Feeling like s*** again !!

[Jenny06xx]

I'm so fed up : (

I'm still in a flare !
I'm on 25 mg pred an 9 mg budesonide so I should b feeling better but no.

I've managed to add to that ...
Thrush both ends plus ulcers in my mouth an been continuously bleeding ( period) since September !!! Awaiting tests for this now .
And now I have a bad cold/flu !!

I feel utterly exhausted !

Im unable to eat because of the pain an diarrhoea yet know I need some energy from somewhere, so in comes ensure .
I'm taking iron tablets yet my period won't stop so they aren't helping an I can't have anything to stop the bleeding until I've had an examination next week to figure out why .
Im still waiting to c my new gastro the Nhs messed up an tried to send me to the old one and I refused , so stuck on a waiting list in limbo again !

This is a bloody ****** nightmare !!! Pun intended lol

Could pred cause the continual bleeding ? My gp said no so I'm a bit worried .
Sorry need a rant lol
Jen xx

 

[Denise]

Hi Jen,

I looked up pred and it says a side effect is abscent or irregular periods. I included the link here: http://www.nlm.nih.gov/medlineplus/druginfo/meds/a601102.html#side-effects

I'm sorry you are feelings this way and I hope you get some answers soon.

 

[Jenny06xx]

Just to add

This is a referral from my gp sent in august !!
The new gi is the guy who diagnosed me through my pill cam etc and said he'd be happy to see me .
So my gp sent a letter saying I wanted a referral to him .
When I was seen by my old gi team in hosp in sept they said I would b seen by new gi in 6 weeks an the referral was fine .
So 3 months nearly 4 an back to square 1 !!

 

[beth]

<and relax....> Presumably you have an appointment letter, with a phone number for the clinic? so phone and ask why they have booked you with the old consultant when you want to see the new one and have been accepted by him/her. Is it the same hospital/clinic?

And yes, you can have a second opinion. And don't forget you can choose the hospital you go to, seeing a specific person can be difficult, but even there phoning the clinic/ibd nurse/secretary/ up directly can work wonders compared to the generic 'appointments office'.

 

[Jenny06xx]

Yes it's sorted!!!

The booking office called me today an explained they keep sending me to my old consultant as i need an urgent appointment and he's got the quickest app plus I've been with him 8 yrs so they just assumed it was better to stick me back with him .

I explained I cannot stick being treated by him anymore ( in a lovely way ) and wanted to see someone else , I have to wait 6 months for an app but Im willing to wait !!
Luckily I know if anything happens I have my gp or worse if I end up in hospital Ill get to see him quicker anyway lol
At least it's getting sorted
Thanks
Jen xx

 

[robbo87]

6 Months!???? that is shocking! I'm sure they are meant to meet targets and get you an appointment within a much shorter time than that.

anyway good on you for refusing to see that doctor, I remember having to refuse treatment by a certain GP after I was really really ill with crohns, although it wasnt known then.... he diagnosed me with oral thrush and a day later i was in hospital....

Hope you are on the mend soon!

 

[beth]

That is shocking, but at least you've got it sorted.

 

[SdN]

Sorry you're having such a rough time of it Jenny, I'm a guy so I can't sympathize with the period but I did just have a blood transfusion a while back so I know how exhausting anemia is!

 

[archie]

I'm glad your on a new waiting list but 6 months seems a bit long for an urgent app even on the nhs! Phone them every week and tell them your willing to take a cancellation app, those who shout the loudest and all that. Good luck

 

[monkey]

6 months is unacceptable... 3 options
1. Phone the secretary direct, they can usually help
2. Ask if he does priavte work, costly, but money talks
3. Pick up phone, phone your local paper/tv make sure you tell them you're doing it.... Anything to avoid bad press
Good luck!!

 

[Jenny06xx]

Thanks all

6 months is taking the p !!
But it's either I accept that or get shoved back with my horrible consultant !
Hopefully it will b sooner who knows.

He is the top private consultant in my area an that is why there is such a wait on the nhs because he mostly does private work .
I really can't afford to see him privately ATM maybe after Xmas we will see how our finances stretch lol

I don't want to kick up a fuss I just want to be seen an sorted by a different person ( he actually diagnosed me ) but I've never met him .
I always worry if I kicked up a fuss I'd always be labled as THAT 1 complains get her outta here quick, do it by the book etc !
An I want to feel relaxed when I see him not worry he's only seeing me coz I kicked off .

I'm still struggling with the pain an diarrhoea , the cold/flu has nearly gone

I take controlled release dihydrocodeine 120mg 2x a day plus 30 mg normal release 4x day or just as needed an find they help alot with the D , but still not enough for me to not be near a loo at ALL times ! I'm finding it more an more difficult to deal with the D , it just seems to get worse an worse , do any of you know a how manage this ?
I have tried every pill or powder going now an find the only thing that slows it is the opiate based meds ( codeine, lomotil, dihydrocodeine etc )
So is the only other option a stoma ? To bypass the intestines entirely ?
I'm gonna post this question seprately aswell so I get a few more answers
Jen xx

 

[terri_ann87]

Hi Jenny,

I would really encourage you to contact the docs secretary. Both my surgeon and GI doc have always said, any problems between appointments and I am to ring them asap. My surgeon has discharged me but has told me at the first signs of problems to ring his sec and not wait for referrals.

I'm sure as a doctor they would not want to see you suffering especially if they can help.

 

[archie]

can you email him? most consultants email addresses are available through the trust I emailed my GI loads last year before surgery which saved his and my time on appointments, although I understand that this is tricky if you havent met him yet

 

[sashaz]

Good luck I feel for you! The stress of worrying about it is also a bad thing so your in a catch 22 sitation about it.

Hope you can sort it out.