Friend with Crohn's told she is anorexic and will live 5 weeks if she doesn't take meds - sorry, long.

[IronWoman]

My friend (47) was told today by her gastro consultant that she has been anorexic for the past 4 years and has done this to herself.

3 weeks ago when she was taken to A&E from passing out constantly, she had gone down to 6 stone. She was put straight on a nasogastric tube but she ate along with it too (and she eats loads!). She runs constantly to the loo, rarely she has vomited.

She had her second Infliximab infusion today. She has had growths on her lungs for many years and has what they only this week said was a chest infection but is now apparently her "body breaking down due to anorexia".

She has suffered with continuous flare Crohn's for 7 years and it is the first time anorexia has even been mentioned! I mean would she go to the dietitian and agree to have a nasogastric tube fitted if she wanted to be anorexic?

Her consultant told her earlier that when she comes off her i.v. steroid today and goes on to high dose oral Prednisolone at home, if she fails to continue taking them along with Warfarin and other meds for the rest of her life, she has 5 weeks to live....! He left her in tears and walked off saying he was not prepared to discuss the matter any further.

Then to add insult to injury, just after this news, two nurses came in and asked her if she had just been to the toilet. She lip reads but knew they were talking loudly as the other patients and their visitors heard clearly what they said. Apparently someone had messed the toilet on the floor and wall and accused her as someone had seen her go to the loo. The man opposite (a visitor) told them she had been in her bed for the last 20 minutes and why couldn't they have taken her somewhere private to ask her? She has never and would never leave a mess, she is scrupulously clean.

Understandably, she does not want to make a fuss or a complaint until she is discharged (possibly on Monday) for fear of repercussion.

We met in hospital and we have stayed in contact over the last 3.5yrs by text. I know this ward well as i was admitted at least 6 times over a year and they treated me in pretty much the same way.

As a friend, i cannot do anything except try and support her, but her boyfriend and her are going to make a formal complaint next week. However, the worry is she will be admitted again.

Because of her deafness, she has been ignored and the staff talk AT her rather than TO her - if they bother talking to her at all.

What i would like to know is what can be done? Because of my knowledge and experience of the staff in this hospital i had to borrow a large sum of money to go private rather than go back to the wards where i was mistreated and nearly died after surgery. However, my friend does not have that luxury.

What do you think is the best way forward please? Thank you in advance for any replies.

Contact pals depart. Call the normal hospital number and ask for patient advice and leieason services. They are generally very good explain her concerns about if effecting her treatment.

Defo complain about that dr, blaming the patient is never ok.

Maybe they can change her ward?

Hope she's feeling a little brighter soon

I mean would she go to the dietitian and agree to have a nasogastric tube fitted if she wanted to be anorexic?

Quite possibly, yes and people don't want to be anorexic (!!). Anorexia isn't necessarily a conscious decision to restrict food intake. For example, it wasn't until after I was given medication of which a side effect was appetite stimulation, that I realised I'd been anorexic for twenty or so years! I didn't avoid the medication prescribed to me for fear of weight gain, because I wasn't concerned by weight gain - I genuinely hadn't made a conscious decision to starve myself but I had and quite extensively so.

However, the consultants attitude stinks. The nurses attitudes and behaviour stink and I agree, PALS are the people to contact.

There seems to be several problems here, but I think the anorexia might be a red-herring. My sister was diagnosed with clinical anorexia - she just couldn't eat. There was no suggestion that she had an eating disorder, rather a series of physical problems (including Crohns) meant that eating was something she had to really concentrate on.

There is absolutely no doubt that the attitude of the staff is atrocious - and is probably exacerbated by the fact that your friend is deaf. PALS is the obvious way forward in the short term.

However, longer term can your friend be transferred to another hospital? My sister spent a lot of time in hospitals all over the country, and in her experience the more specialist the hospital the better the treatment - that includes the nursing and care levels as well as the specialist stuff.

It sounds like a lot of poor communication and miscommunication is happening for your friend. Does she have an interpreter with her for important discussions? She should request this and is quite within her rights to ask for a second opinion.

One point that may be confusing the situation is the term 'anorexia'. In medical speak, this refers to loss of appetite (usually with weight loss). Anorexia Nervosa, which is frequently referred to as anorexia is, of course a psychological difficulty with food and weight. So, if a doctor remarks that a patient is 'anorexic', he would probably be referring to appetite IYSWIM?

In regard to him insisting she takes her medication, is there a problem with that? If the treatment is correct, is she not wishing to comply? Or does she think the treatment is incorrect? Sorry, you probably don't have the answers. I hope she gets some assistance. If she has been so unwell for so long, asking fly another opinion sounds very reasonable.

Very interestingly I read recently that anorexia has been dxd for some people who actually have addisons disease which also causes weight loss and passing out. This is also auto immune in primary but because it's so rare a lot of doctors know nothing about it! Could it be a possibility that there is something else going on too that is still as yet undiagnosed? These diseases frequently are combined. I have 3 at the moment.

Many thanks for your replies ladies...
Free, yes i agree that it is not ok for a consultant to blame his patient. We think that he is projecting his frustration at his own inability to cure her.
I spoke to PALS last week and although i know we have to go down the correct channels (i have a complaint to make too), i do feel this could be very time consuming and stressful, and of course stress makes this, and other diseases worse. It took over a year for an aquaintance to get an apology out of them in writing for almost killing her.

Amantes, yes sorry, i worded that badly in my haste to write the post, of course you are right. I really don't feel she has a problem with food and weight gain: i made her chocolate cupcakes and she ate nearly all of them. She does love her meat and in a steroid-induced rant the other day went on and on about having a corned beef sandwich. It was what she was craving but her boyfriend had bought her a ham sandwich and other food she didn't want. I watched her eat half of a very large meal yesterday (i even took pictures before and after to prove a point), although her stomach must be very shrunken, she does really put it away!!

Jee, sorry to hear about your sister suffering with Crohn's. Good point about specialist hospitals, she did attend St Marks many years ago, but it is just too far to go when you're having flares and they really didn't seem to be able to help her. There are so many issues going on with her it is difficult to isolate the most important although we are lead to believe it is anorexia now, her primary diagnosis is Crohn's and at one time this was Crohn's AND UC. The hospital is very local to her and this allows her family and friends to visit. I fear she would become extra isolated if she was moved and therefore didn't have many visitors, due to her deafness.

Matilda, i definitely feel she should have had another person with her when the doctor (and IBD nurse) came to talk to her yesterday. I mean, if she had a terminal illness and given 5 weeks to live, she would have had a loved one with her!! They understandably don't like me 'interfering' when i go and try to find a nurse who can help with equipment alarms and such like. Yesterday whilst standing in the corridor with her boyfriend, (my friend was in the loo and wanted proof that she hadn't left a mess afterwards) an old gentleman fell off a trolley onto the floor (suddenly there were nurses left right and centre!). Also, her curtain was around her when i visited last night so i asked if she was having something done and the nurse shouted out her name twice. I said, "she's deaf" and another nurse turned on me quickly and hissed "we know!". I said "well why was he calling her name if he knows she can't hear him?" She didn't have an answer for that but i found out later that she is one of the nurses who came and accused her of messing the loo.

She has had issues with steroids before (same as me, i hated them) and her body is just too weak to take unremitting amounts of it over 3 weeks. She was promised by the IBD nurse that she would ensure she was weaned off the steroids orally BEFORE she went home. She will take them as she knows that stopping suddenly with no taper will cause more problems and cause problems with her adrenal gland....

Mrspottas - this links into what you were saying about Addison's disease i think!! It is all connected, it must be! All to do with the adrenal gland. Having looked up Addison's and tapering Pred, they do share some common symptoms.

Many thank to you all, i will try and print this off and show my friend your responses.