new to posting and new to ulcerative proctitis

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looking to be back to self
New Member


Date Joined Mar 2009
Total Posts : 3
   Posted 3/1/2009 1:59 PM (GMT -6)   
Hey I'm new to all this, posting, proctitis and cansas. I'm looking for some advice. I've been taking suppositories for about a month go back to doctors after 6 weeks to see if I still need every night. I was diagnosis after a colonosphy with mild ulcerative proctitis had biopsies ( after 6 weeks of miss diagnosis's). I'm 33 female. So my questions are what is a flare up? I've had less pain but mucus is not 100% gone. Some days are good some days have little. Also most of blood gone, although Have had a little around menstrual cycle. Is that normal? Had a bit of an upset stomach in the began, may have had a little stomach bug or something. I had just started taking a proboitic, when stomach was waking me up with pain then emptying out 3 to 4 times till about noon. I stop taking probiotic for now. I'm not even sure how to talk to my Doctors (gi). I feel total lost and not sure what to ask or how to get back to normal! I am or trying to get back to working out ( I used to do 30 minutes on treadmill at least 5 times a week and lift weights) but I'm afraid to do to much. Doctor said it was ok, but have 2 grade school kids to take care of. Do not want to be sick like before. My day is all about wheres the bathroom if I need it. I'm nervous about vacations and being on a boat. Please help get things under control, give me some hope? And questions to ask? Doctor said normal diet but I keep reading no coffee or dairy?

nucid
Regular Member


Date Joined Feb 2009
Total Posts : 63
   Posted 3/1/2009 3:41 PM (GMT -6)   
Hi looking to be back to self. I was recently diagnosed to. I also had a long journey to diagnoses. I had some other health issues that made it confusing to get a diagnosis. By the time I was diagnosed I was having a lot of trouble even serving my children breakfast. I have 3 children and we homeschool. I am feeling good now. I still have a ways to go with my overall health, but life is manageable for me and my bowels are under control. I do feel worse when I have my lady visit or when I'm fighting a cold. I'm also 33. It sounds like your meds are working. They just may need more time. I haven't taken suppositories so I can't help you with that. Someone else can say more about your meds.
I hope you feel better soon and get the information you need.
Female 33 Married
diagnosed January 2009
mild pancolitis
Sulfasalazine 500mg 3X

"The Lord is my Shepherd"


Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 3/1/2009 4:31 PM (GMT -6)   
When it comes to food with UC - there really is no right or wrong.  Everyone has to do what is good for themselves.  When I'm not flaring I can pretty much eat anything - when I'm flaring I have found things that bother me - fruits & vegies, dairy, red meat, etc.  But just because it bothers me does not mean that it will bother you.  You will have figure that out for yourself through trial and error.  Sounds to me like the meds are working for you - albeit slowly.  If you wanted to speed things up a bit your can ask to switch to the enema version - Rowasa.  It is a little stronger and will extend further up your colon and treat further up.  Could be the Canasa is not reaching the full area of inflammation and that is why you are still having symptoms.  However - you have to keep in mind that one must be patient and allow the meds to work.  If you are seeing constant improvement - even if it is slowly - hang in there.  As for being slightly symptomatic during your time of the month - that is pretty normal and many people have what they call "mini flares" when they get their periods.
 
Oh - sorry - Welcome to the forum!  :)
Mamas Boys
Colazal, Azathioprine, Remicade
Culturelle, MultiVitamin, Folic Acid, Viactiv
Status: Remission!!


looking to be back to self
New Member


Date Joined Mar 2009
Total Posts : 3
   Posted 3/1/2009 5:04 PM (GMT -6)   
Thanks for those reaching out to me. I just feel a little lost with all this and need a little guidance. I realize it takes time, I'm just want to know things are going as they should be. Its hard to understand and trust doctor after so many miss diagnosis and different meds in beganning. I think half the problem was the antibiotics, that I didn't need. After cat scan, lots of blood work and colonoscopy I hope I'm get the right treatment. Thank you!

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 3/2/2009 7:34 AM (GMT -6)   
Hi, welcome to Hw! :) Being diagnosed (even misdiagnosed) is the easy part, learning how to cope and live is the hardest part. All the information out there is very scary and vast that it can be so overwhelming at first. Please read the older posts as well as the information in our resource section. Educate yourself as much as possible about your proctitis. We have the saying around here: knowledge is power. The more you know, the less scared and confused you will be. Also too, if you feel that a current GI is not working in your best interest, do not hesitate to find one that will. This is a lifelong chronic illness and without the right doctor by your side, it can make things much more miserable.

Were you diagnosed with a scope?
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
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looking to be back to self
New Member


Date Joined Mar 2009
Total Posts : 3
   Posted 3/2/2009 8:50 AM (GMT -6)   
No I was diagnosis after a colonscopy, they did biopsies. And this is what they came back too. I"m very overwhelmed, and the more I learn the more lost I feel. That why I decided to try and hear from people. I'm so new and need to know how others are doing. Thanks
33 female Married 2 kids :)
ulcerative Proctitis
2/2009


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5963
   Posted 3/2/2009 9:32 AM (GMT -6)   
     Welcome!  I've had ulcerative proctitis for over ten years, hospitalized twice for it.  I was advised to stick to a low residue diet while flaring and to stay away from caffeine.  Last year was my worse flare and I was in the hospital ten days with it.  The flare lasted seven months and I was on prednisone all that time.  I now am in remission (since Nov 1st actually).  Odd thing about this disease is that when in remission you would never think you suffer from UP.  But I know it is always lurking around.
     My GI doctor advised me to take a probiotic.  They gave me Flora Q in the hospital, but that is quite expensive.  My nutritionist suggested Powerdophilus by Country Life and I order online.  I believe it was $17.88 (which included shipping) for a bottle of 200.  I keep them refrigerated and take two a day with meals.  I also take calcium with vitamin D because I developed osteoporosis, most likely from the steroid use over the years, and a one a day multivitamin with iron.  I don't have to take the steroid enemas anymore or Canasa.  I am on Colazal 750mgm, 6 capsules per day.  My GI doctor prefers Colazal instead of Asacol for ulcerative proctitis, it treats the lower portion of the colon moreso than Asacol.  I've also been on 6MP for at least five years.
     I now can eat mostly anything while in remission and do drink my one cup of coffee with caffeine without any adverse effects.  I stay away from greasy or spicy foods.
     Good luck to you and I hope you are feeling better soon.
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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