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.

Who diagnosed her UC originally, and why did they not prescribe her any meds for it? Why is she not having follow-up appointments for it given she is so unstable? Why hasn't her GP referred her back to the consultant who treated it last time?

Also GPs don't prescribe valium for anxiety long term, it is against all guidelines as it is very addictive. It should only ever be prescribed as a short term basis in an emergency.

There are other meds they can prescribe for anxiety long term, but she's not on any of those.

Has she seen her GP at all throughout any of this?

@Cokearama those are really good questions. She was told it was UC by a doctor she saw some years ago but it was never followed up. She has been in hospital a few times but they just put her on a drip for a couple of days then send her home.

Interesting about the Valium. We have a Medication Review on Tuesday. Are there any suitable alternatives to Valium that we could discuss with the doctor?

UC is diagnosed by a colonoscopy- not be a GP.

Has she ever had a colonoscopy?

I’ve just scrolled back and she read her medications- none of that would treat UC.

Has she ever actually had investigations into whether this is IBD?

If she has UC, she really needs to be getting regular colonoscopies. My sister gets them yearly. Chances of colon cancer are much higher for UC patients. I think a lot of my sister's mental health issues have stemmed from her UC (especially agoraphobia as she's so worried about being near a toilet). It is a devastating disease to have to live with and your friend should insist on a proper diagnosis and treatment plan. I agree with the poster who said a GP does not diagnosis it - she needs to see a gastroenterologist and have a colonoscopy.

The thing is, she doesn’t have ANY stomach problems. No bloating, no pain. The problem seems to be almost entirely in the bowel. But then she’s nauseous so I don’t know.

But why has the bowel pain and nausea not been investigated? Has she had blood tests? A stool sample test? A colonoscopy or gastroscopy? A referral to gastro consultant?

I'm sorry but if she turned up at her GP with a BMI of 12 and her symptoms, why haven't they referred her?

I just don't believe a GP would examine a person with a BMI of 12 and those symptoms and not in any way panic and refer, probably as a 2 week wait!!

Unless they know something you don't of course.

The bowel is the colon. My sister didn't always have pain and rarely bloating. But there were time when she'd have diarrhoea all day for days straight and often just passed blood. Perhaps she was odd, but I don't think she was in a lot of pain usually.

It’s possible that she hasn’t been going for her appointments. She has anxiety about going out. I don’t think the fault lies entirely with the medical people.

But there were time when she'd have diarrhoea all day for days straight and often just passed blood.

This is what my friend is like. May I ask what meds your DSis takes? I want some suggestions to take to the Medication Review.

I thought she had a medication review? Is that not an appointment?

@HermioneMakepeace I will ask her, not sure actually. She is in America and I think she has been on something called Humira recently. I know she is on of off steroids. She's not constantly on medication though. She's quite medication adverse as well, so lets a flare get really far along before going to her doctor for help. Untreated, UC can lead to bad co-conditions. Right now she is suffering from major joint issues, which is apparently common in people with UC and is now on heavy medication for that issue.

Who's the medication review with?

Has anyone asked the 'friend' that supplies the benzos if they're supplying anything else (alcohol, laxatives, amphetamines, extra
Cyclizine?)

The Medication Review is on Tuesday.

@LaceyBetty I am so sorry to hear about your sister. Thanks for the info, I will make a note of Humira.

@HermioneMakepeace

The Medication Review is on Tuesday.

@LaceyBetty I am so sorry to hear about your sister. Thanks for the info, I will make a note of Humira.

Who is the medication review with? Her GP?

Because a GP probably won't prescribe meds for UC, it would have to be done by a specialist, ie. Gastro consultant.

@Greybeardy she’s in another county so only sends things through the post. I have also read through my friend’s text messages with this other ‘friend’ and it does seem to be just Valium. An odd thing, though: another mutual friend mentioned that ‘friend’ imports the Valium from Pakistan. Could they be fake so you think?

I am SO ANGRY about this, I honestly don’t know where to start.

@Cokearama yes, but we’re not sure which GP as from what I can gather they share all their patients now. Hopefully we’ll get someone helpful.

And certainly not without proper investigations and diagnosis first.

I mean she could have bowel cancer, and it would be remiss of them not to fully investigate.

Can I just say at this point, how much I appreciate all the replies and suggestions. Thank you all

[quote HermioneMakepeace]@Cokearama yes, but we’re not sure which GP as from what I can gather they share all their patients now. Hopefully we’ll get someone helpful.[/quote]
Then you need to ask for proper investigations and referral.

@Cokearama Will do. Thanks.

Sorry if I've missed where you answered this, but is your friend aware and happy for you to be posting details of her medical issues on Mumsnet? There is some very personal and identifying information being discussed here.

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.