Hello again!

[Bld]

Hello

I can't remember when I registered for this forum but as my disease is bad at the moment I thought I'd say hello again!

My story....well I was diagnosed with Crohn's in 1997. Since then I have been coping pretty well with jut the odd flare which was controlled with Pred and Pentasa. In September last year things started to get a lot worse and the usual meds didn't help. I was going to the toilet 20+ times a day, got Erythema Nodosum, leaks of mucus at night etc, etc.

My GP referred me to the consultant and I got an appointment for April but as things were so bad I paid to see him privately. I am on the fourth week of a decreasing course of Prednisolone and so far there has been no change at all. I went back to see him yesterday and am booked in for a colonoscopy tomorrow (Privately again - 4 month wait on the NHS) He is talking about either a high dose prolonged course of steroids (which I am really not keen on!) or trying Azathioprine depending on what he finds.

So it's Fleet for me this evening and no doubt a night on the toilet!

 

[mikeyarmo]

Hello again Bld .

Sorry to hear that things have not been going too great over the past couple of months. Hopefully the colonoscopy helps find you a more effective way to treat your Crohn's Disease.

I assume you are in the UK as I believe that is where the NHS is used (correct me if I am wrong). Out of curiosity, do all doctors/medical services have an option to pay privately or is this just something some docotors arrange outside of the system?

 

[Bld]

Yes I'm in the UK. The NHS is free of charge but the waiting list for non-emergency investigations is long. If I were to go on the NHS starting from now, I'd be looking at a first appointment at the end of June and then another three month wait for a Colonoscopy. We are fortunate that we can pay for private treatment and then go back into the NHS, which is what I hope to do as consultations are £120 each and the Colonoscopy is going to be £1270. I can't imagine waiting for six months to get this under control again! We can pay for private health insurance but I'd not be covered for this as it is a pre-existing condition.

On the good side of the NHS, I did have a nn-Crohn's related emergency two weeks ago and was seen and operated on within four days for no cost.

 

[Angrybird]

Hello and welcome back Bld! I am sorry to hear that you are not doing well and am back to the stage of tests and potential new medications. I agree with you about the long term steroid idea especially if you don't actually feel any benifit from them. Perhaps head over to the Aza sub forum:http://www.crohnsforum.com/forumdisplay.php?f=64 to get a bit of info on this in case it does become part of your new treatment plan.

I hope tonight has not been too awful for you :hug: and pls keep us updated on how you get on.

xx

 

[David]

Welcome back I'm sorry you're going through a rough patch right now

We're here for you. Please let us know if there's anything we can do for you.

*hugs*

 

[Bld]

Thanks guys! Last night was pretty hideous, whoever said Fleet tastes of lemon and Ginger was having a laugh! I don't know if it was the Fleet but I was so cold and shivering that sleep was pretty much impossible (along with the loo trips!). Just about to take the second one now......

 

[Angrybird]

Good lcuk hun, if you cannot manage all of the fleet this mornng do not worry. I couldn't drink any of the second batch of stuff for my last scope because I was just being sick all the time - it didn't make any difference and nurses at the hospital said it was fine.

 

[SammieC]

Hi BLD,

Just a quick one about the NHS waiting lists... i can't afford to go private at the moment (and as you said pre-existing condition = not a chance) I've suffered since August 2011 with absesses and i'm only just getting to see a Gastro doc (today actually)

Did you struggle to get referred to a consultant from your GP (It took me 5 visits to the docs with absesses ((the crohns wasnt diagnosed till January - see my thread for more info))

I just seem to have a huge problem with the waiting and the NHS in general, the way they are handling me is nothing short of a joke.

Good luck with everything! I hope you get back on form soon

:hug: Sam x

 

[Bld]

Hi Sammie

I am really lucky with my GP. I think because I have had this for so long, he is happy for me to let him know how I am feeling and what meds I need. Also when I felt the meds weren't working he referred me as soon as I asked him too. I think all GPs are different and some are very reluctant to refer. Hopefully once you have seen the consultant today, they will be able to speed up the process.

Good luck to you today, we can compare notes later!

 

[Bld]

Good lcuk hun, if you cannot manage all of the fleet this mornng do not worry. I couldn't drink any of the second batch of stuff for my last scope because I was just being sick all the time - it didn't make any difference and nurses at the hospital said it was fine.

Thank you I took it differently this morning, I had one glass with the prep in, mixed with water and another with lemonade in. A straw in each glass and drank them both together. It was a lot better! I am now 'going' through the eye of a needle so hopefully he'll get a good look.

I have had 3 colonoscopies in the past and only one of them has got to see all the way round as apparently I have a loopy bowel. Not the only thing about me that's loopy!

 

[Bld]

All done. There are some quite significant areas of ulceration/swelling and a stricture at 70cm. The plan is two weeks on steroids while I get a TPMT blood test done. Back to the consultant on April 13th for biopsy results and to get started on Azothiaprine. I'm slightly nervous about the Azothiaprine and potential side effects but looking forward to a hopeful improvement in symptoms. I have three lovely pictures of the insides of my bowel, we are just deciding where to display them in the house

 

[sawdust]

I have three lovely pictures of the insides of my bowel, we are just deciding where to display them in the house

Oh, thanks for brightening my day. I just pictured you proudly standing back from your new addition to the wall: "Bld's stricture in pink, 2012"

 

[Angrybird]

Glad it's done and over with hun, look's like you'll be on the same med as me! As always there are potential side effects but I have been on the Aza (for the 2nd time) for about 10 weeks now and all my bloods are good, the tum is behaving and as of Tuesday I am off the steroids (yay!!!!). I will soo be keeping my fingers crossed that it works just as well for you.

xx

NB You got piccies? I want one from my last scope! I am really curious as to what my stricture looked like....

 

[Bld]

I'll try and figure out how to post one tomorrow...

I hope I have the same results with the meds!