How is everyone doing? Seriously.

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princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
 		   Posted 6/1/2008 8:47 AM (GMT -6)   
I was just wondering how you all are and if/what challenges you are facing right now due to your UC or meds if you want to share.  :-)
 
 I have been on Humira almost 3 months, I have been doing better!  Less bms, much less bleeding, and more energy.  I have been having hair loss, shakes and nausea, and some headaches and leg pains, but I would rather be like this than how I was 3 months ago!  I wish you all the best of health.
Diagnosed with Left-sided UC in 1995 at age 15, Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Aloe Juice, Canasa, Enotcort, Colazol, Anamantle, Remicade, etc... had 1 inch deep rectal ulcer 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Clorazepate, Lomotil,  Tylenol pm, Lyrica started 1/17/08,  Humira started 4/4/08

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Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
 		   Posted 6/1/2008 10:48 AM (GMT -6)   
I'm not really facing many challenges with my Uc. Other then the norm such as horrible mornings. But now that I'm back on the steroid enemas I only go 1-2xs a day now and *happy dance* formed bms! :) Not to mention that horrible hemmie of mine. But that seems to be getting better. It didn't hurt as much when I used the enema last night. I just hate being on the steroid e's - when I start back on them, the side effects hit me almost instantly as opposed to building up over time. Guess my body has the memory of them or something.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis~Sacroiliitis-epidural injections
To help Healingwell - click here: DONATE
 
 
 
 

 
 

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jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
 		   Posted 6/1/2008 12:53 PM (GMT -6)   
I'm doing really well. No bleeding, mucus or pain. I go about three times a day, but soft and formed and no problems. No ulcers in my colon for the past year! If I weren't still dealing with some of the leftovers from steroids, I might forget once in a while that I even have UC.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.

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jano437
Veteran Member


Date Joined Jul 2005
Total Posts : 1614
 		   Posted 6/1/2008 1:16 PM (GMT -6)   
I am doing pretty good right now. I am in remission. I usually flare once a year in January, and get it in control in 3 months. The rest of the year i go into remission. That is my pattern. I could set my watch to it
Diagnosed July 2005 with Pancolitis
Asacol 4 tabs 3 times daily
Pro-Bio
Forvia
calcium
Diosmin(for leg and vein support)

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Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
 		   Posted 6/1/2008 3:56 PM (GMT -6)   

I'm doing ok too- going about 4-6 times a day, soft but formed, no D, sometimes a little blood. Mostly sleeping thru the night, up 1 or 2 times with just gas & mucous. Going for an infusion on Tuesday, it's the 6 week mark. I still get urgency but I can hold it just a little bit longer- I now have about 2 minutes to get to a toilet as opposed to 30 seconds! Plus it's not too often- I just went to a museum in Boston today, a 1 1/2-2 hour car trip both ways & had no problems whatsoever, so I guess all is well.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 
 

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expecting226
Regular Member


Date Joined Jul 2007
Total Posts : 402
 		   Posted 6/1/2008 9:49 PM (GMT -6)   
I am doing well, too! Still in remission -- 1-2 formed bowel movements per day, no pain, no mucus, no blood, no urgency.

Still a bit anemic from the pregnancy, but my iron levels are rising, so it looks like I will be able to avoid an infusion. The iron pills are working.

Aside from that, I am just sleep-deprived! My son still isn't sleeping through the night (gets up once or twice), and now that my maternity leave has ended, I am back to work full-time. It's a juggling act... my husband and I are exhausted. BUT... it is all worth it. We love this little guy so much.

So, all in all, I am doing very well! Very happy...
Wearing many hats: Mother, Wife, Daughter, Professional, Sister, Friend
 
Current Medications:
- Asacol (4 pills, 3x per day)
- Rowasa (1 enema daily, as needed)
- Folic Acid (1 mg, 1x per day)
- Calcium (600 mg, 2x per day)
- Multi-Vitamin (1x per day)

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ToughKicker
Regular Member


Date Joined Sep 2005
Total Posts : 218
 		   Posted 6/2/2008 10:24 AM (GMT -6)   
I'm doing good, I've been in remission for 2 yrs. now Only go to the bathroom usually once a day, sometimes 2 every other month. My checkup is next monday, so now I'm worried, thats only because of the lab work. It's more mental for me. After I see the GI, I can go back to having fun. Lab work scares me.
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love4cats
Regular Member


Date Joined May 2007
Total Posts : 458
 		   Posted 6/2/2008 10:33 AM (GMT -6)   
I am currently in remission, no urgency, blood, D, or mucous. One BM per day. I have only flared in spring and the last two I got back into remission within a month.
 
 
Dx:  UC Proctitis 2006 
Meds:  None so far. Garlic works to ease flares. My GI laughed when I told him and said it was just coincidence. 
Started Meds:  Apr 9 08 500mg 5ASA (salofalk) to ease flare, tapering, stopped. 
Diet:  Regular fresh garlic, Biobest yogurt daily, Omega 3 supplements, very limited junk food, carbs and processed food, low fat diet.  Lots of fresh fruit and veggies (limited potatoes). 
 Added: tumeric and probiotics.
 
 

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Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
 		   Posted 6/2/2008 10:48 AM (GMT -6)   
craptastic.

UC: flaring since 5/13 w/blood, mucous, D, not formed. 5 to 10 times a day. Taking steriod e's for two weeks, not much improvement, calling GI on Wed unless a miracle happens. If fail aza, then Remi, then surgery unless I could get approved for Humira.

Kidneys: If I don't reach remission by Oct, Neph says I prob have FSGS, which means kidney transplant.

Mentally: I am turning very bitter and angry. I need to seek help from a therapist.

Other than that awesome.
Beth, 32 ~ small flare - hoping caused by aspirin - hydrocortisone e's
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 5mg 1xday (tapered from 60 = ), Simvastatin 20mg 1xday, Diovan 160mg 2xday. Enalapril 20mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 

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bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
 		   Posted 6/2/2008 12:04 PM (GMT -6)   

mad  pretty crappy

I was in a mini-flare February--April. For the last month, I've been in a major flare that just seems to get worse no matter what medications or probiotics or natural remedies I try. I've been going to the bathroom about 10x/day, mostly in the morning through a couple hours after lunch. My stools have been loose and I've been having cramping almost daily. I was on Rifaximin for a week--it made things normal for one day, but the rest of the days were the worst I've had since before being diagnosed. I had to quit my job after a week b/c everything's just getting worse. My boss emailed me and told me that I should have stuck with it a bit longer. But I told her that if I couldn't even go grocery shopping yesterday for more than 15 mins. b/c I got light-headed and weak, then I probably shouldn't look after preschoolers for a few hours. I've been feeling light-headed and tired since I woke up today, even though I got 10 hours of sleep last night. I haven't been feeling this tired and weak since I needed my blood transfusions last year, but my blood labs were normal as of a couple weeks ago and I'm not pale like I was last year before I had my transfusions. I'm seeing my GI on Thursday to see what my options are since I refuse to take prednisone.

Sorry that this is one large blob of words and probably not very coherent.

 

Female, Age 19, Dx w/ UC August 2007
Seasonal allergies
9 Asacol/day, 1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis) 3 pills/day, 1 Florastor/day
1 DanActive/day

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kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
 		   Posted 6/2/2008 12:14 PM (GMT -6)   
The good news: My two year flare seems to have ended (scared to say remission but i think i'm there!) and remicade is to thank.

BUT....

Many know i have complained of nausea in the past. Well I'm more nauseas than ever. It's very debilitating. Without high doses of zofran I am throwing up every few hours. With zofran and other herbal remidies I can eat some and even have an hour or so of productivity until the neausea is again unbarable.

My GI has given up. He has done every test he can think of. I see him tomorow and am going to ask for the name of an ENT. The only other thing I can think of is an inner ear problem. We've ruled out food because i went without zofran for a few days and couldn't even hold water. No food and still bad.

Mentally: very depressed. My UC is finally better and I am still sick and doctors are giving me no hope. I'm so angry, so sad, so lonely from being stuck at home for two years. I just want my life back.
Kelly, 30

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, 150mg Imuran, no more pred after two years!!!!
Prontonix once daily for acid reflux, zofran twice daily for nausea
Remicade started 3/1/08...just had 3rd infusion

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Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5191
 		   Posted 6/2/2008 7:56 PM (GMT -6)   
Thanks for asking about us all, Princess Colon. Luckily I recovered from mini-flare last July-- caught it quickly. Also, knees I banged up in accidental fall 3 weeks ago are about 95% better. Have gastro check-up tomorrow. Did bloods with internist last month & results were good except that my vitamin D level dropped again; gastro probably won't like that. Colazal is helping me to retain remission, but it makes me shed lots of hair, aaaarrrg! No way around that ... Glad to read that you're making some progress & wish you all the best because you surely deserve it. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])
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dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
 		   Posted 6/2/2008 8:34 PM (GMT -6)   
Geez - with so many good feelings, I hate to be one of the few downers :(

I stared flaring March 17th. Spent a few days in the hospital in April. Finished my pred taper May 25. Now things are back to bad :( Doc gave me two options - pred again with a slower taper or Remi. I jumped on the Remi bandwagon. I've heard so many positive stories that I've decided to go for it. Previously I was anti-remi for me. But right now I want my life back and I'm willing to try it. Pred is just destroying me!

I'm so glad that so many are feeling so well!
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Flaring
 
Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
Last dose of pred: May 25
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate

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princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
 		   Posted 6/2/2008 10:14 PM (GMT -6)   
I am glad that so many are doing well too. And sorry to those who aren't, but isn't it good to be able to come here and tell people who truly understand? No "I am fine, how are you?" nonsense! I had violent D after posting this, I feel like I have to keep quiet or I jinx myself, it's weird. Take care everybody.
Diagnosed with Left-sided UC in 1995 at age 15, Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Aloe Juice, Canasa, Enotcort, Colazol, Anamantle, Remicade, etc... had 1 inch deep rectal ulcer 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Clorazepate, Lomotil,  Tylenol pm, Lyrica started 1/17/08,  Humira started 4/4/08

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Pitz
Regular Member


Date Joined Jul 2007
Total Posts : 84
 		   Posted 6/3/2008 8:49 AM (GMT -6)   
In a flare for the last month. No blood, but D 3-8 times a day. I've been on prednisone for a year-and-a-half and every time I taper to the low doses (5 or 2.5; sometimes 10), I go into a flare. I've got a call in to my GI. I WON'T increase the prednisone again myself as I want off of it! The last time I saw my GI he said he'd maybe try me on 6-MP again, but he's taken me off of that a couple times as it seems to lower my white count. And about four years ago it was lowered as it was becoming toxic to my liver. Maybe it's time to try remicade. I'm not at a point where I would consider surgery yet.
Ulcerative Pancolitis (dx'd 6/2002)
Pentasa (4gm/day)
Prednisone (currently alternating daily 5mg & 2.5mg)
Aranesp injection every week for anemia
6-MP (discontinued as it lowers my white count)
Immodium-AD (occasionally)
various meds for other conditions
 

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colitis-owns
Regular Member


Date Joined Jun 2008
Total Posts : 41
 		   Posted 6/3/2008 9:28 AM (GMT -6)   

I seem to have had a settled routine for the past year. Three times daily all formed and no blood for 10 months now.

I have the odd day of maybe going more but apart from that all is well. Nerves thing really  still bother me!! its the fear of getting ill again or fear of no public toilets.

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disco
Regular Member


Date Joined Jan 2008
Total Posts : 154
 		   Posted 6/3/2008 10:13 AM (GMT -6)   
I'm doing very good, have been in remission since Early March, getting my 3rd remicade infusion Friday (no side effects)
 
I am having a little trouble getting off pred.
 
I tried to drop from 10mg to zero  2 weeks ago and got really worn down, headaches etc. instantly
 
I am now down from 10mg to 5 mgs though, and going to try 5mg every other day next week.
Diagnosed in spring 2005 at age 28
Currently on 12 asacol pills a day + Entocort
40 MG Pred cycle stating 3/26
Remicade

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LightenUp
Regular Member


Date Joined Jun 2008
Total Posts : 20
 		   Posted 6/3/2008 10:24 AM (GMT -6)   
For the 8 or so years I've been dealing with UC, I haven't yet figured out what a remission feels like. I'm either on Pred, which minimizes the symptoms, or running to the bathroom. I don't know if I am in a constant flare because it is always there and, except for the pred, always seems extreme. So the words remission and flare don't have much meaning to me.
 
Just called my GI Friday; spent the past two months trying to taper to 7.5 mg of pred. Now having 5-6 bad days out of the week instead of 1-2 when I'm at 15mg. Counted 33 trips to the bathroom in one 24 hour period last week, which is what did it for me. Although my GI describes mu UC as moderate, I just can't seem to find any med. or probiotic that convincingly works.
Darryl, 58, Male, Dx w/UC in 2000
[Haven't yet experienced a remission]
Meds: (None seem to work so far, including Remicade)
> Colazol, 6/day
> Methotrexate, 1 shot/week
> Prednizone, tapered to 7.5mg March to May
now back to 20mg/day
Good news? Never have complications from any meds.

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Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
 		   Posted 6/3/2008 12:08 PM (GMT -6)   

I am so glad so many of you are feeling well. I hope everyone else starts to feel better soon.

Bratcat is feeling a bit better. I guess you could say that she is coming out of her flare. But this last one took a big toll on her. The prednisone side effects have been horrible. Missing so much school and work this spring has her scrambling to catch up before the end of the school year. The remicade is probably working but not as well as the doctor feels it should work. We think the prednisone is what is keeping/getting her in remission. Can't live on prednisone anymore.

We have been looking into surgery. She is scheduled for step 1 on June 27.  This is on our minds 24/7. It has become my obsession. She is looking forward to it (if she doesn't think too much about it). She doesn't want to deal with another school year like she had this year (2 flares, 16 weeks of missed school). Next year is her senior year. So we figure have the surgery right after school ends, have the summer to recuperate and adjust, and hopefully, have an uneventful, healthy, happy senior year where she doesn't have to drop out of so many things because of this disease.

--Mom of bratcat (17 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 4 pills/3Xday, 2 tabs 6-mp/1.5 tabs 6-mp every other day, 25 mg prednisone, Remicade
 
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone. 3/08-another flare!

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Birunji
Regular Member


Date Joined Sep 2007
Total Posts : 60
 		   Posted 6/3/2008 12:59 PM (GMT -6)   
Well, I'm back here after a few months which I guess means that I'm seeing a return of symptoms. In general though, I'm doing pretty well, and so glad to hear that many of you are as well. I'm sorry to hear that some of you are still suffering and hope you find some relief soon.

I took a course of Prednisone near the beginning of the year that seemed to quiet things down to point that I could nearly forget I had UC. However, I had to taper off all my meds in March because I quit my job, moved, and lost my insurance. Fortunately, the move resulted in a decrease in stress, so I think that helped keep things stable for a while. But I'm starting to feel a flare coming on...I hope I'm wrong. No blood yet, but some urgency and D once or twice a day. And last month I was all bloated and had to drink coffee to get things moving, though it was still all D. I've also been feeling unnaturally tired despite getting 8-10 hours of sleep each night and having some nausea too. All in all, not so bad, though I really need to find a way to get insurance in case things progress.
Erin
Dx with left-sided colitis 06/07.
Off all meds since 03/08 due to lack of insurance.
Previously took Asacol 400 mg x 9, one course of Prednisone (20 mg) for 6 weeks.

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cagio1
Regular Member


Date Joined Mar 2007
Total Posts : 56
 		   Posted 6/3/2008 5:43 PM (GMT -6)   
Was doing great.  I had a wonderful year until this last month.  From July of 2007 until a month ago I was in remission.  Enough of a remission that I made it through a year of teaching (until now) without any problems and I even went to Mazatlan Mexico for spring break and had a wonderful time. scool
But.... my pain in the a.. is back again.  I am a little upset but... I try to keep thinking about all the living I did this past year and hope I will get there again soon.  On pred again 50 mg to start.  Hope to see some result in the next week. eyes
I do get annoyed when I go to the GI or GP when they make the comment "FLARED ON 6-MP... OH THATS NOT GOOD".  Why do they have to be so down.  Maybe the meds. need to be tweeked a little.  What is so wrong with flaring after a year, while on 6 mP.  I was under alot of stress...  Change of season... things happen.  This is why I think alot of people don't come clean with their doctors.  They don't want to rain cloud anymore. confused
 
DX with (pan colitis) UC 9/02 while pregnant
meds:  Sulfasalazine 6 pills a day
Colazal - made me sicker (nausea, diarreha, etc)
Rowasa (when needed)
Boniva
Calcium
multivitamin
Iron (when issues appear)
Mild bronchial asthma too
Prednisone 30mg
6MP 50mg started beginning of July

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BumTum
Regular Member


Date Joined May 2006
Total Posts : 304
 		   Posted 6/3/2008 8:38 PM (GMT -6)   
After being diagnosed with severe pancolitis 2 years ago, I'm doing great on Asacol and a good probiotic. 
  • Pancolitis since 5/06 at age 50, IBS since childhood
  • Degenerative Disc Disease/Spinal Stenosis - L4 and L5
  • Prescribed: Asacol, Atenolol, Zoloft, Synthroid, Menest, Crestor 
  • Prescribed: Xanax & Hydrocodone as needed
  • OTC:  Probiotic 15-35, Multi Vitamin, B Complex, Turmeric, Fish Oil, Biotin
 
 
 

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lambkins
Veteran Member


Date Joined May 2008
Total Posts : 574
 		   Posted 6/4/2008 3:43 AM (GMT -6)   
I think the meds have started to kick in as no blood for 2days and semi formed bm but lower back and legs ache as well as hips and right knee eye drps also starting to make a differance as have Uveitis at moment to
BUT am feeling much better than i did so things are looking up.
  
  Diagnosed 22.5.08 with Lft sided U/L
  Meds Predfoam 20mg 2x day
  Mesalazine 400mg 2x day

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damo123
Veteran Member


Date Joined Jul 2007
Total Posts : 714
 		   Posted 6/4/2008 3:49 AM (GMT -6)   
I went into remission about August last year. However it was a tough 9 months with lots of IBS and GERD issues. In March I went off Asacol and discovered that most of my GERD and stomach issues were caused by this drug. I then tripled my probiotc dose and that cured the IBS. Right now I'm feeling brilliant, 1 BM a day, no meds, just three daily doses of 4 different probiotic strains.
 
The headaches, lack of energy, lack of appetite, brain fog all disappeared since I started probiotics as well.
 
I'm going nowhere near an IBD maintenance drug unless I flare very very badly.
 
Big thanks to all who helped me get to this stage from this site.
 
D
 
Med free for a bit as I needed a break from Asacol
 
Probiotics
 
"Whatever you do in life don't berate yourself too much nor contragulate yourself too much. Your choices are half chance. So are everybody elses'"
 
 
 
 
 
 
 

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munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
 		   Posted 6/4/2008 7:39 AM (GMT -6)   
I feel soooooo good, I've been in remission since January. I feel kind of guilty about how well I'm doing and then seeing so many that are suffering so badly. I was in the worst flare I ever had and it lasted 2 long years, there were days when I thought..........I just can't keep going on like this. Now things have been great. usually 2 bms a day, always in the morning. I truly wish that everybody could get into remission or at least have a period of time where the UC isn't controlling their lives at all times. I had a really strange dream lastnight. I dreamt that I was in some public place, lots of people around and I had to use the potty, really bad, and it's right in the middle of this big room that is full of people. I did my business and there was quite a bit of blood, then the darn potty wouldn't flush. I got up and everybody was either laughing or making comments about what I did in the potty. I was sooooo embarassed. Then I woke up and was so releived to realize that it was just a dream. Never had one like that before.
*******Donna*******
 
diagnosed with uc 27 years ago.  Enojoyed 20 year remission with just minor blips here and there (approximately 16 of those years without any meds)
 
In a flare for 2 very long years which Asacol didn't help at all.  Finally in remission again since Jan 2008, can't believe it..............
 
currently on Sulfasalazine 2 tabs 3x day. Folic acid, mesalamine enema 2 x a week. Omega 3, Probiotics, multi vitamin, calcium supplement, Biotin....
 

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