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Welcome Rubynolegs

i have just found this site and live in UK. A year ago i started having accidents outside the home, my GP sent a referral to a unit that did not use sedation so i went to Germany where they did as i was losing weight and worried. I paid privately for colonoscopy, Upper GI and CT. The results showed a bad infection in the treminal ileum and Helicobacter and cysts in the right kidney. My weight was 74 kilo to start but is now 48 kilo. My UK consultant diagnosed Crohns, but said he would repeat ALL the tests again...AWAKE, This horrorfied me so i suggested a CT Colonoscopy and on 3 Aug he told me he would book it, but went away till 21 Sept. He has now made me an appointment for 9 Nov, but has not yet booked the tests so it looks like next year before it will be done. I have severe bouts of pain and during a GI (2 weeks ago in Germany) to find the Helicobacter was still there, he found stale food gone hard in my stomach which is the reason i have not eaten in 3 months, apart from youhurt and tea. UK however will not accept the pictures or reports and the only medication i am on is for the Helicobacter, and mucus from my trachea that has entered my lungs, 30mg predislone a day, reducing over a period of 6 weeks then off, plus other medication i take. one of the medications is Omeorazole which i should take 1 hour before a meal and this is making me ill. my problem is that if i had not had my apendics removed i would think i had an apendicitis and the pain is unbearable on the right side. i go hot and cold, feel feint, fast breathing and other symptoms. having read posts here there are medications for crohns but nothing has been given to me. My stomach muscles are not working correctly so the brain thinks i am full..so i cannot eat after taking my meds and it seems to be taking a very long time to try to help me. i also have a hole in my stomach that does not close. Should things have happened quicker than this or is it usual to wait and suffer? Apart from occational D my toilet habits are once a month or so and it is like laying an egg and very painful, as food is passing through at such a slow speed. I am in malabsorption and afraid of how much more weight i will be allowed to lose before something constructive is done. Is this delay usual because we have the National Health System here, and does anyone know a way to speed things up?? I am getting desparate as i dread my 19 year old son seeing me like this and taking the immage to Afghanistan with him, which could compromise his performance. I hope someone has some ideas, although i am aware that various countries have different wasy of dealing with this issue. Thank you Rubynolegs. (ps, i am just 60 years old, but a young one till this past year...)
 

Astra

Moderator
Hi Ruby
and welcome fellow Brit

I'm a bit shocked and appalled to be honest! For a start, you can have sedation during a scope with biopsies, and you have so many stomach issues going on, I can't believe they're ignoring you?
Your first port of call should be your GP, and if this doesn't work, I'd go to A&E! This is because I believe you may have a blockage, the pains you describe fit this description, lower right excruciating pain, nausea, constipation and fever. So if you start vomiting as well, go straight to A&E. Hopefully this will rush things thro!
If there is inflammation, the Pred at 30mg should have started to work. But bear in mind that you need to be on a high dose for a couple of months, and not to taper too fast. I was on 40mg for 3 months, then started tapering, it took nearly 6 months to heal me.
Hope you get something sorted, that's a lot of weight you've lost! Go to A&E and scream if you have to!
glad you found us, any questions, fire away
lotsa luv
Joan xxx
 

DustyKat

Super Moderator
Hi Ruby and :welcome:

Ouch, that is awful! Gotta go with Joan on this, yell the place down and don't take no for answer until they start to prescribe appropriate treatment. Good luck and please keep us posted!

All the best, :)
Dusty
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Hi Ruby, welcome!! Don't know about the your NHS, but I'd say Joan is an excellent choice for advice!! Good luck!!
 
Ok I'll say this once
GET ANOTHER OPINION
sorry but your dr seems to be punishing you for going somewhere other than where he told you
maybe he never got the kick backs he was meant to from the dr???

But seriously I'd be going to another gi an getting another answer
also don't be jus sittin here readingbour responses
do as Joan says get to the emergancy room asap an demand to be seen
hell play it up if you have to pretend you're about to die etc but jus make sure they see you straight away don't let em send u home
u deserve to be seen straight away more so than a bunch of o-d'ing druggies
one bowel movement a month?? Not good
an te fact your gi dismisses your pictures/results moron
take what you got from Germany go straight to hospital get sorted then file a malpractice suit against your current gi

goodluck
 

Crohn's 35

Inactive Account
Hi Ruby, glad you got your story on here. Everyones medical system is different, and Canada is no exception, getting doctors to take the time and help you when you need medications or a diagnosis. Our system is great if you dont get sick but our waiting times are really bad, some waiting a year for an appt. I hope you can get the help you need, there are many UK people here to help you. Dont worry about your son, my daughter is 22 and has lived with this disease with me all her life since she was 3, they learn to be compassionate and caring. Most of all young ones become resilient and good adults. Keeping to get the help you need, no one needs to be with medical care. Hope you keep us updated! Hang in there...hugs!
 
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