and diet do I think she really needs to build up her immune system. I found kefir really helped, obviously avoiding too much fibre but she really needs good healthy nutritious food in line with UC.

If the meds aren’t working maybe she needs to take time off to recover ?

With the stress, is there anyway she can change her life? I was told to change my job as I worked very long hours in a v stressful environment. I didn’t drink alcohol, avoided all the foods I was told to & exercised. I’m trying not to offer medical advice as my knowledge will be out of date.

With a bmi of 12 she could die at any minute. She should be in hospital.

Has she been back to see her doctors recently?

So, pro-biotics and kefir. Any other suggestions? Thanks.

A second opinion and hospital admission urgently if BMI is 12.

I find it hard to believe the hospital would leave her in a state of flare up and a BMI of 12. My eldest ds (18) had UC dx in January he's just started a long term immunosuppressant drug as he's flared twice since his initial dx. I understand that the next stage would be to a an IV biologic agent every 8 weeks if the immunosuppressant doesn't keep him in remission. His consultant stressed the importance of remaining in remission as inflammation damages the bowel function over time (leading to the need for surgery/stoma) and massively increases the risk of bowel cancer. Has your friend perhaps been told surgery is her next option and doesn't want it? With a BMI of 12 I would think she's in grave danger of organ failure so something needs to be done very soon!!

She's been in and out of hospital. They put her on a drip for a couple of days then discharge her.

I have UC. What treatment is she on? Have they spoken about surgery? BMI of 12 is horrendous and highly dangerous. She needs to be hospitalised. She needs to be admitted.

My DP has UC, at that weight she needs to be in hospital immediately.

Has she been on the elemental diet at any point? It works for lots of people. I think even partial elemental with something like absorb+ is supposed to help. It’s also a way of getting calories without actual food so should help with her BMI.

I agree she sounds as though she should be admitted to hospital.

Does the consultant know her BMI is 12?

I have been an impatient several times (not for surgery, just observation and meds) with a much higher BMI than that.

I don't think the hospital can have no more options if her bmi is only 12 ; for a start she could have specialised nutrition.
She should be in regular contact with the team managing her medication and having her regular blood tests which as well as checking that the meds aren't harming her give an idea of her inflammatory levels. There are lots of treatment options up to and including surgery . Each one can take a few months to reach optimum efficacy so it can feel a bit as if you have been abandoned to wait it out but she will be having blood tests and can discuss the plan with the Ibd team or her GP. She clearly isn't eating enough and imo a bmi of 12 is Dangerously low. I suspect she needs more support in accessing help and advice.

Agree she ought to make a fuss and push for referral to hospital and consultant at the very least and advocate for admission.
There are plenty of medication regimens that treat severe UC, including more recent ones over and above steroids and immunosupressants. If however, it cannot be treated with medication then she should seriously consider surgery, I know of many people for whom its been life changing.

Serious consultation with gastro consultant would be useful to assess for any cross over conditions too.

Best of luck to her and I hope she has some help and starts to improve soon

Hello everyone, just an update, my friend became delirious and was admitted to hospital. She made an almost instant recovery after being put on a drip and having injections (not sure what of). She started eating again and was feeling really well, although hated it in hospital. The delirium disappeared and she sounded normal again.

They discharged her and a week later she is worse than before. She’s nauseous, has a severe pain in her rectum and has completely stopped eating.

We honestly don’t know where to go from here.

She's at severe risk of organ failure so also am surprised she's out of hospital.

@lljkk I know, me too! They said they wanted her out because of Covid. And she was feeling better so wanted to leave. If only we could work out what they were doing in hospital and replicate that at home I am sure we could help her to get better.

The drip will have meant that she was nourished and hydrated enough to improve some of her symptoms regardless of whether she was willing to eat in hospital so you can't replicated that unfortunately.

Does she understand that she will most likely not make it if she carries on the path she's on? This must be very upsetting for you.

To be honest, I really feel for you but I don't know if you can do a lot to help someone who won't help themselves unless you can logistically and mentally manage having her live with you for a while so that you can provide food and drinks and company. This obviously isn't something to be done lightly. I wouldn't do it in my current situation. Her behaviours aren't a symptom of colitis as far as I'm aware. She needs good mental health support from professionals but I know that's hard to get at the moment.

Regarding food, when my colitis was flaring badly I didn't feel like cooking or eating really but was mentally well so knew that I had to cook and eat otherwise I'd go downhill. With trial and error I found my 'safe' foods that I could eat without obvious symptoms afterwards. For me it was baked chicken breast, butternut squash and mashed potato. Yoghurt and fruit puree for breakfast (I ended up buying the kids pouches of fruit purees when I felt too wiped out to mess around making these). White toast with butter and vegemite (good easy source of vitamin B). Having said this though, I don't think that food is the real issue here.

@INeedNewShoes the nausea is the problem for her. Do you get nausea at all?

Nausea wasn't a big problem for me, as long as I took my medication with food.

I was on an immunosuppressant called Azathioprine. As long as I took it at after dinner so that a) it was taken with food and b) I'd be asleep when the worst side effects arrived, it was easily tolerated.

If she's taking strong medication like this on a very empty stomach it will make her nausea worse, so I can see that she might get stuck in a vicious cycle.

Also, I found that Steroids affected me mentally. I became very agitated on them so was taken off them.

When was she recently discharged from hospital? Did she discharge herself?

I’m thinking if it was a while ago they may not have been set up for covid and non covid areas but now they might be better equipped?

Nobody wants to be in hospital but sometimes you just have to stay in. Next time she is in she should not be saying she wants to go home as she feels better, she needs to stay longer and get fitter first. Even though she’d rather be at home. Who wouldn’t be how’s that worked out for her, it hasn’t.

If you could replicate what she was on you could indeed help her but I think she needs specialised help in a hospital/centre rather than be at home. And very careful management of her diet and things.

I hope she makes it, I can see why you’d be worried about her.

She was discharged last Thursday. They wanted her out.

OK, so I’m gradually getting more information on my friend. As well as Colitis, she also has Barrett’s Oesophagus. I also had a look at her meds. She’s on the following:

Cyclizine
Colecalceferol
Thiamin
Folic Acid
Magnesium.

I am really worried about her but don’t know how to help. She was a bit better today, the nausea had subsided and she managed to drink half a shake that the hospital gave her.

If anybody has any suggestions, I would really appreciate it. Thanks.

None of those medications are used to manage colitis as far as I'm aware.

If her colitis is flaring to the extent that she has rectal pain it seems amiss that she isn't on any treatment for it!

Cyclizine is for the nausea.

The others are basically vitamin/mineral supplements.

Things aren't adding up here.