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Hello I'm new

Hi guys...been recently 90% diagnosed as a Crohn's patient...had to see many docs and hanged many GP practices to find the right GP , been suffering for years and so bad now almost housebound. When I say I'm 90% diagnosed...I haven't seen a Gastroenterologyst yet only a GP or primary care docs for those of you who live i the us but my symptoms are o strongly suggestive of Crohn's she said she was pretty sure the test would comeback positive plus there's a history of IBD in my family. She's going to refer me to a gastroenterologyst after taking some blood tests and put me on a bunch of anti acid and NSAIDs. If they don't improve the debilitating symptoms I'm going on Steroids as all I do all say is sleep, eat tiny amounts, sit, vomit or have an alternation between constipation and diarrhoea. I also get high fevers and sorry...burps that taste like faeces. I have two autoimmune diseases already so that's another pointer plus a connective tissue disease plus asthma, OCD, GAD and complex PTSD with DVT. I'm also on Fluoxetine 60mg, Tranexamic Acid, antihistamines, anti spasmodics, vitamins plus high dosages of C and D and diazepam.

I'm in constant pain and feel constant nausea, I can sleep for 48 hours straight and if I try to 'keep going' I fanit or black out I'm, THAT tired. I've lost a bit of weight as I a only eat small amounts and chew very slowly until it's almost liquid otherwise it comes straight back up. I find baby food easier to digest. Cannot eat raw veg. Painkillers don't work on me AT ALL not even for headaches...think that night be to do with the inflamed bowels not absorbing them properly. Having horrible side effects from the diazepam which I've grown tolerant to so I can take 30mg and be just as alert as I was before I took them.

I've been gastrointestinally challenged since I was a baby Constipated mainly. It flared up more in my teens with abdominal cramps not associated with constipation as I was going fine in that department then. It then went away again by my early 20s then back in my early 30s where I was experiencing diarrhoea/constipation and nausea and gradually got worse and worse. I'm now 39 and it's left me without any sort of quality of life so if I don't improve in a week or two on these meds she's putting me straight on steroids. She's referred me to a Gastroenterologist but the waiting list is three months long and I explained I cant wait that long I'm depressed I can't do anything. It was only by seer fluke that I had a 'flare down' or 'good day (although no day is ever symptom fee) when I saw her otherwise I couldn't have gone. She, therefore, suggested I go privately and save up. I think it's a good idea as I am in higher rate of PIP so could afford to use that to pay for a private gasrto doc. Up until now I've been spending it in street or internet Valium as I got hooked on it via the NHS ( was on it for 23 years) and my old GP surgery who stopped it suddenly then I had fits and felt so awful it was hell on earth...I begged for them to wean me off but they refused so I sought them elsewhere...but now I have them on prescription and I've gone down from 120 to 58mgs.

I'm currently living near Newport South Wales UK, planning to move to Liverpool in the spring (if my meds out me in remission). I'm also dreading a colonoscopy as I have Ehlers Danlos Syndrome and bleed easily so any tiny bump or bruise or nick and I bleed for Wales. I have Sjogrens Syndrome (an autoimmune disease that effects the moisture in my bod)y and the EDS also effects my joints making them very painful. I'm small and underweight but big busted (26 G/GG cup) so get terrible backache. Imagine once I'm in steroids and out weight on I could go up to a J or K cup.

I live alone, am in counselling and want to start a new life as this one sucks. Hoping to make friend son here and share ideas and tips and thoughts and whatever, have a laugh, get reassurance and support and give back in return. I'm a Pagan but of Russian Orthodox decent, have heavy periods, love sci fi horror fantasy, thrillers and old TV shows and music. I cant watch or listen to anything past the 90s although there are some good thrillers from 200 onwards I could recommend if anyone else is into this. I'm an ex journalist (had to give up work due t ill health and i to quantum physics and history and learning about the human body. I also love ZOMBIES and my favourite TV show is In The Flesh although the bloody BBC have axed it so I'm part of an underground campaign to get it back on the screen. I also like reading self help nooks, books on time/space, music from the year dot to 90s (all genres except for rap and reggae) and like tennis. I used to play nut cant any more due to joint pain. Had a WHOPPER of a serve, my strong pint, having long arms due to marfanoid habatis which is technically a deformity meaning the arms and legs of an EDS patent are too long or their height.

I'm single (after much stress, trauma and heartache being engaged to someone I now refer to as Freddie Kruger) but have a guy waiting for me, love kids and hate Xmas. I love Halloween, cream cakes, Harry Potter and Lord Of The Rings (the books not the films) I am a proud Slytherin. I even have a Slytherin/Hogwarts uniform. I also love vintage grange Hill if anyone knows what that is. I like dark comedies and pre 2000 comedies.

I'm bisexual, loving, honest, blunt with a weird sense of humour. I also have alopecia and wear a wig when I go out. When I'm home I don't bother. My head is almost completely bald. Only modern TV series I really like is In The Flesh. But I do quite like Call The Midwife. I also love documentaries especially about history from prehistory to modern. I'm dyslexic and dysypraic. Amazing I managed journalism and came top in Egnlsigh at my cshool. I absolutely HATE where I live and desperate to move. Desperate to put on weight, get better, be with my man, be happy, be a healthy(ish) 39-40 year old.

Very open minded but also very down to earth and practical. Strong psychic and very spiritual. I follow the Arthurian gods and goddesses and will tolerate pagan bashing :voodoo: I also love brains and skulls and want one day to collect them not necaly real brains but animal skulls and fake brains and very interested in the digestive system. was going to become a doctor before I decided to become a journalist. It's funny as my OBGYN said she did the opposite. She's also into Harry Potter which is cool. And she wears green...my favourite colour...what more could you want forma OBGYN?!

Favourite group ever-The Beatles, second Bonn Jovi tied with Extreme. Other bands I like are The Bangles, Heart, Van Halen , Queen and Areosmith. Also love classical music, opera and musicals. Walk with a limp, look like a ill, thin version of Sinead O Connor and hate modern technology like mobile phones. Hate this bloody commuter tbh but it has it's uses. Don't watch TV on TV just catch ups, reruns (streaming ect) and DVDs. Love 50s-79s clothes, don't like modern fashion or current music or celeb gossip. Can sing soprano (light lyric coloratura) and love Mozart. That's enough for now I think. Gonna bore you to death rambling.
 

scottsma

Well-known member
Location
Tynemouth,
Welcome and WOW !!! If you can't find anyone who shares at least one of your interests/accomplishments it will be a surprise to me.I'm overwhelmed.
Back to your IBD.It might be a good idea to go private regarding a colonoscopy.The waiting time re; the NHS is a real pain.An early colonoscopy will mean a diagnosis,hence meds. that will hopefully give you some semblance of normality.There will be others on the forum along very soon with their input.I just wanted to say Hi,and wish you well.
 
Yeah sorry I can really talk lol. But yes you are right I think waiting 3-4 months when I'm this ill is ridiculous...and potentially dangerous as almost vomited fees once plus it's making my depression worse, I mean literally the flat looks like a bomb has dropped, I can't find he energy to get undressed and into my bed to sleep so I sleep in my clothes on the couch and I'm too tired to wash and bathe properly. I have already found a gastoenerologyst who comes with great reviews. I could also see him in a couple of days if I want to...it's just getting there...I have no transport...couldn't drive anyway too ill and ave to get the train. Might be a good idea if and when he does a colonoscopy to book into a b&B nearby coz I can't get home in public transport alone like all sedated.

turns out my anti spasmodics aren't working, I also had a bad reaction to them...couldn't breathe so decided to tell doc no more....the previous surgery tired me on another type of anti spas and hey didn't work either. Feeling sick again today and soooooo tired. Ate a small amount and tummy hurts and now distended.

But yeah some semblance of a life and normality...that's the goal.

Nice to meet you fellow UK citizen, see you around...
 
Welcome..and thanks for the intro...more than I've given.

So much to say on things you wrote but, frankly, if you are throwing up particularly in pain, you should be down to A&E and, hopefully, meeting your local friendly gastroperson. In the state you describe, you really need something more immediate than a 3 month appointment. Your GP cannot expedite this but you can by going to A&E.

You will not be a burden and the people there will make sure that you get the attention you need now. Much is made of slackers clogging up A&E - you are not one of them. The last time I went to A&E was purely to bump myself up my gastro's list and he's actually told me that I should have been in touch sooner.

There's no medals for bravery in the modern NHS.

Up to you obvs...but that is my advice and I have quite a bit of experience in these things.

Welcome anyways.
 

scottsma

Well-known member
Location
Tynemouth,
I agree with Grumpy.Get a taxi to A&E.If you can be bothered, write a list of your symptoms and how long you've had them.Doesn't have to be exact,it's just in case you forget anything.Your aim is to get this sorted A.S.A.P and also to lessen your anxiety.
It's really worth making the effort.Good Luck.
 
Hi again, just two more things to ponder...

If your GP truly believes that you have Crohn's, she shouldn't prescribe/recommend NSAIDs...generally regarded as a no no for us Crohnie's - I learnt this the hard way !

Second, on the colonoscopy; I'm not sure what test's you have and haven't had done and how the diagnosis is proceeding but given your other conditions it sounds like it would really be wise to find out the result of a fecal calprotection test first since it is so easy (if you can work out how to get poo into a small bottle !), non-invasive and the result will give a good indication of whether you have IBD and how bad it is.

Thirdly (yes, I know I said there were only two things), I personally would not be happy having a GP prescribe steroids for my Crohn's. If you have Crohn's and it is making you bad, you need a specialist to manage your treatment. (My GP once referred to himself as a specialist only in 'Piles and Pills'). The most resentment I have is against GPs who have tried to 'cure' me. You seem to have quite a complex medical history and you should be sure that steroids can be used in conjunction with your other medications. Since your GP doesn't seem to know that she shouldn't be recommending NSAIDs (if she is) if she suspects Crohn's, well...what else doesn't she know ?

Anyway hope this might be of some help.
 
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