Update....
Not really much to say about the Crohn's, I seem to have been in remission since my holiday although the fatigue is still here, but the pain has eased off a lot. ( well, at the moment)...I hope I don't regret typing that tomorrow.

I went to see the surgeon on the 4th August in the out-patients clinic and I asked what had happened regarding arranging another colonoscopy under a GA, that they were supposed to be arranging whilst I was away....
He said, " ah, that's my fault, I've been having a ding-dong with the medical team, they want to do another colonoscopy and I said no, because first of all it wouldn't reach the site of the inflamed area, and secondly, because you've had enough tests/examinations and I can see what's going on inside from those tests/procedures".

Oh well, he is the boss, so his word is final .....I thought, thanks for letting me know and if I hadn't come here today and asked, I'd still be waiting for the appointment date.

He said the area near the operation site is tight because of Crohn's, but at this stage it's still functioning, so he's in no hurry to operate again, and therefore he has referred me back to the medical team to put me on immune suppressant drugs.

If I don't receive a letter by Monday morning with an appointment for the medical team, it will be exactly a month since I saw him.....in fact, if they carry on bouncing me backwards and forwards between the teams for another couple of months, it will be a year since diagnosis and basically apart from discovering that I have a small sliding hiatus hernia, and taking tablets to cut down the stomach acid, I've achieved sod all.

I've now got to the stage where I'm having second thoughts on whether I want to take these strong immune suppressant drugs, it's the only option that's available to help prevent a flare-up, and it's worrying because they don't half have some horrendous side effects for some people.
I'm having these doubts because my hair has stopped shedding , the pain has eased off in intensity, and my immune system is already knackered......I'm already susceptible to pick up anything (germ wise), so, what will I be like with these drugs?

My holiday in July to Spain was eventful to say the least - I went armed with a multitude of medicines for the Crohn's, which actually behaved itself, but because my immune system is knackered, I picked up a bacterial infection with cellulitis on the left side of my face/neck, that was tracking towards my eye and it was so swollen that I had no neck and it made me look like the elephant woman...... I spent 5 days in a private hospital in Malaga city having IV antibiotics.

Don't rely on your ehic card.....what you might receive in one province in Spain, it might not be the same in another......I went to the state hospital in Malaga and they were quick to photocopy my passport and card, then after waiting some time, I saw a doctor who told me I needed urgent treatment with IV antibiotics as an in - patient , but sorry they were full up and they couldn't help me........then the next question he uttered was, have you got private medical insurance?......well, obviously I do have insurance, but there was a reason why I went to the state hospital first, and that's another tale for another day and another thread!.

I've got one more holiday left (next week, back to Malaga) that was booked before all this Crohn's malarkey, and I'm hoping that I get a proper holiday this time. If anything should happen, I won't bother with the ehic card or my insurance, I'll just get the first flight home to anywhere in the UK.... that shouldn't be a problem from Malaga with plenty of flights leaving every day.

My days of booking holidays in advance is over - I've got a flight booked next June to Malaga for my son's wedding in Sevilla, and when I return from my holiday in September, next June is where my focus to keep well will be directed.....with or without a concoction of drugs.

Sanji x

Thanks for the update Sanji!
I'm glad that your pain has eased off at least!
These doctors are hard work!
don't let them or the system grind you down.

Yes, many thanks for the update. I'm glad to hear that things have calmed down & like yourself hope that they stay that way, especially for your holiday.

Have a lovely, relaxing, pain free time in Malaga & keep us updated whilst your away

Well, as sure as eggs are eggs, I got a letter this morning, posted the 28th August.
Appointment for the medical team on the 12th September at 5 pm.
I think that makes it exactly a month waiting for the letter and about 6 weeks waiting just to be referred back to where I already am a patient, and just from one team to another team within the same building.

No chance! - I (hopefully) will be in Spain and even if I wasn't, they can sod off if they think Dave is taking me to the hospital at that time of day - it's the worse possible time for the traffic and finding a parking spot, that you could ever imagine.

If I've had to wait nearly 6 weeks from my last out- patient appointment, and all the messing about they've done with me - they can let someone who lives local and nearer the hospital have the appointment, it ain't gonna be me going at that time of day, whether they like it or not.

I know it's the NHS and I'm not being awkward, but to be told on the 4th August, that I really need to be on immune suppressant drugs and it's the only thing left now to try and prevent further surgery - and it takes them nearly 6 weeks? Not exactly that urgent for them, then is it?

Luckily for them, I seem to have been in remission for about a month and I could argue that when I was admitted into hospital in the middle of June, why didn't they prescribe them then?

Maybe they might understand why I've started doubting whether I want their (toxic) concoction of drugs now.?

Will ring up tomorrow morning and see what they offer.

Sanji x

It gets better and better..NOT!
I phoned the hospital first thing this morning and asked for the appointment to be cancelled because I'm away on holiday.
I very politely asked if the next appointment could be earlier than 5 pm, preferably a morning appointment, because I live on the boundary for the catchment to the hospital....in fact if I lived less than half a mile further down the road, I wouldn't even be under this hospital.

Getting to the hospital has been a nightmare at times, often having to leave the house hours before my appointment and killing time in Costa Coffee - I've attended whenever they've requested, but a 5 pm out-patient appointment, (maybe out by 6 pm if the clinic is running late), is a time to avoid, based on a previous experience.

She said, "No, the clinic runs from noon". ( that's strange because my last appointment was at 9 am to see the same medical consultant in the same clinic....I was there at 8-40 am and he turned up late at 9 -20 am.)
I said, "ok then, please can the next appointment be nearer noon or 1pm, 2pm or 3 pm would be fine....it means I will get there and back before the traffic build up".

She said, "I can't offer you another appointment because the system only goes as far as October".
I asked, why is that ?, to which she started saying something about the doctor..(which I didn't quite catch)
So, I said, you mean he's a locum?....and she said yes.
I said, "ok let me get this straight, you're saying you can't offer me another appointment"?
She said no !
I ended the conversation....no point having a 'go' at her, she's just the booking clerk - (no disrespect to booking clerks intended here)

Ok, let's look at this .....
The consultant is a locum ( I knew that btw months ago) and I'm assuming he has a short term contract that expires in October.
The system won't accept any appointments, because they don't know which doctor will be the consultant after the present locum's contract has expired...it could be the same consultant on a renewed contract, or it could be a different consultant employed on a permanent contract.

I'm going to be away on the 12th September, so that date had to be cancelled ( remember I would have waited 6 weeks for that appointment) - and regardless of me politely requesting a more convenient time for the next appointment - the person on the phone could offer me NOTHING ....not even another appointment, either before I go away or after I come back, not even an appointment at 5pm - if that was all that what was available.

A few weeks ago, I was going to just let this thread fall off the page, but what has kept me going, is not to moan about my condition or to seek sympathy. I wanted to highlight the struggle, the inadequacies of the system and the sheer 'run around' that I've had to endure whilst trying to deal with Crohn's disease....which has thrown up many challenges (both physically and mentally) and making several adjustments to my lifestyle.
Posting in here has also helped me release the frustration, which at times has made me rant like a demented woman or just give up and sit down in tears.

I'm just one person trying to get the best treatment to deal with this - I want to speak to someone in depth before I go onto these autoimmune suppressant drugs - when you're considering this type of drug, I don't want to be passed along the conveyer belt and given the standard response, or the standard 'one medicine fits all' response, just because it's the cheapest option for them.
This is one of the drugs that has been mentioned to be prescribed.....
http://www.patient.co.uk/medicine/azathioprine-imuran

I've got Dave downstairs ranting away for the last 5 hours, telling me to write to my surgeon, write to the chief executive of the Trust and write to Jeremy Hunt.
Me....I've been known to go off into a strop and cut my nose off to spite my face, and at the moment I'm so bluddy weary of the lot of them - that I can't be bothered with any of it anymore....maybe tomorrow I'll come out in a fighting mood.

I just hope that there are others out there with Crohn's, who have been looked after, far better than myself by the hospital dealing with them.

Phew ! that has helped release the pressure valve...I'm off for a cuppa tea now.

Sanji x

sending a big Sanji.

I have a lot of patients on Azathioprine…. most of them now have anaemia, need to have the regular flu jab, shingle jab and pneumo jab(s).
They are always put first in line for any other (swine flu -for instance- jab) a lot have enlarged livers and deranged liver functions - I would think very carefully about going on such a potent drug - ok there may eventually be no choice but if you are well at the moment I would wait for the next flare up (and there may never be one) before even considering it.

Awwwwww Sanji big big hug to you (& Dave bless him, it must be driving him crackers with worry also).

I'm glad you are keeping this thread up to date as it gives you a record to refer to if ever needed

Sod's law they sent the appointment out for while your away. I had a feeling though that you told them you'd be away in September so not to make any appointments that clashed with your dates?

Chin up, we are all here for you

Thanks Rennie, Glynis & Denny.

I had a feeling though that you told them you'd be away in September so not to make any appointments that clashed with your dates?

Correct Glynis..... when they were talking about operating a few months back, I told them the dates I'd be away and they made a note...or supposedly made a note in my files.
Anyway, as it stands today - I have no appointment to discuss anything with anybody.

Dave bless him, it must be driving him crackers with worry also

They caused an argument between Dave and myself.... we don't argue about anything these days, life's too short to waste it on arguing with each other at our time of life.....but they managed to wind him up big time, when I told him that they couldn't give me another appointment.

Sanji x

I can understand his frustration as I'd be the same.

Not long now until your holidays. Take all your necessary meds and spares with you. Take some antibacterial wipes or spray, and clean down any sunbed mattresses you use.

At least you know that the hotel is clean and the food is good

Have a lovely time, let me know how things are going xxx

Update....
I had a lovely holiday this time, no admittance into a hospital and just one day where I felt absolutely terrible and despite being very selective about what I ate, I brought back all my evening meal in the early hours.
I would have loved to tackle some of the desserts on offer in the hotel, but as tempting as they were, I resisted and just had a couple of scoops of ice cream.

Anyhow, we came back from holiday last Tuesday and I was still feeling that I'd had enough of hospitals, so I was being stubborn and refused to phone anyone.
Then out of the blue I got a phone call on Thursday afternoon from the Crohn's nurse. They've now opened the bookings beyond October as the present locum consultant is staying....obviously my notes had found there way to the person who looks at the cancellations or DNA ( Did not attend)

Whilst we were talking on the phone, there were only 2 appointments left for November and one of them went whilst we were having our conversation, so the nurse quickly booked the only remaining appointment at 4-45 pm to see the Medical Consultant.

In the meantime, having been discussed again at one of these end of month meetings last Thursday morning, they decided that they want three poo samples from me, every fortnight....bringing it to 6 weeks.
They want these samples to determine whether or not to offer me the autoimmune suppressant drugs, as the tests on the samples will tell them if the Crohn's is active.

It's bluddy absolutely unbelievable, I had my Consultant Surgeon in August saying that I should be on these drugs and that is the reason for him referring me back to the medical team to sort out the medication and the frequent blood tests. He said that he doesn't want to see me again (in a nice way) as it will mean another operation, and now the Medical Consultant is fannying about for the next six weeks.

Whilst he's fannying about with poo tests, nobody is asking me what I'd like to do or how I feel about these very potent drugs that they use to stop reject after organ transplants and wipe out your immune system.

When I said earlier that if they carry on bouncing me between the teams, it will soon be November and a year since I had my operation......I didn't think that it would come true.

Sanji x

Glad to hear you had a good holiday Sanji

Why weren't you automatically given an appointment when they opened them up?

Glynis HT Admin wrote:

Glad to hear you had a good holiday Sanji

Thanks Glynis - We managed to have a day in Malaga City - We went looking for ideas for an outfit (for me) for my son's wedding in Sevilla....I wanted something with a Spanish twist, not flamenco styled, just the kind of dresses the Spanish wear for weddings.

In the end, although I saw the 'perfect dress' - I dare not buy it because I have no idea what size I will be next June. I'm going to have to leave it until the last minute, because some days my stomach is reasonably flat, and on other days the bloating from the Crohn's makes me look like I'm 7 months pregnant....it really does fluctuate so vastly on a daily basis and can mean that on one day I can get into a size 12, and on other days I could need something 2 sizes larger (depending on the sizing of the brand.).

Apart from the visit to Malaga, we didn't go far from the hotel and spent more time on the beach rather then traipsing around to tire me out. We went to see the Romeria because it was a cloudy day, but having seen it several times before, we didn't even stop for the end of the procession.

Why weren't you automatically given an appointment when they opened them up?

Glynis, I honestly do not have a clue, I'm beyond trying to fathom out how I've managed to reach a 1 year milestone since the start of the symptoms, and I'm still being 'investigated' despite having a major flare- up in June and needing a hospital admission.

Sanji x

Have you thought of maybe getting something floaty in order to cover your stomach (plus be more comfortable) just in case, on the day, your stomach bloats up?

I'm glad you got to Malaga as I know Dave was really impressed with it last time you were there I wish we'd gone now

It's lovely walking around La Carihuela but it's so easy to walk miles without noticing, especially along the prom. It's very deceiving isn't it?

You just be really peed off with your care Sanji. How many months ago did your surgeon suggest you should go onto the new medication and yet here you are in the same position you were. I know your not too keen on the side effects of the meds but.....you'd have probably been in the same position even if the suggested medication was a wonder drug. Suggested but not discussed or given.

Have you thought of maybe getting something floaty in order to cover your stomach (plus be more comfortable) just in case, on the day, your stomach bloats up?

Hi Glynis.
Yes, I think that is the most sensible thing to consider- The dress I liked in Malaga, the top layer was made of chiffon and not tight fitting.

I thought things were settling down - I've had 5 or 6 weeks where I've felt better, than I have for a long time.
But no, it's not to be - I 've felt like poo since last Thursday and just tried to plod along, because this is Crohn's and this is what it does to people - last night it came to a head.

I went to bed after taking the Ranitidine tablets and got woke up at 4am. As soon as I sat up, I started vomiting bile - not food, just bile - I managed to pull my pyjama top up and save my bed linen, and the carpets on the way across the landing to the toilet.

I thought I'd got rid of it all, gawd knows where it all came from, and as soon as I got back into bed, I was dashing across the landing again.
At 5 am I was sat downstairs after grabbing some Gaviscon - bile really is green horrid stuff - my whole oesophagus was on fire....and then the pain in my guts started.

The pain has gone today and it's just a bit tender, although my whole body feels like someone has kicked me up hill and down dale.

Haven't managed to get out of my pyjamas today (clean ones) and been in bed (on and off) all day....that's why I'm not tired and typing in here.

Crohn's is a of a disease.

Sanji x

Awwww bless you. I can't imagine how you must have been feeling it's always worse when your ill during the night as you feel so alone, and that everyone else is asleep and your the only one in the world who's awake ( well I do but I'm a bit of a baby and feel vulnerable if I'm ill during the night with my hubby working away).

Your stomach was probably sore with all the retching & there's not much you can do about it at the time unfortunately. My mam always used to say to still have fluids as it's better to bring something up than to dry heave for that reason.

It doesn't matter if you've had a pj day, you did the right thing having plenty of rest. I hope you feel better soon

it's always worse when your ill during the night as you feel so alone, and that everyone else is asleep and your the only one in the world who's awake ( well I do but I'm a bit of a baby and feel vulnerable if I'm ill during the night with my hubby working away).

Yeah that's true and you think, why is everybody asleep ?...wake up I need you !!!
I'd be feeling vulnerable if I was on my own, it's not being a baby, it's understandable.
I've got Dave and boy is he a light sleeper, he hears everything, even the slightest thing when he's taken himself into the double bed in the back room. The fact that he is there is reassurance.

When I was sat downstairs, I brought my tablet back to life and I was still on HT - I was surprised how many people were on-line at 5am ...different countries and different time zones......more people than we have in the daytime.!

Sanji x

He's a good 'un is Dave

And us nightshift workers of course!