I keep trying..but its impossible trying to eat!

[Danceruk]

Arg..sure someone must have some more ideas for me

Been to my GP twice - he is now on a cruise

Dropped into his partner last Monday - given me spasmonal and sent for bloodwork

Again said I am having trouble eating - neverind he says, cant do anything till you have the bloods done

(No gastro referral due to me not having a flare for 3 years- will not refer at this stage- suggested after 3 flares they would consider a referral)

Been having ice lollies

Well even that is causing some issues now- wednesday night had 1 lolly.. was up for hours, passing blood, D etc etc.. couldnt go into work. So not repeating that again

Been drinking water, squash (cordial) and mint tea .. slight pain but much less than 3 weeks ago

Tried a meal replacement drink, wthin 20 minutes was gurgling and had to go out of the office

Frustrating. for the time being stick to tea..

Just for reference taking

8 cocodomal
45mg pred
2 predfoam a day
3 spasmonal a day

Any other suggestions, I will try anything.. got tommorow to stay close to the loo!

Thanks again guys

 

[Pincushion]

:hug: sorry i missed this, i hope you are ok

I am afraid I don't have any helpful advice to offer as it sounds like you are doing all you can but just wanted to say we are here to listen and support you :hug:

Keep talking to us x

I hope someone else has something more helpful to suggest.

Take very gentle care,
Christina :hug:

 

[Claire617]

Seriously when I was in this situation I left it roughly 2 months and I was in hospital, I would get myself admitted to hospital either through the gp or something if I was you. I've found gp's listen more if you've got anyone that might be able to speak on your behalf, I'm not too sure how old you are but even though I'm 20 in my bad flare last year my dad and nan would speak to the doctors and they didn't take any s**t from the docs.

I know it's frustrating and sucks so much when you're in hospital but this way you grab the consultants attention and they might actually think 'hey this person might be sick!' and start getting you better!

 

[Astra]

Hiya Dancer

here's an idea
lay off the co-codamol!!!!!
this is what you're suffering from
here's a link, read the side effects

!http://www.patient.co.uk/medicine/Co-codamol.htm

xxx

 

[Danceruk]

Thanks for the linky

I am in agony with the painkillers so just not bothering with those now! waste of time!

Went back to GP today - said not to worry about not eating.. err.. okay!

Just having a small jelly pot each day, water, tea etc .. basically told me not to worry today. Given me a different anti spasmodic

given up trying now!!

 

[Dallies]

Thanks for the linky

I am in agony with the painkillers so just not bothering with those now! waste of time!

Went back to GP today - said not to worry about not eating.. err.. okay!

Dancer, did you tell you're GP that you haven't eaten in weeks, and can you please have a prescription for an entirely complete liqiud meal to make sure that you are getting all the calories and nutrients that you need. (Alicalm or Ensure Plus) and that you are in agony!!!!!!!!!! I am really worried about you. You must be losing weight by the day. See a different doctor. I hope you get the help you need asap. xxxxx

 

[Guest]

i was going to say something about the cocodamol, but Astra beat me to it. codeine is so well known for causing bowel issues - i'm surprised that one of your doctors hasn't said something to you before now!

i think you have a right to a referral to a specialist, when you want one! i think if i were getting the no-help you are from your gp, i would go about it the other way.. telephone the gastro department of your local hospital, tell them what is happening to you and how long it's been going on, and that your doctor won't refer you. maybe they can suggest something.

 

[Astra]

Hiya Dancer

how are you today?
really think it's time you went to A&E, if only to get a bag of fluids! they'll give you IV morpheine too and hydrocortisone.
I know you're desparately worried about your job, and to be blunt, there won't be a job, if you're six feet under!
You really need to think about your health first, everyone is worried about you!
xxxx

 

[Danceruk]

I think I am getting misunderstood lol

If I eat, I am in pain straight away + then have to go straight to the loo, several bm, blood etc. Tried 1 Callipo last week -during the night this resulted in 10 bm and blood etc etc. Was too poorly to go into work in the morning

I have now seen 4 doctors, I have been honest, said to them I have not eaten bar Jelly, water, the odd boiled sweet. They just say nevermind. I asked for Modulen or Ensure yesterday - he said theres no need for it at this point. I let them weigh me every week also.

I rang into work to speak to managers manager, ended up in tears - so hashed off with being fobbed off. But honestly, if they arent concearned and think its fine, then there we go. Work know I have done everything I can at this point.

I cant waste anymore time or money on medicine that dont work - when they arent willing to even look up Ensure or help with nutrition - that part didnt concern him.

Thanks for all the concern guys, just give up now, I cant waste anymore energy getting upset over it!

Thanks again guys

xx

 

[Minxy]

Danceruk -- just one query before you go -- have you had a faecal sample tested recently at the lab? Just might be possible you have some kind of bacterial infection in your gut causing the diarrhoea. It happened to me, and didn't improve until I took a course of antibiotics followed on by probiotics.

Maybe you've already ruled this out.

 

[Guest]

give up on a fellow sufferer?? i don't think so.

Dancer - even if it means getting cross, nagging the doctors, or enlisting a family member or friend to do this for you - you can't give up!

i take it you're in the UK? have a look at this link - it gives you straightforward advice on how to complain about the treatment from a gp or consultant. http://www.nhs.uk/chq/pages/1083.aspx?categoryid=68&subcategoryid=158

you deserve to be helped - don't give up fighting for that right hun, even though you may not feel like. please!

 

[Danceruk]

Nope noo stool samples, just bloods done. Still waiting on those as they appear to have lost some of them.

I think I have done enough nagging, I probably saw the most symapthetic doctor in there yesterday- he was nice and empathetic, but ultimately batted it back to my GP to sort. I really dont think he is going to have a ureka moment on friday

I just dunno what else to do, my fiance is being as understand as possible but everyone is sick of it now- my parents, my sister, even I am sick of myself and listening to my complaining.

Just gonna have to get on best I can - if 4 GPs think its fine to live on jelly, so be it. Havent got anymore energy. Crying isnt going to fix it!

Thanks so much dingbat, very sweet of you

 

[Entchen]

Wanted to send you a *hug.*

 

[Minxy]

Dancer -- I don't want to sound like a nag, but just wanted to say I was in a similar position to you - sudden onset of severe diarrhoea, passing blood, unable to eat anything apart from jelly and ice lollies for 2 weeks. Constant diarrhoea, passing blood for over 2 weeks. It turned out to be food poisoning, campylobacter to be precise, which is caused by cooked meat becoming contaminated by raw meat. I had eaten at a buffet in a Chinese restaurant
4 days before I became ill, and until Environmental Health educated me on the matter I had not realised there is an incubation period with campylobacter up to 10 days before the illness shows.

When I first got ill I was convinced it was a flare of the Crohn's, even though I could see no reason why it should suddenly flare so badly (I had not gone off my diet or had any stress etc), but thank goodness when I discussed it with a friend who is a nurse she said it sounded to her like food poisoning and persuaded me to get a stool sample tested. This showed the presence of campylobacter.

I am sure if I had just gone to my GP and said I was ill with diarrhoea it would have been wrongly attributed to my Crohn's, and nothing would have been done for me. The GP would not have worried I wasn't eating, because my GP and my gastroenterologist both think 'fasting' is a good way of managing Crohn's. Even when there is no diarrhoea.

So I sidestepped the GP and got a stool sample tested (basically I phoned the nurse at the surgery and got her to fill out the form for the lab)

The other thing is --- one of the best things when you have diarrhoea is to
drink chicken broth. You make it by boiling up a chicken carcass or chicken bones in a big saucepan of water for about 2 hours, and then flavouring the broth with a little salt, and straining the liquid and drinking the broth several times a day. It is very good for the immune system, & has some nourishment in it, more than jelly and lollies. It may not stop the diarrhoea altogether but should be soothing on the gut and may reduce the bleeding.

I know it is difficult to stand up to GPs and doctors -- I have had to do it for years, in order to get my illness under control, but it really is worth it.

Thinking of you, hoping you soon feel better.

 

[Danceruk]

Thanks for your response Minx

I cant imagine where I could of got food poisoning, I only prepare my own food and dont eat any meat.

I'm vegetarian so chicken broth not an option lol

Am going to ring doctors again today to ask for meal replacement, they can only say No!

 

[Minxy]

Dancer -- It tends to be contaminated meat or fish that causes food poisoning. So as you are a vegetarian, prepare all your own food and don't eat meals out, then I should think it's highly unlikely you have food poisoning.

I am envious you can cope on a veggie diet, as I was a vegetarian myself for 20 yrs but eventually had to give up and eat meat again, after becoming ill with Crohn's. I just kept losing more and more weight on a veggie diet, it was frightening....

Sorry I was not able to help. I do hope you get the help you need, soon.

 

[meardonna]

doctors fobbed me off when I had my first attack as I was pregnant and was put down to pregnancy problems. I had and have exactly the same as you when I eat during a flare-up. after nearly 2 months of doctors fobbing me off my husband made me go to a&e, luckily I did as I needed transfusion of 5 pints of blood and was on a drip for neartly 2 weeks!!!!! GP's are doctors that didn't do very well at med school or didn't want to specialise they only used to the normal everyday stuff, when something complicated comes along some are to worried about looking like they don't know anything and fob you off. please learn from my mistake i was lucky someone ,made me go to A&E!!!!!!