Sanji wrote:

" how are you going to manage the long walk in the terminal dragging a suitcase"?

Easy get Dave to pull it!

Seriously, glad your feeling better and hope you do manage to get away soon. LIke you say a change of scenery will do you a power of good

Sanji, I'm sure the change of scenery and better weather will do you a power of good but why not book assistance at the airport? In the circumstances it's perfectly legitimate to request help with both the luggage and the use of a wheelchair. Similarly, surely you can request a medical seat close to the door and/or the loos if that is going to make life easier for the pair of you and give Dave peace of mind?

Two friends both have children who have had Crohn's from a young age and whilst it is possibly easier to adjust if you have had to cope with it from a young age but they have never let it stop them from getting on with living life to the full and with your spirit I'm sure that you won't either.

SM

I agree with SMa, ask for assistance Shirley Especially on the return with that long snaking queue for airport security

Xxx

Seriously! Get airport assistance! It will make sure that you are less stressed when you do get on holiday.
Take care and use all the help you can get!
xx

Of course you must ask for assistance at the airport Sanji, including a wheelchair (which certainly speeds you through security!) I've had it a couple of times, once when I'd sliced my foot open in Tunisia and again a couple of years ago when I'd broken my elbow so couldn't cope with luggage. Another friend of mine travels from Denmark to Stansted with Ryanair regularly and says the assistance they give her is superb. There is no charge for the service and you don't even have to provide proof that you actually need it, though you certainly wouldn't have any trouble providing that.

Get the trip booked as soon as possible, as even the anticipation of it will help you feel better, and actually being back in a favourite destination, staying in a well known and loved hotel, will do you the world of good, not to mention the lovely scenery and better weather.

Hi Folks.
I thought I'd give an update.
March is the month for Crohn's awareness, and for me personally, any reference to Crohn's has moved on from the Sanji title of this thread. It's no longer about me anymore, although obviously my family care, and I care about me and what happens to me , however there is now a bigger picture to look at - and if it means bringing attention to Crohn's, by a Crohn's sufferer (me) , then this is the reason for continuing with this thread

I probably haven't explained that very well - what I'm trying to say is, that once you have a particular illness, and you want to know everything possible about it, then you cannot help being dragged into the subject on a worldwide stage - reading articles about genetics, pathways and autoimmune diseases - hoping for news of a cure or new medicines etc. So, you stop being the centre of your own universe and you join all the other sufferers, as one of millions with Crohn's.

For me, it's been a roller coaster of a ride (so far).
I didn't get away to Spain when I wanted to go, I had another hospital appointment and I was then left waiting for another appointment to see the Gastro/Enterology team.
I cannot fault the NHS for the treatment I received whilst as a patient on the ward, but the 'after care' has been something that I'm not a happy bunny about.

I saw the Surgeon/Consultant on the 3rd February and he was so full of himself, although he did admit in front of myself & Dave, that he didn't think it was Crohn's until he got to the point of having my small bowel in between his hands, then he laughed and said " what do we experts know"?

So, he'd done his bit and the system now works where he washes his hands of me (unless I'm referred back to him) and I'm passed onto the next team. Years ago, the Consultant, having listened to how the patient has been since the operation, he would have decided there and then which direction to head from surgery/diagnosis, and none of this passing onto another 'team'.
The appointment for the gastro/enterology team finally came through for the 31st March @ 9 am.

That means I will have had nearly 2 months since seeing the Consultant without any follow-up support or medication and 4 months since the operation. Nobody told me whether or not I had to continue with the medicines I was taking in hospital, although the medicines were not specific for the treatment of Crohn's - they were Tramadol (pain), an anti-sickness tablet, and a tablet to cut down the amount of acid made in your stomach - The point I'm making here, is that nobody has bothered to ask about them or what I'm actually taking , and for all the medics know, I could be taking crack cocaine.

I've tried to reason with the delay for the next appointment and the possibility that the medics want to give a period of time to see if I actually need to be put on long-term medication with all the benefits, and also the quite disturbing side effects. However, I think it's been because of the sheer volume of referrals to the department, so, what was I supposed to do if I had a flare-up? ...... Suffer in silence? Head back to A & E.?

Now I've got that little rant out of the way, I'll continue.....(after a cuppa tea)

Sanji x

Having been told I had Crohn's and whilst it was totally unexpected, especially considering my age, and lack of symptoms until it required me to be admitted as an emergency, it was a bloody huge relief, when you think what the other alternative could have been.

It wasn't the diagnosis of having Crohn's that knocked me back years, it was the bowel resection and anybody who has had abdominal surgery will tell you, that following surgery, you are snookered for at least 6 weeks and unable to do even mundane simple tasks which you take for granted, so, you have a double whammy of conditions to deal with - surgery/wounds and symptoms from the conditions that caused the surgery in the first place.

I've more or less stuck to the same food, day in day out, plain bland food that seemed to be tolerated by my guts, with things like mash potatoes or rice, easily swallowed and not too taxing on the intestines to work at - I didn't need a food diary because there hasn't been anything that changed apart from the choice of meat - then recently crazy, that the same foods are now sometimes giving me heartburn and mild tummy pains.

So, I was beginning to pick up nice and slow, and I was getting there. I had the joy of going out shopping to buy new clothes - I ain't been in a size 12 dress or 12 leggings since I was about 14 years old. I got pottering about the house doing most of my own housework, although I still had to be careful not to get carried away and do too much in one day.

After I got the appointment through for the 31st March, I thought I am going on holiday, so after days of searching I booked a late deal to my favourite resort/hotel on the Costa del Sol, departing next Tuesday, just for a week.
I was feeling fine when I booked it about 10 days ago, then last week we had visitors to the house and the gentleman was coughing - I never noticed it, but my private male nurse (Dave), he did. !

A couple of days later I started with a chest infection - I was diagnosed with having COPD last year with all the rigmarole of 3 inhalers several times a day - and starting with a tight chest, this was not good news.
I won't bore you all with the medical side, but both COPD and Crohn's share similar pathways, both autoimmune diseases, which mean for someone like myself suffering with both complaints - it means if one kicks off, it will invariably start the other one off too - jeeez, it didn't half kick/trigger the Crohn's off.

I thought I was heading back to hospital last week, no kidding, not being a drama queen, and I thought the holiday was lost- It came on soooooooo quickly (tight chest, unable to breathe and knee bending stomach pains) - however, after another course of antibiotics and I'm back on steroids, things have improved, I've got another visit to the doctors tomorrow morning because although my chest has improved, the antibiotics haven't 'cleared' the infection, and before I go away it will be a good idea to get a supply of 'emergency' medicines, just in case,...... the good news is, that the steroids are slowly soothing the pains away from within my guts.

Let's hope this holiday will be just what the doctor ordered, or should have ordered.

Sanji x

Bloody aida Sanji!

;o) will try giving you quick bell tomorrow! xxxx

I know you been through the mill Sanji but it's lovely to hear you back to your old self. Fingers crossed that's the last flare up for a long, long, while.

I'm sure you and Dave will have a nice time. Make the most of it but don't over do it either

Xxx

Enjoy your hoiiday and try to get some rest - hopefully you will get plenty of sunshine!

Best wishes to both you and Dave.

Hi Sanji, gosh youve been through the mill havent you? Hope you continue to do well and hope you get your holiday

Hope the holiday will do you both good. You have really been through it.

Linda

You must have been so upset that coming on all of a sudden. Thank goodness it sounds like you are still going to be able to go, you certainly deserve a holiday with all that you have been through. Fingers crossed for the doctors visit tomorrow.

Doe

You must have been so upset that coming on all of a sudden

I think you have hit the nail on the head there Doe.
I'd taken 20 steps forward since my post in January - I was getting back to my 'old self' with just a few limitations on what I could do before all this.

It seems that's the name of the game with Crohn's, you can go days, weeks, months and years without any flare-ups, and then it can, without any pre-warning, reoccur and 'cripple' you at short notice. It's just summat that you've got to live with.

Anyway, my poor doctor got it 'in the neck' this morning, I don't think I've ever spent so long in the consulting room, in all the 30 odd years he's been my GP.
He gave me a prescription for antibiotics and more steroids to take on holiday - he was fine with that, although he usually prescribes Doxycycline because I can't take Penicillin, but you shouldn't take Doxycycline if you're going to be exposed to the sun or sun beds. So, he prescribed a course of Erythromycin and when I come back from holiday, having COPD he suggested that I should have an emergency supply of medicines in the house for the COPD..

Then I let rip at him over the nonexistent 'after care', so he said there was no point trying to get an early appointment at this stage now, because I'm away next week, and the 31st March will soon be here.
He was another one who seemed quite 'gob smacked' that I had Crohn's - well he would be, seeing as I've never been to the surgery over problems with my guts, until the couple of weeks before I was admitted into hospital.

Then he went off giving me a lecture about there being no reason or rhyme why some people get it and others don't - in other words, even the medics are guessing to a certain degree.
It was quite comical by the end of the consultation, because I'd bottled all this up and poured it all out into his ear- then he enquired if I had a valid EHIC card and he said he was 'so happy that I looked so well" - On the way back to the car I said to Dave, " what planet is he on, because I don't go to the doctors unless I'm bloody desperate"?

Dave reminded me that the last twice he's seen me, he's had to sent for an ambulance....ooops, keep yer gob shut Sanji.
So, there we go folks, I'm really hoping that I get some sound advice from the 'experts' on the 31st, and a decision on whether or not I go onto the very limited specialised medicines.

You'll probably get sick of hearing me moan, if you haven't already, but like most people I'd heard of Crohn's and never gave it much thought...until you start reading about all the complications, the debilitating effects it has on the sufferers and the increase in the risk of bowel cancer.

Anyway, it's made a bit of a conversation in here.

Sanji x

I can just imagine you in the surgery letting off steam

Nice to hear you getting a bit of value for money from the NHS there Sanji. Bet the bloke didn't know what had hit him I think you're right about these things that flare up they hit you from left field all of a sudden, it's life changing. Still glad you are well enough to get away though, that has got to be a good sign

Doe

Enjoy your holiday Sanji!

Hope the holiday has done you a power of good.

As for me, well the wonderful NHS (!) decided that as a second ultrasound was negative (a good thing), I didn't need to see the Consultant (whom I hadn't seen even the first time, everything being organised by the Nurse Practitioner) and discharged me back to the care of my GP without a diagnosis.

This time, however, I saw a different doctor (the original GP having moved on) and after a long chat it was decided that I'm suffering from Irritable Bowel Syndrome. At least I now have a name to my pains and whilst it is nothing compared to what you've gone through there are times when I'm in so much pain I don't know what to do with myself.

I've got tablets, I keep a food diary to see if I can find what 'kicks' it off, but so far everything has drawn a blank. Stress doesn't help, but as I tell hubby, I'm stressed because I don't know what's causing the pain
Hopefully it will eventually settle down, I hope so because sometimes during a bad bout the only relief I get is to break wind, which is somewhat embarassing!!!

Have booked a holiday for the end of the year, going to New York for Christmas, sailing on the QM2. Not sure it is the done thing to walk round such a 'posh' liner breaking wind - although Stephan says it might be useful when we fly home as we might get back quicker

Babs135

Irritable Bowel Syndrome.

if you don't get the right tablets from the doctor ask him/her to send you for hypnosis...it never cure me but amazingly helped a lot...what you must do is chill out, don't worry about today if it can be done tomorrow, or if something's happened, its happened ! so why worry about it...just get on.
being relaxed will help.