How do you know when you have an ALL-OUT flare-up and not just a bad day???

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shortstuff1
Regular Member


Date Joined Feb 2009
Total Posts : 80
   Posted 3/16/2009 3:43 PM (GMT -6)   
I am newly diagnosed with UC and have been off steroids for 1 month. I have been having some blood, some mucus, some cramping but not everyday. Now, I don't know if it's me being paranoid but I think the pain is there more often. How do you know when you have just eaten/drank something bad or if you are having a flare-up? My nurse doesn't seem very knowledgeable and it takes days for my doc to call back with no additional info. His only response is to change my meds. When do you call for steroids?? At what point is a little blood & mucus, too much??? Sorry... I'm just so stressed about having to call my doc over every little thing and tired of getting "I don't know" answers!!!
 
shakehead  
29 yr old recently diagnosed with UC in Nov 08. Taking Asacol 3 times daily and Steriod enemas 2 times daily. no children, very active;


Ouchie2
Regular Member


Date Joined Jul 2006
Total Posts : 330
   Posted 3/16/2009 4:28 PM (GMT -6)   
Maybe you should look at changing doctors..Id be upset if mine took days to get back to me...(Its hard enough having UC let alone dealing with it on your own) You are not alone....there are some very knowledgable people who post here..Ive learnt so much by reading these posts....all the very best
HELLO FROM NEW ZEALAND

38 year old female
UC - Diagnosed 2006
HLA-B27 Gene
Iritis 2008
Asacol
Mercaptopurine (6MP)
Doxycycline


Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 3/16/2009 4:32 PM (GMT -6)   
If it's been going on for a few days it's probably the beginning of a flare.  What dosage of Asacol are you on?  Have you ever tried the mesalamine enemas - like Rowasa?

Mamas Boys
Colazal, Azathioprine, Remicade
Culturelle, MultiVitamin, Folic Acid, Viactiv
Status: Remission!!


shortstuff1
Regular Member


Date Joined Feb 2009
Total Posts : 80
   Posted 3/16/2009 6:29 PM (GMT -6)   
I am currently taking 800 mg 3 x daily (2400 mg a day). I am so new to this disease that I am not sure when to call the doctor... I have not tried the Rowasa... is that an anti-inflam or a steroid? I have only been of the steroids for a month so I am not sure how well the Asacol is working. Before I was diagnosed, I had a flare-up for over a year (dumb me ignored the symptoms). I appreciate all your feedback!!! yeah
29 yr old recently diagnosed with UC in Nov 08. Taking Asacol 3 times daily and Steriod enemas 2 times daily. no children, very active;


Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 3/16/2009 7:13 PM (GMT -6)   
Rowasa is the same medication as Asacol just in enema form.  It treats from the other end. Most of us try to use both oral meds and enemas to treat our flare.  The theory is that if you treat from both ends you will heal faster.

Mamas Boys
Colazal, Azathioprine, Remicade
Culturelle, MultiVitamin, Folic Acid, Viactiv
Status: Remission!!


shortstuff1
Regular Member


Date Joined Feb 2009
Total Posts : 80
   Posted 3/16/2009 7:16 PM (GMT -6)   
I will ask my doctor about that when/if he calls me back... If I don't hear back I'm taking cfg's advice and getting a new doc. I'm open to trying anything that works... thanks for the advice, I'm researching it now!

29 yr old recently diagnosed with UC in Nov 08. Taking Asacol 3 times daily and Steriod enemas 2 times daily. no children, very active;


Peety
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Date Joined Mar 2008
Total Posts : 2855
   Posted 3/16/2009 8:36 PM (GMT -6)   
Back to your original questions, I know I'm probably just having a bad day if I recognize I did something to cause it, like eat too much fiber (like nuts or big salad) or drink alcohol. Those things make me bleed worse pronto, but usually I can recover back to where I was before (flares are not caused by food).

Your doc should be more responsive than that. I also only ever talk to the nurse, but she calls back within hours or explains why she cannot. Granted, it's always only to confirm calling in an Rx that I request, after all these years! If you change docs, be sure they know why! Maybe it will help the next patient.
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; eliminated all wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion), trying Curamin. 
Flaring, seasonal? or supplements too harsh? Back on prednisone, trying 15/20 mg. Appt 3/6 to discuss Humira, etc.   


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 3/16/2009 11:40 PM (GMT -6)   
Peety said...
Back to your original questions, I know I'm probably just having a bad day if I recognize I did something to cause it, like eat too much fiber (like nuts or big salad) or drink alcohol. Those things make me bleed worse pronto, but usually I can recover back to where I was before (flares are not caused by food).

Your doc should be more responsive than that. I also only ever talk to the nurse, but she calls back within hours or explains why she cannot. Granted, it's always only to confirm calling in an Rx that I request, after all these years! If you change docs, be sure they know why! Maybe it will help the next patient.


Yes, same here. If I eat something wrong, my BMs aren't as well-formed.
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: pro-inflammatory foods, HFCS, foods high in fructose, artificial sweeteners
Previous treatments: Fecal transplantation (worked), Prednisone (stopped working), Colazal (stopped working), Asacol (stopped working)


foxy1
New Member


Date Joined Mar 2009
Total Posts : 1
   Posted 3/18/2009 2:07 PM (GMT -6)   
I would tell the doctor you are unhappy with him, be honest, but firm. Its your life and you need to know. It sounds like the start of a flare up and you need to act quickly to get it under control. It can sometimes start gradually or quickly, eitherway you need to get it sorted out.

Diagnosed with UC in 07
Recovering from a recent flare
10mg Prednisolone
Pred Foam Enemas
Fresubin Energy Drinks
Folic Acid
4g Pentasa

Ouchie2
Regular Member


Date Joined Jul 2006
Total Posts : 330
   Posted 3/18/2009 5:09 PM (GMT -6)   
I hope you can sort this issue out ...UC is something that may be with you for years to come and the way I look at it is that you want a doctor you can trust to work through things with openly and honestly....I'm having major problems right now and its great knowing my doctor and specialist are on my side.....
HELLO FROM NEW ZEALAND

38 year old female
UC - Diagnosed 2006
HLA-B27 Gene
Iritis 2008
Asacol
Mercaptopurine (6MP)
Doxycycline


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 3/18/2009 8:22 PM (GMT -6)   
I don't usually call my doc until things are "bad" for at least three days. Bad to me is a drastic increase in the number of bms - say from my usual 2-ish to 6 or more - where I am definitely seeing blood or red mucous, and where I am having cramping and/or rectal pain.

It takes some time to learn how your body reacts. I know when I was first dx'd I called my doctor about everything! I now know that a couple of times when I thought things had gotten worse was just because I ate too much the day before or got too tired. But you can't know that at first.

Rectal meds are a definite plus! Yes, they can be intimidating, but they can really speed up your healing or keep you out of a flare. I would suggest reading through old posts to see how people have responded to questions on rectal meds - they should be your first line of defense and used before resorting to prednisone.

Best of luck!
Pan-colitis and GERD diagnosed May 2003
Osteopenia (hip and spine) diagnosed Feb 2006
Status:  Remission???
Asacol 12 per day,  Azathioprine 50mg, Aciphex, Effexor XR, Forvia, Fibercon, and Culturelle
Remicade: 1st infusion 06/17/08:  Next infusion: April 1
Last Prednisone dose:  7/15/08
 
Co-Moderator UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


shortstuff1
Regular Member


Date Joined Feb 2009
Total Posts : 80
   Posted 3/20/2009 9:17 PM (GMT -6)   
Thanks so much for all the advice! My nurse called back yesterday (2 1/2 days later) and said that she was going to call me in a prescription for the steroid enemas and had me go to my GP to get blood work done. Something that was quite impressive for me was that my doctor noticed my name on the chart yesterday and that I was having blood work done and called me today to ask me about it. I explained to her that I have UC and that I am probably in a flare-up. Long story short, (I know, too late!) she heard my concerns of not getting answers and doc's not being very responsive and recommended a different G-doc for me. She called and set the appt to get me in asap. I know not to expect this out of any other doctors but it was sure nice to know that some doctors really do care. So, I'm going to the new doctor soon and going to probably wait before I do the steroids. I'm going to try to be good (fingers crossed) next week since I'm off work for a week for vaca. A cocktail (or few) would sure be nice when on vacation but I'm gonna do what I have to do to stay healthy. Hopefully I can get the R&R I need and avoid flaring any more. I really don't want to do another month of steroids.... I'm just losing my moon face smilewinkgrin
29 yr old recently diagnosed with UC in Nov 08. Taking Asacol 3 times daily and Steriod enemas 2 times daily. no children, very active;


happydays
Regular Member


Date Joined Sep 2007
Total Posts : 69
   Posted 3/20/2009 10:26 PM (GMT -6)   
Enjoy ur vacation!!! Try not to stress!!!
Mild case of UC~04   Left Side Colitis~ 05-06  Pancolitis~ 07
 
6-mp 125mg ~ 2 pill a day ~ Lialda ~ 4 pills a day ~ Librax 5-2.5mg~3 times a day ~ Lexapro 20mg ~ 1 a day ~ Zegerid ~ 1 a day ~ Birthcontrol ~ 1 a day ~ Humira (started 3-13) ~ canasa
 
 
 


Kobrocki
New Member


Date Joined Nov 2008
Total Posts : 17
   Posted 3/20/2009 10:59 PM (GMT -6)   
Hey!! I hope you get to feeling better, I am in the same boat as you.. Not sure if im on the verge of a flare or not.. I do what I can to avoid causing complications, but if its comming than its comming!! I definetly dont want to get onto those darn steriods!I had to get my license renewed while on prednisone so my lovely fat face picture haunts me whenever I see it!! best of luck to ya!! Enjoy your vacation!

btw, how'd you go a year ignoring symptoms? I went a month and ended up in the hospital just shy of needing a blood transfusion! Never experienced anything worse than being anemic and dehydrated!
Life is not measured by the amount of breaths we take, but by the moments that take our breath away.


Iflyfish
Regular Member


Date Joined Mar 2009
Total Posts : 45
   Posted 3/21/2009 6:49 AM (GMT -6)   
Hi, I'm new on the forum. I am in total agreement with searching for a new GI Doc - if you've landed with one who seems to care little, or doesn't have any genuine objectives to helping you recover quickly from flair-ups - keep shopping GI Docs. I lived near a Cleveland Clinic when I was first diagnosed with UC in '98.
Great outfit - but a 'teaching' hospital - I went through about 3 Docs in 3 years...got to the point I was telling them what treatment I was on, reminding them what we talked about last, and when I needed bloodwork, etc. My wifes Gyn recommended a local Board Certified GI with a great reputation who I was not familiar with - 4 years later, I still could not be happier. If I can't see him, his nursing and doctors assistants are all pros and not much turn-over...all seem to stay and are all genuinely concerned with my case. If I have a question, I generally get a call back in a few hours, also, the suggestion was made to me (can't remember where i read or heard it ) to go with a GI Doc who is also a Board Certified surgeon. I think a good idea, in case one needs surgery later.
Finally, a suggestion for a product that flys below the radar - but helps with the mess of UC. As a Bathroom remodeler and Designer, my wife goes to the Nat. trade shows. Check out the 'travel washlet' at www.totousa.com. "The portable washlet allows you to carry along the innovative technology of TOTO's washlet seats. From the office to your travels. Enjoy the luxury of your warm water cleansing at a push of a button. Just fill the water reservoir and extend the wand. Two different washing modes - regular and soft - ".
A compact and easily carryied devise that you fill with warm water in any bathroom and has a spray nozzel that puts out water similar to a bidet. I've used it for 7 years now - at home and when I travel - especially if i have a flair-up, it's a life saver when you are going 15 times a day!

shortstuff1
Regular Member


Date Joined Feb 2009
Total Posts : 80
   Posted 3/21/2009 7:26 AM (GMT -6)   
Thanks again Guys and Gals! I truly do appreciate the advice and I will take it all with me to my new doc!! Iflyfish, I will check out your Toto's washlet seats!!

Kobrocki, to answer your question, I didn't go to the doctor because I thought it was hemmoroids. I have always had problems with constipation (I could go up to 2 weeks without going to the bathroom). So for about a year I would go here and there and have alot of blood and mucus. I just figured the blood was from me being constipated all the time and then finally going to the bathroom..... because believe me, when I went to the bathroom at these points, I went. I could lose up to 10 lbs and I weigh about 115 regularly so you can use your imagination here! I have two nurses in my family, one was a heart nurse (sister) and one is a labor and delivery nurse (aunt). We all kind of thought it might be hemmoroids but when I told my sister how long it had been going on, she insisted that I make an appt... she actually made one with me because she was being kind of hypocrytical and having problems and not going either. We both had one on the same day so doing the prep work for the colonoscopy was kind of funny, she stayed the night with me and then we were running in and out of the room in mid-sentence to head for the bathrooms!

For about 9 months, I was constipated with blood and mucus and really tired all the time... then the last 3 months it turned to bloody diarreah and mucus, up to 10 times a day. I knew it had to be more than just hemmoroids at that pt. So the horrible symptoms of bloody diarreah were interfering with my work because I travel 5 days a week and presentations in front of big crowds alot. I'm very lucky (according to my doctor) that I didn't go to the hospital... though my white blood count showed a huge amount of blood and infection. I won't wait on those symptoms again! I'm now semi-educated on the bowels... LOL
29 yr old recently diagnosed with UC in Nov 08. Taking Asacol 3 times daily and Steriod enemas 2 times daily. no children, very active;


Iflyfish
Regular Member


Date Joined Mar 2009
Total Posts : 45
   Posted 3/21/2009 7:39 AM (GMT -6)   
SS1;
It's the TOTO 'portable washlet' you want to check out. the seats are amazing but expensive for most. The portable washlet, about $100. or less. You will thank me - as I thank my wife for discovering the product.
Wishing you all the best.
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