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PLEASE HELP!!! - Proctitis

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Posted 9/20/2008 1:08 PM (GMT 0)
Hello All,

I have posted before. Right now I am on 12 pills of asacol and trying everything rectally. Both my Dr. and I do not want to put me BACK on prednisone because all it seems to do is stop the bleeding but when I get off of it ..the blood comes back. I have about one inch of my rectum infected.

I just went through IVF#3 and had another miscarriage. I stayed on 2.5 mgs of prednisone until they did my Egg Retrieval and since getting off the prednisone back in August I have been bleeding.


Went to GI she said "lets get you pregnant...alittle bit of blood is not a big deal".....

We talked about the higher class of meds 6MP and Remacade but I think she knows that I would rather avoid until I have a baby.

I already saw Dr. Mark Peppercorn at Beth Israel in Boston who said the same thing.

So my question is.....

IS a little bit of blood okay?

Should I try doing the hydrocortizone enema both at night and in the morning?

Should I do rowasa in the morning and then the cort enemena at night?

I finally switched back to Asacol because I thought maybe the switch to colazal in March was the problem. I am def. dependent on prednisone (I have only taken it twice) but it seems everytime I get off it the bleeding comes back. I do have some muscus as well.

CAN DIET REALLY HELP with proctitis? I dont have Diar, or urgency right now.

Thanks so much for your help AGAIN! I am just not sure what to do.

DOES ANYBODY WHO JUST HAS PROCTITIS take 6MP or remicade????

Posted 9/20/2008 4:03 PM (GMT 0)

Hi,

     I have ulcerative proctitis.  I've been on 6MP for four years now and it has NOT kept me in remission.  Diagnosed in 1998.  Last flare started April of this year and I was in the hospital for ten days in May.  Just got off the prednisone two days ago...still see some blood with my stool.  I refuse Remicade even though my GI doctor is pushing it because in the 60's I was exposed to the TB virus and have had a positive patch test..negative chest xray.  Remicade can reactivate the TB virus and it may have fatal results.  Doctor switched me from Asacol to Colazal years ago because the Colazal has more favorable results is proctitis than the Asacol.  I also take Cort enemas alternate nights with Canasa.  I am much better than I was in May, but still in small flare.  Best to follow a low residue diet too.

Posted 9/20/2008 6:53 PM (GMT 0)

Hi,

I am so sorry to hear about your miscarriage.  I have a very stubborn bad case of Proctitis.  Remicade brought me into remission for a while, my 1 inch rectal ulcer went down to 1/4 inch.  Then Remicade lost its effectiveness and I got double doses and had a reaction.... next I was put on Humira, 3 months later had another scope (June 2008), bad results, rectal ulcer back to almost 1 inch deep... so GI added 6MP.  Then I started doing a lot better in August now I am not again.  If I could go back in time I would have started with the 6MP alone.  But I got so bad and the 6MP takes about 3-4 months to work so that's why I started with Remicade.  I avoid Prednisone at all costs.  It doesn't even help me that much anymore, anyways.  I always have some rectal bleeding, but it is not good.  I watch my diet because if I don't, I get very ill.  If you don't than I would just keep up the same, like th other poster said, avoid roughage like seeds, popcorn, lettuce, though.  There is a cream called Proctosol HC maybe you could take that in the am or proctofoam rather than an enema. Good luck to you. 

Adrienne

Posted 9/20/2008 8:41 PM (GMT 0)
I would say that part of the problem is the hormonal fluctuations from your pregnancy/miscarriage and changes from that.

Instead of the enemas, you could do suppositories, but 3 times a day...did the Canasa not agree with you? Were you taking only one a night? as well use an external hydrocortisone ointment put just inside a bit into the anus.

It's awesome you don't have diarrhea or urgency....so, something is working!!!


Hang tough....try not to go back to the pred or immunosupressants at this time....

quincy
Posted 9/21/2008 1:11 AM (GMT 0)
I had no idea you can take canasa up to 3x a day. I am going to give that a shot right away.

Is the canasa just better than either of the enemas?

I tried to the cortafoam but for $50.oo for 15 days it is not worth it. Noticed NO difference.

I do have a question...does aloe vera supplements work well? What about flaxseed pills?

I am taking the VSL# 3 and noticed no difference. Any other probiotics out there. I hear the Primal Defense is good.

I am just sooo scared right now....
Posted 9/21/2008 12:53 PM (GMT 0)
I have a friend who swears flaxseed oil capsules have kept her in remission.  Guess they can't hurt.  I am taking one a day with my food.  I also put a tablespoon of ground flaxseed on my rice krispies in the morning...but not every morning.  I experienced a bad flare in the spring and was hospitalized for ten days in May.  I still bleed, but I only "go" maybe once or twice a day.  I do have a tad of urgency but nothing like it was.  Down to 5 mgm of pred every other day....very sloooooow taper, 50 mgm of 6 MP, six Colazal a day and Cort enemas alternate with Canasa each night.  I didn't know you could take up to 3 Canasas a day either but I did know you could take one at night and one in the morning but that isn't what my GI prescribed and it is quite expensive.  I also take a probiotic (Powerdolphilus by Countrylife) which was suggested by my nutritionist.  It's a lot cheaper and just as good as FloraQ which they gave me in the hospital.  You can order it online, only $12 a bottle of 200.  I take Calcium, fish oil capsule, multivitamin and BP meds too..ugh.
Posted 9/21/2008 8:06 PM (GMT 0)
Hi
I am new to this forum, but have had uc for ten years. I have been bleeding on and off for 1 year. The only thing that every puts me into remission is all natural stuff, ie: VSL#3, aloe vera, folic acid, fish oil, etc. I do a fast for a week with carrot juice, watermelon and vegetable broth. I had to do it when i was pregnant, they thought i'd lose the baby the cramps were so bad and i didnt want the side effects of the other medications. Asacol has never worked for me or cort enemas, on them now but they dont ever stop the bleeding. I have had it for so long i start to worry about colon cancer, and how often i should do a colonoscopy. I am getting ready to fast again, but am very frustrated with this disease. Thanks for letting me post i didn't realize how helpful it would be to communicate with people who understand.
Posted 9/21/2008 8:09 PM (GMT 0)
I think Colon Cancer risks become higher only with Pancolitis and after 10 years of the disease.
Posted 9/21/2008 8:14 PM (GMT 0)

Colon cancer risks slightly increase from any type of ongoing inflammation in the colon be it from UC or CD, not necessarily with only pan colitis (when the entrie colon is inflammed).

:)

LondonRed said...
I think Colon Cancer risks become higher only with Pancolitis and after 10 years of the disease.

Posted 9/21/2008 8:32 PM (GMT 0)
My doctor said it was with pancolitis and the risk is minimal in any case. How many people on here have developed colon cancer with UC? That would be a good straw poll.

For people with ulcerative colitis, there are two factors affecting the risk of developing colon cancer. The first factor is that risk increases after 8 to 10 years of having ulcerative colitis. The second is the extent of the disease in the colon. Patients with disease only in the rectum have the lowest risk. Having only part of the colon involved carries an intermediate risk. The greatest risk is for people whose entire colon is diseased (called pan-colitis).

Posted 9/21/2008 11:42 PM (GMT 0)
I just called my doctor in desperation. I truly do not want to go back on the prednisone. Her words of wisdom was ...start takig 40mgs of predisone. Which I was taking all of July and August until I did my embryo transfer for IVF. Again proves I am dependent. OR go to the ER so they can do a blood count.

I am going to the bathroom...not D but tablespoons of blood. Can people LIVE like this??? I dont kow what the heck to do? Should I find another doctor? I can not take 6MP because I want to try to have a child. Whats the point of taking prednisone if when I go off of it I bleed right anyway.

Help! I am sooo scared.
Posted 9/22/2008 12:20 AM (GMT 0)
Another Dr. might help, how about an alternative Dr or the accupunturist. It will be very hard to endure a pregnancy if you are not healthy, (I know i did two) and the meds could transfer to the baby. Could you try the natural approach for awhile get your colon calmed down then try to get pregnant. you need to take something to reduce inflammation, everything i have read says it takes about 6 weeks to calm down, that wont seem too long if it ensures a healthy baby. Dont forget iron and folic acid - very important for UC and baby. Remember stress probably adds to it, do yoga picture a calm colon and a beautiful baby, it will happen.
Posted 9/22/2008 1:05 AM (GMT 0)
I had a recent proctitis flare. I am now tapering off the pred. I did cortifoam at night and canasa in the am and 3 asacol, 3 x per day. I now take the 3 asacol 3 x per day and canasa 2 times a day. It seems to be working.

The cortifoam really hurt. I can't use rowasa. I blow it right out. It took a while to find the right combination of meds. It may take some experimenting to find the right combination of oral and rectal meds for you.
Posted 9/22/2008 1:34 AM (GMT 0)

I hear ya wishful.  Today was a very bad day for me.  Seems like I am prednisone dependant too.  Started taking it in April (30 mgm), it was increased via IV while I was in the hospital to 40 mgm in May and then tapered until beginning of August.  I was off it only a few days when I developed an abscessed tooth and put on Cipro by the dentist.    I also took Flagyl while on the cipro but bleeding started from my rectum anyway.  Actually, the bleeding never ceased only diminished.  I started back on 20 mgm of prednisone then slowly tapered again.  This past week I tried 5 mgm every other day but today the proctitis really was bad...about 10 bowel movements, most of them formed stool...bleeding and urgency.  My GI doctor  is only going to push Remicade again if I call him tomorrow and I refuse to take it.  I hate the idea of boosting up the prednisone again as it increases my blood pressure which put me into the hospital along with the UC in May.

I would hold off trying to get pregnant until your UC comes under control. 

Posted 9/22/2008 1:58 AM (GMT 0)
My UC started with proctitis about 15 years ago, then after periods of on and off remission, gradually spread to 30 cm of the colon. You asked about diet. Well, after following an anti-fungal program, while in a major flare, all my symptoms disappeared and I still remain symptom-free. I still need to limit processed foods, especially those including yeast and those with sugar (artificial or otherwise) listed as one of the first 3 ingredients on the label. I also limit grains, as they are commonly contaminated with mycotoxins, such as aflatoxin. There has been a fungus link to UC. (did you ever take birth control pills or antibiotics in your lifetime?) The only way to know if yours is, is to experiment with an anti-fungal program. Keep looking for answers and keep trying different approaches, especially if what you're trying now isn't working yet. Good luck......
Posted 9/22/2008 2:06 AM (GMT 0)
I don't worry about just blood and only turn to prednisone when I have urgency and spasms. Otherwise I've only used asacol and rowasa.
Before this remission I'm in now (brought about by learning food sensitivities), I was pretty much a daily bleeder for as long as I can remember.

BTY, my doctor says she has had no patients with UC who developed colon cancer, fortunately, because the statistics cited are not in my favor! We are in a town of about 80,000, I'm not even sure if there is another GI here.
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