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Crohn's Disease
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Posted 10/21/2011 10:22 AM (GMT 0)
I just moved to Leeds, Uk for school from the states. I'm on remicade every 6wks and have an ostomy. I've been here for 6 wks. and still don't have an appointment with a GI, can't get one for another 8 wks. The GP I saw said he would get me my remicade 5 wks ago, after calling 59 times I still don't have an appt., so I had to call a doc in London who I've worked with before. Got my remicade at wk 10, and spent 2000 out of pocket for train tickets, hotel rooms, and phone calls to my insurance company. I've asked both the GP and the GI in London to order me ostomy supplies. Neither have done so, I have enough supplies for 5 days. I think I'm getting an abscess and I'm draining from my bum like non other, it smells like someone died. I think I have the flu because I got my remicade when I had a sore throat. Now, my throat is swollen and it hurts to swallow.

My bum really hurts, and I'm afraid to see a doc because I've been in remission for about 2 years, no abscess or surgeries of any kind. I'm afraid if I get an abscess it will be like before where I get 20 because my body can't heal itself. I'm not exactly happy with the school or the city I'm living in, and all I want to do is go home and cuddle with my dog. I just don't really know what to do, the GP I have doesn't even really know what crowns is and if it is an abscess what are they going to do, make me wait 20wks before I can have surgery. Nothing is really going right health wise since I've gotten here, and I'm about to give up.

Advice is need.
Posted 10/21/2011 1:05 PM (GMT 0)
Are you covered by a us insurer or by the nhs? if nhs, change the title of your post so that folks from britain can give you the best advice. If you are insured by a us carrier - gosh, I don't know. maybe find a private doc?
Posted 10/21/2011 1:22 PM (GMT 0)
Sounds like it would be worth returning to the US at this rate just to get treatment. If you returned would you be able to see a GI straight away? Studies can always be deferred, but your health can't.

It sounds like you have been through a shocking time. I don't even know what to suggest to get an appointment with a GI faster, but an 8-week wait is unacceptable. Maybe if you went to A&E you would get a referral to one much faster? And hopefully get some tests done at the same time, which at least would be free after all the money you have shelled out thus far. If you can't get treatment any other way, or go back to the states, the hospital route is the only one I can think of :-/
Posted 10/21/2011 1:39 PM (GMT 0)
I am so sorry you're going through this. I hope you're able to get some help soon! Please keep us posted!
Posted 10/21/2011 1:47 PM (GMT 0)
I'm covered by both private US insurance as well as the NHS. I've tried going through both docs. I just went to a clinc and the doc, nhs, said I have an infection in the bum region. I could have told her that much. Though she didn't find an abscess, I think she was looking for a large pimple on my butt though, cause she didn't even really touch the area that feels like an abscess. I'm still convinced I have an abscess but in the meantime they put me on four days of an antibiotic.

This stresses me though, as I don't have a car and have to walk around 2 miles every day just to get to class. Just walking back from the medic today has made my bum go from soar to feeling like there is a twenty pound weight attached to it with an extra ten pounds where I feel the abscess is. Also the last time my bum was infected it took four months to heal. My parents said they would support me in any decision, but I kinda feel like I failed.
Posted 10/21/2011 1:56 PM (GMT 0)
Dreamer06 you really need to put your health first right now. I think its time to call it a day and go ahead and go home so that you can get the treatment you need. Studies as others have said, can wait, your health should be a priorty right now. Good luck!
Posted 10/21/2011 3:27 PM (GMT 0)
Hate to say it but welcome to the good old NHS. When I was in severe flare last autumn because I hadn't seen my GI for 2 years they tried to put me on a normal waiting list and wanted me to wait 12 weeks for an appointment. Luckily I phoned my GI secretary and she said that is unacceptable and got in to see him in 4 weeks and that was an urgent appointment! Your GP should have given you a letter to use the 'choose and book' system where you can choose which consultant you see and you phone a number and they give you the appointment there and then. Your only other option is to go to A & E and get them to look at the abscess, this may get you a referral quicker, no guarantee but may help. Unfortunately, whilst our health system is free, in that you don't pay per visit or treatment, is it so hooked on targets and paperpushing that it is badly in need of CPR. The government has decided that anyone with symptoms of suspected cancer is to be seen inside 4 weeks (I think that is time limit) but problem is GPs are so scared of missing something they refer people willy nilly and this causes huge problems so consultants end up seeing huge numbers of people who have maybe an upset stomach and this means people like us with IBD get pushed to back of queue.
Posted 10/22/2011 10:31 AM (GMT 0)
Stripey-I wish Gp's were scared of missing something that they refer people willy nilly.

I know of at least seven people(some unfortunately no longer on this world) that were not referred to a specialist within the time frame and who were fobbed off with it is this or that and when they were eventually referred it really was the end of the line for them(as in far too late to do anything)

Another I know who is battling now, got the referral and the diagnosis and it has taken 4 months to start treatment during which time the tumour has grown massively and spread!

I personally think that some GPs are far too slow in referring. The gastroenterologist son sees is great(so far)and has said that no-one should suffer with pain and that if they do he will see them the same day(what a guy) So saying we haven't put it to the test yet, yes he has had days of pain but nothing he has felt unable to cope with. he also has him in every 5/6 months to see how things are going.

I guess it is the old postcode lottery.

Posted 10/22/2011 2:10 PM (GMT 0)
That's true Vixen it is a postcode lottery. My local hospital where my GI is based only got one star on the government report and was not in least bit suprised, well was a bit as thought they wouldn't even get that!
Posted 10/23/2011 11:40 AM (GMT 0)
I've made the decision to go home. I think I've made the right decision, though there doesn't really seam to be a right answer. Staying here is not doing my health any good and I'm not enjoying the courses. And going home to live with my parents at 23 doesn't seem like the best option either. But I'm going to speak to my professors and pack my things...I'll keep you posted on what happens next.
Posted 10/24/2011 11:35 AM (GMT 0)
For what it's worth i think you made the right decision..i'm sorry you've had to go through so much but you really do need to put your health first.i don't see going home as failing in some way..rather i see it as taking control of the situation and and making a wise choice, wishing you the best.
Posted 10/24/2011 3:32 PM (GMT 0)
I agree, I think you made the right decision too. Get your disease under control better and I think it will help you later on with your studies. Good luck sweetness, and keep us posted on how you are doing. Big Hugs!
Posted 10/25/2011 11:47 AM (GMT 0)
(((((((((((((dreamer))))))))))))
You will be more able to concentrate on your studies once you feel better. At age 23 you have your whole life ahead of you, don't worry so much about having to taking a break from school.
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