frustrated in Mass

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Laney48
New Member


Date Joined Mar 2009
Total Posts : 7
   Posted 3/30/2009 11:45 AM (GMT -6)   
sad   I have been silently dealing with ulcerative proctitis for almost 2 years now. Afer the colonoscopy, the MD said it would clear up after a month or so and would probably not return. Huh...what a joke!!! It never really cleared up completely. I have used rowasa enemas and canasa supps.
I found this site and was elated b/c now I have some people to talk with who know what I'm going through.  I have a flare, bleeding and pain, so I go back to the Canasa for 2-3 wks. I'm ok for a few weeks, then it starts up again. The MD said to stop milk products and see if that helps. I guess he maybe right. I do seem to have flares when I have cottage cheese or milk.
Do you get bloating alot? I feel like a tub when I have a flare and am using the Canasa. Someone had said they used anusol supp also. Does this help to control flares, or do you use them during?
Thanks for being here to talk to. 
 
Laney in Mass

Rio in Maryland
Veteran Member


Date Joined Nov 2007
Total Posts : 891
   Posted 3/30/2009 12:08 PM (GMT -6)   
Laney,

Many of us have benefited from altering our diets, so changing your diet may be worth a try - especially as dairy is commonly seen as one of the big culprits in aggravating symptoms.

What other medicines are you on? Do your symptoms come back only once you stop using Canasa?
Rio, 33 year old male. Diagnosed with UC in 2006
100 mg Azathioprine, 4800 mg Asacol
VSL#3 x 3 times a day, Metamucil wafers
Vitamin E enema or Mesacol/Asacol enema at least once a week
Spinach & sunflower seed diet


Laney48
New Member


Date Joined Mar 2009
Total Posts : 7
   Posted 3/30/2009 12:41 PM (GMT -6)   
Thanks for your response. I take Citracel every am
and the Canasa when I flare. I'm not on any other meds for that conditon. It does seem like lately when I stop the Canasa within a few days or weeks, I'm back at it again. I am constatntly trying to watch my weight as I am slightly overweight. So, I eat alot of veggies and fruit. The MD said he didn't think that was a problem. But it seems everytime I try the Weight Watcher plan, I have issues.
I am on simvastatin, hctz, prevacid, mobic for cholesterol, arthritis, etc.
The MD said he didn't want to do another colonoscopy b/c it would just irritate things more. So, treat the sxs and when I get a flare to let him know so he can keep track.

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 3/30/2009 12:47 PM (GMT -6)   
It seems like you need to be on a maintenance dose of Canasa...that seems to be the recommendation for people with UC; that we stay on a mainetnance dose of something to keep us in remission.
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 nightly, 40mg 30mg 20mg of Prednisone (quick taper), Culturelle probiotic, and Zoloft (25 mg).


geminisunset
Regular Member


Date Joined Sep 2008
Total Posts : 153
   Posted 3/30/2009 1:18 PM (GMT -6)   
Hi Laney,

When you stop the Canasa, do you stop abruptly or does your doctor have you ween off of it (ie: take it every other day, then every few days)? I've heard that it's better to slowly get off of the medication than to abruptly stop taking them when the symptoms go away.
GeminiSunset
Diagnosed w/IBS: Oct. 2006
Diagnosed w/UC: Jan. 2007 (proctitis), July 2008 (pancolitis)
Medications: Canasa (helped the first flare when it was just proctitis); Rowasa enemas (did not help as the following colonoscopy confirmed pancolitis); Lialda (2 pills in the morning, 2 pills in the evening, soon to be 2 pills in the morning only once I'm off steriods); Prednisone; Protonix (only took while on prednisone); Remicade infusions, started at 5mg/kg, increased in March to 7.5mg/kg (started Aug 2008 - 6 infusions so far, next infusion on 4/30 continuing every 8 weeks); Zyrtec-D (for allergies); Toprol (a generic form, 25 mg, for a rapid heart rate)
Supplements: Women's One-a-day multi-vitamin; Super B-complex w/vitamin C, Iron supplements, Omega-3 Fish Oil (coated, not sure how much except one soft-gel daily), Aloe Vera supplement (two daily), Acidopholis
Diet: Spinach and Sunflower seed butter diet (starting 3/21/09)
Current Status: Reached remission for a few weeks in October 2008, but symptoms returned after I allowed myself to enjoy wine again.... gave up wine and have not been in full remission again yet. 


Laney48
New Member


Date Joined Mar 2009
Total Posts : 7
   Posted 3/30/2009 2:39 PM (GMT -6)   
Actually, I have been stopping abruptly lately after 2 weeks and sxs subsided. When I first started 2 yrs ago, he did have me taper off. Thanks. I'll have to do that next time and see if it helps.
You feel that wine causes a problem...that stinks. I like my wine occasionally too. I'll have to take note of that.
I also take a woman's Multi, calcium w/d and fish oil caps as well as stool softener (3 caps) ea night.

subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 3/30/2009 3:26 PM (GMT -6)   
Yes. Diet is very important for many of us.

Many of us are intolerant to one or more of the following:

lactose
fructose
wheat
yeast
gluten

And then if you are flaring, you should be avoiding pro-inflammatory foods and consuming anti-inflammatory foods.

Pro-inflammatory:
dairy
eggs
sugars
fatty meats
fried foods
spicy foods
nightshades (tomatoes, white potatoes, peppers, eggplant)
...

Anti-inflammatory
turmeric
dark green leafy vegetables
ginger
garlic
omega-3
cinnamon
camomile
berries
...

There is also the BRATTY diet: bananas, rice, applesauce, toast, green/herb teas, yogurt.

Of course, don't eat anything if it bothers you. Some people can't eat toast. Some can't eat applesauce.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission
Don't expect your doctor to cure your health problems. Your health is your responsibility.

Lexapro (for stress), Probiotics and Vitamins (a whole bunch of them)
Avoid HFCS, foods high in fructose, artificial sweeteners
When flaring: eat anti-inflammatory foods, avoid pro-inflammatory foods
Previous treatments: Fecal transplantation (worked), Prednisone (stopped working), Colazal (stopped working), Asacol (stopped working)

Post Edited (subdued) : 3/30/2009 2:29:20 PM (GMT-6)


Zippy123
Veteran Member


Date Joined Feb 2009
Total Posts : 735
   Posted 3/30/2009 4:39 PM (GMT -6)   
I think diet does make a difference but it varies from person to person. Red fatty meats don't really seem to bother me, but yogurt at times seem to, so I avoid it completely. I eat plain quick oatmeal and they say that is bad, but it seems ok with me. So you have to experiment a bit. Some people are even having luck eating canned spinach and sunflower seeds as weird as that sounds it seems to help some people.
You could even try probiotics which seem to help many like Saccharomyces Boulardii for example. From Jarrow or Florastor.

Sherman Tank
Regular Member


Date Joined Jan 2008
Total Posts : 34
   Posted 3/30/2009 6:41 PM (GMT -6)   
Everyone is so different. Bread seems fine for me- thankfully- but I am definately alergic to dairy- even butter now (esp. if I'm flairing. Its annoying, especially eating out but then it is worse to deal with UC symptoms, eh? anything is worth trying once, though I personally avoid any of the extreme diets (since i haven't read about any that lead to a long term remission). Even staying off Dairy doesnt keep UC away, just means I have less symptoms and recover faster when I do flare. Good Luck.

Diagnosed UC (sigmoid) and IBS since '85.
Asacol (no more rowasa, no more steroids almost no more rowasa!)
Trying Homeopathy treatments over a year now...was in remission 6 months but having a bit of a flare right now.
Diagnosed proctosigmoiditis/ UC 2004
Misdiagnosed with just Hemeroids since I was 12!!
Bad flare after birth of first son in 2004,
another bad flare pregnant with 2nd baby summer 2006
recent reallly bad flare Dec 2007- 1st time w/ prednisone
Asacol for last 4 years 3pills 2X's, ROWASA as needed up to 3X's a day,
now just Asacol 3 pills-2X's a day, probiotics 2X's, fish oil, diet
Tryed-acupuncture, herbal remedies


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5191
   Posted 3/30/2009 8:20 PM (GMT -6)   
You'll find lots of company on this site, confirming that UProctitis can be very stubborn to treat. It sounds like you definitely need to be on a maintenance dose of anti-inflammatory med. Have you looked at Websites like ccfa.org or Salix Pharmaceuticals Patient Newsletter (Archive)? They have a lot of good info on meds, diet, lifestyle, etc. that can help a UCer get a better handle on flares & maintenance issues. We all wish ours would just go away, but that's very unlikely to happen! Hang in there-- you will likely do well with a steady med plan since Canasa has relieved your symptoms to-date. / Old Hat (30 yrs with left-sided UC; presently fighting off flare in sigmoid colon)

subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 3/30/2009 8:29 PM (GMT -6)   
Zippy123 said...
I think diet does make a difference but it varies from person to person. Red fatty meats don't really seem to bother me, but yogurt at times seem to, so I avoid it completely. I eat plain quick oatmeal and they say that is bad, but it seems ok with me. So you have to experiment a bit. Some people are even having luck eating canned spinach and sunflower seeds as weird as that sounds it seems to help some people.
You could even try probiotics which seem to help many like Saccharomyces Boulardii for example. From Jarrow or Florastor.


I agree. Applesauce bothers me due to its high fructose content, yet it's part of the BRATTY diet.

Spinach is anti-inflammatory. It works for me too.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission
Don't expect your doctor to cure your health problems. Your health is your responsibility.

Lexapro (for stress), Probiotics and Vitamins (a whole bunch of them)
Avoid HFCS, foods high in fructose, artificial sweeteners
When flaring: eat anti-inflammatory foods, avoid pro-inflammatory foods
Previous treatments: Fecal transplantation (worked), Prednisone (stopped working), Colazal (stopped working), Asacol (stopped working)


Laney48
New Member


Date Joined Mar 2009
Total Posts : 7
   Posted 3/31/2009 8:29 AM (GMT -6)   
Thanks to all the responders. I am definitely avoiding dairy now. I will speak to MD re: maintainence meds.
OldHat..thanks for the websites. I will definitely research them.
Sherman Tank...I too was diagnosed and treated for hemorhoids for years. The pain was attributed to stools pressing on the blood vessels....hah..all those years of suffering..at least now I know and can treat with the appropriate meds and diet.

JOVIGIRL71
Veteran Member


Date Joined Sep 2003
Total Posts : 660
   Posted 4/4/2009 9:53 PM (GMT -6)   

Hi Laney,

I'm also from Mass. Do you see a Gystro doctor? If not I see the one of the top gystro's in Mass. Dr George Dickstein. He's wonderful. He's out of Natick. I don't know what part of Mass you are in but he come's highly recommended from me. I've seen him now for 11 yrs..

Feel Better

Donna :)


~~ Donna ~~
 
Diagnosed with UC in 1987 at age 16
Imuran ~ 2 1/2 pills a day,Pentasa 2x4 a day
Lexapro ~ 20 mgs daily for sanity  :-)
 

New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, September 24, 2018 10:22 PM (GMT -6)
There are a total of 3,006,319 posts in 329,327 threads.
View Active Threads


Who's Online
This forum has 161827 registered members. Please welcome our newest member, a8166008.
160 Guest(s), 5 Registered Member(s) are currently online.  Details
Scaredy Cat, InTheShop, a8166008, CAdogsRus, mufjem