Unpredictable..good days and bad days???!

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onebumgut
Regular Member


Date Joined Jul 2005
Total Posts : 201
   Posted 2/2/2009 7:18 PM (GMT -6)   
Ive been dealing with UC for 15 years. I have a fairly mild case. And have been flare free for about 2 years. Until last Sunday. (Luckily for me in the Las Vegas airport on my way home to Minneapolis..flight went fine.)

But with all of my years and experience with this disease, sometime it baffles me.

One day, I feel great. No poops. No blood.
Next day, I feel a little crappy. Somewhat formed poops. A little blood.
One day, I feel great. No poops. No blood.
Today, I feel good in the morning. Solid poops. No blood. Afternoon, D running out of me. No blood. Nauseous.

I was on some heavy duty antibiotics after a diagnosis of walking phenmonia earlier in Jan., and i think the antibiotics wiped me out. Im hoping this is just a small flare. Im doing everything that I can right now. I really dont want to go on prednisone.

Any thoughts would be helpful.
Thanks.
Michelle

4-8 Pentasa /day
1 Fish Oil tablet
1 Probiotic
1 Multi-Vitaman
1 Canasa Sup. / day (sometimes 2)
UC - diagnosed in 1993
Pentasa - 4 - 500mgs /day
Probiotics
Accupuncture with herbal supplements
Canasa when needed


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 2/2/2009 9:37 PM (GMT -6)   
I have the same thing but with a twist...I always feel fine when i wake up but the major determining factor for me is what happens after my BM...most days I'm ok but others especially if I have to go alot or more than once in a ten minute period I'll get bad pain and spasms that can last all day.

I have also had the symptoms above with bleeding (stripped on the stool) and that occurs when I'm flarring just a bit and have fallen out of remission, then I know it's time to increase the rectal meds.

Hope this helps
Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4/2)
Corti Foam p.m. 5X per week and canasa every other day
Natural anti fungal, anti inflammation supplements and Probiotics.
Bowel Soother and IntestiNew, Fish Oil, Calcium, Multi Vitamin and Melatonin
Eliminated Fructose and Corn Syrup
Reduced sugar in my diet by at least 70%
Reduced wheat products by 70% 
Could never tolerate artificial sweetners
I excersice daily (unless like now : (  I've lost too much weight)
Did I happen to mention I HATE this disease!!!
 
*Recent Changes In Blue*

Post Edited (bbc) : 2/2/2009 9:23:45 PM (GMT-7)


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 2/3/2009 7:27 AM (GMT -6)   
That sounds like my whole Uc history excluding flares of course. I think that is just Uc being itself. How often do you use rectal meds? Have you ever tried the enemas? Where is your Uc in your colon? Suppositories only help the rectum so if you have any inflammation higher up, this will go untreated because sometimes the oral meds don't go that far down. So there can be an in between area that is not being treated.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-worked great!, OA in my fingers -Celebrex and Tylonel Arthritis
To help Healingwell - click here: DONATE
 
 
 
 

 
 


onebumgut
Regular Member


Date Joined Jul 2005
Total Posts : 201
   Posted 2/3/2009 8:25 AM (GMT -6)   
I only use the rectal meds really when Im flaring or have a day or 2 with a smidgen of blood. Usually one suppository when I go to bed, but sometimes I'll do another in the morning. For years, I've tried the enemas and they have always seemed to make things worse and make me feel really yucky. My colitis has been all over the place over the years. I was first diagnosed with proctitis in 93. Then I had a super bad flare in 2000, which my GI called it pancolitis. Now for the last 7 years..with 2 colonoscopies, the docs have just said that its proctitis again. And than higher up looked completely healed and normal.

In 2000 when i had my bad flare, I switched from sulfasalazine to Azacol. The Azacol did nothing and I've been on Pentasa for 8 years. I'll have a little flare here or there, but it usually doesnt last more than a month or so. I feel I've been somewhat lucky with the disease, but that doesnt mean much when one is right smack in the middle of a flare. You almost forget how you felt so good for (me, 2 years), now all I feel is worry.

But these days of feeling perfectly great and then a next day of feeling yuck can really confuse and frustrate a person. I've got a 6 and 2 year old, so I dont have a lot of time to feel gross. I guess for me..if I can call it lucky...I was laid off in Nov. Havent found anything, but have been working freelance (Im a designer) from home. SO...I dont have to worry about going to a job in the morning and rushing to the bathroom.
UC - diagnosed in 1993
Pentasa - 4 - 500mgs /day
Probiotics
Accupuncture with herbal supplements
Canasa when needed


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 2/3/2009 9:03 AM (GMT -6)   
I know how it is to not have TIME to feel yucky with young kids. My children are the same age apart as yours - 4 years. When they were little it was a major challenge to care for them and try to remain upbeat and on the go for them. So I can definately relate. You're lucky to be able to work from home. I always wanted to do that but not too many firms want a payroll accountant that works from home! lol
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-worked great!, OA in my fingers -Celebrex and Tylonel Arthritis
To help Healingwell - click here: DONATE
 
 
 
 

 
 


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 2/3/2009 5:14 PM (GMT -6)   
Could you have an intestinal virus? I think we IBDers tend to forget we can still get stomach bugs on top of our usual stuff.

I'd recommend increasing your probiotic since you recently had a course of antibiotics.
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine. Probiotics, l-glutamine, vitamin D and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Mostly grain-free and dairy-free diet. Long-term remission with only minor blips.
 
 


onebumgut
Regular Member


Date Joined Jul 2005
Total Posts : 201
   Posted 2/3/2009 7:19 PM (GMT -6)   
That's funny you mention the stomach bug. I definitely thought of that. Plus, since I was on such a heavy dose of antibiotics, I thought that that might have just upset things rather than me having a full on flare.

Yep. 2 young ones are tough to handle when one feels gross. Im 38 too..so not a spring chicken myself. I always think being tired all of the time is more of my age than anything. ha ha. :)

Thanks for the advise. i'm definitely going to up the probiotics. It couldnt hurt....Of course today...nada. NO poops. No blood. And I feel good.

Its SO nice to chat to others who can relate!
Thanks!
Michelle
UC - diagnosed in 1993
Pentasa - 4 - 500mgs /day
Probiotics
Accupuncture with herbal supplements
Canasa when needed


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16285
   Posted 2/3/2009 8:20 PM (GMT -6)   
I have the problem with inconsistency too. Once day I am great, going to the bathroom a couple times and feeling ok. Other days, I am completely drained of energy and making 10 trips to the toilet, dealing with constipation, bloating, blood, mucus... I guess i'd rather deal with the inconsistency than the consistent bad days. I wish I could tell the good days so I could go enjoy myself instead of worrying about the next toilet trip. The problem for me is the urgency. It is always urgent, even on a good day. If I have to go, I have to go.

Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December but had symptoms months ago - Treating with Asacol (feel hopeless)


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 2/3/2009 8:59 PM (GMT -6)   
What you're all describing is just the nature of the beast of having IBD, this disease seems to be designed to literally keep us on our toes at all times, never get too comfortable and turn you into a psychopath at some point and a poo obsessor.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 2/4/2009 12:08 PM (GMT -6)   
pb4 said...
What you're all describing is just the nature of the beast of having IBD, this disease seems to be designed to literally keep us on our toes at all times, never get too comfortable and turn you into a psychopath at some point and a poo obsessor.

:)

I dream of the day that I can stop looking in the toilet to always check my poo redface shakehead rolleyes
Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4/2)
Corti Foam p.m. 5X per week and canasa every other day
Natural anti fungal, anti inflammation supplements and Probiotics.
Bowel Soother and IntestiNew, Fish Oil, Calcium, Multi Vitamin and Melatonin
Eliminated Fructose and Corn Syrup
Reduced sugar in my diet by at least 70%
Reduced wheat products by 70% 
Could never tolerate artificial sweetners
I excersice daily (unless like now : (  I've lost too much weight)
Did I happen to mention I HATE this disease!!!
 
*Recent Changes In Blue*


Joylu
Regular Member


Date Joined Jan 2008
Total Posts : 362
   Posted 2/4/2009 12:18 PM (GMT -6)   
Sicklygirl, the urgency is my biggest concern also.
Sometimes a bathroom 100 feet awat is too far.

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5965
   Posted 2/4/2009 2:58 PM (GMT -6)   
     bbc...lol....I am in remission and STILL check my poo.  I don't think we will ever have the luxury of NOT checking it.  My husband thinks I am nuts, always looking in the toilet after each bowel movement.  He said "what in the world you looking at."  I even talk to the poo...call it Mr. Hanky after the turd in South Park.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


onebumgut
Regular Member


Date Joined Jul 2005
Total Posts : 201
   Posted 2/4/2009 5:20 PM (GMT -6)   
Im laughing so hard at the "having to look at the poo" posts! I SO do that to..even in remission. Check the toilet paper for the fainted spot of blood..I hate that it has to be that way.
I catch myself looking at my daughters poo if I get the chance. Making sure it looks "normal".

Ugency is also always an issue. Of course as many have posted in the past. I know (and we all Im sure know) where every bathroom is where ever we go. And if we dont, we find out as quick as possible. My husband has become so accustomed to it, that he'll sometime scout out the bathroom before I do. Now that's love..huh?! :)
UC - diagnosed in 1993
Pentasa - 4 - 500mgs /day
Probiotics
Accupuncture with herbal supplements
Canasa when needed


MustLoveDogs
Regular Member


Date Joined Jan 2009
Total Posts : 394
   Posted 2/4/2009 6:34 PM (GMT -6)   
Hi
Sorry to hear you are in a flare. I know what you mean about the unpredictability of this darn disease! I have stopped making plans because I never know how my daughter is going to feel. Thankfully she doesn't have the urgency issues...I cannot imagine how horrible that must be for you
Gwen
 
10 yr old daughter diagnosed with "UC-like Crohn's" 12/08
currently on 2400 mg Asacol and 50 mg 6-MP

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