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Crohn's Disease Forum » Your Story » From Sicily to UK... with a dear friend to keep me company!


04-24-2014, 08:08 PM   #1
babyjenks
 
Join Date: Apr 2014
Location: London, United Kingdom
From Sicily to UK... with a dear friend to keep me company!

Hi everyone! ^^
My name is Chiara, I'm 20, and I was born and raised in the south of Italy, in that big island called Sicily. For study and love reasons, I decided to move and go living in London, in which I am since... more or less 15 days.

When I was 18 I was diagnosed with Crohn's disease after two horrible months of pain, and less than two month after my diagnosis, I had my first surgery due to an ileocecal perforation and consequent peritonits. After that, I had an ileostomy for a while and then I got recanalized.

In my worst times, I weighted just 38 kg and I was so sick I couldn't do anything at all, but now my life is pretty good and I can't complain about it. Of course there are bad days, discomfort, sadness, but I have a lot to cheer about!

About meds, I took 6-mercaptopurine for a while, then mesalazine, now I am going to take the Humira for the first time. Actually I am followed by a doctor in Italy, so I have to go there to start the cure and then go back to London.
Honestly I am confused about all this stuff. I actually don't work in the UK, but I'm searching for a job. Will I find problems in getting Humira here? How can I be treated by one trusted doctor here?

I will ask my doctors in Italy to help me, but THEY DON'T SPEAK ENGLISH. That's so bad I can't even say!

I have a lot of question about Crohn's disease treatments in the UK, about this sanitary sistem and everything, and that's why I searched for this forum. Of course I want also to talk with new people with the same problems as me, to help if I can and... to improve my english! I have never talk in english about my healt problems, so maybe this will help me to be prepared to talk with doctors and others... Please, feel free to correct my english mistakes! I beg you

So... Sorry for the wall of text and thank you in advance for your welcome

Chiara
04-25-2014, 03:01 AM   #2
Claudia777
 
Join Date: Apr 2014
Location: United Kingdom
As someone who moved to the UK myself I would suggest you sign up with a GP and get referred asap. In my experience it takes quite a long time to get things going here as the hospitals are very full. (No offence)

I have found the doctors in the hospital very nice, comforting and they really care about you.

If your crohns does go bad you surely don't want to have to fly back to your doctor in Italy.

Do try to get them write a letter with in there your treatment plan. Even if it's not in English, I am sure you can translate. My doctor in the Netherlands has forgotten it so many times, I have chased him up with emails and phone calls but I have just given up. It's 2 years later and I still don't have it. It does slow things down a bit because doctors here have no idea what you have been on etc.

If you need multiple prescriptions a month it is worth looking into a NHS prepayment prescription card ( http://www.nhsbsa.nhs.uk/1127.aspx).

I hope you settle in nicely and I am very happy to hear that your crohns is calm atm

04-25-2014, 04:29 AM   #3
valleysangel92
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Join Date: Dec 2012
Location: United Kingdom

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Hello! Welcome to the forum! And to the UK

As said above, it's a good idea to get registered with a local GP as soon as possible. Www.nhs.uk should have information on the health services available in your area.

The GP can then send a referral over to the hospital for you to start seeing a consul,tant. They may want to review your treatment plan, and maybe repeat some tests so that they have a baseline. They probably want to hear from your Doctors in Italy, they can get translators if needed.

Humira is prescribed in the UK but the guidelines for prescribing it are different so it may take a little time to get that set up for you, or your consultant may decide they want to try something else first. If they do then make sure you ask them why, and ask how long they want to try the substitute for before allowing you to try humira.

Another biologic used here is infliximab (remicade) , this is a little more common and is an infusion. This does mean you have to have it done at a hospital on an out patient basis, but they are generally every 6-8 week's and only take a few hours. It may be that your consultant suggests this instead of humira.


Your English is generally pretty good, it's not perfect but it's mostly just little grammar mistakes , I can understand you well enough, so don't worry about that. If you are having problems speaking in English during your appointments, your doctor can call a translation line and get everything translated for you.
__________________


Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
04-26-2014, 05:52 PM   #4
babyjenks
 
Join Date: Apr 2014
Location: London, United Kingdom
Thank you both for your answers! ^^

Tomorrow I'm going to fly to Italy and on the 29th I will start my Humira treatment in Italy. The italian doctors told me that for the first time I can take with me - even on the plane - enough medications to last about one month. In this time I will finally obtain my documents here, so I can give to NHS my proof of address and then register and see someone, I hope.

I'm ready to do every kind of test they want me to, but I talked to my italian doctor this morning and he told me that he will write a note in the letter he his preparing about my treatment plan: he had choosen Humira for me not only because I am intolerant to azatiopirine and 6-mercaptopurine was toxic for my liver, but also because Remicade is suited for people without stenosis (or without the tendency to develop them) because it make the inflammated tissue cicatrize, deleting the possibility to demish and so to heal, making them only surgically treatable. I don't know if that's true, but I trust my doctor. Of course I have to listen also what my english doctor will say, but I am quite glad that the italian one wants to put this note in the letter.

I don't know if I made the whole thing clear with my funny english, but I hope I did
Thank you, I'll let you know about it.
04-27-2014, 09:25 AM   #5
valleysangel92
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In that case, I don't think you will have much of a problem in getting humira here, since undertreated crohns is not an option.

I think I have also heard that remicade is more suited to those without stenosis (strictures), so that might well be the case. If that is correct then I see no reason for you to not be allowed humira.

Things do take time here, so a months worth of medication may not be long enough, I would discuss that with your doctor in Italy.
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