Can anyone relate to me? :(

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Sunshineonmyface~
Regular Member


Date Joined Sep 2008
Total Posts : 202
   Posted 5/31/2009 9:14 PM (GMT -6)   
Hi again.  I got diagnosed with this in August. I am on 3 lialda a day.  I started having some blood the beginning of May, then nothing for 2 weeks, and now 7 days of it. 
 
I feel very discouraged.  I haven't had a long remission. I had 3 months, then a week of bleeding in December, Then 2 months good, then more bleeding, 2 months good,  and more bleeding. This month is the longest the bleeding has been since on medicine, plus I am having more cramps.
 
I know that some of you suffer so much more. I just feel so discouraged though. I am scared too, because this is on 3 lialda, I can't go down to 2.
 
Just checking to see if there is anyone like me here.

mbx5
Regular Member


Date Joined Sep 2007
Total Posts : 365
   Posted 5/31/2009 9:27 PM (GMT -6)   
Seems like there should be something in addition to the Lialda...Lialda is basically Asacol in a more convenient form... Asacol / Lialda by itself is a maintenance drug. If you are bleeding you should have some bigger guns working with you such as Pred / Immuran / etc... Most people hate pred, but it could possibly bring you out of a major flare, then you taper off and go back to the maintenance drugs...

You should schedule an appointment with your GI - tell him/her about your bleeding and cramps, and see what they say.
Stats:35 yr old male. UC for 15 years.
location:North Western PA
DX: Left sided UC, most recent scope 5/20/09 UPMC Pittsburgh Presbeterian
Medications:20mg pred (as of 4/27/09), 12x pills Asacol per day, 100mg Imuran per day, 1mg Atavan per day (anxiety) when needed, 20mg paxil per day, Super-omega fish oil pills - 1x per day, Flax oil pills - 1x am, 1x pm, Culturelle probiotics - 2x am, 1x pm, Vitamin B-12 injections weekly.
Surgeries: Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland (and I am still more afraid of my UC!!)

"I poop in the woods because I can"


AMK77
Veteran Member


Date Joined Mar 2008
Total Posts : 678
   Posted 5/31/2009 9:30 PM (GMT -6)   
Are you taking fish oil and probiotics as well? That might help.
32 yr old female
Mild Pancolitis
I've had UC since 2000 but was in remission for most of those 8 years med free
Cannot tolerate mesalamine - starting 6mp soon?


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 5/31/2009 9:31 PM (GMT -6)   
Could go on rectal meds and see if it helps. We can all relate to you. smilewinkgrin
Proctitis DX 1999, Pancolitis DX 2008
Golimumab study (100mg every 4 weeks)
L-Glutamine 5000 mg + 600 mg pyridoxal alpha-ketoglutarate
Probiotis/VitD3 5000IU+Ca/1000mg DHA


Sunshineonmyface~
Regular Member


Date Joined Sep 2008
Total Posts : 202
   Posted 5/31/2009 9:40 PM (GMT -6)   
I take canasa as well. I don't think I will ever use prednisone again unless it's to save my life, literally.

hew
New Member


Date Joined May 2009
Total Posts : 2
   Posted 5/31/2009 10:10 PM (GMT -6)   
Sunshineonmyface~ I know just where you are coming from I was diagnosed December of 2008 and have not had a "reasonable" period of remission since then. I was on Lialda and using Canasa every night without any results. My bleeding would go down but I would have the same symptoms that us UC sufferers know and love! I was recently switched to Asacol and I use a Mesalamine enema when my bleeding gets real bad. I was on Prednisone for 3 months and would like to avoid ever being on it again. I take Probiotics, Fish Oil supplements and try to avoid gluten and dairy as much as possible. I am starting to feel better but healing takes time and rest is sometimes the best thing. Best of luck.

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 5/31/2009 11:04 PM (GMT -6)   
Maybe you should try a mesalamine enema instead of the suppository. Or you could use an enema in addition to the suppository (enema in the PM, suppository in the AM).
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa every other night, Culturelle probiotic, and Zoloft (25 mg).


quincy
Elite Member


Date Joined May 2003
Total Posts : 30677
   Posted 6/1/2009 3:08 AM (GMT -6)   
How often are you doing the Canasa?

I think you need the enemas which are a higher dosage of med and will go higher than just the rectum.

You could use the Canasa more often....

Fibre supplements can help bulk the stool.

q
*Heather* Status: mild flare enemas tapered to every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 x2 daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16422
   Posted 6/1/2009 9:48 AM (GMT -6)   
Yes, I think we all relate. I have been having looser BMs since I reduced my dose of Asacol to 6 a day. I am going to have to increase back up to 9 and hope for the best. I was doing so well but I am sure this is not a good sign. I hope you can find a good balance so you feel better.
Diagnosed with mild proctitis in March 2007: Treated with Canasa (as needed)
December 08: Began treating with Asacol 400mg (9/day) + Canasa 2x/day - Anemic
May 09: Off Canasa, taking Asacol (9/day)
Back on Canasa every other night + Asacol (9/day) + Probiotics + Iron
Reducing to 6 Asacol/day + Canasa at night + Probiotics + Iron - So far so good!!!
 


janettzi
Regular Member


Date Joined Jul 2009
Total Posts : 23
   Posted 7/7/2009 6:11 PM (GMT -6)   
Hi Sunshineonmyface,

It sounds like we are some of the newbies here in the forum, experiencing this stuff for the first time, and I definitely relate to your concerns.
I was also diagnosed last July. At that point--i now realize-- it was very mild disease, mostly in my upper rectum, though my scope showed it WAS present, on a cellular level, throughout my colon. Luckily I nipped it in the bud because --- oddly enough--- my 72 yr old mother had been diagnosed just a month or two before me.

When I was unable to come off the Asacol without my problems returning, in late september, I realized that I was going to be on meds permanently, which was really tough to hear. I have gone through a lot of denial with this whole thing, and am convinced that if I just find the right combination, ill be able to cure it. --I hope so-- Ive been trying. I became 100% dairy free (and i mean NO dairy products, not even in cakes, processed food, etc), and that helped significantly. It seems like you have also done this. After various attempts, hemming and hawing, and going back to it, I finally left GLUTEN behind. Ive been 100% gluten free since march, and no longer have any bloating (i used to live my life bloated). I also avoid all processed foods, preservatives, colorings, msg, etc. This also has helped. I can also say that I have had to cut out alcohol 100%. I kept trying to have 1 or 2 drinks every so often, but that inevitably brought back the bleeding. (FORGET about caffeine, or other stimulants. I think that played a role in the development of my disease)
 
After a few months of really disciplined eating, I was down to 1 (watery, diahrrea like) bm every morning. I still wasnt happy, I mean i wanted to have a "normal" bm, but it WAS regular, there was NO mucous and No blood.
 
I am currently in my worst state yet. I think its been my first real taste of the disease--13 bms, endless blood, and inflammation so bad I cant bend or stand too long or sit up  in a chair. BUT, I think I can attribute it to several triggers:
1) I tried probiotics (was having lots of yeast infections)-- and this gave me 2 weeks of diahrrea, which I kept ignoring, thinking I was adjusting.
2) I missed a day or two of meds, and felt fine, so decided to start tapering my Lialda on my own ===DONT DO THIS
3) Strenuous international travel--very stressful, complete change of diet--sudden increase of fiber (god i love rice and beans!!!)
4) more strenuous travel home with a head cold (Oh, did I mention a few alcoholic drinks in Brazil---how could i resist??)
5) followed right up by a 7 day course of flagyl for bacterial vaginitis (could this be related to the probiotics??? i dont know man, but my vagina flora is wack, just like my gut, im sure) ---OMG BIG MISTAKE!!!!
 
I just started prednisone (enemas werent helping) and I seem to be having immediate positive results.
AS soon as I get healthy again, I will be super conscious of any potential triggers, and make sure I dont let them add up and accumulate....
Hopefully that will achieve remission and keep me there.
 
I dont know if my long post is worth anything, but I do feel your frustration and can relate to your anxieties.
Best wishes for health,
StellaEstrela
 
 
  

Post Edited (gonnaworkthruthis) : 7/7/2009 5:34:18 PM (GMT-6)


Sunshineonmyface~
Regular Member


Date Joined Sep 2008
Total Posts : 202
   Posted 7/7/2009 6:58 PM (GMT -6)   
I can't imagine how the enemas will work... I mean I have used them for scopes, but they brought on the worst bleeding ever (ie:insertion)

When I go up to 4 lialda I start losing tons of hair.

I am trying not to eat sugar, carbs, or much else. I don't drink. I got frustrated a few weeks ago and rebelled a bit and ate some breaded chicken, and a hot dog over those few days, and 1/4 a beer (my anniversary week away). Started bleeding worse than ever.

Right now I am on the steroid suppository 2x a day, canasa at night, and 3 lialda. 2 days no blood.

But I do have 2 cups of coffee a day. All I eat really is blueberries, fish, soup, and gluten free crackers. And organic dark chocolate sometimes. So it will bum me out to cut my coffee out too.

quincy
Elite Member


Date Joined May 2003
Total Posts : 30677
   Posted 7/8/2009 12:12 AM (GMT -6)   
holy crap...chocolate or coffee won't cause a flare.




The enemas are retention medication..you insert them at bedtime and retain them overnight. It takes a bit of getting used to, but after the 20 years of using them nightly for flares and then tapering to a maintenance dosage...I will tell you with absolute certainty that if you can use them...they will be your very best friend.

They work, they're more medication and cover up to and into the sigmoid..4g (4000mg) or you can start with the 2g (2000mg) dosage...Rowasa if you're in the US.

Start adding more basic foods into your diet. Can you eat eggs or more protein?

Coffee will increase the activity in your digestive tract, but whatever. You only drink 2 cups a day, definitely no biggie, and I'll bet you look forward to it. Unless it makes you sick to drink coffee, why worry about it. I have anywhere from 4 - 6 cups a day...on occasion more, but if I'm flaring, I'll definitely cut back if it nauseates me.

I don't think you're eating enough, especially since you've been doing so well.

Yes, I still feel bummed out when I start to flare, but after starting the enemas nightly again, I'm so much better after even a week.

Consider the enemas....very soon.

quincy
*Heather* Status: maintenance Asacol 6 daily + Salofalk enemas every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


Liza D
Regular Member


Date Joined Apr 2009
Total Posts : 166
   Posted 7/8/2009 12:49 AM (GMT -6)   
I was really discouraged when I was on 4 lialda a day- the once daily med my inflamed butt! I had so many different remission/flare days. Honestly, 7 days of bleeding would be a not-so-bad flare. I would usually have to go on Prednisone when the blood would be too much to deal with or if I lost like 15 pounds. If you haven't had Prednisone yet you will probably react to it right a way- It stops the bleeding so fast and you might not have to take it for long at all. But you don't want to stay on it!

Good luck and talk to your doctor. You don't want to wait too long because then you can for sure expect a hospital visit! And you don't want that...
UC (Pancolitis... 90%!) December 2001
Arthritis (2003)
Upper GI Ulcer (2006)
Osteopenia (2008)
Depression/Anxiety (2002)
J-Pouch May 2009

Check out my blog: shlookshlies.blogspot.com/


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 7/8/2009 9:41 AM (GMT -6)   

Noting my experience with enemas - I have tried Rowasa and hydrocodone and Proctofoam.  I am now using Cortifoam which is in a canister - you shake, fill up applicator and insert - very easy - and easy to retain.  My new gastro doc with 30 years experience prescribed it followed by Anusol suppository to cover the very end.  He recommended three times a day to start.  I have a problem doing twice - but doing my best to do it twice.  I have been using the suppositories three times a day almost every day as you can keep those in and work around the house, etc. Slowly my bleeding is stopping - I did not see any today yet!

 It is not fun - but neither is UC!

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008   
Cannot tolerate mesalamines.  New specialist (June) - Cortifoam and Anusol three times a day for now.  Hope it works!
 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 7/8/2009 11:11 AM (GMT -6)   
Coffee is pretty irritating, unfortunately. Maybe just try drinking tea for a week or so and see if it makes a difference. You can do it, for just a little while! The skins on blueberries (or any other fruit skin) might also give you a problem, they did for me when I was flaring. I also bled when I didn't eat enough, so I agree that might be part of the problem!

Anyway, it can take years to figure out the best way to manage your gut.
And know that most of the medications that help are pretty mild, and just different forms of anti-inflammatory (like aspirin). I learned to not worry about bleeding, and turned to prednisone only when it was giving me pain and urgency. Better living though chemistry!

It's OK to feel sorry for yourself once in a while.
Then be proud that you are strong enough to deal with it.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol maintenance for 20+ years; used prednisone & Rowasa for flares.  Probiotics (Ultimate Flora, 50 billion), salmon oil (omega-3) when I can remember. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet.
Bad flare in March, used prednisone. Humira denied, started Remicade 4/12 and doing great~ learning what normal is~ wow


Sunshineonmyface~
Regular Member


Date Joined Sep 2008
Total Posts : 202
   Posted 7/8/2009 12:18 PM (GMT -6)   
Thanks for all of your encouragement. One thing that makes this so hard is that there is no one to talk with. I have a lot of "is this normal" questions. The blood freaks me out, and it's a guarrantee to ruin my day when I see it because I am scared to go on any more medicine. But if I knew it was ok to live with then I would be more relaxed.

saposs
Regular Member


Date Joined Nov 2008
Total Posts : 339
   Posted 7/8/2009 3:11 PM (GMT -6)   
sunshine...i am exactly in the same position as you are. i am tired, want to have a long remission but till now, despite taking all medication, i have had only 2 remissions..first lasted 2 months and then second lasted 1 month.... i went into these short remission only after i increased medicine or introduced a new medicine.... right now in same boat as you are - lialda + canasa... :-D
UC forum : Dx Jan'2009: Canasa suppositories 1000 nightly - worked for 2 months then re-flare
13 may: canasa 1000 X2 daily for 2 weeks; 30May: LialdaX2 started on 30th may.
Symptoms: Mucus, blood, constipated (not always), Lots Gas
Also started Probiotic from 23 Mar & fresh Turmeric root from 25 March'09- stopped both on 10th May
Thyroid Forum: Dx in Dec'08, levothyroxine from 50mcg to 75 mcg in June'09 :-(


Sunshineonmyface~
Regular Member


Date Joined Sep 2008
Total Posts : 202
   Posted 7/8/2009 5:05 PM (GMT -6)   
does your hair fall out on the lialda? When I go to 4 my hair starts falling out like crazy, but I can tolerate 3 just fine. weird!
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