Proctitis is Depressing and Evil

Introduction:

Happily married man with a beautiful wife and daughter. I’ve been a military man for 17 years and some. Living in Europe. Recently moved here from Asia.

My Colitis Experience:

I’m active duty military, and my story began in December 2010. Blood! To the doctor I went. Underwent a colonoscopy in January 2011 and was diagnosed with Ulcerative Proctitis. I wish I knew then how bad things would become. At that time, I didn’t have knowledge of the disease. If I had been more aware, I would have recognized the symptoms long before my blood showed up.

The time between my colonoscopy and biopsy results, I researched military regulations and discovered that this disease was a one way ticket out the door. I was about to lose the 20 year retirement I was working so hard for. My life was in disarray. I made the decision that I could not have that happen to me, and began my quest to treat myself without the need for medical oversight. No meds for me. My wife and daughter’s future were more important than my health, and if I could last just another few years and reach retirement eligibility it would all pan out.

During the following months, I spiraled downward in physical and mental condition. Mucous began to show, and I was hitting the bathroom constantly to let it out. All the while, I was researching alternative medicine because I needed it. Came across a book written a Mr. Mariana and started his regimen. Nothing against his protocol, but It failed. Blood and mucous never stopped. Constipation was a problem at times.

Bought Dr. Klein’s book, Self Healing Colitis & Crohns at the time I was on the previous regimen, so never started his method. During this period though, I had to move across the globe. Japan to Europe. Upon arrival in the UK, I began other methods to get my situation under control. At this point I had dropped 30 lbs and had bloody mucous and stools coming out of me frequently. The toilet water was fruit punch red. I was about to throw in the towel and head to the military hospital, but I began reading more…

I bought the SCD book and learned the Vitamin E enema routine. I also had a theory that I had a Candida issue. I started the SCD, Vitamin E enemas, and Threelac probiotic all at the same time in September 2011. Within a couple weeks, the mucous stopped completely. Praise Jesus. The bloody stools lessened. There was a significant reduction in blood, but not completely. I have gradually gotten better at the SCD as well, as I realized the many ways I was violating its protocol.

Here I sit now, end of January 2012,

quite depressed despite my improvements.

I still see blood. It is sometimes on the paper,

and mixed into the stool.

 

Bright red. Not much. Never enough to turn the water a different color, but still saddening nonetheless. I have just purchased Boswellia & VSL#3. It will be awhile before the Boswellia arrives. The VSL should be here soon. I am all normal except for the blood it seems. 1 – 3 bm’s per day. Sometimes blood. Sometimes not. No mucous. Rarely pain. Rarely bloating.

I go through one day at a time, following SCD to the best of my knowledge. My amazing wife is helping me the whole time. God I love her. Blood is minor, but haunting. I even bought a pack of cigarettes (former smoker 9 yrs ago) because of readings. By the way, the majority of my readings are published medical studies. That is what directed me toward Boswellia and smoking. No meds ever, all alternative treatments. It looks like there’s a deployment in my future. Who knows how I’ll manage that. I also have about 17 months before I can start actually getting seen by a military doctor without worry of losing my entire future.

I type this story in hopes that I can talk to other people, help them, express my feelings on this, learn, and hopefully feel some social support at a time when I need it most. This is totally out of character for me. A testament to my desperation.

written by “Desperate Husband”

submitted in the Colitis Venting Area

for more information on diet treatment, you can read more “ulcerative colitis diet” stories here




husband, military, retirement

35 Responses to Proctitis is Depressing and Evil

  1. Emily January 31, 2012 at 9:50 pm #

    Hey there,

    I also have ulcerative proctitis and was just reading about the specific carbohydrate diet. I noticed that cornstarch is on the list of illegal foods and realized that VSL #3 has cornstarch in it! :( I have also been taking VSL #3 and was very bummed to just learn this. Just thought I should let you know before you start taking it! I have been on and off Rowasa enemas and trying different diets in hopes of avoiding harsher medications. I’m about to try the SCD diet and am hoping for some results. Good luck- I hope the blood goes away!

    Emily

  2. therese January 31, 2012 at 10:22 pm #

    This is such a sad story. I hope you realize that as much as you value your financial future, you are taking a risk with your life and health by not seeing a regular doctor. I was recently diagnosed with UC a month ago and have been going through a roller coaster of emotions. (Thank you Adam for this site – it has really helped me through this difficult period. I hope you realize how valuable you’ve been to this community!)

    Have you tried Prednisone? Is there anyway you can get this medicine? Even through an internet drugstore? I would suggest trying to take a medium dose and see how it goes. This will get you off your flare and healing your colon. These steroids have been around a long time and are pretty safe in the short term – except for all the side-effects. But heck, I’m not a doctor. I think if you could get the flare to go away, you might be able to stay in remission with the SCD Diet, but first you need to kickstart your system by forcing it to turn-off your overactive immune system. That is where the short-term Prednisone comes in.

    I wish you all the luck and hope in the world!

    • patty February 2, 2012 at 12:06 am #

      I would urge you to NOT take prednisone, as was suggested, unless you are under a doctor’s care. Prednisone has dangerous horrific side effects and you have to gradually taper of it. My doctors monitor my blood and bone density, and keep a close watch at appointments for other side effects from Prednisone. It is NOT a safe drug. So, even if you find a way to obtain the steroids without a military or civilian doctor’s prescription, it is not worth the risk without being under a physician’s care. Since you have already purchased cigarettes, check out this article at http://onlinelibrary.wiley.com/doi/10.1002/ibd.3780040413/pdf
      There is a mountain of additional research on the subject available online and at this site.

      Adam has given us a wonderful tool to compare information and gain additional supports. It is a difficult illness to contend with and the medications have horrific side effects. Hopefully when you have satisfied the time you need to obtain your retirement if you are still struggling with this illness you will see a doctor. In the interim if your case becomes severe (mine left me hospitalized and needing blood transfusions, and I was under a doctor’s care, strictly following all medications that were prescribed by him to me), this illness can be life threatening, I hope you seek out appropriate medical treatment. Many people claim that the have had success with smoking, research also supports this, although we then need to way the health risks of smoking to the health risks of colitis and the dangers of the drugs used to treat it. I too returned to smoking and my UC has gone from severe with 30 and more trips to the bathroom a day, and needing to be hospitalized and needing blood transfusions, to 2- 5 trips a day, with little to no blood. I am off all of the medications, I was on three and continued to get worse, except for prednisone which my doctor is finally tapering off, but it has to be done gradually.

      I wish success for you. Please keep us updated about your progress.

      • Desperate Husband February 3, 2012 at 12:29 am #

        Thanks for replying. Adam has done wonderful at helping people communicate. It’s good to meet others with these problems. I’ll go to the doc when it is bad, no question. But I’ll hold out as long as I can first I finally made it to 4 cigarettes yesterday. Had to work up to that. Anything to stop the blood. I’ll stay at this point I’m fully willing to accept smoking downfalls for a couple years if it works. I have no plans of making this a lifelong commitment. :)

  3. Hillel February 1, 2012 at 2:03 am #

    I’m really sorry to hear about your situation. I’ve had UC for a while now and thought I’d share what’s worked for me.

    The SCD helped me tremendously but I found that making further restrictions were needed. If I’m in a flare I eat only chicken/fish/eggs and cooked veggies. The SCD allows fruits, nuts, honey and dairy. These can all be problematic.

    I found the VSL initially helped me but overtime made things worse. VSL contains bifidus which is advised against by SCD. I’ve also tried Boswellia but it didn’t help me (everyone is different though and I know it does help other people).

    Here’s the list of supplements I use:
    – Circumin: reduces inflammation
    – Lactobacillus acidophilus: single strain probiotic (SCD legal)
    – Digestive enzymes and HCL w/betain with meals: helps with digestion (especially if you’re eating mostly cooked veggies)
    – Fermented cod liver oil: supplies omega-3 and vitamin D

    Hope this helps…

  4. Desperate Husband February 1, 2012 at 5:06 am #

    Thank you for the comments.

    Emily-I based my VSL#3 purchase on this study. http://www.ncbi.nlm.nih.gov/pubmed/15984978. I was unaware of the cornstarch however. The product hasn’t arrived yet. Perhaps I’ll hold off and see how this disgusting smoking pans out?

    Therese-It isn’t my financial future that concerns me, it’s for my wife and daughter. I’ve planned well and staged them for a financially stable future. All it takes is me to earn military retirement and ensure her survivor benefit plans are in place. No worries though, I’m not so naive as to not go to the hospital at all. If it’s real bad, I’ll go. I am up 15 pounds since the 30 I lost. Unfortunately, regulations prevent me from taking civilian doctor prescriptions unless they are included in my military records.

    Hillel-Good suggestion on further SCD restrictions. I may have to work this angle. I’m so close to remission I can taste it, just can shake these last little blood spots. I’ll have to find out Adam’s back to basics SCD plan for flares. Simple is best I assume.

    -DH

    • Katie February 1, 2012 at 7:05 pm #

      Desperate, I also have Ulcerative Proctitis. Even when I’m supposedly in remission, I have a little blood on the paper. My doctor says this is pretty much normal for UP. If the SCD is working for you that’s great. The last time I was hospitalized, the dietician told me to stick to low residue foods. No raws veggies, no nuts, no seeds or popcorn. Just think of what type of textures you wouldn’t want to brush across raw, burnt skin. That is what the inside of the colon looks like on the screen on my scope. Not pretty at all! Even if you can just keep this at bay for 17 months.
      I would suggest you do not take prednisone on your own for any reason!!!! It works when taken right, but can be dangerous, has alot of side affects and you have to be taken off of it very slowly to be safe! Trust me on this one, I’ve been there!
      Good luck to you! You can also find support at http://www.dailystrength.org I have found lots of good people to talk to there.

      • Desperate Husband February 3, 2012 at 3:16 am #

        Thanks for the link. As another UPer with blood, may I ask how often? Mine is of course daily, but very little. It is so depressing to continually see. I’m surprised your doc says its normal. I often wonder how much chronic blood loss the body can tolerate.

        -DH

  5. Jaimee February 1, 2012 at 4:46 pm #

    Dear Husband,

    Keep your chin up. The good news is this disease is exhasting but usually not fatal! I’ve had it for 15 years. When mine gets super bad I eat bananas, rice and cooked spinach only at night so I have less bathroom trips during the day. I also turn on the water in the bathroom, it sounds corny but it drounds out the pain and calms me a little.

    • Desperate Husband February 3, 2012 at 12:33 am #

      Thanks Jaimee. It sure is hard to keep a chin with this garbage. I have such a respect now for those who have been dealing with this for such a long time. Maybe in time I’ll better accept this disease and not let it control my life as it is now. -DH

  6. Amanda February 1, 2012 at 5:52 pm #

    I know how frustrating this disease can be. Some days I feel like a fighter and can be amazingly positive and some days I just get tired and frustrated from having to deal with this on a daily basis.
    Your story stood out to me because of the proctitis and the fact you can’t get rid of the small amount of blood that is still left. My story is so similar to yours. I tried my hardest to stay off of medication for different reasons. I just didn’t want to put pills into my body for possibly the rest of my life. I have given into the meds because I wanted to go back to work as a teacher. That was only after a terrible flare and spending the entire summer “trapped’ in my apartment. I went on the SCD diet and have stuck with it since September. The diet has helped me tremendously with maintaining a fairly productive life.
    However, it wasn’t getting me back into remission so I took the next step and went on Lialda, then Canasa, which is a suppository and then a steroid suppository because the bleeding was still showing up exactly how you described.
    I just got back from my colonoscopy today. I needed another one because of the blood. I wanted to know I wasn’t going crazy. The diet and meds have made me feel about 90% better, but I so desperately want to be in REMISSION! My doctor said my intestines looks great, except for the last 5 inches, which are still pretty inflamed. Result=PROCTITIS, still!!
    My doctor has advised me to continue the Lialda and up my suppositories from 1x a day to 3x a day, which is not what I wanted to hear.
    I have made a decision to suck it up and just do it because in the long run I want to live a healthy life. I am only 32 and I do not want this disease to dictate my life or who I am.
    Hang in there! We can all fight this disease together. I have learned to feel the pain on my bad days and give myself a time limit to throw myself a “pity party”, then it’s time to suck it up.
    I am currently on the three medications, the SCD diet, Fish oil, Digestive Enzymes, Multivitamin, and Probiotics. I get all of my vitamins from http://www.giprohealth.com. THey are all SCD legal. Hope this helps a little…

    • Desperate Husband February 3, 2012 at 3:22 am #

      Amanda, we are so similar it seems. All I seem to read is people who are taking meds that never help, or help temporarily. Is UP bleeding for life our destiny? I sure hope not. This makes me hesitant to ever try the meds really. I was about to call it quits and head to the hospital back in September when I was at my worst. My improvements since have stopped me, but lately I’m continually concerned with the small blood loss. Is your doc concerned? I’ll check that link for vitamins for sure, thank you. -DH

  7. Bev February 1, 2012 at 8:58 pm #

    Hi Desperate…I am exactly where you are at the momemt, blood wise. When you say the blood is ‘haunting’…oh boy, that is a perfect description, isn’t it?! I totally agree. I hate seeing it. I just think I’m getting better for a day or two of not much bllod, and then, BANG, there it is again.

    I am only taking asacol at the moment…twelve stinking little ‘bullets’ per day, and a few probiotics. I REF– USE to take any of the harsher meds, like prednisone, remicade, immune suppressors, etc. I know that they are poison, and will only hurt me in some other way. My gastro says I am not in remission if there is ANY blood, but I have resigned myself to accepting that. She cannot cure me, and I do not wish to try drug after f***ing drug anymore.

    I hear your frustration and hopelessness. I feel like that quite alot. I have my happy, good days, though. Sometimes I have to make myself forget that I am stuck with this stupid problem, and it is difficult. I sympathize with you, and every single other sufferer out there. I have pancolitis now (involves the whole colon). It started as proctitis only 7 cm up the rectum, almost 15 years ago, and I was told it likely would not go any further…hah! 5 years later it was ‘left sided’ ulcerative colitis involving 40 cm of my colon, and now 5 years after that, it’s pancolitis…the whole damn thing. I wonder if my gastro lied to me way back when, just so I wouldn’t give up or get depressed.

    I am so so sorry…I wish I had a more optomistic picture for you. You just have to keep on going! I try to!! But. I agree with less drugs is more….natural won’t hurt us!

    Bev:)

  8. George in Napa February 1, 2012 at 9:51 pm #

    Hi Desperate Husband,
    I was diagnosed with proctitis in June of 2010. I have pretty much gone through what your experiencing. My symptoms very much mirror yours. I followed the SCD diet very strictly for 3 months and found that it did help me some but not as much as I had hoped. I currently follow SCD about 80%. I started taking VSL#3 about 4 months ago. Like the diet, it did help some but not as much as I had hoped. I take mesalamine (both oral and suppositories) but again, not much relief there. I have found that prednisone will stop my flares after I’m on it for 4 to 6 weeks. Unfortunately after I quit the pred, I usually start with another flare within a month. I hate the side effects if prednisone…. it really gives me insomnia bad….. plus I don’t like what I hear and read about its long term bad effects. I desperately trying to ditch the pred for good. I hate it. I saw my Veteran’s Adminstration doctor last week and he is mailing me a different med to try. Someday soon I hope that I can find an alternative solution to taking meds. I will keeping looking until I do.
    This damn disease it tricky….. what works for someone my make someone else feel like crap (no pun intended).
    Hang in there and keep on trying to find what works for you.
    We will find a way to beat this!

    George in Napa

  9. jane from Pa February 1, 2012 at 9:51 pm #

    just looking around and found this site–diagnosed with procitis about 7 yrs ago-then progressed to full blown UC landing me 5 days in hospital and 20 lbs lighter–put on Prednisone and straightened right up–found the book breaking the vicious cycle and loved it–really have tried to follow that alot–it is hard–you must keep a food diary for awhile–this is all about diet you know–you should cut out sugar seriously as much as you can–no deserts, etc..chocolate is not good for me either–drink water all the time if you can–i do not drink milk –i sub with almond milk–i eat cheese but stay away from mozz and ricotta–all in the book. i eat very healthy most of the time–no cream soups or sauces–use olive oil for cooking and flavor. i am a meat and veggie girl–it is hard to stay away from carbs–i eat alot of salads with little dressing to coat.Had colonoscopy 1 year ago and NO ULCERS–my dr was mad at me for a long time because i refused meds–he claims i am in denial of my disease–i was on meds before..but have been off everything for a long time-NO BLEEDING or trouble for over a year..i will continue to treat this with diet–i also do yoga and am in good shape–by the way, all this came out when I quit smoking–smoking lines the intestinal tract–so DO NOT start smoking cigs again–i believe medicinal marajuna may help you once in awhile instead.haha–and STRESS has proven to be a HUGE factor–thats why yoga has really been awsome for me..good luck–i’ll be checking this site again.thanks

  10. moxie February 1, 2012 at 11:47 pm #

    A similar story as yours: the SCD was helping to improve my condition, but I had blood on the toilet paper and streaked in the stools about half the time. I was discouraged too, but then I removed nuts for a while as well as yogourt but kept taking Lactobacillus acidophilus and within a few weeks the blood went away. I’ve since added these two items back to my diet and all’s well.

    Good luck.

  11. Torie
    Torie Walsh February 2, 2012 at 4:47 am #

    Hi,
    I also have ulcerative proctitis. I am now in remission.
    I also tried everything and was on cortisol. And also nothing worked.
    I eventually got left without a specialist, GP, social security benefits
    and my acupuncturist (they all moved)
    But being left alone was probably good for me. It made me forcibly stand
    still and listen and stay calm. I waited until one day my old GPs surgery sent
    me a letter inviting me to see another GP who was just amazing.
    This new GP is a hormone specialist and worked on my immune system
    Which areboth tied in together.
    Karen coats prescribed me DHEA which instantly put me into remission.
    It was a slow process but over the next few weeks all of my symptoms left
    one by one.
    I only stayed on it for 7 months and am now on pregnenolone another much safer
    hormone. It has helped a few people get into remission.
    Staying in remission is the key now.
    So itake : Glutamine (anti-inflammatory )
    Probiotics
    Vit D 3
    Wheat grass powder
    And HCL to digest.

  12. NyCgal February 2, 2012 at 8:24 am #

    Hey there,
    I was at this point, a few months ago. The only thing that really helped me was reading about the SCD diet, basically eating healthier food options that have helped others who have this. I have eliminated (although not completely just when I was flared up) milk or milk products, added veggies, no fast foods, no soy products at all (including soy sauce, which is my fav), I also started to keep a log of what days I would feel better and start writing down what you had that day. Also I took omega 3 pills. It takes a lot of patience with yourself discovering what works and what doesn’t, it took me months before I started feeling better. Little by little I noticed little or no blood and no mucus at all, it was the happiest of times! Hang in there and good luck to you.

  13. Rainy February 2, 2012 at 12:12 pm #

    Hi There

    I have just read your story and really feel your pain. I was diagnosed with Ulcerative Proctitis 3 weeks ago but had the symptoms 2 weeks prior to the diagnosis. The day i had my sigmoidoscopy (diagnosis day) i was told that the flare was severe and i would have to be put on a steriod foam for 4 weeks. Once i arrived home i burst into tears as this is my second flare since September, i just kept asking myself whether this is what the rest of my my life is going to be like….periods of remission, then a flare….not knowing when the flare is going to come, then when it does come how long is it going to stick around….will it be mild/moderate or severe. I am so fed up, i feel extremely depressed, i’m sick of these urgent toilet visits, the horrible weight loss and then the inconvienience of having to insert a piece of plastic up my backside everyday.
    Can anybody please tell me as to whether my low mood will change once this dreadful flare is out the way. With my first flare i felt fine mentally, but now as the days go on my moods deteriorate. It’s as though i have had my personality taken from me and been replace with one of a weeping monster.
    I feel quite isolated because i have no body to talk to about the illness, yes i’ve discussed it with family and friends but once you really go into detail about the condition they don’t want to know so i’m basically sent off by the doctors to deal with the condition by myself and i’m finding it difficult.
    How have you coped mentally? Are there any coping strategys?

    Hayley

    • George in Napa February 2, 2012 at 3:42 pm #

      Hi Rainy,
      No doubt about it… coping with UC is difficult. I agree with you, family and friends generally do not want to hear the “details about our condition”. I find that coming to this site and being able to read or communicate with others that are in the same boat as I am, helps me mentally cope with these nasty flares. I also find that making a post here and venting also helps improve my mental outlook. The folks who post here really understand what we are going through because they are experiencing the same or worse.
      I find that my mood improves once I am able to get the damn flare under control.
      We just have to keep working at it.

      George in Napa

    • Desperate Husband February 4, 2012 at 4:46 am #

      Rainy,

      I sure hope mood improves. For the past year since diagnosis, I’ve been up and down. What puts me down is when I dwell on the future and think of how this disease is for life. That depresses me hardcore. When I don’t think of that, and go day by day while keeping my mind preoccupied on other this helps. I’d say that I haven’t yet coped mentally so you and I are the same. I sure hope you and I pull through this.

      -DH

  14. Rainy February 4, 2012 at 10:59 am #

    Thank you George and DH, i will try to take one day at a time without dwelling on what’s happening to me. I think maybe because i am so early on in the illness it’s hit me hard. Listening to all you guys certainly is helping me to cope.
    This is a great site THANK YOU ADAM

    Rainy

  15. Matt February 6, 2012 at 4:54 pm #

    DH – I’m in the same boat, 2.5 years away from my pension. I’ve had UC for about 6 yrs and have done a tour of the sandy place, which was pretty tough. If you do go away, my advice would be get your own space where you can, be near toilets, have a plan to dispose of clothes if you need to etc. Its not much fun but if you’re organised, you can do it.

    I’ve tried nearly all drugs during my time, the only thing that worked really well was remicade, but after a year of no symptoms, the doc (I pretend to be a civilian and visit a hospital elsewhere on a day off) took me off it, symptoms returned, went back on it but now its not as effective as i seem to have built up a bit of an immunity. Regucol is on sale in the UK and works well for me. I’m an ex smoker too and since i’ve been in a mild flare for almost a year now am desperate for any solution. Let us know if the smoking helps!

    Hang in there, you’ve been through worse.

    • Desperate Husband February 7, 2012 at 12:37 pm #

      Matt,

      Are you active duty? What branch? How did you manage to avoid an MEB and stay in for 6 years with UC? Wow I have so many questions. What are you using to control you flares? Is Regucol prescription? I never heard of it. Are you using prescriptions and trying to hide it?

      To be honest, it seems smoking is lessening the blood right now….seems. However, i have had mucus that past couple days. Its been 4 months since I’ve seen that.

      Sorry for all the questions, but it’s good to have a military dude to relate to.

      -DH

  16. dogmusher July 3, 2012 at 6:36 pm #

    Hello DH. I was diagnosed with UC april 2012. 1st symptoms were jan2012. My job is to take people on week long dog sled expeditions in the high arctic. 7 days a week, 18 hours a day. Tough for a uc’er. I hope I can help you some. On prednisone and mesalazine just now but prior to being on meds (jan-April) i treated myself with the following:-
    Aloe Vera juice, cold pressed inner leaf gel. Really helped. Highly recommend.
    Omega 3 – helps with the depression.
    Probiotics.
    Wheat grass juice. Start at 20ml (2 thirds of ounce) per day then over several days make your way up to 100ml (3.5 ounces) per day for a month. Very good.
    Cannabis, small amount before you hit the sack. Helped. Though being military i guess this is a no go. Google cannabis and uc, some promising research coming out of Lancaster university, UK.
    Hell of a lot of mint or fennel or licorice tea. Comforting morale booster after you have to leave a warm sleeping bag and head out of the tent to use the toilet when its -30c!
    Glutamine. Good for intestinal lining.
    Colostrum. Great immune system booster.

    Hope some of these help.

    Things that ruined me were alcohol, caffeine, fatty foods and sugar. The staple diet of a dog musher!!

    When I finish these meds im giving David kleins self healing book a go. You said you had it. Did you try it? Heard good things.

    I wish you and your family all the best and really hope you reach your goal with the pension. Take care and good luck.

    DM.

    • Maria March 27, 2013 at 4:37 pm #

      Hi Dogmusher,

      Im curious, when you say you’re from the high arctic, are you from the Canadian high arctic by any chance? if so, where do you get your supplements from? do you order them online? I am from the high arctic as well, and so it is very hard/expensive for me to purchase supplements, especially with the high cost of shipping..

      • dogmusher May 18, 2013 at 9:01 am #

        Hi Maria,

        Unfortunately I am not from the Canadian high arctic. I do however purchase some supplements online from Biovea. They are based in the UK. Other supplements I have been looking in to include:- Rhodiola, Boswellia and Colostrum. All look very promising so far. Sorry i couldn’t help more. Good luck with everything and try to stay positive :)

  17. Christine July 3, 2012 at 7:36 pm #

    I know this may sound so simple for all the stress and discomfort you are in, as did I when I came across a friend which told me to try Metamucil…I looked at her as if she was ignorant to the fact of the horrible things I had been going through and brushed it off. After her watching my suffering for the next while at work with my last Flare up, she brought me a jar of it to work, made it for me every moring and at lunch and said for me to have a glass before bed. after 1 week i was getting sick of gagging this crap down but still continiued to please her. I swear…about a week and a half I started to see results, and then 2 weeks, No blood! solid stool for the first time in 7 years!!!! I drink it every morning and every evening before bed, and NO flare ups since! No Blood’ No Bloating, No pain, No more Colitis or Proctitis symtomps whatsoever! I sweat to you.. this works! I call it my Medi!
    Who would have thought such a simple fibre drink could be my miracle?
    Please try this and stick with it!

    • Maria March 27, 2013 at 4:35 pm #

      Hi Christine, I know its been awhile since you posted this, but Im curious to know how your’e doing after starting with the metamucil? Are you still in remission? Also, Im tempted to try this out as well, but Im curious to know if metamucil might have something in it that might not agree with me. What types of foods do you avoid when you’re in a flare? So far sugar and dairy are VERY bad for me, so I am staying from them completely (or as much as I can). Also, avocadoes for some reason dont agree with me, and certain types of rice.

  18. ag_forum August 31, 2012 at 5:10 am #

    I was diagnosed with undifferentiated pancolitis about 1.5 years ago. I find liquid turmeric extract helpful. 1 tsp a day. Perhaps a larger dosage a couple of times to get into remission. This is very cheap so may be worth a try. I’ve also cut out all dairy except raw milk. A trusted, clean source with pasture fed (not grain fed) cows is very important, however, with the raw milk.

  19. William Jones October 11, 2013 at 5:25 am #

    I have Proctitis, basically i wanted to see if there was a way to get into the military even though i had the condition. Basically i am 18 and only found out i have Proctitis last year. This shocked me as i have been training for the military for 3 years now and wanting to join since the age of 8. So i had my medical today for the Royal Marines and got told straight i am a perfect, healthy person but the only problem is i have this condition so the doctor failed me. if i were to pass then i would go on my PRMC (Potential Royal Marines Course) today. This has really pissed me off as i dont know what to do with my life at this moment. My whole life was focused on joining and was raring to go until i found out i had this. even the Sergeant helping me through this was pissed off at the doctor for failing me. This is my story.

  20. Matt S October 28, 2013 at 9:44 am #

    I am going for a follow up apt today for my proctitis to look at surgery options…preferably one that doesn’t require the bag post op. If anyone knows of one please post on here. I’ve done some research, just looking for any and all options (and experiences from those who have had them). Thanks
    Matt

    • William Jones January 8, 2014 at 3:28 pm #

      Matt Where about are you from ? and can you tell me what your doctor says ?

  21. Matt S January 8, 2014 at 3:37 pm #

    William Jones, I am from West Des Moines Iowa. I spoke with my doctor after my October 28 post here and he informed me that I would be hard pressed to find any doctor who would authorize surgery before numerous other things were tried first. He said there was a huge range of medicines available for what I had ranging in price and that we should start down the list to see what combo works. I might have gotten lucky as I found one combo that obviously doesn’t cure it since it is incurable, but it has helped tremendously. The combo is doing the mesalamine about once a week + doing Qty 2 10mg loperamide pills (Immodium) a day. The loperamide helps to slow the absorbtion of water. This combination has been great for about a month and a half so far. I have very few bowel “issues” like I was having before and the bowel movements are a lot more normal….I am not 100% normal now, but the difference before taking the loperamide is huge.

  22. Jim July 4, 2014 at 9:51 pm #

    I have ulcerative Proctitis (my gastro thinks). My sister has UC and my mom had either Crohns or UC.

    I had months and months of continuous bloody, loose stools followed by the cramp pains(left side) and exhaustion.
    I altered and limited my diet to as much as what I thought would possibly help me, but it kept progressively getting worse.
    Eventually, I went back to my gastro who wanted to give me the steroid suppositories, but my insurance wouldn’t cover them because they were not approved by the FDA, despite being out for years.
    So, instead I started on the proctofoam which is a steroid aerosol cream. My bleeding stopped almost immediately, and my cramping got much better. I still have the weird gas and mucous, but there is a significant improvement. I am confident and hopeful that there is healing happening.
    I have to go back to gastro in a couple weeks to see if symptoms stay better when I go off proctofoam. If they do I will have to have another colonoscopy.

    My diet. Everything I eat is GMO free and organic:

    Eggs (sometimes Bacon)
    Arborio Rice / Sushi Rice (I like the texture and don’t get sick of eating it everyday)
    deli Turkey (my savior)
    Clean Salads with oils
    Kale (usually Kale Chips)
    fresh Salmon (Shrimp seems good too)
    Rice Cakes (with cinnamon sugar flavor!)
    Salmon Sushi (Gluten free Tamari & I keep it simple. Sake or a Salmon roll. I will take out the onions)
    Cheddar Cheese (in small amounts)
    Bananas sometimes
    Satsumas and other mandarins or tangerines when they are in season.

    No gluten.
    No dairy.
    No processed foods.
    No nuts or seeds.
    Water only (perrier sometimes).
    Sugar seems to be the deadliest of all. Sugar substitutes, as well. I reference the FODMAP diet which limits lots of fruits and vegetables because of the small intestine having difficulty with breaking down sugars.

    Sometimes I have a little dark chocolate. It might not be the best idea.

    If I eat certain foods (gluten free pastries with something sugary or chocolate), I can get a sensation like I am nauseous in my esophagus area. I know to stop when I get that feeling.

    OTHER helpfuls:

    Shiatsu Massage therapist has been incredibly helpful. I have gone 2x and many of the blockages in my body, including gas and belatedness, have subsided and moved along. I am a HUGE believer in chinese medicine’s ability to re-balance our system.
    Find a healer! Western medicine is very limited, and often just a band-aid.

    Kundalini Yoga is easier on my body than regular yoga. Plus, I just like it better.

    I don’t know if you all have mentally healthy lives, but I certainly have had to deal with anxiety and depression for a long time. I am finally getting to the root of this, and I am hopeful that my body will heal now that I am making headway from the self-inflicted, sexual repression I have lived with for as long as I can remember. I am finally starting to come out of closets and find some peace. I am hopeful that my body will respond in harmony.

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