Proctitis — Colitis’ Red-Headed Step Child

I Might Have Colitis, But Not Sure

Introduction:

Hey Everyone — I’m a 28 year old male, 6’0″, 180lbs. I live an active and healthy lifestyle; I love sports and I play hockey, baseball, golf. No known allergies and never been a smoker (of cigarettes…).

Full Story:

I’ve spent a significant amount of time on this website educating myself about UC. All of the positive stories and words of encouragement posted here certainly make me realize there’s light at the end of the tunnel.

My problems began back in April of this year. I got up from what was my ‘morning ritual’ (my bowel movement regularity would have put a German train schedule to shame) and noticed that there was blood on the toilet paper and the outer diameter of my stool. Needless to say, this freaked me out completely — so I got right on the internet to try and diagnose this problem myself. After only a few minutes of searching, it occurred to me that it must be a hemorrhoid. That made sense to me (although I had never had one before), since I sit all day at a desk job and am also a regular at the gym and workout very intensely. I put this in the back of my mind for the time being.

My real concerns began a week or so after that when the blood wasn’t gone, but was noticeably worse. The toilet bowl looked like a crime scene after I got up. I decided to get this checked out. I went to my family doctor for a full physical and to explain my problem. He immediately concluded ‘colitis’ since there were several pretty big stressors in my life (I had just bought a new house in January, and am getting married this coming February). He sent me to the lab for blood work which all came back normal. I was never in any physical pain — my symptoms were (are) just the growing irregularity and frequency of my bowel movements combined with an increasing amount of blood loss.

My condition only deteriorated further from there until I finally had enough and went to the hospital. They were of no immediate help, but luckily I was shoved in line to have a colonoscopy about a week later. The colonoscopy revealed what my current GI calls ‘proctitis’ — which in my case is inflammation of the last 12-15″ of my colon. I was prescribed a Salofalk (5-ASA) enema. I took this for 2 weeks straight and saw great improvement. After the 2 weeks, I was virtually symptom-free for about 5 weeks; “back to normal” I thought. My symptoms then gradually reappeared so I went back to my family doctor thinking that all I need is more Salofalk and I’ll be fine (I would have gone to see my GI instead, but I need schedule about a month in advance). My doctor gave me another prescription for the Salofalk enema, but this time it just didn’t work.

I went back to my GI and he then prescribed Prednisone (20mg/ day for 1 week, 15mg for a second week) and Mezavant (5-ASA) oral tablets daily for 6 months. A week and a half in to this, I was near ‘normal’ again. However, something happened then (I went out and had several beers, spicy chicken wings, and also got the first signs of catching a cold) that threw me back to square one. The GI then upped my dosage of Prednisone (40mg / day, tapering down to 30mg, 20mg etc.) and this started to work for me again, but not for long. Symptoms returned roughly on the second day of my 20mg/day dosage.

This is where I am today. As I said, I’m not in any pain whatsoever. My heart goes out to those who suffer from similar conditions and have to put up with the pain. I’m only concerned with the irregularity of my bowel movements and seemingly endless supply of blood I flush down the toilet several times a day. I have not missed work (although maybe I should be docked a sick-day or two considering the amount of time I’ve spent in the washroom) and I still go to the gym 4-5 times a week and have not lost any weight.

I am seriously considering starting the SCD, but my family doctor (who I’ve known my entire life and can’t say enough positive things about) feels strongly that my diet will not impact me like other people with UC since my inflammation is right at the ass-end (pun intended) of the digestive tract. Can anyone else share their opinion on this? I love my carbs, I love dairy, I love beer and I love to consume as much of all of these things that my heart desires. Starting the SCD could throw a serious wrench into my holiday plans. I am willing to try the diet, but I only want to do so if other people feel confident that it can be beneficial for me. Right now my doctor has the only vote, and he says that in my case, diet doesn’t matter.

Written by “Toronto”

Submitted in the Colitis Venting Area




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9 Responses to Proctitis — Colitis’ Red-Headed Step Child

  1. Jessica December 6, 2011 at 12:45 pm #

    Diet DOES matter and has a big effect on UC.

    I was similar to you in that I didnt wanna change my lifestyle. But it got to the point that I was so sick of the medications and their side effects. At that point I was deseperate to get better and start living a normal life without the blood, pain and urgency.

    I started SCD and within a month the blood and urgency were subsiding. I have been on SCD for about 18 months now SYMPTOM FREE. I recently had a colonoscopy to see how I was doing inside. The docter who told me that diet would have no effect was shocked! THERE WAS ZERO INFLAMMATION AND NO SIGN OF THE UC! All he could say was keep up with whatever you are doing cause its working.

    I couldn’t be more happy, I have slowly started adding some illegals back into my diet now but I still remain with the principles of SCD.

    It works!

    Goodluck! :)

  2. Peter NZ December 6, 2011 at 6:18 pm #

    Hi Dimples,
    I’ve been dealing with same thing. I suggest you try “Colifoam”. You need a doctor to prescribe it though. I was in a real bad way recently and with this I am much improved.
    Better than a nod to a blind man,
    Good luck,
    Peter

  3. UC mama December 6, 2011 at 8:24 pm #

    Mine started out as Ulcerative proctitis, almost 14 yrs ago, but in the past 2-3 years has gradually gotten worse. Now up to about 40cm, used to be 10-15. I’m in my early 40’s, active, busy, etc. I’ve found if you’re not taking care of yourself it can get worse, spread and be harder to get under control. I love a martini, not a heavy drinker, but ideally a few times a week I like to partake. Unfortunately alcohol doesn’t always play nicely with an ulcerated/pissed off colon. Even though some drinks are better tolerated than others, you should baby your system so it can heal. Lessen stress, take it easy with the diet, and make sure you’re not training too hard. otherwise, this flare can go on and on…

  4. moxie December 7, 2011 at 12:11 am #

    I too was diagnosed with ulcerative proctitis (in 2004). I was also prescribed Salofalk (5-ASA) enema and it worked wonders. I was fine for about 4 years and then the symptoms came back. And when that happened I tried the SCD (no meds) and it worked immediately and I was symptom-free within a month. I stayed on the diet for a year, but then started to stray off of it. After a stressful year including a big move across the country, the symptoms came back. So, I went back on the diet (no meds again). It took longer to come out of the flare this time, but I finally did and am absolutely fine now (knock on wood). I believe the diet works. It’s not easy at first, but as time goes on, it gets easier. The diet is healthy and I feel great on it.

    Good luck.

  5. Katya
    Katya December 7, 2011 at 12:54 am #

    Hi there,
    I’m sorry to hear about your recent diagnosis. I have had UC for almost 6 years and it has always been mainly proctitis as well. Let me tell you, proctitis is very serious, it just refers to the area of the colon where UC is. And it can spread, anyway. Your immune system is attacking its own cells either way, the disease is active, if it happens to be at the end of the rectum like in proctitis it can still yield very debilitating symptoms and require all the same big guns in terms of medications and surgery. I was not in pain for much of the last 6 years either, but I was making urgent runs to the bathroom up to 25 times a day sometimes, and yeah, murder scenes in the toilet…or not in the toilet, that happens to a lot of people. Where you are in some luck with proctitis is that it can be addressed somewhat with enemas whereas if it was located further up the enemas would not reach it and you would have to rely solely on systemic medications, if medications is the basket where you decide to place your eggs.
    Luckily, you just recently were diagnosed, and there is a good chance you can improve your condition before it worsens. For many, including myself, the disease gets worse over time if left untreated or even if treated with medications. Many people on this site, including myself, have had a lot of success with diet, namely with the SCD that you can read all about here. I really wish I had known about it my first year of being diagnosed, I would have been able to avoid lots of years of suffering, both from UC and from the medications themselves. I now have a skin condition that was caused by medications I took to treat proctitis, it lives on without the medications…but I have to take medications just to treat the skin condition.
    Doctors told me and told many of us that diet would not influence the course of our disease. They were only basing this on what they had been taught, and I don’t hold it against them personally…but it’s easy to find fault in the health system without blaming any individuals. There are many things that are just being recognized in the medical field, especially in the western world, and research funding generally goes to areas where a profit can be made. The cause of IBD is still not understood, so the treatment/cure isn’t either. Clinical trials focus on pharmaceuticals, but an SCD diet trial is actually underway now from what I understand, the first of its kind.
    It probably seems like a pain to make major changes to your lifestyle the way SCD might require, but trust me on this, UC can make much more major changes to your lifestyle as it progresses, changes that you don’t choose.
    I hope I’m not being pushy at all, I totally know where you are coming from, but I swear, I’d give anything to have been told this stuff when I was first diagnosed. UC is a serious condition, and you have to address it seriously. Everyone rolls differently, but if you have an open mind to natural alternatives, the SCD diet is great and having a naturopath is also helpful. If SCD is too crazy, you might find some help avoiding gluten, soy, caffeine and other stimulants, dairy, spicy foods, corn, fried foods, and yes, alcohol. And look out for the ingredient carageenan in foods, it is thought to cause UC.
    As my condition eventually necessitated that I go to doctors really specializing in IBD I learned that popcorn is the number one food that lands people with IBD in the hospital… wish I knew that, popcorn had been a real killer so many times but I always thought it was something else in the meal! Also, seriously steer clear of antibiotics unless a GI doctor insists you take them for an infection related to UC or some other very serious infections cause they can really worsen your condition.
    Good luck and hope you found something helpful in this ranting, all the best to you.

  6. dave evans December 7, 2011 at 12:00 pm #

    Hi–the scd diet does help–i do a modified version which is no flour or sugar or dairy–I eat good (fatty) steak 2 times a week (6-8oz)and chicken grilled , pork, and some bacon along with some of the “nightshade” plants ie eggplant, potatoes, tomatoes because they are rich in nicotine. Your system doesnt like cigarettes but it does like nicotine!!! also no red pepper ie cayenne is deadly–and no carbonated drinks so i switched to guinness draft (remember IT’S GOOD FOR YOU slogan?) best of luck to you!!!

  7. George in Napa December 8, 2011 at 10:57 am #

    Hi Toronto,
    About 18 months ago I was also diagnosed with proctitis (from sigmoid area on down) so your story sounds a little familiar to me. My doctor told me the same thing that your doc told you….. he told me to give the SCD diet a try if I wanted to, but because my UC was at the “ass-end”, he didn’t think that it would help much.

    I have been on the SCD diet for 11 weeks. I also started prednisone the same day. When I stopped the prednisone, about 3 weeks ago, my UC symptoms slowly started to return. After 11 weeks, I think its too early to tell if SCD will work for me. Right now I am taking it week at a time. I do notice that I have an increase in energy since I’ve been on the diet. Perhaps thats because my body is now doing a better job of absorbing nutrients. I am considering adding a few “forbidden foods” back in my diet but I haven’t decided yet. My biggest problem with SCD is that I am losing too much weight. I think that I might be able to tweak some of the smoothies that Adam, the boss man here on this site, is making, to make them more fattening. I really need to gain back the 10 lbs. that I lost.

    Right now I have two immediate goals. 1). put this friggin UC in permanent remission and
    2). at least keep it from spreading farther up my colon. If the USD diet accomplishes either of these, the diet thing will be worth it.
    Feel free to e-mail me anytime. My e-mail address is napcats@att.net

    George in Napa

    • Garry December 8, 2011 at 2:23 pm #

      If weight loss is a concern, try goosing your shakes with frozen bananas or nut butters. Also, try adding avocado to your salads and snack on some cashews or cashew butter. There are lots of yummy SCD legal foods with high fat content that can help stem the weight loss.

      • George in Napa December 8, 2011 at 3:19 pm #

        Gary…. Thanks for the input to help me gain that weight!
        I will start putting bananas and nut butters in my shakes. I also like cashews so I will not have any
        problem pigging out on them.

        George in Napa

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