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.

It all sounds very complicated... but I think you sound like you don’t have a very good understanding of eating disorders if you think they are self inflicted and easy to treat.
It may just be my sensitivity to the issue but reading behind what you say about eating disorders seems to say that you think badly of people with eating disorders. They are incredibly complex and often symptoms don’t fit that nicely into the tick box list for a specific diagnosis. They are certainly not easy to treat. It sounds like your friend has a complex mix of both physical and mental illnesses. Also, a BMI of 12 is pretty much at risk of death. 6 stone at her height is still low and gives a bmi of 14.3 which is medically defined as anorexic and dangerous. She should still be admitted to hospital.
Her current bmi will mean that she is cognitively impaired and probably not able to think rationally and care for herself in any way. She will also struggle to process what doctors are saying and to act on any input or instructions/care they give her. She needs to get and keep her bmi above 15...ideally 16.
I hope you get to the bottom of this for her sake.

I am aware that a bmi above 18 would put her in the healthy weight category...but 16 plus would be less dangerous.

@HermioneMakepeace they could be anything....or nothing. They could be worse than nothing..... Talc/chalk/any old white powder you can get your hands on... Dealers don't care so long as they get paid and don't get busted (and the 'friend' doing the supplying is a dealer not a friend). It could be whatever's in those tablets that are causing her symptoms. The fact that you've only just found out that she's buying unregulated, controlled drugs suggests that there's probably a lot more that you don't know about her just yet.

If her malnutrition was thought to be due to uncontrollable uc then she'd quite likely have had surgery already (unless she's declined whilst having capacity).

She's very lucky to have a supportive friend, but this is very clearly a complicated story and I wouldn't be terribly surprised if the medical teams involved so far have a slightly more objective idea of what's really causing all of this. No one on here can really advise you properly about how to help your friend because if you don't know the whole story, certainly none of us do. I would keep an open mind, be there when you can but definitely look after yourself.

A GP won’t be able to do an initial prescription for any of the 5-ASAs or immunosuppressant drugs for colitis.

Colitis can only be diagnosed by colonoscopy and then treatment prescribed by a gastro consultant, usually an IBD specialist.

You can’t just walk in and suggest humira. There are policies on escalation of treatment. There is a pyramid of treatments and you generally start at the bottom of the pyramid and only make you’re way up to the biologics at the top of the drug pyramid if other treatments fail. This is because they have potentially risky side effects. You also tend to need to undergo other tests before starting on the big drugs to check they will be safe for you and to get dosage right.

Basically, without a colonoscopy, meaningful treatment for colitis won’t be started, so this should be the first line of attack in trying to get help for this condition.

@TamingToddler

I'm going to disagree with above posters I think because what you're describing sounds exactly like my DP. He has crohns and colitis, and the list of medications you've listed are all meds he's been prescribed but only needs to take at a low weight, although he also takes ustekinmab injections (he's had humira, azathioprine, methotrexate etc as above posters have listed but they didn't work). He had a hospital stay in August due to low weight, chronic fatigue and bleeding with diarrhea. He was diagnosed at 9, has been under a specialist since then and has had every medication under the sun but when he got to hospital they had absolutely no record of anything. Everything is paper form with his specialist, they created a summary care record page for him (accesable by all NHS staff) and listed crohns on there but no other medication is listed. He was put on an IV drip of steroids for a week, went in with a BMI of around 14, and was discharged after a week and sent on his merry way with a course of steroids. What you're describing is entirely plausible for me because we're living through it. DP has anxiety due to his crohns and colitis too, doesn't want to leave the house because he might have an accident etc, so the valium makes a lot of sense, living in fear you're going to poo yourself when you leave the house isn't nice. An eating disorder might make sense too and I'm not disputing that, but DP couldn't eat because it made him feel so poorly and his weight got very very low, also has horrible acid reflux so again won't eat, he does have fortisip protein drinks for when he can't eat though to get some calories in. This is just my experience though and could be totally off the mark for your friend, but I wouldn't rule out that she's telling the truth.

This is so similar to my sister's experience over the past 20 odd years. It seems like the medical community may still not have a great handle on this condition, how to best treat it and the devastating effects it can have on people that goes way beyond just needing a toilet frequently.

I had something similar when I was young. It was all but impossible to get anyone medical to pay attention, as they all leapt to the eating disorder conclusion and ignored everything else.

In the end I did like a pp, found a very limited set if food I could cope with and very, very gradually increased first the quantity then the range until I reached a normal BMI.

30 years on, I am still a ‘fussy’ eater, and have a large range of food I cannot cope with but you wouldn’t know it unless you knew me really well.

Just want to say that I definitely am not advocating any particular medication or that she tries to get her hands on anything other than through a proper medical professional. I raised the medication point only to indicate that there is help out there and she should advocate for herself and best she can (really hard when you're not well, so perhaps you can help her get the right help).

Sorry OP I can’t see where you’ve replied about how she was diagnosed with UC? Was it after a colonoscopy?

I had some stomach pain, but it was the huge loss of blood and diarrhoea that caused me to seek medical help.

I wouldn’t eat because I needed to go to work and I was trying to minimise the need to go to the toilet, so I really do sympathise with your friend.

Has she told her doctors about the illegally obtained Valium? It’s important they know in order to test it to see if it is causing her problems/making them worse.

For UC I would start of Mesalamine tablets, and then foam, and then onto steroids (foam and then tablets) as it got progressively worse. I’ve been admitted and had steroids via an IV and that has always got a handle on it. But if it hadn’t, then there are further steps after that. It’s always been described to me as a ladder of medication.

OP are you going to her appointment with her on Tuesday?

Will you be in the room with her and the doctor/telephone the doctor is phoning on so you can hear on loudspeaker what is said and get permission from your friend to help her during the call if she’s not making sense or gets confused?

I think you have to go in with a game plan to help your friend. Discuss prior so you’re both fighting for the same things.

You may be surprised by her resistance to suggestions of inpatients, just saying. As another poster said, she won’t be in possession of her full faculties as she’s very ill.

She needs tests and admitted somewhere.

The doctor needs to know she’s taking street meds.
He needs to prescribe an alternative for her. Which he’s probably done in the past but she chose not to take it.
If it was an anti depressant they don’t act right away like what she’d be used to so she’s probably feel they were useless, not understanding they take 3-4 weeks to kick in.

You can’t make her do the things that she needs to do. Inpatients would be able to keep a better control of her. And keep her in until her antidepressants kick in. But she’s has to not discharge herself. That’s the bit you might need help with from her doctors or social workers.

Good luck OP. I hope this works out for her. I remember Karen Carpenters‘a story. You get too light your heart chucks it. I hope your friend gets the help she needs now with your assistance.

@TamingToddler Thank you SO MUCH for posting. I am sorry that your DP is going through this, but it’s such a relief to finally hear of someone going through the same thing.

@HermioneMakepeace No problem. I do think crohns and colitis still isn't understood by a lot of GPs. If DP goes to the doctor with chrons and colitis issues they never do anything, just tell him to speak to his specialist who isn't always available. Oh and the above poster that said a BMI of 12 means someone is clinically anorexic, that's total rubbish. To get an anorexia diagnosis is so much more than just weight, it's a very complex illness. DP has had a bmi of 12 before, doesn't make him anorexic, anorexia is nothing to do with weight at the beginning. Perhaps they meant you only get put in inpatient with a low BMI.
I hope your friend gets the treatment she needs, I'd push for a colonoscopy, which they might not even do when she's so poorly. The hospital couldn't do one for DP as there was no point with all the blood, but they did a scan and ultrasounds and could see the inflammation in his bowel.
The pain she describes as not like tummy pain is relatable because DP says he knows its his bowel and not like a tummy ache. You really need to advocate for her to speak to a gastro specialist.

If she has a diagnosis of IBD she should be under the care of an IBD team. I have crohns and would not go to the GP in a flare I would contact the IBD team a the hospital. If she’s this bad she needs to be on meds for colitis. None of the things you’ve listed are proper medications for this. I have read the full thread and all other issues aside, if she has colitis and she’s not in remission then she needs treatment.
If she has no one to contact at the hospital then she needs to see her GP and make it clear she needs a referral to gastro.

@TamingToddler no need to be rude. If you disagree you can do so politely rather than saying something is rubbish. When I say anorexia, I mean not nervosa. That is the term used to describe someone who is unable to eat or has an eversion to food and can be caused by a physical illness. Anorexia nervous is different...and as someone who has loved with it for 18 years I’m actually quite familiar with the complexities of it.

Aversion not eversion

@Honestadviceneeded I stand corrected then, Although can't find anything about anorexia (on its own) being anything at all to do with weight, and that you can have anorexia and a normal BMI. I know in DP's case he can consume 5000 calories a day and still have a BMI around 14/15 so can also be nothing to do with lack of eating or aversion to food. I genuinely didn't know there were too types actually, interesting. Sorry about your disorder though.

OK firstly I agree none of the meds relate to UC. However I have been diagnosed for well over 20 years and have been in the main on a self management program. Often I take no meds for months on end. Perhaps she has had them in the past but not for sometime. Also you have mentioned delirium so she would not necessarily remember all of the history etc. The anxiety of going places she doesnt know is a symptom of UC. Not knowing where a toilet is has kept me indoors many times.
Maybe she is drinking, maybe she isnt, maybe she is taking valium from the street maybe she sees no other way. Maybe she has an ED or maybe she has some other psychological disorder.
It seems she has a good friend in you and perhaps she needs you/a professional to advocate for her. If she allows you to speak for her, shout and shout loudly.

I spent this afternoon with her. Her phone is beeping all the time with messages from her friends asking how she is. She also had a call from the council offering help with housework and her GP offering her SSRIs. I have been picking up fancy food from M&S every day and she’s eating it. I think she’s on the mend.

@HermioneMakepeace

It’s not anorexia. And this thread gives an interesting insight into what is happening to her. Everyone blaming her for her condition rather than trying to work out what is wrong.

Why are you so sure it’s not an eating disorder? People with an ED are good and lying. Your friend isn’t on any medication for colitis. She hasn’t had a colonoscopy. Her stories about hospital and appointments do not make sense. No one is blaming her. This disease is a complex psychiatric condition that creates many, many physical issues.

Your friend needs to be an inpatient for a while at that weight, to gain weight safely and for a psychiatrist to get to the root cause - psychiatric and physical. They would be able to do blood tests, stool tests etc there to see if it’s a bowel issue, which would require further tests. You say she was delirious from hunger and takes random drugs she buys from “friends” in other countries. This is not good.

Did she have these issues when she was a healthy bmi?

@PandaBearCub I am sorry to say this, but can you PLEASE stop projecting your issues into my friend!!!

Op as a nurse I am concerned that she is on no medication for her UC. I would also question how it was diagnosed, as a previous poster said it would have to be diagnosed through colonoscopy and biopsy's. These are questions that need answering.

If she has had a colonoscopy she needs to be referred back to the gastro consultant to sort out her UC.

If she has NOT had a colonoscopy then, given her symptoms, you need to ask why she is not being referred for one under the two week wait protocol as her symptoms are suggestive of bowel cancer. This needs to be pushed with the GP, if she has not had one there is no excuse for not referring her - she fits the clinical criteria.

I would request that she is referred to a dietician, although I find it very surprising that she has not already been. It would be done as an automatic referral given her BMI on admission which makes me wonder if she has been seen but is not engaging with them?

Often bowel issues do go hand in hand with anxiety, stress and mental health issues, understandably. I think that the illegal Valium is something that needs to be got on top of ASAP. You say she was admitted delirious but in reality is taking unregulated smuggled in drugs. She could literally be taking anything! If she has an inheritance that would be well spent on some mental health support as you suggest she has long term issues and I would wonder if her physical health would be much improved by improved mental health.

@Rozbos thanks for your post. We had a call with her GP yesterday who confirmed the diagnosis of Colitis and Barrett’s Oesophagus. She offered my friend SSRIs, but friend declined them as she is worried about ‘feeling funny’. Nevertheless, I will persevere as we looked up side effects afterwards and they seemed to be limited to physical rather than mental things.

The GP also offered for her to ‘go and see someone’ for her anxiety and she seems quite keen to do this.

In the meantime, I am taking her food every day and she’s eating it. We have another friend popping round in the evenings so she is well looked after.

The symptoms tend to come in waves every few weeks so we are just feeding her up in anticipation of the next bout of nausea, diarrhoea and not eating.

[quote HermioneMakepeace]@PandaBearCub I am sorry to say this, but can you PLEASE stop projecting your issues into my friend!!![/quote]
She sounds exactly like my friend who passed. Just wanted to offer some help for your friend.

@PandaBearCub I know you mean well. Sorry to hear about your friend x

Op - I'm sorry your friend is going through such a rough time, she's lucky to have you fighting her corner and her situation certainly seems complicated.

One thing- (clinical) dehydration is a terror for causing nausea and it could well be the drug she was treated for in hospital.

She needs to keep her fluids up and as she's suffering from diarrhoea it's not simply a case of drinking water. She needs the salts to balance it, so look at isotonic drinks - rehydration salts from the chemist.

Do check its ok with her medical advice but i imagine it could make a big difference to how she feels. If for some reason she can't have rehydration salts then at least get her some isotonic sports drinks (they're not fully isotonic so don't treat medical dehydration but they could help).

*I'm not medically trained BTW