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Ulcerative Colitis
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Posted 10/8/2009 3:53 PM (GMT 0)
Hello everyone.  I am a 37 year old female.  I was diagosed with ulcerative proctitus a year ago.  I have been taking Canasa 1000mg suppositories everyday and things don't really seem to get too much better.  I have blood in my stool everytime I go (which is usually a few times a day).  Sometimes I will go to the bathroom and think that I have to have a BM...but it is just a lot of gas with blood and mucous.  UUUGGHH!!

We (husband and I) have tried to get the kids and I on to a different health insurance (husband is covered at his job...but the kids and are not...we have to pay).  We were denied health insurance for me due to this illness.  I am currently covered under my husbands ins. but it not cheep.  Does any one know of a different medication that I should be talking to my doctor about???  Canasa does not have a generic form and is very expensive to cover.  I only have to pay $25 per month supply...but I would like to know what others are doing to treat this!

Does diet play a big part?  My doctor told me "no".  What about supplements?

Thank you for your help and support.  It is nice to know that I am not the only one out there with this silly disease!

Blessings to you all....

Posted 10/8/2009 6:03 PM (GMT 0)
Hi Coaches Wife,

I can't answer your question on cheaper meds but I do know that diet plays a huge part in controlling the inflammation in the intestines.  The thing is that what bother one person might not bother the next.  For me wheat, oats and most of the grains are irritating and I tend to crave them so when I continually eat flour products I know I'm headed for trouble and the bleeding is soon to start.  Then it takes weeks to get things under control again and that means cutting these things entirely out of my diet.  Nuts are another problem they seem to cause bleeding as well.  So you have to find out what it is that bothers you by keeping a food diary.

One thing that is cheap and has helped many of us here is the Vitamin E enemas.  Just empty the capsules into a enema bottle with warm water or your medicine and retain for the night.  It's natural and it helps for the bleeding and inflammation.  Probiotics are also a must and should be taken daily in order to keep the good bacteria in the colon.  You might need to try different ones before you find one that works for you.
Posted 10/8/2009 6:10 PM (GMT 0)
You could see if an enema would work as well as the suppositories do. There are quite a few generic mesalamine enemas and I think they're relatively inexpensive. However, I do know that the suppositories do a better job if your inflammation is *only* at the rectum. It sounds as if you're still having quite a few symptoms, which may indicate you have inflammation higher than just the rectum or that you just can't get the inflammation in the rectum under control...it might be worth asking your doc to do a sigmoidoscope to see what the case is. There are also steroid-based enemas and suppositories.

Does your husband's insurance have a mail-order Rx option? Those usually allow you to get three months' worth of medicine for the cost of two copays.

I would definitely start a probiotic supplement.

As for diet, it doesn't seem to matter what I eat now that I'm in remission (except MSG and artificial sweetners, which have always bothered me). When I was flaring, I just took it easy on food and ate soft, fairly low-fiber things. But, everyone is different when it comes to diet. You should probably keep a food journal to see if you can pinpoint any foods in particular that cause you problems.
Posted 10/8/2009 7:10 PM (GMT 0)
You can try to get Canasa through the Canasa Care program:

http://www.canasacare.com/

The other option that has helped me through really bad times is ordering from Canada. The prices there are so much better and they have generics available for a lot of the drugs we don't have generic for here.

I was just like you when I got diagnosed with proctitis. I had the somewhat frequent bathroom trips with blood and mucus but other days, I would be next to normal (doesn't sound like you have the normal days so much)... I would see blood with every movement but it would range from a drop on the tp to a little on the stool, never a lot of blood.

Are you having a lot more blood than this? I don't remember having trips to the toilet with just blood until my condition had deteriorated past the point of being managed with suppositories. It is my recommendation that if you're not seeing improvement with the suppositories that you go to a GI and find something that will help you. If you allow your body to stay in this flare, not only will it most-likely continue to get worse, you could end up at elevated risk for colon cancer. Not trying to scare you but we, people with UC/UP, have to be much more dilligent about our colon health.

Please go get checked out. You may need oral meds or rectal enemas to stop the inflammation. UP can turn into UC. A bad flare will not be managed with Canasa. Mine wasn't anyway...

Posted 10/8/2009 7:11 PM (GMT 0)
The diet question is a hot topic - we all find different things help us! For me, when I'm flaring, I stay away from scratchy things (salads, coleslaw, corn, popcorn...) gassy things, because the gas hurts when I'm inflamed, fatty/fried things, and acidy things.
Doctors are not convinced about diet, and there's a line that "diet doesn't change the progression of the disease" - but many of us can tell you that whatever that means, we can sure feel better or worse, bleed more or less, according to what we eat!
Posted 10/9/2009 5:15 AM (GMT 0)
Thanks for all your input everyone.  I will have to study up on this.

I have been dealing with this for the past year and a half.  I had a colonoscopy done and they found 2 polyps and removed them.  One was a precancer and the other was fine.  But they also discovered I had the ulcerative proctitus.  It is just at the top of the rectum so my doc said that the suppositories would work the best.  I am just frustrated that I still have some bleeding everyday and that I have the feeling of having to "go"...but a lot of times it is just a lot of gas with some blood/mucous stuff.

I am really glad that I came across this forum.  It is a great resource.

I wish you all the best.  Thank you for all your help.

Blessings,

Chantel

Posted 10/9/2009 8:14 PM (GMT 0)
The polyps are very common, and it's good to have regular scopes (colonoscopies) to get them nipped out early. My doc wants me to have them every two years. Don't worry about them.

The inflammation is causing your symptoms. Maybe an enema product would work better for you. They are expensive, but there are generics available. Try to keep up with the insurance for yourself! It's true, a policy with an employer is your best bet for getting coverage with this pre-existing condition. But health reform would change that...hope....

It is a frustrating disease. If you are getting those spasms at awkward times, you could try a small dose of immodium to calm your gut. I take 1/2 a pill at a time and it calms things without blocking me up.
Posted 10/9/2009 8:29 PM (GMT 0)
Definitely fish oil and probiotics! Hope you feel better soon.
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