Hmm...what to do?!

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qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 2/19/2009 3:50 PM (GMT -6)   
Having been messed around and discharged from hospital too early a couple of weeks ago as a result of not responding to the IV steroids, the gastro nurse called me last Friday. She told me I need to go back in hospital, on the week that my consultant is on the ward. She told me I'm going in a week tomorrow (Friday).
 
The problem is that in the meantime I am not on any medication apart from the Asacol, as nothing I've been given has worked effectively so far. The nurse said I could try taking the suppositories etc but that theres probably not any point as they've not worked so far. I'm not feeling too bad but my energy levels are very low and although I'm not having to go to the toilet too many times a day (usually 4/5 times but some days up to 8/9), the amount of blood I'm losing is worrying me. Quite often I am passing just blood and mucous, but other times like last night I am passing pure blood and it is literally dripping and turning the water red. I have been off work for the past 3 weeks but am due to go back Mon - Thurs next weeking working just 2 hours. Is it worth calling the gastro nurse again to see what she suggests to do, or just hang on until I go into hospital a week tomoro??
22 year old female, from the UK
 
Diagnosed with Ulcerative Proctitis Jan '08
Hospitalised Jan '09 for IV Hydrocortisone steroids - had no effect!
 
Currently taking daily: 9 x 400mg Asacol tablets, plus Fybogel fibre supplement and vitamin tablet.


Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 2/19/2009 3:53 PM (GMT -6)   
Why does she want you to go to the hospital? Can she possibly prescribe an enema for you - they reach further than the suppositories. Either mesalamine like Solafolk/Rowasa or a steroid enema - like Colocort or Cortenema foam.
Mamas Boys (aka KTM)
Colazal, Azathioprine, Remicade
Culturelle, MultiVitamin, Folic Acid, Viactiv
Status: Remission!!


qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 2/19/2009 4:03 PM (GMT -6)   
Because I havn't responded to any medication in the past year since I've been diagnosed. So they want me to go into hospital to have intra-venous steroids. They tried me on hydrocortisone in hospital a couple of weeks ago but it had no effect and they sent me home saying I needed a colonoscopy. Then like I said in my previous post she called me to say I needed to go back into hospital as I was discharged too early, and that they were going to cancel my colonoscopy.
22 year old female, from the UK
 
Diagnosed with Ulcerative Proctitis Jan '08
Hospitalised Jan '09 for IV Hydrocortisone steroids - had no effect!
 
Currently taking daily: 9 x 400mg Asacol tablets, plus Fybogel fibre supplement and vitamin tablet.


Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 2/19/2009 4:09 PM (GMT -6)   
Have you tried using enemas?
Mamas Boys (aka KTM)
Colazal, Azathioprine, Remicade
Culturelle, MultiVitamin, Folic Acid, Viactiv
Status: Remission!!


Megansmom
New Member


Date Joined Feb 2009
Total Posts : 9
   Posted 2/19/2009 5:07 PM (GMT -6)   
You should contact the nurse to have them check your blood count since your energy level has dropped. You're probably going to need to take iron if you're anemic.

qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 2/19/2009 5:43 PM (GMT -6)   
I have tried more than one type of enema and none of them had much effect. The consultant told me that enemas go up further than the suppositories do and so they miss the area of inflammation (Proctitis). However according to my GP - she seems to think I DO have inflammation further up and that I was maybe misdiagnosed. But who knows...hopefully this next hospital stay will sort things out :)
22 year old female, from the UK
 
Diagnosed with Ulcerative Proctitis Jan '08
Hospitalised Jan '09 for IV Hydrocortisone steroids - had no effect!
 
Currently taking daily: 9 x 400mg Asacol tablets, plus Fybogel fibre supplement and vitamin tablet.


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 2/19/2009 5:45 PM (GMT -6)   
Do you mean they want to admit you next week? That's a weird way to practice medicine.
How did they know it had no effect if they didn't do a scope?

What if you say, no thanks?

Maybe you can't handle that fiber you are taking. I can't, it's too harsh.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Probiotics (Ultimate Flora, 50 billion). Doing much better, but still having some bad days. 


qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 2/19/2009 5:58 PM (GMT -6)   
Theyve completely messed the whole thing up! The gastro nurse kept apologising haha! They know its had no effect firstly because I had a sigmoidoscopy about a month ago which showed the inflammation as severe, and secondly because even when I was in hospital I was still continuing to bleed heavily and pass alot of mucous.
 
Its all very confusing!
22 year old female, from the UK
 
Diagnosed with Ulcerative Proctitis Jan '08
Hospitalised Jan '09 for IV Hydrocortisone steroids - had no effect!
 
Currently taking daily: 9 x 400mg Asacol tablets, plus Fybogel fibre supplement and vitamin tablet.


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 2/19/2009 6:07 PM (GMT -6)   
Good grief. Hang in there.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Probiotics (Ultimate Flora, 50 billion). Doing much better, but still having some bad days. 


Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 2/19/2009 6:45 PM (GMT -6)   
Yikes! Why can't they admit you now if they think that your condition is so severe? Why the wait?
Mamas Boys (aka KTM)
Colazal, Azathioprine, Remicade
Culturelle, MultiVitamin, Folic Acid, Viactiv
Status: Remission!!


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 2/19/2009 6:52 PM (GMT -6)   

My thoughts exactly.  If sigmoid shows a need for hospitalization - why are they waiting?  When I had my sigmoid and doc gave me the prednisone - my NP told me to start it as soon as possible - not to wait even two days - it got worse before I could get the prednisone - more bleeding, etc.  I know you are in the UK so possibly they do things differently.  I would probably be in emergency and asking for my doctor.

Sure hope you get the help you need - FAST!!  INSIST!! 

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
 Colonoscopy 10/28 showed only few cm. left to heal in rectum - tried Proctofoam for weeks - no luck.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Tried hydrocortisone for two weeks with no change.
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 
 
 
 
 
 


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 2/20/2009 2:31 AM (GMT -6)   
I think it's time to find a new doctor. These blokes don't know what they're doing.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission

Lexapro (for stress)
Probiotics and Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: anything with high-fructose corn syrup, foods high in fructose, artificial sweeteners
Previous treatments: Fecal transplantation (worked), Prednisone (stopped working), Colazal (stopped working), Asacol (stopped working)


qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 2/20/2009 4:12 AM (GMT -6)   
Well the specialist nurse has been fantastic but when she called she said 'I know its a long time to wait but the consultant doesn't want you to be in the hospital until the week that he's doing the patient rounds, so he can keep an eye on you himself and make sure nothing goes wrong this time.' And I was like well..what am I supposed to do until then? And she said I can try taking different medications but there might not be much point, and that I can always call her if I need to in the meantime. So I dunno...but I'm very fed up!
22 year old female, from the UK
 
Diagnosed with Ulcerative Proctitis Jan '08
Hospitalised Jan '09 for IV Hydrocortisone steroids - had no effect!
 
Currently taking daily: 9 x 400mg Asacol tablets, plus Fybogel fibre supplement and vitamin tablet.


JM21204
Regular Member


Date Joined Dec 2008
Total Posts : 254
   Posted 2/20/2009 4:17 AM (GMT -6)   
I agree with some of the prior posters, the whole story just doesn't sound right.
34 yr old female
Diagnosed with Pancolitis in 1/2007
Baby due 3/2009
Meds:1600 mg Asacol a day, Ferrex, Pre-Natal Vitamins, Lovenox, on and off Prednisone (40 mg then taper)
 


qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 2/20/2009 4:23 AM (GMT -6)   

Yer I know..the whole thing (from my first diagnosis) has been a complete mess up...I've been complaining of bleeding the whole of the past year but each time I went for my hospital appointments theyve said 'oh just try this medication', or 'try this for a bit longer' and none of it made any difference, it kind of felt like they were just fobbing me off with medication each time. Then I got the specialist nurse on board and things have at least started moving forward (although obviously there have been complications on the way!)

I am going to write a letter of complaint in once I'm out of hospital, cos its not right!


22 year old female, from the UK
 
Diagnosed with Ulcerative Proctitis Jan '08
Hospitalised Jan '09 for IV Hydrocortisone steroids - had no effect!
 
Currently taking daily: 9 x 400mg Asacol tablets, plus Fybogel fibre supplement and vitamin tablet.

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