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    Old 03-25-2008, 07:31 PM   #1
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    Question Ulcerative Colitis/Proctitis, autoimmunity, and surgery


    In December of 2006 I was diagnosed with Ulcerative Proctitis (UP) via a colonoscopy. Two sigmoidoscopies later, the diagnosis still stands despite multiple courses of oral medication, suppositories and enemas. In fact, since my original diagnosis, my condition has never gone into remission and not a day has passes that I haven’t bled. I am 21 years old.

    At this point, my (second) gastroenterologist suggests prednisone; however I am very reluctant to accept his offer considering the harsh side effects associated with it. More so, I’m very reluctant to believe that prednisone is my saving grace considering NOTHING has worked thus far.

    I’ve read that some Ulcerative Proctitis patients, much like those of Ulcerative Colitis, will not respond to medical treatment. Why is this?

    I’ve asked both of my GI’s if surgery was an option for “extremely stubborn” UP, to which they both said “No way.” Why?

    Could it be that removing the affected colon is the only option for even some UP patients as well? Has anyone ever heard of surgery for UP patients?

    To this extent, I would like to ask you if removing the affected colon (in Ulcerative Colitis) CURES the patient of all the food sensitivities/allergies that usually accompany UC and UP, both of which are autoimmune diseases. As is the nature of such diseases, many patients (myself included) become “allergic” to common foods almost overnight… or at least it seems this way.

    In May of 2007, an allergist confirmed (via skin-testing) allergies to gluten, milk, yeast, sugar, eggs, corn, sunflower, banana and spinach, all of which were once consumed on a regular basis (some more than others) with no ill-response from my digestive system. However, soon after contracting UP and to this day, consumption of all aforementioned foods result in what can be described as nothing other than an “unpleasant experience.” Sublingual drops, prescribed to lessen my body’s autoimmune response, have done little to do so.

    So, I ask again. To anyone who can relate… did surgically removing the affected colon wipe clean the food allergies that came with your Ulcerative Colitis/Proctitis? Is this logical to assume?

    My theory as to why my UP has been extremely stubborn is because the root cause has not been addressed. That is, my newfound food allergies (which are nearly impossible to avoid mind you… but I do my best) are keeping my UP alive and well because even the slightest introduction of any of them into my digestive tract is enough excuse to cause a flare up.

    My question then is… what ARE my options?

    I thank you in advance.

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    Old 03-26-2008, 11:42 AM   #2
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    Re: Ulcerative Colitis/Proctitis, autoimmunity, and surgery

    Proctitis is Ulcerative colitis there are 5 different types of it, what you have only affects the lowest part of the rectum

    UC can be treated for flare-ups and remission but it can't be cured unless you were to have the whole colon and rectum removed and have a colostomy bag. But surgery is only considered for those not responding to medicine, poorly responding to different medicine for a few years or when at risk of developing colon cancer.

    There is not enough proven evidence of what causes UC it just happens from abnormal activation of the immune system. So there is no point holding on for hope it's going to go away by finding an underlying problem, because that is your diagnosis so that is the problem you need to concentrate on treating.
    Your food allergies have nothing to do with the UC because it is limited to your rectum your food has already been turned into waste before it reaches the affected area. There is no scientific research or back up that different foods causes a flare up unlike in Crohns disease.

    I have left sided UC which started when i was 18, i'm 20 now so i know all too well how frightening and disturbing the symptons are at a young age. But i was not diagnosed with it for another 7months when i had an endoscopy and luckily enough i had an appointment with my specialist the morning after i had a very very bad attack of my UC.

    I was put on Prednisoline (400mg) as a quick fix because anything ibuprofen based irritates my bowel. I was also put on Melasalazine a slow release anti inflammatory tablet, within 2 weeks i was back to normal and had my first solid bowel movement with no blood or cramps in 7 months.

    But then the Prednisoline side effects kicked in in the 6th week, everything listed i had, weight gain, fatigue, achey joints, puffy face, eye infections, hair loss, acne! Nightmare. So i stopped taking them and withing 6 hours i couldnt move my body was stiff and sore i was blacking out.. nobody told me i had to be weaned off them but within an hour of taking the Prednisoline i was fine.

    I went to see my specialist who said he would wean me off them gradually then just try me with the Melasalazine, the steroids are only a quick fix and permanent effects only take effect after 6 months of taking them.

    I strongly advise you try them because medication is the only thing thats going to help you.

    I was very vain and stopped taking all the medicine because i'm a dancer and part time model so acne and hair loss from the melasalzine did not fit in with my lifestyle and wow did i put my body through hell.

    But since breaking my foot 4 weeks ago i have found that drug abuse was the cause of my UC and i really really regret being so stupid.

    Maybe this website will help you more


    Hope i was of some help, good luck x

    Old 03-26-2008, 04:11 PM   #3
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    Re: Ulcerative Colitis/Proctitis, autoimmunity, and surgery

    Thank you for your prompt (and thorough) reply CandyKiss! Truth be told... I thought I was quite young for my diagnosis... but you have me beat by 2 years!

    Perhaps I wasn't clear in my initial post. I have in fact tried both oral and rectal medications, as well as varying combinations (Asacol, Lialda, Rowasa, Canasa and Cort-enemas) to no avail and certainly no remission. The only medication I haven't tried yet is Prednisone. Your testimony has made me second-guess my stubbornness, however.

    It also seems like you have found a root-cause for your UC (drug abuse)... I am still scratching my head on that one. My dad and grandfather (dad's side) both had polyps and that same grandfather was just diagnosed with Colitis... so I guess there's my excuse. Thanks, Dad!

    I wouldn't be so quick to say that foods cannot aggravate UC/UP symptoms, however, even if leading research does not support this. Prior to my diagnosis, I could eat anything and everything care-free. Don't be fooled: I am very slim, having the advantage of a fast metabolism, and have always been very health-conscious.

    Now, post-diagnosis, all foods that I'm apparently "allergic" to cannot be consumed without a revolt from my bowels EVERY time. This simply cannot be a coincidence.

    Think about it: we've covered that UC as well as UP are autoimmune disorders. Logically, this seems to give my theory some leverage as it is presumed that, in such scenarios, our immune systems are already dazed and confused. Mind you my food allergies seemed to appear concurrently with the onset of my UP. This too... simply cannot be a coincidence.

    I know gluten seems to be the scapegoat for every disease under the Sun nowadays... but there seems to be compelling evidence out there that a strict gluten-free diet is paramount for healing in certain individuals. Some testimonies of this can even be found on these boards (see: [url][/url]).

    Keeping track, I do not believe that my UP's location makes it immune, so to speak, from flare-ups triggered by food (if we can agree that it is capable of doing so) as an autoimmune response could very well be initiated the moment a "trigger food" enters the alimentary canal (mouth to anus). The response could then either single-out the already-compromised section of intestinal wall (the rectum, in my case) OR... the response could be far more generalized and widespread... it's just that the weakest link in the chain (i.e., my UP-infested rectum) succumbs because it cannot "defend" itself properly.

    If I've made no sense thus far... then consider this: why do people who are VERY allergic to certain foods (say shellfish, for example) breakout in hives? Did the shell fish have to physically touch the skin... or is the reaction coming from within? Similarly... is it the actual contact of peanut butter with the esophagus that causes it to close in individuals who are severely allergic to it? Or... is the source of the reaction taking a more behind-the-scenes approach? The same scenarios could be applied to airborne allergies. My point is this... it makes perfect sense to me that a local reaction can be caused by a trigger (be it food or whatever) that is not. It also makes perfect sense to me that a food could be this very trigger in some individuals, especially when dealing with autoimmune disorders where the immune system is already compromised and assumed ill. Why couldn't the immune system, then, erroneously respond to something harmless and cause a domino-effect reaction? Why is food only allowed to be a trigger in Crohn's Disease? Aren't Crohn's and Ulcerative Colitis closely-related in principle?

    I also couldn't help but to notice a healthy dose of cynicism in your reply, in regards to curing my disease. While I'm well aware UP is currently "incurable" by every stretch of the definition, I would still hold out hope that some radical, back-alley Chinese medicine doctor may have to key to our digestive woes. Perhaps I'm not jaded by the disease just yet... but I refuse to believe that Prednisone and a couple tightly-crossed fingers are my only options left.

    We always have to consider... what if prednisone just doesn't work? What if my UP is just too "far out of reach" (cause its RIGHT at the anus) for any oral medication to do any damage?

    Perhaps it's the Anatomy & Physiology courses talking... but if there's one thing I've learned it's that the human body, and its inherent processes, are amazing, precise and (above all) smart. I want to believe that my body is constantly trying to heal itself, inside and out, and is "consciously" trying to resolve my digestive woes. Perhaps it needs a little help... and perhaps that help will be in the form of Prednisone... but that does not mean there's a better alternative out there, somewhere.

    In addition to seeing two GI's, I've sought the advice from a local family practice who substitutes vitamins and herbs for conventional medicine. Their suggestions have far from cured me... but they've helped slightly. That's gotta stand for something.

    Old 03-26-2008, 06:49 PM   #4
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    Re: Ulcerative Colitis/Proctitis, autoimmunity, and surgery

    I can see the logic your trying to make of it,

    Food residues which have not been digested and absorbed in the small intestine pass down into the lower bowel and are fermented by the bacteria that live there. It is believed that an immune reaction against the bacteria living in the bowel is a very important factor in the cause of Crohn’s disease and that the activity of these bacteria can be modulated by diet.

    Diet does not work in Ulcerative Colitis, because the bacteria involved rely not on food residues but on substances which naturally occur in the bowel, such as mucus, for their energy requirements. The reaction to foods is quite different to allergy where special antibodies are circulating in the blood.

    This means that skin ***** and blood tests for allergy are of no help in deciding which foods need to be avoided.

    From when i was diagnosed with UC i was not told for another 3 months i would have it for life even though i had read it on so many websites but i didn't want to believe it.

    Maybe your not happy with my reply because i have stated i think it was caused by drugs (i don't even know if it is the case, but i would like to think now i have stopped taking drugs i won't have any more flare-ups because i have been fine for 4 weeks *fingers crossed* but only time will tell. Wishful thinking really.

    All the information i have gave you has come from the many websites i looked at, as you have probably done.

    I think maybe your confusing your food allergy reactions which will cause bowel movements, cramps, flatulence with the UC. The UC flare-up is the inflammation (ulcers) and when it gets irritated for example wind or passing a bowel movement the bleeding occurs. The food has already been broken down before it reaches your affected area, the foods wont effect you until they are in or are passing / passed through the effected area and at the rectum you would already be passing the food. It can't cause a reaction until it has reached the effected area.

    I went to a chinese doctor... firstly he told me i had a lot of heat inside me by looking at my red tongue (i had been drinking cherryade) then he told me my problem was with my liver. The stuff he wanted to sell me would have cost £65 a week, if i knew it was the cure i wouldnt think twice.

    Apologies if i have offended you in anyway, its worth giving the prednisoline a go before considering surgery unless the UC really effects your quality of life. Even if it gets the main flare-up under control so you can re-introdce the other medicines. Its just a shame either way you have to deal with unwanted symptons.

    Good luck, let me know how it goes if you want to chat. I'm an open person all my family /friends know the insides out of my bowel movements, funny enough they don't seem as interested in it as me lol

    Old 03-30-2008, 12:08 PM   #5
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    Re: Ulcerative Colitis/Proctitis, autoimmunity, and surgery

    This is such interesting reading. I was diagnosed with Proctitis two months ago (just before my 30th birthday after 2 months of bleeding), and I never understood why my doctor said that food doesn't effect my condition. It seemed clear to me that it did, but candykiss's comments are opening my eyes.

    There are two things that make me go to the bathroom before I would naturally have to go - coffee and a hangover. I thought for sure that hard alcohol and coffee were keeping me from getting better, but now I see that its the going to the bathroom more frequently that's keeping me from getting better. And I was going more frequently when I'd have coffee or too much alcohol. This is also true of overeating or having too much fatty/proceesed foods. Basically, anything that makes you go to the bathroom more (and therefore aggravate your ulcers) is going to prolong your flare-up.

    Now obviously using the right medicines to complement my efforts is a necessity, but am I thinking on the track? I'm trying to understand this disease to help treat it, but this is all so new to me. What you do you think?

    Old 03-30-2008, 04:23 PM   #6
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    Re: Ulcerative Colitis/Proctitis, autoimmunity, and surgery

    I had ulcerative colitis, at the age of 14, ii was a health enthusiast. I played football at county level, and one day i just got pains, i was cramping up soo bad. I was crying becuase it hurt so bad, oh becuase i was ill and i didn't know what happening to me,, i went to my local hospital and they sent me home with a few painkillers.
    i didnt get any better,, so i went back and had my appendix out, stupid idiots thought it was the end of my troubles but noo, they sent me homee, again with a few painkillers,, i got even worse, so once again my mum drove me up to the hospital and they kept me in, i got put into a private room becuase they thought i had a super bug ( which i didnt) and i went to the toilet and blood came out of my stool, i was SCARED, soo scared i didnt know what was going to happen,, i thought i was dying. The sent me up to a specialist hospital where i had an endo-scope, this revealed i had thickening of the bowel.
    i got worse and worse, i was going to the toilet over 17 times a day, each time losing blood, and weight, everything i ate went straight through me, by the end of my 1st month there i looked like a walking skeleton, and i was 6 stone, and that's not good for some1 6foot1.
    nothing worked, it was hope that we all knew wouldnt work, steriods didnt work.. my consultant was away for a week doing a semenar in Liverpool, so they sent an adult Peadeatricion to see me, and he said yeah, you need your bowel out, i cried once againn. so it came D-Day, friday the 13th of april 2007, it went well the operation, i was gaining weight fast and my ileostomy worked fine, and the suddenly i got illl, pain like before,, and i went down for ultrasounds and scans and it revealed collections of sepsis. so i went for emeergency surgery at 4 am, i got kept asleep for 36 hours. when i was in intesive care, the nurse said to my mum " there's a high chance your son wont live" and it was hell, they were treating me with drugs and one day i started fitting, once again, everything going wrong, losing weight, becuase i was on four ice cubes a day, nothing else,, cutting things down.. i had pancreatitis, 26 different scans, fits, urine infection, sepsis, kidney stones and lots more.
    i came out of hospital and i got better,, my luck was turning. i gained weight slowly but steadily and played football again,, with my Ileostomy, and im a goalkeeper so its goodd for me. i had another operation on the 10th december for an Ileo-anal pouch, and im still waiting for confirmation for my last one.
    if i can make it,,
    you can!!

    Old 04-08-2008, 12:15 PM   #7
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    Re: Ulcerative Colitis/Proctitis, autoimmunity, and surgery


    I was diagnosed with mild to moderate Ulcerative Colitis (left side of colon) last Monday. I'm so devastated! I'm 41 years old. Just 10 months ago I started living again after taking care of my mom with Alzheimer's and in the end lung cancer. I thought I would have a great life at least until I got in my 60's or around there but now, here I am, 41 years old and now I have to take care of myself ... a lot more than I used to. Anyway, I was put on Asacol 2 tabs 3 times a day. I started a week and a day ago. How long does it usually take to kick in? I'm still bleeding and having loose stool occasionally. Tomorrow I have an appointment with my GI doc. She said last week if I wasn't better she was going to put me on Prednisone. I don't want to be on that. I know the side effects are not good. Are there other meds I can take to get this disease under control?

    Thanks for any advice. I really appreciate it.


    Old 06-04-2008, 07:06 AM   #8
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    Re: Ulcerative Colitis/Proctitis, autoimmunity, and surgery

    I am 41 and was diagnose with Proctitis Colitis two years ago. I have tried enemas, salofalk etc. and nothing worked.

    As per my doctor, my last option outside of surgery is prednisone which he had warned me of side effects.

    I started with 60 mg daily for about 4 months and it worked. No more pain , fevers, aches that i use to encounter. After being on it for 6 months, I started getting the puffy face, weight gain, bad mood swings and recently acne on my face. I am now down to 15 mg daily and hopefully will be off it soon. For me, it was worth dealing with the side effects instead of the gruelling pain that I was dealing with daily. There are days, where I dont feel that way.

    I will start with Salofalk again after I am completely off Prednisone, which I look forward to.

    Old 09-08-2008, 08:45 PM   #9
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    Re: Ulcerative Colitis/Proctitis, autoimmunity, and surgery

    I was reading one of your other posts from a few years ago about your urinary troubles (cloudy, burning, and dribbling) I have all of the same symptoms and I was wondering if you ever found out what was wrong with you. I'm really eager to know if this is something I can fix, thank you!

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