Yet another new member to the club!

[Welsh-bird]

Hi there,
Just wanted to stop by and say 'Hello' as well as to introduce myself. My name's Andrea, and as you may have guessed I'm from sunny Wales (today at least!). I was diagnosed with UC almost 11 yrs ago now, and up until this year had managed to live a 'normal' life, taking Asacol, Preds (don't you just HATE the damn thing's?) Codeine Phosphate, and Lomotil when required.

Fast forward to May 2010...routine colonoscopy and biopsies showed disease had now taken over my whole colon. My Gastro decided to admit me to hosp there and then and started a 9 day course of Hydrocortisone IV. Still no response, so moved on to Ciclosporin IV for 5 days and 60mg of pred. Spent 2 weeks in hosp and discharged on oral Ciclo, preds and Azathioprine. Now it all goes horribly wrong. My Ciclo levels weren't monitored closely enough and after 3 weeks of taking it, and getting more poorly by the day, I was readmitted. They found I was toxic and blood tests revealed that my levels were 3 times what they should have been, and stopped the drug there and then. Spent a further 2 weeks in there detoxing and home again. Then after a few weeks I developed a reaction to the Aza and that was stopped, 3 weeks later started on Mercaptopurine. Now my body must hate all these meds as last week my LFT's were raised, Mercaptopurine stopped (temp I hope until liver function returns to normal), but told by my Gastro that there are now no drugs left if this fails...a total colectomy will be my only option. Met with a colorectal surgeon and stoma nurses last week, and have now got to the point where I'm scared stupid.
I DON'T want this invasive surgery. I understand that there are thousands out there with a stoma and lead normal lives, but psychologicall I'm finding this difficult. I had 10 good years, and in a space of 4 months am looking at having it all taken away.

Having read through numerous posts on here, I count myself lucky that UC is my illness, as all you with Crohns out there seem to suffer more than me. I feel awfull for not coping when you all seem to have been dealt a worse hand than me...but I just needed to vent.

Thanks for reading this long, drawn out post. Hoping tomorrow will be a better day (blood tests, hoping some liver improvement). Off now to take evening dose of drugs, and yet another pred induced sleepless night ahead.

Nice to meet you all.
Andrea x

 

[Absentminded]

Welcome Andrea,

So sorry you're going through all this at the moment.
I hope you find some relief and answers soon!

I live just over the bridge from you, in Bristol! There's a few of us on here from this area.

Sending you best wishes.

Lucinda

 

[Absentminded]

P.s. Blimey, that sounded formal!
I don't normally talk like that!!

 

[girlygirl]

Hello Andrea,
Wanted to say welcome aboard! And only the best wishes to you! There are more and more ppl to the forum daily. Its a great place to vent and is also filled with so many knowledgeable indivuals who care! My symptoms seem simple in comparison to so many others.. But it has been a journey for me too. I'm so new and scared somedays and until finding this forum really felt quite alone, as not many ppl are truely aware of IBD/CD/UC. I hope the meds work for you and wish you only the best! Hang in there!
((HUGS))

 

[Brindle]

Hi Andrea and welcome.
The past 4 months have really hit you hard!!! So sorry. I have to imagine that with all of the meds and toxic levels that you liver has had to work overtime to clear it from yur system. Hopefully your LFT's will come back down and the meds will work for you.
There are so many nice people here, you will just love it. very supportive and experienced in all aspects of IBD.

Hang in there

 

[Crohn's 35]

:welcome: Andrea!! So glad you decided to join us. As girlygirl says , everyone is here to support one another, because the undpredictability cause uncertainty in our daily lives. Some cope better than others and some bodies take the meds better. Mercaptopurine (6pm) affects my liver almost instantly and so do imuran, others have taken for years and helps them. Support means alot a Crohnie and there are many who don't have a support system and we try to help out best we can. We are certainly not doctors but we all have similar symptoms and pain.

It doesn't matter if you are mild or severe, it still is hard on the brain, and if someone can find a way to be in the mild stages or remission, we still need to hear them, as we can learn from you too! Welcome aboard, hope to see you around. Keep us posted surgery isnt fun but maybe some one could lighten your loadful of questions

 

[Shannon]

Our prayers are with you.

 

[Astra]

Hi Andrea
and welcome

poor you, your head must be wizzing!
My mate has UC and has just been approved for the biologic Remicade (Infliximab over here). Has your gastro mentioned any of these?
have a read thro our Remicade Club and the Humira Club threads for info.
Empathise about the aza and mercap, they were both toxic to me too!
glad you found us, lots of friends here for you
lotsa luv
Joan xxx

 

[beth]

I was thinking about the biologics too Joan, and not to mention my favourite - methotrexate. Got to be worth a try before such surgery.

 

[CDDad]

Hi Andrea,
I know what you mean about having it taken away in a short time span. I was dealing with my Crohn's symptoms for 20 years before it all went real bad. I had to face the fact of having a Proctocolectomy (like a Colectomy but with more fun parts removed).
That's all behind me now and I'm feeling better than I have in years.

Long story short, if you do need surgery, the positive aspect is that it will be a cure for you. You'll be done with that disease.

I've had my ostomy since April and I learned to adapt, cope, and most importantly, enjoy life again.

If things go this way for you, please visit the Stoma sub-forum. Lots of good info and helpful folks. I know first hand it cannot be believed ahead of time, but it's not as bad as imagined.

I wish you the best of luck to avoid surgery.

-Joe
Crohns since 1989
3 Surgeries - Hemicolectomy '08, Sm Bowel Resection '09, Proctocolectomy '10. Lets hope I'm done now!
On Protonix and Humira.

 

[seaofdreams]

Welcome to the forum Andrea
I can so relate to the sleeplessness of being on Prednisone. I've just dropped from 40mg to 30mg so I'm hoping that I can start getting some sleep soon haha.
I hope you find this site as helpful and supportive as I do

 

[lseibert]

Welcome Andrea,

Sorry to read about what you are going through, I'm on 60 mg Prednisone also, it sucks. I have, also in the span of 4 months, went from "mild to severe" case of Crohn's. I really have a deeper understanding of what others are facing.

I have recently started Remicade and slowly seem to be getting better, I have my fingers crossed this will be my "miracle" drug, and get off the dreaded Prednisone. You should ask about it, I have read all the post on here, and it looks very hopeful.

My prayers and thoughts are with you and recovery.......:rosette2:

:hug::getwell::getwell:

 

[DustyKat]

Hi Andrea and :welcome:

I'm so sorry to hear about what you are going through, what a shock to the system. I can't add to the great advice you've already been given so welcome aboard!

Take care,
Dusty

 

[Welsh-bird]

Hi.
Thank you all for your reply's and advice, all so much appreciated!
Have met with my IBD nurse today, who sent me for more urgent blood tests as thinks that I'm going toxic again on the 6MP. Have to wait til tomorrow for the results but have been told that she would like to start to reduce the Preds asap, as doesn't want me facing surgery on such a high dose - would also hope to have surgery done next month!!

Astra and Beth, thanks for the advice re Anti TNF, have again mentioned it today and told that my NHS trust doesn't advocate it as treatment for UC. Have tried and failed on Ciclosporin, and so under NICE guidelines, would not be of any financial benefit when surgery to remove my colon is the better option. (although I would so disagree with this!)

Another day that is keeping Kleenex out of recession...single handidly I think I have cried enough recently to stop any 3rd world drought! No offence meant here!!

Again, thanks for all your kind words...just got to wait until tomorrow now when it may well be 'Game over'.

Wishing you all well,
And x

 

[Astra]

Gosh Andrea!
those NICE guidelines really stink!
Surgery is not the last resort, think I'd really push for approval, but of course, it does depend on your PCT, and it makes my blood boil!
Wishing you lots of luck Andrea with this
xxx

 

[Welsh-bird]

Hi Astra,
Had my fill now with hearing about NICE guidelines...God knows who they are, but they need to get into the real world and realise that life doesn't work according to a text book. If so, then none of us would be here taking these c**p drugs, that sometimes make you feel worse than your actual illness!
I honestly wish that some one, my IBD nurse, Gastro or Colorectal surgeon would see me for being 'me', just take the time to understand how I'm feeling about having an illeostomy, without shouting it's praises. I have no doubt that in a years time I will be greatfull for it, but right now I'm finding it hard to get there.
So sorry for the rant...just don't know where to turn anymore and can't stop crying! Just wish someone would take this away!!

Hope you're keeping well. and thanks again x

 

[Astra]

I know Andrea
these really 'nice' NICE people have so called made recommendations to help the NHS to save millions of pounds and to maintain or improve the quality of care!?!? WTF?? Who are these people at all? Playing God?
Jeez, they'd make a cat bleeding laugh!
Have you phoned PALS? they're dead good fighting our corner.
Hang on in there hun
xxxx

 

[Welsh-bird]

Astra, I've never heard of PALS, (but right now would ring anyone out there who could possibly get me Inflix.), so will get Googling!! I don't doubt that by Xmas I will have lost the fight here, but I need to be sure that once I've woken from the surgery, that in my mind I have done all I possibly could to prevent this.
I sound like such a bloody whinger (not usually!!), but 5 months, so many failed treatments, and NICE men in white coats who haven't a bloody clue have almost driven me crazy! I also pay for BUPA cover (what a joke!)..they won't cover me now I'm on Immuno's.
The only relief here, is getting off the preds...7 months on and I feel like an elephant!! lol

 

[acg101]

Hi Andrea and welcpme to our forum. you will find here many nice folks with vast experience that can relate to your situation.

I have suffered from CD for over 16 years with ups and downs. at one point I was in the hospital for 6 weeks because they screwed up my cyclosporin blood levels and they almost killed me and I lost 45 lbs.
long story short, I am a fellow ostomite since July and I am the happiest men alive. I have my life back. No meds, no bathroom runs, no pain, I can eat whatever I want!.

Good luck with whatever decision you make.. and its YOURS to make.