so frustrated, need some positive words???

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nymomof3
New Member


Date Joined Mar 2009
Total Posts : 16
   Posted 4/4/2009 6:43 AM (GMT -6)   
hi everyone, i am currently taking asacol 4tabs 3x a day, on the canasa enemas and just started taking 6mp..i am just not feeling better and up all night running to the bathroom, i was not this bad before my colonoscopy 3 weeks ago, they said if i want to do the foam to with the canasa in the morning and the foam at night, has this worked for anyone, i never had such a bad flare up and have had proctitis for the last 5 years, usually its manageable but not anymore i cant go to work and cant sleep...has anyone have had such a bad flare up and gotten thru it and how? also i've read on hear about going to the hospital, at what point is that..im really scared and also read about surgery, what kind of surgery...i am really freaking myself out..any positive thoughts would be greatly appreciated, i love hearing success stories

Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 4/4/2009 7:15 AM (GMT -6)   
I understand your fear. Uc is a plain ole pain in the tush isn't it??? :) If you are having symptoms that are interferring with your rest and your life, then you need to find a medication that can help you heal faster. Definately go on the foam if this is the case. The foam can heal rather fast - you are talking about Cortifoam yes? As for going to the ER - usually you will know. But it's best to avoid the ER unless it is absolutely necessary. All they really do for you is replenish the fluids you lost (which is good if you are dehydrated) and put you on steroids to stop any bleeding and symptoms.

Surgery is usually only reserved if everything else fails to keep you out of flares. There are a couple types of surgery. But they remove the entire colon because if they leave any portion of the large intestine in there, Uc will just attack the remaining portion. But, I think you are really not that close to surgery anyway because you haven't tried everything there is to try yet. Please stop worrying about what may not happen or you will drive yourself nuts!
 @--->--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-second series starts 2/17, OA in my fingers -Celebrex, Tylonel Arthritis and Voltaren Gel
To help Healingwell - click here: DONATE
 
 
 
 

 
 


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 4/4/2009 7:18 AM (GMT -6)   
Usually after the colonoscopy I do bad for several weeks. It passes, but it sucks while you are going through it. The jumping up and down all night to go to the bathroom with loss of sleep is really what kills you. Get as much rest as you can during the day if possible. Maybe take an immodium to get some sleep and rest. When you lose the rest, you increase the stress, your hormone levels will jump all over, cortisol gets even more out of whack and in turn will eventually make the UC worse or just drive you nuts. Start to get some rest and things will turn around!!
Proctitis DX 1999, Pancolitis DX 2008
Lialda 1 day
Immuran
Golimumab study (100mg every 4 weeks)
Vitamin E Enemas as needed
Probiotis/GreenTea/VitD+Ca/SuperDHA


nymomof3
New Member


Date Joined Mar 2009
Total Posts : 16
   Posted 4/4/2009 7:44 AM (GMT -6)   
thanks but red i have a question for you..how did you know you didnt tolerate the asacol, i feel that might be my problem...and im already on the 6mp what else is there to heal this faster..my dr's seem to take this very lightly and have no idea what im going thru...

Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 4/4/2009 7:58 AM (GMT -6)   
I didn't truly know I was intolerant of mesalamines until I was switched to Colazal. I was on Asacol for 12 years before my doc switched me. Not his fault, mine because I was ignorant. I just didn't know enough about UC to know that the everyday symptoms that I was having wasn't normal so I just never told him. It was when it got so bad that I told him and he switched me. I felt immediately better. But then I got thrown into a flare again and tried using Rowasa. Every day after I took the Rowasa I would feel like I had the flu, bad abdominal pains and massive D. I tried using the Rowasa on 3 more occasions with the same result - I also tried Canasa suppositories with the same result. I then came to the conclusion that I just can't tolerate mesalamines. He then put me on Colocort enemas - which are steroid enemas and I felt immediately better. However, I just couldn't get off the steroid enemas without massively flaring and then is when I started on 6mp. After the 6mp kicked in, I was able to successfully get off the steroid enemas.
 @--->--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-second series starts 2/17, OA in my fingers -Celebrex, Tylonel Arthritis and Voltaren Gel
To help Healingwell - click here: DONATE
 
 
 
 

 
 


glamourgirl
Regular Member


Date Joined Apr 2008
Total Posts : 460
   Posted 4/4/2009 8:04 AM (GMT -6)   
I would try the steroid enemas just to help to get your flare under control. If things are too bad, you might want to consider doing a round of Prednisone. 6MP takes about 3 months to kick in so you need something to help get you better while you wait for it to start working. There is also the option of Entocort which is an oral steroid but not as many side effects as Prednisone. It always helps me get a little bit better. It sucks finding the right drug combinations. I've had UC for 6 years and I'm still working on finding what works best for me.
Female, Age 38
Diagnosed w/c.diff 7/02 when pregnant w/1st and only child during 2nd trimester(wasn't on antibiotics)
C.diff flare within weeks of delivering baby 1/03, Diagnosed with UC 2/03
Current Meds:
LDN - 2/17/09 1.5 mg., increased to 3 mg. 3/3/09
Ferrex Forte
Acidophillus, Sacchromyces Boulardii, Oil of Oregano


PSA
Regular Member


Date Joined Jan 2009
Total Posts : 498
   Posted 4/4/2009 10:48 AM (GMT -6)   
One has to stay positive. This would help in curing UC and getting on to remissions.

This reminds me of something I read about attitude.

There once was a woman who woke up one morning, looked in the mirror, and noticed she only had 3 hairs on her head.

"Well, " she said," I think I'll braid my hair today." So she did and she had a wonderful day.

The next day she woke up, looked in the mirror and saw that she had only 2 hairs on her head. "H-M-M, " she said, "I think I'll part my hair down the middle today." Sso she did and she had a grand day.

The next day she woke up and looked in the mirror and noticed she only had 1 hair on her head. "Well", she said, "Today I'm going to wear my hair in a pony tail." So she did and she had a fun, fun day.

The next day she woke up, looked in the mirror and noticed that there wasn't a single hair on her head. "YEAH" ssshe exclaimed. "I don't have to fix my hair today"!

Attitude is everything

SO WHAT DO YOU SAY THREE CHEERS
45 years Male Attorney
Diagnosed UC October 1989
Had two stage J Pouch Surgery Nov 2005 Take Down March 2006
Complications after surgery - Incisional Hernia and Ano Fistulas
"Faith is the bird that sings when the dawn is still dark."
"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracl: Albert Einstein
"What you are aware of you are in control of; what you are not aware of is in control of you."
 


nymomof3
New Member


Date Joined Mar 2009
Total Posts : 16
   Posted 4/4/2009 1:06 PM (GMT -6)   
thanks all for your support, i have already been on prednisone and had to be takenoff, very bad reaction theni was on rowasa ememas with no relief and after colonoscopy he put me on steroid enemas with no help, soknow i am back on canasa suppositories in the morning and the foam in the evening, this will be my first night with trying the foam..im just hoping this flare goes away soon, cause im hoping not to go on disability

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 4/4/2009 6:34 PM (GMT -6)   
     So sorry to hear you had a bad reaction to the prednisone.  Unfortunately, that is the only drug which helps me achieve remission.  It took the 6MP about three months to kick in while taking prednisone too.  What exactly was your reaction to the pred?
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.

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