Proctitis (Ulcerative)

I was a diagnosed with Ulcerative Proctitis a couple months ago, and I am struggling to stop the bleeding I see only the toilet paper and in streaks on the bowel movement itself. I thought maybe someone has some advice to help me. I am 34 years old, male, otherwise healthy, active, fit, Ashkenazzi Jew. After a colonoscopy the GI doc prescribed Canasa (mesalamine). It seems to help a little. Bleeding is my only symptom. I might have mild joint aches but not sure. I am aware Ashkenazzi Jews get Ulcerative Colitis more than any other ethnic group. No one in my family has had Proctitis or Colitis except my grandfather did in his 80s , and after a brief hospital stay he never had another episode after they had him improve his diet.

Look at this timeline closely... I was in the Dominican Republic 2 months prior to the onset of the bleeding. In the Dominican Republic, I got food poisoning from eating some bad meat. I was throwing up and had diarrhea for 24 hours. A pharmacy gave me oral Fleet, which flushed out my GI tract. I was back to normal and not feeling sick any longer within 24 hours of the onset of initially feeling ill. At that point, I was so disgusted with food that I became a macrobiotic vegan. I cut out all meat, fish, poultry, refined sugar and sweeteners, oil, bread, juices, and salt. For the next 2 months I had a very diverse vegan diet of beans, vegetables, fruit, tofu, and water. EXACTLY ONE WEEK before the onset of bleeding I started taking the following: 1) Grapeseed Complex with Resveratrol Herbal Supplement pills daily, 2) Calcium supplement pills daily, 3) Multivitamin pill daily and 4) Fish oil pills daily

5 minutes before the onset I had just gotten done eating a whole bunch of delicious grapes, went to make a #2 (bowel movement) and wiped my butt and saw very light pinkish color on the toilet paper for the first time in my life. Over the next couple days until my appointment with the GI doc the blood was visible on the toilet paper, and got more apparent bright red than the original pinkish I saw. While waiting for the doctor's appointment, the nurse at the office suggested Metamucil and Preparation H. I used both and they did not alter the visibility of blood on the toilet paper. I continued to use the Prep H until it ran out but before getting the pathology results from the biopsies taken during the colonoscopy. I also continue the Metamucil to this day. Sometimes there will be nothing on the toilet paper at all (no stool, no blood), but if there is anything, there is blood (the Psyllium Husk forms a rubbery coating on stool, or indeed may make the stool rubbery and so slippery it just nicely exits the rectum without coming close to abrading the delicate mucous wall of the rectum).

The colonoscopy revealed ulcerative proctitis. This is good news in that whereas other forms of Inflammatory Bowel Disease, and indeed other forms of Ulcerative Colitis (of which Proctitis is a form) such as Colitis itself do in fact lead to greater incidence and likelihood of developing colon cancer, proctitis does not. Proctitis suffers are at the same risk as the general population to develop colon cancer. It's also good news that the blood is my one and only symptom.

Ulcerative Proctitis is bad news though in that you can be at a greater risk to develop an infection (dirty stool passing eColi and other bad things in to the blood stream via open wounds (uclers) in the rectum), as obviously many of you knoow. The cause of Ulcerative Proctitis is unknown (as many more of you also know).

I understand Mesalmine adminstered rectally often will eradicate bleeding but it seems not to have in my case after 30 days. The pharmacist said it "will usually stop bleeding within a couple days." I also tried some Slippery Elm bark with an eye dropper mixed with water over a period of a couple weeks. That did not seem to do anything. I tried pro-biotics Acidophillus pills. That did not seem to do anything.

After the colonoscopy, I added grilled salmon back into my diet, and also olive oil (added only after cooking, not during or fried, etc.). These have not helped, although they do taste good and and I think they are healthy enough to keep in my diet.

Although the causes for Proctitis are not known, it is known that the body's immune system starts attacking the walls of the rectum even though the wall cells are friendly cells and the immune system is only supposed to attack bad cells. It is theorized that a virus or bacteria might cause this to happen. Or maybe that Fleet stuff that flushed out my GI tract when I got sick a couple months before planted the seeds of this illness. But, that Fleet gave me the same result as the preparation for the colonoscopy (they give you MoviPrep which flushes you out big time)....bowel movements started coming out as a stream of clear liquid (interestingly, I didn't bleed when there was only liquid coming out of my butt). When I got sick in the Caribbean, it was not the first time in my life I got what felt like the very same food poisoning -- it was like a burping of methane gas taste in my mouth which was so disgusting tasting it would make me throw up. During that 24 hours of illness, when I would go to make a bowel movement it would smell the same as the burp coming out of my mouth...incredibly disgusting. But as I say I experienced the same burping methane taste in mouth food poisoning-like illess 3 other times in my life...at age 8 and then at 22 and then 30 and then this time at 33.

So, please feel free to comment on any part of what I've written here or ask me for any points of clarification. My essential questions are:

1) Although organized Science only theorizes this MAY result from bacteria/virus, what is your general feeling about whether I got this from some bacteria or virus I picked up in the Caribbean
2) Did I kill good bacteria in my GI tract with the Fleet taken orally when I got sick there
3) Did the supplements I started taking 1 week prior to seeing blood for the first time in my life contribute to the onset of the proctitis? (calcium, Resveratrol, multivitamin, fish oil)?
4) Did my diet change to vegan (plus no salt, sugar, bread, oil, most fats except those in beans, naturally occuring in vegetables) 2 months prior to the onset of proctitis contribute to its onset? (The doc said if I wasn't on that diet, he'd recommend I be on it)
5) What else can I try to get the bleeding to stop on the toilet paper (it's extremely disturbing to see it happening for months, even if it is thankfully my only symptom)

Post Edited (AsherCool) : 9/7/2009 5:34:45 PM (GMT-6)

I began with proctitis and while it may be seen as the most mild type of IBD, it can be extremely difficut to treat and can progress to worse forms of IBD. My proctitis has spread and now I have UC. My doctor told me in the beginning that there was a "small" chance it would get worse and of course, mine did. I couldn't afford medication and I didn't know about the patient assistance programs through manufacturers so I stopped taking medication all together and quickly went into an awful flare. If Canasa is not helping you, you may need oral meds. I would continue the Canasa even if you need oral meds. You could also try One canasa morning and one night, that may help...

I can't say whether the food poisoning has anything to do with your current condition although I would think it was not the main cause. I always wonder what "casued" my UC but I have come to believe it is just me and I am stuck with it. If you have a bacteria or something, you should be able to fix it with the right medications. Have you had stool tests?

People here told me that you can use it morning and night. My first GI was a big believer in using Canasa to keep my flare at bay and she had mentioned using it 2x a day but at that time once a day was enough. I lost my insurance and stopped taking Canasa all together, I think that contributed to the progression of my proctitis to full on flare. I still wonder if I would have gotten to the point I got to if I had been able to continue taking Canasa. There are a lot od people on this board with extensive experience using rectal meds. You could start a topic asking how many times you can use different treatments and they will probably come out of the woodwork with some answers. If you need something more powerful than Canasa, you can always try retention enemas at night, Canasa in the morning. A lot of people here have had a lot of success combining different rectal and oral meds. I feel like I am lucky to be able to manage my condition with 5ASAs right now.

You may not like my reply but rather than writing such a big story, you could have spent that time reading the forum more thoroughly, reading some old posts.

Still, cut long story short, its inflammation, it will be heal in a while but if you are not on cortisone then it will take time. You are lucky that your condition got diagnosed quite soon. As long as you don't have stomach cramps and your frequency is less than 5 a day, no worries. Take it easy, go through the old posts and you will have answers to your question. Frankly, it doesn't make sense to repeat everything here (and it will be too much of info to repeat)

Just a word of caution, there are great chances that it will become colitis in a while (my own story) so be prepared. Keep a food plan.

My doctor, who also has very impressive credentials, told me my UP probably wouldn't get worse. It got worse. I guess I am one of the unlucky ones. I hope yours remains mild. Mine is still considered mild I guess but it definitely moved out of the rectal area and further up my intestines requiring oral and rectal treatment.

Do you mind if I ask you what country you are located in?

Yes, liquid Fleet (vs. Fleet enema) is indeed taken orally. Maybe it's not available in the states. I think it can be described as a highly potent laxative...seems to produce the same effect as MoviPrep in terms of passing cleaner and cleaner water through the bowels until you have nothing left to move.

AsherCool,

"1) Although organized Science only theorizes this MAY result from bacteria/virus, what is your general feeling about whether I got this from some bacteria or virus I picked up in the Caribbean"

I too was Dx with UP after a trip to Mexico and food poisoning.

"2) Did I kill good bacteria in my GI tract with the Fleet taken orally when I got sick there"

Maybe. I took Antibiotics for many years to clear up my acne prior to getting Dx. I think of the many yet undiscovered strains of bacteria we have in our gut, some of them protect us from this apparent virus that inbeds itself in the rectum tissue. Killing off all our good bugs makes us vulnerable, add the virus and bam.

"3) Did the supplements I started taking 1 week prior to seeing blood for the first time in my life contribute to the onset of the proctitis? (calcium, Resveratrol, multivitamin, fish oil)?"

I think not.

"4) Did my diet change to vegan (plus no salt, sugar, bread, oil, most fats except those in beans, naturally occuring in vegetables) 2 months prior to the onset of proctitis contribute to its onset? (The doc said if I wasn't on that diet, he'd recommend I be on it)"

Raw veggies and tough fiber can be hard on our systems but no, I doubt it contributed.

"5) What else can I try to get the bleeding to stop on the toilet paper (it's extremely disturbing to see it happening for months, even if it is thankfully my only symptom)"

I thankfully also suffer only from minor bleeding and mucus. I rarely get an cramps and only have about three BMs per day. Vitamin E enemas help me with the bleeding, the thick oil coats the ulcer and forms a barrier. This is what I believe...

I hope this helps you, good luck!

Hi,

I must make it clear that I am not medically qualified and I can only speak of my own experience.  I would, therefore, stress that, before acting on anything I say, it is important you discuss it with your medical adviser since the treatment which helped me may not be suitable for you.

In my case, the bleeding problem arose after radiotherapy for prostate cancer.  The problem continued for some months and the blood flow was so heavy that my G.P. was very concerned at the extent of the blood loss and felt that, if it continued, she would have to arrange for blood transfusions.  My oncology consultant was no help whatsoever and simply said I should have to learn to live with the problem and a local gastroenterologist had no idea whatsoever what to do about it.  However, My G.P. eventually arranged a consultation with a gastroenterologist in London (England) who recommended sucralfate enemas and this had a dramatic effect and virtually cured the problem within two or three weeks. I still occasionally get slight traces of blood but nothing like it used to be.

Hope this is of some help.

Hi Asher -
As my son likes to say, "Did you know that 85% of statistics are made up on the spot?"
Sorry, couldn't resist the attempt at humor.

I'm sorry you have this persistant low flare!! My initial experience was somewhat similar. I had blood on the TP and sometimes on the stool, and when my regular doctor did a sigmoidoscopy, he couldn't see any inflammation. He referred me to a GP - who found out that the inflammation was SO close to the bottom than the other doc had gone right by it with the scope!

I was put on sulfasalazine at that point, which did heal it up. (This was in the days before rectal meds and other oral 5 ASAs.)

What I have done for low inflammation is to insert the enema, squirt a little in, then back it out until the tip is almost out again, and squirt some more..... then put it back in farther to administer the rest.

As to your immune system questions... I don't know; I sure have had my share of chest colds and viruses since being diagnosed.

Best of luck to you.

Interesting theories/ statistics Ashercool there are so many out there. I often think that my trip to Jamacia about 8 weeks prior to my diagnoses had a major impact as to the onset of my symptoms. I also know though that I was predisposed to auto-immune conditions since my mother has MS & sinus issues. On top of that I moved to an area that is in a valley in northeastern america which has one of the highest rates of people with seasonal allergies.
I NEVER had an allergy in my life until I moved here! Also another possible u/c connection. It was after living here awhile I was diagnosed.
While researching I came across the "many forms" of U/P, U/C I am not sure what exactly the medical term for it is but there is an actual
diagnoses for foreign bacteria induced proctitis/colitis due to parasites "obtained" by a foreign country. I am sure in your research you will read it
as well somewhere. Really that's the best thing you can do for yourself..to get educated & it will consume you for awhile. Sometimes I feel like a rat in the wheel though (maybe I should be, then they could experiment on me!) b/ bottom-line...still no concrete info.

To touch on your current issue, I found that with my initial diagnoses which was U/P in 03' my drug therapy started with Asacol 400mgs 2 pills x3 daily
and canasa suppository nightly. Worked great each flare there after until the my first pregnancy & I flared in the third trimester & so began my introduction to prednisone & rowasa enema's p.m & canasa in the a.m. After that pregnancy in 07' scope showed U/C confirmed w/the biopsy.
I WISH at that point I would've started a better diet regimen. What I am finding now in my case is that diet & supplements which include a probiotic
4 times a day has really brought me great relief. I have altered many things including my gluten intake which seems to be working. I was becoming prednisone resistant but have found this go round' the right "combination" that works for me (& am happy to report blood free for 7 days now...YES!)
The key is finding the combo that works for you...but you will. Good luck!

Would it be overly intrusive for many of us to start promoting that UC posters either state or add to their signature their:

1) country of origin
2) country of residence
3) height and weight
4) ethnicity
5) net worth (ok.....that one is a seems really over the top)

Why? Because those things ALL impact incidence of colitis (except height/weight (i.e., a body fat index gauge), though it would be interesting to see if people are mostly slim because it's hard to stay/get fat with UPUC), and it could be germane to any discussion about UPUC.

Ashercool- were you ever on antibiotics before your proctitis symptoms appeared?