ulcerative proctitis

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maddi1
Regular Member


Date Joined Oct 2007
Total Posts : 22
   Posted 10/15/2007 12:31 PM (GMT -7)   
confused  I was dx 3 days ago with ulcerative proctitis and put on cortifoam and canasa suppositories.  My GI said to stop cortifoam after 2 weeks, but never said on the canasa.  I see he gave me 5 refills.  I don't see him for another 3 months.  Do people with this condition use canasa as a maintenace drug after they have gone into remission?  And does a remission really mean that the inflamation and ulcers have healed?
oct 2007 dx ulcerative proctitis. on canasa suppositories & cortifoam


stm177
Regular Member


Date Joined Jul 2007
Total Posts : 90
   Posted 10/15/2007 3:04 PM (GMT -7)   
I used my Rowasa enemas for four weeks until the next doctors appointment. Most of my symptoms cleared up by that appt, and the doctor said I could quit. I stopped using them, but a minor amount of blood reappeared. I started using one enema, every other day for about two weeks.

Whenever I have a mini-flare, I try to use some of the medicine at least for a few days.

You should probably call your doctor on the telephone and see what the nurse says. You may need to use Canasa for the entire three months in order to let the ulcers heal. I didn't have any ulcers, but I had been using steroid suppositories for about 2-3 months before the colonoscopy. (They didn't halt the bleeding entirely though).
Proctitis - diagnosed April 2007 (symptoms starting in October 2006)

Flares treated with Rowasa enemas

Mild food diet (chicken, rice, collard greens, no sugar, no corn, no beef/pork, etc)


NIcepeter
Regular Member


Date Joined Sep 2007
Total Posts : 72
   Posted 10/15/2007 4:14 PM (GMT -7)   
I was diagnosed in April,2007 too. Proctitis might be different from UC in term of treatments. Let's keep in touch to keep this bug from becoming a whole colon problem-colitis.
I use fish oil twice a day. and Alo Vera one or twice a day. It seems help some, but not a complete remission. Rowasa helped, but it only maintains. I am not using it anymore.
I am thinking to VSL#3 probiotics as online research says it is effective to put 63% of patients in to remssion. I have proctitis. The online research was done on ulcerative colitis. I wonder how VSL#3 works for proctitis. Thanks.
John

PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 10/15/2007 5:22 PM (GMT -7)   
My husband also has ulcerative proctitis. He takes canasa 1000mg nightly for maintenance. Before his flare last year, he used to take canasa twice a week, but since he did have a flare at that dosage, his doc things there's no harm in taking canasa nightly for maintenance. Probably sometime next year, we will try to taper to every other day. I would strongly recommend not stopping maintenance therapy altogether. Canasa can help prevent flares, and also help prevent the spread of colitis proximally in the colon - of course there are no guarantees, but I think UC in the form of proctitis is a far milder disease in most people than UC which affects more of the colon, and Canasa seems not to affect my husband in any negative fashion. He's been on it for over 4 years.

My husband also takes VSL#3. His doctor doesn't think the VSL#3 does his proctitis any good (he doubts that any beneficial bacteria make it all the way down to the rectum), but my husband takes it anyway as a preventative (to help prevent proximal spread of the disease further into his colon). Other folks on this board, take Asacol orally as well in addition to the Canasa suppositories for the same reason - to keep the disease confined to the rectum. My husband opted for VSL#3 instead of Asacol, since he didn't want to take any more pills than he needed to, and felt the bacteria was a more holistic approach.

Hope this helps. Holler if you have more questions.
Husband with Ulcerative Proctitis
Diagnosed March 2003, 1st Flareup after diagnosis Apr 2006
Currently in Remission
Nightly 1000mg time release Canasa
Even though he has no symptoms, he's on VSL # 3 (1 packet daily) for prevention
Was on the SCD, but we stopped after 4 months of no symptoms - he's doing fine on a normal diet


PV
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Date Joined May 2006
Total Posts : 1177
   Posted 10/15/2007 5:26 PM (GMT -7)   
Remission means that the ulcers have healed and that you are back to normal - ie. you can eat most things you would normally have been able to eat without problems, have no more than 1-3 well formed bowel movements per day. Basically no ulcers, no bleeding, no mucous, formed stool, no urgency problems, no more than 1-3 bms per day, and ability to eat what you were able to before the flare without discomfort. That's my definition of remission.
Husband with Ulcerative Proctitis
Diagnosed March 2003, 1st Flareup after diagnosis Apr 2006
Currently in Remission
Nightly 1000mg time release Canasa
Even though he has no symptoms, he's on VSL # 3 (1 packet daily) for prevention
Was on the SCD, but we stopped after 4 months of no symptoms - he's doing fine on a normal diet


butterfly1
Regular Member


Date Joined Jun 2007
Total Posts : 112
   Posted 10/15/2007 5:52 PM (GMT -7)   
I definently have urgency and stomache pain. No blood, mucos and my stools are formed. I take Asacol even though it makes me feel awful.(tired,headaches,and upper and lower abdominal pain. I had a colonoscopy a couple of mnthes ago and was told by my gi that im in remission. I dont feel like im in remission other than no bleeding or diarrhea. I often wonder if im crazy or possible have something else going on?

maddi1
Regular Member


Date Joined Oct 2007
Total Posts : 22
   Posted 10/15/2007 7:32 PM (GMT -7)   
for those of you with ulcerative proctitis, can you tell me how far up in the rectumn the inflammation has spread.  I am at 10-12cm or 4-5 inches.  Also should I ask my doctoe to consider enemas because I am concerned that the supposities only coat up so far in procimatey. eyes
oct 2007 dx ulcerative proctitis. on canasa suppositories & cortifoam


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 10/16/2007 12:49 AM (GMT -7)   
I have proctosigmoiditis, to 25 cm. Because my life is always interesting, I also can't tolerate Mesalamine, so have always had to treat by the oral route.

Judy
 
Left-sided UC diagnosed 2001.  Taking Colazal and Imuran, Remicade infusions and moving into remission. Finally off steroids after four years! 
 
Now in remission for almost two years. Remicade has been my wonder drug.
 
"If you spend your time second-guessing your past decisions, you'll never have time to enjoy today."


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 10/16/2007 6:33 AM (GMT -7)   
Maddi1:
My husband's UP is to about 4 inches. My husband's doctor explained to him that Canasa not only covers the rectum (about 6 inches or 15 cms), but also further up, and that since my husband's colitis is confined right now to the rectum that this was sufficient (in terms of medication), and did not recommend taking enemas (which are more difficult to take than suppositories), or oral medication. He does take VSL#3 one packet daily in the hopes that since it's supposed to be as effective as asacol in keeping folks in remission, that it will help keep his colitis confined to the rectum.

It's been our experience that Canasa is effective at controlling my husband's disease, your mileage may vary. If you feel you'd be better off with the enemas, then, you should get the enemas - because I've never read anything that said that the enemas are not good for proctitis, or you can alternate between the canasa and the enemas perhaps. I'd hate to feel later on that I didn't do everything to control / keep myself healthy; so if you think the enemas will help with that, I don't see a downside to switching to them.
Husband with Ulcerative Proctitis
Diagnosed March 2003, 1st Flareup after diagnosis Apr 2006
Currently in Remission
Nightly 1000mg time release Canasa
Even though he has no symptoms, he's on VSL # 3 (1 packet daily) for prevention
Was on the SCD, but we stopped after 4 months of no symptoms - he's doing fine on a normal diet


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 10/16/2007 7:08 AM (GMT -7)   
noticed on my chart at GI's today that I was .25cm in 2000 colonoscopy and .30cm in 2005 colonoscopy.  Says my symptoms are typical of proctitis, freqeuent, crampy bm's with small amounts of stuff and D.  Just started imuran today, will see how that goes.

Beth, 32
UC Diagnosed March 2000
Hydrocortisone enemas 1xday
Lialda 2.4mg 1xday since 8/24/07 ;prev. Asacol 4800mg day,Calcium and Vit D 500mg 3xday.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60mg 1xday, Simvastatin 20mg 1xday, Diovan 80mg 1xday. Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.


maddi1
Regular Member


Date Joined Oct 2007
Total Posts : 22
   Posted 10/16/2007 9:10 PM (GMT -7)   
pv,
when your husband was dx in 2003 was it at 4 inches then?
oct 2007 dx ulcerative proctitis. on canasa suppositories & cortifoam


NIcepeter
Regular Member


Date Joined Sep 2007
Total Posts : 72
   Posted 10/16/2007 10:27 PM (GMT -7)   
VSL # 3 may help. Doctors' words are not holy as we sometime know more on one disease as patients. I worked at diffrent hospitals. I know patients do have do some their own study too.

I take fish oil,Aloe Vera. They seem help some. Propolis helped me most, but it caused rashes in my groin, So I quit taking it. I know Chinese medicine sometimes can cure it. I will keep you updated on this issue. Thanks. Peter

PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 10/17/2007 6:54 AM (GMT -7)   
Yeah, that part hasn't changed so far. The area of ulceration and inflammation since 2003 has been within the first 3-4 inches of his rectum (doc says . it's more like 3.5 inches around 9 cms) I do think the canasa has helped keep him in remission and prevent proximal spread of the disease. I hope it never gets any worse, but of course, only time will tell. Hopefully other added measures, like cutting down on sugars, taking the VSL#3, and a daily fish oil supplement will help keep his disease controllable as well.
Husband with Ulcerative Proctitis
Diagnosed March 2003, 1st Flareup after diagnosis Apr 2006
Currently in Remission
Nightly 1000mg time release Canasa
Even though he has no symptoms, he's on VSL # 3 (1 packet daily) for prevention
Was on the SCD, but we stopped after 4 months of no symptoms - he's doing fine on a normal diet


maddi1
Regular Member


Date Joined Oct 2007
Total Posts : 22
   Posted 10/19/2007 8:06 PM (GMT -7)   

pv,

Forgive me, but all this is new to me.  What is vsl#3 and why no sugar?  Is he doing canasa suppositories nightly or is it a pill?  Has he always since dx taken canasa every night?  My doctor does not give me any feed back on a lot of stuff.  I feel like I am learning so much from everyone else that has dealings with this disease.  My doctor basically said this in a nut shell- no special diet is needed, no other vitamins or minerals other than a multi vitamin is need other than cortifoam to get it under controll and suppositories for 3 months which is our next appt.  He did add that ulcerative proctitis is a mild form of uc and that in most cases it usually stays contained into the rectum.  He did mention that if it is going to spread that I have no control over it and to not dwell on it since it is out of my hands, which made me feel horrible!  In addition he said that I could have occasional flares ups through out my life or some folks never have another episode again.  Can you shed any light on what your husband has been told and has learned about the disease.  I am only 33 yrs old and have always had good health and it just bothers me why me immune system is attacking my lining in my rectum!!!  thanks in advance for your help!


oct 2007 dx ulcerative proctitis. on canasa suppositories & cortifoam


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 10/20/2007 8:23 AM (GMT -7)   
VSL#3 is a probiotic. You can read more about it here: http://www.vsl3.com . It is pretty expensive, but if you compare all the probiotics on the market, it has the highest payload (450 billion bacteria). Also, a small clinical trial showed that it is as effective as asacol (oral 5-ASA medication) at putting and keeping people with ulcerative colitis in remission.

Your doctor is correct in stating that the course of this disease is unpredictable. However, there are things you can do, to try and control this disease. We prefer to not take a fatalistic attitude towards this disease (your doctor needs to encourage you to do everything you can to keep yourself healthy and to not be so fatalistic). Folks here on the board recommend "treating both ends" - ie. taking oral 5-ASA medication (like Asacol) and suppositories/enemas (Canasa/Rowasa), to keep things under control. The idea is that you may help prevent proximal spread of the disease by pre-emptively taking oral medication as well as suppositories to keep things calm in your colon. However, my husband did not like the idea of taking additional medication (even though I've heard Asacol is usually fairly gentle). Since we read that VSL#3 is as good as Asacol at putting and keeping folks in remission, we decided he'd take VSL#3 (which doesn't really have any side effects). VSL#3 (in large doses) may have the same effect as taking Asacol (of course this isn't proven, and only a small clinical trial validates this). Other folks on this board use other probiotics such as Culturelle, Acidophilous pearls, etc. In general, it's a good idea for folks with Ulcerative Colitis (or Proctitis) to take probiotics and eat a lot of yoghurt.

A lot of bacteria live in your colon, and form the flora of your colon. One theory of IBD is that folks with IBD have an imbalance in the bacteria in the colon (whereby there is an over abundance of bad bacteria and not enough of good bacteria) and this eventually causes the mucous barrier in your colon to bread-down, resulting in the bad bacteria adhering directly to the colon wall, resulting in an immune reaction that causes ulceration and inflammation of the colon. Understand that I'm not a medical genius - this is just my understanding of the theory. The exact mechanism of how the bad bacteria result in inflammation is not yet understood. However, one thing I've always noticed is that anytime my husband eats or drinks anything sweet, he has a lot of gas (produced by the bad bacteria in the gut). So, it wasn't a stretch to believe that controlling his diet to eliminate unnecessary sugars, starch, and caffeine would help him (which it has - he is far less gassy, and his bowel movements are a lot more regular, and his stools are well formed and easy to pass).

When my husband was first diagnosed with ulcerative proci***, our GI didn't alert us to how serious this disease can be. He just said, take canasa and cortifoam (for a short while to get things under control), and continue to take it and you'll be fine. When first diagnosed, my husband took canasa nightly to get things under control, and then slowly tapered to once every other night and finally to twice a week. His doctor did tell him that he can never completely stop taking canasa. My husband had his second flare in april 2006, and this time his symptoms were a lot worse than the first time (plus we didn't recognize symptoms of a flare - we thought it was an infection, or something like that, so it took a while to treat it). He had to take prednisone to get the flare under control, and has since then remained on canasa nightly. We may try to start tapering to once every other day next year.

When in a flare, our doctor recommends a low residue diet. Like just plain white rice and chicken, plain pasta and chicken, etc. The reason is that the "roughage" (fiber and bulk that veggies can add) can irritate the colon (and since it's already ulcerated, it can hinder healing). He said when not in a flare, my husband could pretty much eat anything. However, after a lot of the reading we've done, we've decided to limit his sugars, add more whole grains (brown rice, whole grain bread, etc), and eat a lot of yogurt. I think in general, we are a lot healthier than before (myself included).

When my husband was flaring last year, he had difficulty keeping most food down, and was fast losing weight. We tried the SCD (Specific Carbohydrate Diet) to see if he could get more nutrition with it, and it really did help him. He had a lot of gas pain after eating, and the SCD helped keep the gas down tremendously (because you don't really eat very many carbs with the SCD). We find that taking the VSL#3 has a similar effect to the SCDiet in terms of gas reducation. If you're having trouble with lot of gas pain, and getting effective nutrition from your food during a flare, I would recommend trying the SCDiet. There's lots of information about the SCDiet if you search for it online.

Your doctor has given you the correct information - that the course of this disease is different for each person, and that despite your best befforts, the proctitis may spread to become even pancolitis. It seems that he's got you on the right medication right now to get your flare under control. You will likely have periods of remission and periods of flares, or you may never have another flare. From what I read, most people believe that proctitis for the majority of people doesn't spread proximally. However, another study I read said that the chance of proximal spread for the disease was about 50% at 10 years (but of course a statistic is just a statistic until it happens to you). For us emotionally, it was difficult to accept that he's got a chronic disease that can have such an unpredictable course - only time will tell how this will affect your life. The only thing you can do is to learn more about this disease and do your best to do the right things and try to control the disease. This forum is a great place to do that, so I think you're on the right track.

One other piece of advice I have for you is to always be conscious of your body - if you have cramping, stomach pain, your stools get narrow, or you get constipated, or you have a little mucous in the stool, or you have a spot of blood, etc. The best way to control a flare is to treat it at the first sign of problems. I'd make sure that you have a prescription for canasa and the cortifoam always available, and learn how to adjust your dosage as your body indicates. Of course this is trial and error, and you'll just get better at this the longer you have the disease. Also, do not take anti-biotics, or asprin or any non-steroidal anti-inflammatory medicataion, becaues they can worsen your UC. Tylenol is ok. If you have to take antibiotics, consult your GI to determine which antibiotics are safest for people with UC, and take a lot of probitoics when you take these antibiotics.

My husband also takes fish oil suplements and a daily multi-vitamin, in addition to his VSL#3. So far this stuff seems to be working for my husband, but of course that could all change tomorrow. I wish you a speedy recovery. I hope you have a better grasp now of this disease.
Husband with Ulcerative Proctitis
Diagnosed March 2003, 1st Flareup after diagnosis Apr 2006
Currently in Remission
Nightly 1000mg time release Canasa
Even though he has no symptoms, he's on VSL # 3 (1 packet daily) for prevention
Was on the SCD, but we stopped after 4 months of no symptoms - he's doing fine on a normal diet

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