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.

You sound like a very good friend, she's lucky to have you x

Crohn's and Colitis UK have great helpline. She is not on any specific UC meds.
I suggest you place a call to the GP. They will not discuss her case but will listen to your concerns particularly as she appears to be vulnerable.
Also speak with SS re your concerns.
Once you've done that you need to step back and redefine your boundaries. This all sounds very complicated and there is more than you'll ever know going on. Look after yourself

Just read all your posts. Continuing on from my last post, your friend sounds like she has an eating disorder, drug addiction and other psychiatric illnesses. If she had UC then she’d have medication and a care plan. It doesn’t sound like she wants to gain weight and uses nausea and anxiety as an excuse. Like PP have said, you need to ask SS to get her on an inpatient eating disorder ward so she can gain weight safely.

@PandaBearCub That’s a bit of a leap!

She definitely does have intermittent diarrhoea. And I think the nausea might be linked to the oesophagus problem. An earring disorder would be easy to deal with compared to this.

[quote HermioneMakepeace]@PandaBearCub That’s a bit of a leap!

She definitely does have intermittent diarrhoea. And I think the nausea might be linked to the oesophagus problem. An earring disorder would be easy to deal with compared to this.[/quote]
Unfortunately not much of a leap really. The medication you listed aren’t prescribed for colitis. She keeps saying she’s nauseous and anxious and avoids food. If she’s this thin because of colitis then doctors would’ve tried something else. Did she have a colonoscopy? She definitely needs inpatient treatment for a few months so she can gain weight. Being too underweight can cause abdominal pain, diarrhoea, constipation etc.

It really wouldn’t be in any way easy.

Possibly there is something physical going on but your friend is not on any immunosuppressive medication for UC. If that were the cause, she certainly would be and as a pp said would probably be having surgery.

The stabilising and discharging sounds more typical of the treatment people with ED get to me. Although I acknowledge that I don’t know your friend at all, and could be barking up the wrong tree completely. It sounds hideously complicated.

Honestly, I think your friend could be lying to you and withholding the truth as she likely has an eating disorder.

I don’t believe the hospital discharged her, I think she discharged herself. I don’t think the hospital would discharge her when she’s so underweight. I could be wrong though as it’s covid times.

She either needs a barrage of tests to diagnose a physical problem like colitis and help to get her weight up, or she’s had all that and theyve found nothing so they have told her it’s an ED, and there isn’t that much help available for that on the U.K. as far as I know. Plus she won’t want help as that’s the nature of this beast.

I wonder if she could be sectioned or something as she is a danger to herself? Or perhaps they don’t do that for ED. I don’t know. Perhaps others could advise. I’m sure there is an ED board on MN that you could look on? Or perhaps that’s where this post is on now, I didn’t look!

Either way if you want to help her you need to fight to get her professional help. Would she let you sit in on a gp phone appointment with her and her doctor? As in she tells the doctor you are there and anything he’s got to say can be said in front of you.
Fiver says she won’t allow that if she has an ED as you’ll find out the truth. If she did allow you, you could push for help?

It sounds like your friend is anorexic op. I hope she seeks proper help.

Are you sure it isn't an eating disorder?

When I read this yesterday I also wondered if she had an eating disorder.

[quote HermioneMakepeace]@PandaBearCub That’s a bit of a leap!

She definitely does have intermittent diarrhoea. And I think the nausea might be linked to the oesophagus problem. An earring disorder would be easy to deal with compared to this.[/quote]
In fact anyone with experience of eating disorders will tell you they are one of the most difficult illnesses to deal with, and as a result has the highest fatality rate of any psychiatric illness.

It’s all really odd. When she was admitted to hospital, she was completely delirious as she hadn’t eaten for so long. She was hallucinating and the hospital diagnosed her as withdrawing from alcohol. But she hasn’t left the house in months. She has a few glasses of wine a week in normal times, at most, when friends visit. And in fact lately has been avoiding alcohol as it gives her heartburn. I have been in touch with all her other friends and none of us have given her alcohol or witnessed any evidence of her indulging in alcohol.

I can’t help feeling people want to blame her for being ill, rather than trying to get to the bottom of it.

Anorexia (not anorexia nervosa- it is different) is often linked to IBD because of the way food becomes the enemy.

I have had an ED and I have IBD. She could have both it would be possible.

The poor woman- I often think that women have a really hard time being taken seriously by medical staff. I hope she gets seen by someone understanding soon.

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.

Interesting drip feed.

But I didn’t notice my mum had a drinking problem for years. Years. It was hidden in the cistern and everywhere. Don’t kid yourself that she can’t hide it. From everyone.

I think your friends has multiple issues. If she can drink wine she can eat stuff. I honestly think there is a LOT more to this than meets the eye. It’s probably the empty stomach issues that are causing her pain. If youve got tummy issues the last thing a sane person would do is take alcohol.

And please don’t think we are blaming her and making it her fault that she’s not eating. And somehow we don’t care. She’s under the influence of a dietary madness that takes over the sufferers brain and they can’t help themselves. It’s not her fault. She needs intensive therapy. If she doesn’t get it she probably won’t make it. She needs to be admitted somewhere. And watched like a hawk 24/7 including in the toilet to ensure no deliberate vomiting. And even then once she leaves she’s not out the woods yet. It’s a difficult illness to stabilise let alone ‘cure’.

@Elieza you misread my post, she is NOT drinking alcohol. I have known her for decades and she has always had problems with her bowels in the form of diarrhoea and bleeding, and she has always suffered with rectal heartburn, in spite of being a healthy weight. It has just got steadily worse over the years.

There doesn’t seem to be anything in her list of meds that specifically manages the UC which with the symptoms you describe is shocking to me. DD is on fortnightly injections of Humera plus daily azathioprine and weekly methotrexate.

@SqueakyCaterpillar I know, that’s the problem. There seems to be a big chunk of her medical records missing. The Colitis diagnosis was about 8 years ago, but when I spoke to her doctor in hospital she was adamant it was all self-inflicted and claimed to know nothing about the Colitis.

An ED isn’t self inflicted. I’m saying if she has stopped eating food out of fear it will make her unwell, then it is possible she’s developed anorexia: www.medicinenet.com/anorexia_vs_anorexia_nervosa/article.htm

Anorexia (not nervosa) is sometimes even listed as a side effect for IBD medicine.

I’m absolutely not trying to blame her for her problems, simply trying to share an insight as someone who also has IBD.

OP, why are you so certain she doesn't have an eating disorder? I mean, if she's not eating then she clearly does have an eating disorder of sorts, whatever the reason for it (whether purely psychological or as a 'learned' response to her symptoms). It also sounds like colitis has not been formally diagnosed. Can she go back to her GP for anxiety medication? Perhaps getting her mental health back on track will help with managing her other symptoms and then with the eating?

She could have recurrent diarrhea due to taking laxatives, too.

OP is not giving a consistent picture & even if it's as consistent as OP can make it, her friend is not giving OP a full picture.

None of this adds up. I have Crohn's-colitis so I know whereof I speak. OP is asking those of us with knowledge of this disease and not necessarily liking the responses, but those are not colitis meds and the BMI is a red herring; I've been admitted when I was fairly tubby (prior course of bastard steroids) because the symptoms were so bad. It's very hard to get another adult to accept help with something like this. This lady's experience does not ring true as colitis but the only going where she's been before could well be a toilet planning issue.

Her GP is useless and we suspect has screwed up somewhere. And not for the first time. She found a breast lump a few years ago and went to see him. He told her to come back the following month at which point he told her the lump was nothing to worry about as it was smaller and she was being “neurotic”. We made her go to the Well Woman Clinic and it was found to be breast cancer. She had to have the breast removed. Also, he suddenly took her off her anti-anxiety meds which is why she had to source them from elsewhere.

It sounds like a very complicated mix of general health and mental health issues. My sister has UC (has had it for 20 years) but also mental health issues, anxiety issues, disordered eating issues, alcohol issues etc. and it is very hard for GPs and specialists to properly treat her from time to time. But it's really not acceptable that your friend isn't getting acute help right now given her BMI.

The hospital are emptying the wards due to Covid. Apparently it was spreading like wildfire and they also needed to free up beds.

We know her. We’ve seen her suffer with bowel pain and bleeding. We know she’s not drinking to excess. Nobody has bought her laxatives. Yet on admission to hospital after not eating for 2 weeks and delirious, why did the hospital immediately just assume alcohol withdrawal?