Thanks for keeping us up-dated. I know we'll all be thinking of her. xx

Thanks Glynis!!! Not been in here so only found out about it via FB Please give her my love and when she's out of hospital and feeling bit better I'll give her a ring. xxx

Hope all has gone well today and they are able to help

Linda

Spoke to Sanji about 6pm last night and she got through drinking the gloopy stuff and her scan ok, said it took about 2 hrs. She's hoping to find out her consultants opinion today and then can hopefully go home.

Thanks everyone for your good wishes

Coming home A week in here is quite enough thank you - I've got some sleep to catch up.
Just waiting for Dave to pick me up .

Sanji x

Sanji, Hope they can soon get on and start to help you, bet it will be good to be going home.

Glynis, thanks again for keeping us up with any news

Time for some photos...
They put me on a low residue diet for two days before the small bowel barium meal and then they starved me from 6 pm the night before.
This is what they put in front of me to eat, and all I can say is...yuk yuk and yuk!!!





The stuff they give you to drink to clean out your bowels is called Citrafleet and it doesn't taste too bad, it tastes a bit 'lemony' and I suppose that's why they called it Citra....from citrus.

It's a lot nicer than the Kleen prep solution and you only have to drink a glassful of it and then loads of water every hour. And then a few hours later they gave me another sachet to drink, but it really is quite brutal the way it purges through your guts for hours and hours afterwards.
By the end of the day there was nothing left inside me and because it's quite brutal the way it purges, it had me running to the toilet and just bleeding from my bottom ( haemorrhoids)
Sanji x

That fish looks

Glynis HT Admin wrote:

That fish looks :zip

That fish was and they wouldn't win any awards for presentation to make it appear more appetising.
I went to bed last night and I can't even remember my head touching the pillow, I slept solid for 9 hours - hospitals are not a place to get any sleep.

If you know anyone with Crohn's and they seem fine one day and then the next day they are very ill, please believe them, because the flare-ups can come on that quickly.
I'll admit that before I was diagnosed with Crohn's and before I started getting the symptoms last October, I would have found it hard to believe that the flare-ups can come on in a matter of hours and be so intense.

I wasn't feeling too good last Monday, I felt extremely tired all day long and because tiredness is one of the main symptoms of Crohn's, I just thought I was having an 'off day'. - Then whilst watching the football on the TV during the evening, I started to get a few twinges.
Dave went to bed around 11-30 pm and I got up from the settee and felt strong pains in my stomach/ abdomen - I tried to 'walk it off' around the house, thinking it was just a bit of trapped wind, but all it did was get worse and worse.

I crawled up the stairs on all fours and tried to go to the toilet, hoping to find some relief, but there was nothing doing, so I got into bed and just rolled around in agony, then I got out of bed onto the floor on my hands and knees hoping that the shift in position might ease it off.

I'm not talking about having a bit of belly ache....it was bloody excruciating pain. I don't call for an ambulance lightly, I've called 999 twice in my life...7 months ago and last week.
I don't want to experience another night like that again, but the way things are with this disease, there is nothing to stop it happening again at some point in the future....the possibility of more flare-ups is something that sufferers have to get their heads around ..... it may be tomorrow, next week, next month or years away.

Sanji x

I 'lost it' yesterday and the frustration/anger got the better of me, then I started to shed tears.
This is what happened ...

Earlier in the week my surgeon came to see me and told me what he was going to do. He stood at the end of the bed and said that the MRI scan that I had in May, it showed a stricture near to the site of the operation.

He said "your bowel has done exactly what it did before, (and he made a twisting movement with both his hands), but at this stage I'm not going to rush into an operation, either today, tomorrow or next week and this may rumble on for a while, because I need to be certain whether the stricture has been caused by the Crohn's or by your body laying down layers of scar tissue to cause the narrowing".

I was in agreement with that, because if it's not active Crohn's, then I don't need to be taking steroids for scar tissue formation (with all the side effects).
He was talking sense and filled me with confidence knowing that he was going to be involved in this and keeping his eye on the ball. He's a 'down to earth' kind of guy with no 'airs or graces' and very easy to communicate with.... I like him a lot.

The barium meal procedure seems to have been a complete waste of time. There seems to have been a cock-up because the radiographer was looking for an obstruction and as soon as the barium passed through my guts, he didn't carry on with the rest of the procedure - I thought he was supposed to be looking for a stricture, because it's obvious that I haven't got an obstruction, otherwise I wouldn't be going to the toilet.

It's not just me saying this, the registrar was confused why they hadn't carried on with the whole procedure.
I just know that the diet/starvation and all that purging through my guts, didn't give them any information that they didn't already know and it seems to have been for nothing.!

To be continued after a cuppa tea

Yesterday morning at 7-45 am, a consultant surgeon came to see me - I'd never met him before and didn't get his name because his english was terrible, I think he was Egyptian.

He said " your test is fine, you can go home and we'll refer you to the medical team". The young registrar taking notes said "she already is with the medical team, and Mr S (my surgeon) has put her back onto his list too".

He seemed stumped what to say next, so he started telling me how IBD (Inflammatory Bowel Disease) is hard to diagnose and implying this was referring to me and my case.
I thought to myself, why am I hearing all this waffle and bull :swear? - Once again someone hasn't read my notes before starting to fob me off, otherwise they wouldn't be coming out with this.
So I said "whoa, stop there, I have Crohn's disease, I was diagnosed last November after a resection and the histology confirmed it was Crohn's, I also have a Crohn's nurse, so I don't need a diagnosis".

He said "Oh", < silence for a few seconds> because I'd stopped him in his tracks and exposed the fact that he hadn't fully read my notes. So he mumbled "we'll arrange an out-patients appointment to see you in clinic, you can go home" and then he walked away.

When he'd cleared off, the staff nurse said to me " Shirley, forget that ever happened"
The registrar came back to see me and I said "what was all that about"? - I know if he wants to be a doctor, he dare not speak up against a consultant, so he just smiled and said " I don't know, he is new here".
I took a walk outside to calm down.

When I was telling Dave what had happened on the way home, he wanted to turn the car around and go back to the hospital to lodge a complaint, and I know when he's that angry, that he wouldn't care whether he upset anybody or not.
Dave has been one in a million and he's put up with a lot,.... all the hospital visits, watching me in pain and being helpless, the cooking, the frustration and having to clean up after me. etc .
I'm sure those who have met him from HT would agree with me that he is a very placid man, but he was absolutely furious about it.
After yesterday's experience, I can now fully understand why people become frustrated with the system and their frustration can make them be aggressive or rude, because I really felt like telling him (consultant or not) to off.

Sanji x

I'm glad you're home again!

I think I'd be angry too!

Lets hope you don't have many more flare ups (none would be good).

And fingers crossed for some sort of progression on treating/managing it soon.

Try to keep smiling if you can

I'd be furious too!! The frustration is building up due to all the avoidable mistakes that keep happening because professional people aren't bothering to familiarise themselves with their patients medical history. I wonder if this is why we are called patients?

Sadly the NHS seems to be on a downward spiral. In our working days hubby was a medical laboratory manager and I was a medical secretary and we watched the changes going on around us with dismay. Worst thing they ever did was doing away with Matron (ok, who remembers Hattie Jacques ) and getting pen-pushers in who don't understand how the system works. Its not going to get any better any time soon.

Rant over!

Sanji, try and remain positive. We are all sending you our positive vibes. Hope you manage to get away on holiday.

We are off on our cruise tomorrow and can't wait. Ive had to increase my meds to 3 tablets a day which seems to be controlling the pain. Problem with these is I have to take them 20 minutes before eating which is a nuisance at home but manageable, but I'm not sure how its going to work while we are away. We will just have to see how it goes.

Off to finish packing, see you on our return

Hi Babs.
I've probably missed you and you're well on your way by now, However, it's never too late to send wishes to you for a lovely pain free holiday.:sun2

It is a nuisance fitting in all the tablets - I had to take a tablet in the morning and 2 hours before eating, and as I like my breakfast around 9 am - I took the tablet and water with me to bed and set the alarm for 7 am - then I dozed for a couple of hours, because I like my breakfast as soon as I get up - I'm like a zombie heading straight for the cupboard where the cereals/porridge are kept....I can't be doing with hanging around waiting and hungry.
We've ditched that particular tablet now and the two replacements, I can take before going to bed.

Hope you manage to get away on holiday.

We were going to cancel last week, but I 'm hopefully going on Tuesday morning and armed with a multitude of medicines (just in case) : Tramadol, Ranitidine, Lactulose, Prednisolone, Ondansetron (anti-sickness) Antibiotics and Inhalers.

That's just reminded me. re : Tramadol.
It's now been classed as a controlled drug, because it's being prescribed too freely ( like antibiotics have been dished out and misused) and as Tramadol is a semi-synthetic opioid, you can become addicted to it.
Everyone is different, but when I take Tramadol, it 'spaces' me out.

Re: The NHS.
I think we need another thread about that - If I start ranting about what's wrong with it, or more to the point what the politicians are doing to it - I think it will 'spoil' this thread, which I have tried to keep within the theme of a medical 'journey'.
I'm off to do a bit of last minute shopping this afternoon and to have my hair cut again...it's getting shorter and shorter.

Sanji x

I had a phone call this morning from the Crohn's nurse.
If you've been following this thread, you may recall that I wrote that on every last Thursday in the month, they have a special meeting to discuss certain patients, with several professionals in attendance to submit their opinion/suggestions.
Unbeknown to me, I was discussed again yesterday (they'd already discussed my case last month).

They've now decided that they do want me to have another Colonoscopy under a general anaesthetic and also a Barium Meal and follow through.... In other words, from your mouth following the barium liquid through to the other end.

I wish they'd make their minds up, first it's abandoned because of the pain, then they don't see any advantage for doing another Colonoscopy....and now they do.!
Why the barium meal and follow through? Could that be because last week the radiographer messed it up.?
All that foul tasting Kleen- prep stuff routine to do again....my guts must be the cleanest in the country.

I give up, I really do. Half the time, the left hand doesn't know what the right hand is doing.
They are going to arrange this for when I come back from holiday.

Also, the last time I spoke with the Crohn's nurse, when she phoned me to enquire about my symptoms the day after discharge from hospital, I told her about the doctor who discharged me ....this was also raised yesterday with my surgeon's partner (female)....I think they got the gist of how annoyed I was.
She sends her apologies , apparently he is a locum doctor.

Sanji x

Hi Sanji, hope your hair turned out and glad to hear you are going on your holidays
What strength Ranitidine have they prescribed as I buy the 75mg over the counter?

I bet your confidence and faith in your care is rapidly being met with

Glynis HT Admin wrote:

Hi Sanji, hope your hair turned out and glad to hear you are going on your holidays
What strength Ranitidine have they prescribed as I buy the 75mg over the counter?

I bet your confidence and faith in your care is rapidly being met with :think

Hi Glynis.
My hair ? Hmmmm, not sure - I'd went to the hairdressers with the intentions of having it all off and back to short all over again, and at the last minute I chickened out , so I asked for a short bob that looks straight all around - I didn't want it higher at the back than the sides or dipping lower at the back than the sides.....what's so difficult about cutting hair that's all the same length, straight all around?, imo it's dipping at the back.

Ranitidine dose is 300mg.
I also forgot about including the Vitamin B12, Calcium and Vitamin D tablets on the list, but hopefully all that Spanish sunshine should boost up my Vitamin D levels.

Sanji x

hope all goes well for you Sanji, enjoy your holiday, I cant go anywhere at the moment as I go for my op (hopefully ) on the 9th July, then again for the other aneurysm on my brain re coiling and pipe line stent, but as said enjoy your holiday
love Margaret (madmum)