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Got2Believe
Regular Member


Date Joined Feb 2007
Total Posts : 436
   Posted 12/5/2008 2:37 PM (GMT -6)   
Would you all generally say since you first got UC you are the same? Worse? or Better?
 
I feel my UC has got to be better since I was diagnosed with severe pancolitis 3.5 years ago. Why? b/c I am currently flaring and without any prescriptions and I am not bleeding near enough as I used to, and some days I have formed stools. I could have never ever have imagined to take on a flare without prescriptions, that would have been impossible.
 
1) But when my UC started I only had bloody Diahrea.
2) Then 1 year later I took antibiotics and started to get watery bloody Diahrea and a little urgency and major pain
3) And now when I flare I get a flare I get watery D with blood and major urgency with very little to no pain.
 
I just wonder why my symptoms changed from my initial flare. I know those darn antibiotics had a major role. (I know I haven't updated my sig in awhile, but I will.)
 
                                                                                         
28/M/TX single parent of gorgeous 2.5yo girl (revised 10/3/08)
Severe Colitis (pancolitis) since January 9, 2005
currently:  Remission.
RX/day: none! Tapered off Prednisone 9/20/08. Lost job and insurance 10/2007 and stopped taking asacol and Imuran cold turkey
OTC: ensymes everyday, seldom use probiotics, vitamins & other natural treatments
Diet: SCD helps tremendously, but am not strictly on it.
Other: Prayer, food combos, good posture, chewing more, etc.


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 12/5/2008 2:53 PM (GMT -6)   
Definitely better.

I was desperately ill the first couple of years, then began to gradually get better. I've had some minor blips since then, but I've never been that sick since.
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Long-term remission with only minor blips.
 
 


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 12/5/2008 5:36 PM (GMT -6)   
Mine started as a minor flare. I maintained remission, or had ocassional minor flares, for the next 10 years. It was only towards the end of my 10th year that my symptoms went from remission to moderate flare and within weeks to a severe flare.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 12/5/2008 5:46 PM (GMT -6)   
     My last flare was my worse ever.  It lasted for seven months.  I was diagnosed in 1998 and hospitalized.  I remained symptom free for two years and then had a flare lasting one month, not severe.  Symptom free another two years before flaring in Oct of 2002.  Doctor put me on 6MP.  Next flare was in Sept of 2003, another in 2005 and then every year since.  In remission for a few months now and enjoying every minute of it.
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.


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 12/5/2008 6:51 PM (GMT -6)   
I can probably say that mine is worse. Sure the symptoms are more under control but it required heavy duty medication to get me that way. When I was first diagnosed, I was pretty sick with massive D and bleeding but once I started on medication - just an oral 5-ASA, it helped tremendously but over the years it seems my body either got accustomed to the meds or I became intolerant of them.
 @--->--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
To help Healingwell - click here: DONATE
 
 
 
 

 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30999
   Posted 12/6/2008 2:49 AM (GMT -6)   
Better from 15" to 2"as per my last c-scope. I use meds for treatment and taper for maintenance. 

I think you're playing with fire assuming yours has actually improved and will stay like that....inflammation happens in stages...and you're already experiencing ones we all had before we were actually diagnosed when the docs told us it's IBS.

respectfully,
quincy


*Heather* Status..Asacol 6 (3 twice daily); enemas every 5th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate)....1 each  @ bedtime
~various digestive enzymes as needed
~Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 12/6/2008 9:40 AM (GMT -6)   
I'd say mine is worse too- in the sense that yes, my symptoms are somewhat controlled currently, but I've had to resort to stronger & stronger meds to do that since diagnosis. Initially, before diagnosis, I was unable to leave the house until around noon, & even then it was a crap shoot (no pun intended) as to whether or not I'd have an accident! Now I'm pretty safe with allowing 2-3 hours in the AM to get the bathroom business out of the way, & I'm good for the day. Scope-wise, the inflammation has gone from mild to moderate proctitis to active disease with about 10" of inflammation. So even with the heavy-duty meds, the inflammation has grown, & now my colon is also filled with hundreds of pseudo-polyps. So yeah, definitely worse! Disease-wise....day to day wise, it's better. Or maybe just easier???

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 12/6/2008 11:51 AM (GMT -6)   
Worse. My first flare was controlled by just Asacol. My 2nd and current flare has landed me on Remicade less than one year after diagnosis and I was even scheduled for surgery. However, my scope only showed proctitis so I guess Remicade healed the rest and rectal meds helped w/ proctitis; maybe it's IBS or something, but I'm still not considering remission yet.
Female, Age 20
9 Asacol, Rowasa, 1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (5 infusions), 2.4 g Lialda, 1 Forvia, 6 Colazal/day, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement
 


beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 12/6/2008 3:39 PM (GMT -6)   
I'd have to say worse as well. I believe that I've had symptoms of UC for over 8 years, but was only officially diagnosed in a couple of years ago. The symptoms I had before were stabbing pains and blood in my bms. Then I got a c diff infection and my UC became a real problem. After the c diff was gone, I started getting D, the urgency, and more blood than I was comfortable with. My UC was under control during my first stint with Asacol, but since I stopped taking it, I entered a flare that has been mostly running rampant since July. It seems to me that every year my UC is getting a little worse, and this is backed up by the 3 colonoscopies I've had in the last two and a half years.
Brandon
 
36 y.o. male
Diagnosed w/ UC in May '06
Meds & supplements: Asacol, Florastor, VSL#3, Wellbutrin XL, Prozac, multi-vitamin, Allegra, Lialda, Colocort, Prednisone (2.5mg/day, back up to 7.5mg), flaxseed oil, L-glutamine, magnesium, and vit B-12.
 
Tried the spinach/sunflower diet.  Saw some relief in symptoms after 1 month, but symptoms returned with the taper off prednisone.
Next up - experimental and trial drugs.


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 12/6/2008 7:25 PM (GMT -6)   
I used to have terrible, cramping pain, so bad it made me feel like I might pass out on the toilet but then would subside. It can be like labor pain, I'm told. But now even when I'm flaring bad I don't have intolerable pain.
Otherwise I think I've always been in some stage of flare, with urgency and different amounts of blood and never completely "normal."
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 gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete$$ probiotic powder at first, now Forte pills. 
Doing much better, but still experience anxiety that interferes with activities. 
 


Vin
Regular Member


Date Joined Jan 2006
Total Posts : 312
   Posted 12/7/2008 12:55 PM (GMT -6)   
UC goes up and down. Theres many thnigs that can trigger flares. as time goes on, we tend to learn stay away from certain things such as things that produce anxiety, certain foods, antibiotics, things that cause to get sick such as colds/flus. That can certainly reduce the chances of getting a flare or the severity of it once you do get one. However, you will have the disease. At any point if your not on your game, or you get hammered wtih something outside of your control, you can flare just as severely, if not worse, than your initial flare. could be a really nasty stomach virus/flu, salmonella(my case), or who knows what. I was off meds for 2 years and doing great. All it took was one thing and i was hospitalized. I am finally coming out of the flare only over the past 2-3 weeks. It is a great risk to come off meds. Don't be fooled into thinking its going to be permanently better. I mean, you can try it..but don't be suprised if it comes back hard one day.

Vin
UC/Chrons since age 22, now 27.  Several huge flares since then.  Entire colon diseased at some point from cecum to rectum.  Also had previous inflammation in terminal ileum.
 
Currently tapering prednisone(7.5 mg from 80 mg).  Also just starting 6mp again(75 mg) and lialda.   Suffering from Salmonella as well! :(


sumnorm
New Member


Date Joined Dec 2008
Total Posts : 4
   Posted 12/7/2008 11:48 PM (GMT -6)   
I was Diagnosis with UC in 8/07.  Was working and not bothered much by it.
11/07 came, and I did'nt want to get out of bed for over a week.
I can't seem to stay in Remision.  Every time I get acctive, blam..  Down and out.
 
I have not been able to work, whats others experience with work and UC?
AS and all the wonders with it.
Age 16 SI, knee  Age 18 Iritis Age 20  Age 24 Diagnosis  UC
Diagnosis AS Age 25
-Active AC with UC and SI joints warn and fusing, no fusing in back.
Taking
Prednisone
Methotrexate
Took
Colazal - no effect.
Canasa - no effect.
Lialda - Reaction
Sulfasalozine - Reaction
Prescribed but can't affored
Cotrifoam
Remicade
 
 
 


Got2Believe
Regular Member


Date Joined Feb 2007
Total Posts : 436
   Posted 12/8/2008 12:20 AM (GMT -6)   
Thanks for the responses. You hope to hear everyone is improving, but this is a crazy disease and improvement is not always the case.
Vin, thanks for your response. You've got a good head on your shoulders. I am not thinking this will permanently get better unless I have my colon removed and that has never really been an option much less now that I am feeling and looking better. I know colitis will haunt me till the day I die. That is why I have taken major action and totally revamped my life. It's hard to stick to a strict diet and dedicate one's life to their health but its worth a try. I never had a bad digestive system until one day so that is why I believe I can get way better and continue to hope for that.
I have been eating spinach almost everyday and I think that is helping. I still eat bad some times but I always compliment it with some spinach later or before. Yesterday I went to a wedding ate and a birthday party and ate. I'm talking beans, rice, brisket, asado, tortillas, cookies, chips and salsa... I even had half a beer... But today I had only 2 or 3 BM's and feel pretty good. I actually wanted to play basketball but didn't. I don't miss the strong prescriptions b/c to me they never seemed to work. I spent like a hundred a month on those things and didn't see any benefit I was always flaring regardless. I wouldn't suggest for anyone to quit there prescriptions, nobody should do that. But if someone must for whatever circumstances I would say do it slowly and monitor your health and UC thoroghly.
                                                                                         
28/M/TX single parent of gorgeous 2.5yo girl (revised 10/3/08)
Severe Colitis (pancolitis) since January 9, 2005
currently:  Remission.
RX/day: none! Tapered off Prednisone 9/20/08. Lost job and insurance 10/2007 and stopped taking asacol and Imuran cold turkey
OTC: ensymes everyday, seldom use probiotics, vitamins & other natural treatments
Diet: SCD helps tremendously, but am not strictly on it.
Other: Prayer, food combos, good posture, chewing more, etc.


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 12/8/2008 12:39 AM (GMT -6)   
Better thank God, but I still suffer from spasms after a BM...probably from IBS (so fortunate to have that too lol...)
Moderate Pancolitis
Dx'd 05/2007
7 Pentasa per day (4/3)
Corti Foam p.m. 2X per week
Prebiotics and Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!


hana24
Regular Member


Date Joined Dec 2007
Total Posts : 354
   Posted 12/8/2008 4:13 PM (GMT -6)   
worse....but they day I had my first c-scope I thought I must have cancer at 25 because that was more likely than some unknown illness called UC. To this day I am sooo sooo glad it wasn't cancer.
Jessica 27/F
Remicade
Entorcort 9ml
Lialda 2.4GM
Citalopram 20 MG
omeprazole(for acid reflex)
Tried (Entorcort EC 9ml/day and Prednisone, Asacol ,colazal, Culturelle, dicyclomine)


LeafsFan
Regular Member


Date Joined Dec 2008
Total Posts : 274
   Posted 12/12/2008 6:01 PM (GMT -6)   
New with this..trying to stay positive...
A bit more worried after reading all of this ...
I hope I can keep it in check somewhat and keep the drugs as minimal as possible.
 
Chuck - 28 yrs and counting
 
Diagnosed w/ UC Dec 08
 
-----------------------------------
 
Pentasa 500mg 2-4x daily
Prednisone 50mg day - Calicium + Vit D
Multivitamin, Vitamin C

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