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Advice for Newly Diagnosed Sufferer

ulcerative proctitis patient

recent picture of Patricia

Meet Patricia:

Hi I’m Patricia. Diagnosed with UP in April of this year (2014). I am 53 years old and a single mom to an 11 year old very active son.

Some more background info:

I advocate for animal rights, follow a vegan diet (unsure about continuing this) and foster homeless and abused dogs until they find forever homes.

Symptoms:

I am no longer in remission and have been very ill the past few weeks. I fight fatigue and headaches daily. On average I am in the bathroom every half an hour. If my employer gets upset with this I will be forced to supply them with a doctors note. Not much fun to have to tell the whole office my personal problems. Perhaps they already know if they can hear me and my noisy butt in the ladies room!

So Not only am I passing quite a bit of blood and mucus but I have contractions while sitting on the toilet. It feels like I may have a bowel movement (I wish) but then I begin contracting and large and small blood clots come out. Then the cramping begins so I go and lay down like I do whenever I can. Lately I have been having backaches as well. Not sure if that part is stress related since I am logically stressed by all of this.

Newly Diagnosed with Ulcerative Proctitis:

This bloody disease is scary, it’s disturbing and it completely SUCKS.

I am constantly fatigued. I feel lifeless and hopeless and in despair. I have been cancelling plans with a very nice guy who is interested in dating me but the last thing I feel like doing is being romantic with a new guy when I’m sitting in my own bloody shit! UGH. sorry. so graphic lol. But true.

I’ve read some articles about people having success with Vitamin E-enemas. Anyone have any experience with this?

The drugs I have been using are basically useless and completely UNaffordable.

I would prefer natural remedies if there are any. I was using hydrocortisone enemas since April but my current doctor wants me off them as long term steroid use is very bad he said. So the doctor prescribes me Canasa (675 my cost) and due to the fact my insurance sucks I cannot afford this Canasa, So..he puts me on Apriso (my cost $245) and I hate it and a week later it isn’t doing a damn thing anyway and then I hear it causes hair loss!?! A bloody ass and a bare head? What’s next. For a single mom this is not a great way to impress a man.

I am terrified that my initial diagnosis is now full blown UC since my symptoms have gotten so much worse. For me the worst part of this disease is not having any control over what is happening to my body. No matter what I drink or eat or what meds I take I cannot stop the contractions, the pain and the bleeding.

I’ve all but given up on medications. I would much prefer success stories the natural way. Does anyone have any?

I’ve read that slippery elm, aloe vera and turmeric help with inflammation.

Medications / Supplements:

Current meds:

Apriso- 4 pills daily
Hydrocortisone enema – 1 every night (I’ve stopped these due to doctors orders)
Probiotics (useless IMO)

Current diet:
Coffee (will consider stopping now)
Alcohol (not in weeks- too sick :(
Aloe juice with wheatgrass
Turmeric
Soy products
Almond milk (no dairy for me ever, I love those baby calves too much)
Vegan diet -NO animal products but considering eating yogurt and fish again.
Mostly rice and steamed veggies is what I eat. I’m scared to eat.

written by Patricia G

submitted in the colitis venting area




proctitis

14 Responses to Advice for Newly Diagnosed Sufferer

  1. Polly
    Polly November 22, 2014 at 3:20 pm #

    Hey Patricia,

    Sorry to hear about your current situation. It sucks, we’ve all been there.
    I definitely think you need to ditch the coffee for now. It is not what your system needs. I’m flaring too, and understand about being scared to eat. I also recommend ditching the soy. I am eating almond butter by the spoonful, and spinach and sprouts cooked in coconut oil. Those are working for me right now, although, I am hungry hungry because I can’t get enough calories… I’ve lost a pound a day pretty much, I think. I’m also eating “baby food”… I made a puree out of cooked spinach and orange sweet potatoes.
    Yeah, there’s lots of alternative meds out there… I’m surprised probiotics didn’t work for you… Maybe you need a better one or higher dose? Also Vitamin D is super important. You suggested aloe vera, slippery elm, and turmeric, those are great as well. You should look into boswellia. I’m currently on day 2 of boswellia, so don’t know how it will work for me yet, but there are lots of research articles about it!

    Hang in there!
    Polly

  2. j November 22, 2014 at 5:23 pm #

    It is always difficult to receive a diagnosis of a chronic and incurable disease. Following the SCD diet may help you with some of the symptoms. A diet change may help you into remission. It will not cure the disease. Imagine if you had been diagnosed with diabetes. You would take prescription meds because that is the treatment. There is no cure for ulcerative colitis and not everyone responds to medication the same way. I know it is disappointing and confusing. Some meds work for some people and not for others. Most UC meds are expensive and there are programs that offer reduced cost. You can ask your doctor or pharmacist for the forms to fill out.

    I have had the disease for over 40 years and I do take maintenance medication. I have also been successfully treated with fecal transplants. You can read about my story on the FMT link on Adam’s fine website.

    This disease can make folks very ill and some people require hospitalization or surgery. I hope you find a treatment that works for you.

  3. Bev November 23, 2014 at 8:47 am #

    Hmmm….natural remedies…that is actually the ONLY way to truly treat this condition, Patricia.

    The drugs can and do have worse side effects than the condition itself and after awhile, stop helping, if they ever really did. I’ve been there! On asacol and steroid enemas for 15 years with little or no relief, not to mention that the asacol was making me feel even worse. Of course, I was not aware of that then, my doctors telling me that the UC itself was what was making me feel so terrible. Not so! Almost immediately, when I decided to go ‘natural’, I felt a lot better.

    Your fatigue and headaches are probably due to low iron. In fact, I’m sure that they are. I cannot tolerate any oral iron except this wonderful product called IRONSMART. It is a liquid iron which does not cause any nausea at all! No kidding. It’s expensive…I spend $40 per month on it, but I take it diligently now. Iron deficient anemia is a horrible way to live. I had headaches every single day and had to nap a lot…ugh. Not always easy to do in today’s fast paced world!

    As to natural…well, as a lot of people on this website know, I am anti med these days, having attained real remission for the past five years on a good probiotic (ULTIMATE FLORA CRITICAL CARE by RENEWLIFE), which, by the way, must be taken on a completely empty stomach (I take it when I get up in the am) and then no eating or drinking (except water) for at least half an hour (I go an hour) afterward. VERY IMPORTANT to follow that and to NEVER miss a day EVER. The longer you take probiotics, the more they work. It can take MONTHS, I realize now. We did not lose our good bacteria overnight, and we cannot fully replenish it over night. We, with this condition, obviously have to be more diligent in maintaining our good flora, because for some reason (antibiotic use, illness, medications), we have lost out ability to do so.

    Besides the probiotic, I take NORTH COAST NATURALS powdered fermented L-glutamine once a day, again on an empty stomach (usually an hour before lunch) mixed with a bit of juice for taste. The doses are on the tub, as well as the scoop being included inside.

    With lunch I take vitamin D…2 pills of 1000 units each. I had a blood test a couple years ago to see where my levels were at and they were low! Who knew? Vitamin D is important for inflammation, so when I was low, I took 4 pills for a few months, had my levels tested again, and they were good, so I went down to 2 pills. I also take a 4mg pill called astaxanthin with lunch by a company called NOW. It is also for inflammation. Both the Vitamin D and the astaxanthin are better absorbed with fat, so you should take them with food.

    That’s about it! This is no joke. Meds for UC are not good, at least not yet. Some are very harsh and can even cause other more serious illnesses (kidney and liver problems…cancer). That seems ridiculous to me. We often let the doctors talk us into taking them because they say that it’s rare for these things to happen! Well, to me, if there is even a chance of my other organs being damaged, or even a chance that it increases my cancer risk…well, I don’t think so.

    I have succeeded, I believe where others maybe have not, because I have persevered…I never waver…I always take my ‘things’ every single day. I never gave up when a little flare might creep up. Like when I had the flu shot a couple years back…every year I used to get one and every winter, I would flare…go figure. Now, that is not to say that the flu shot will affect everyone that way. You just have to notice your triggers and avoid them…and most importantly, stick to your guns! Keep taking what works for you!! Without the meds…I am proof that it can and does work. Trust in yourself. You are the boss. Not the doctors.

    Cheers :)

    • Patricia G
      Patricia November 23, 2014 at 12:32 pm #

      Thanks Bev,

      Your post gives me so much hope! I am so anti meds that I’ve been obsessing over how to get myself well without conventional medicine. I will certainly give your current natural remedies a try and hope for the best!

      The constipation that comes with this illness is no fun either and honestly I think it worsens my condition. Not having healthy bowel movements I am sure puts an immense strain on my bowels. The dr has me taking miralax and benefiber and it does nothing for me except to make me nauseous.

      I want to thank everyone who has responded to my little story. It is very comforting to talk to people who also suffer with UC and can relate to how much it changes your life. Thank you. XO

      • Bev November 23, 2014 at 4:36 pm #

        We are always all here, Patricia. Thank goodness for this site. I have been where you are currently, heck, we all have. This site saved my life (thank you Adam for dreaming it up) a long time ago. I was so sick and tired of being sick and tired that I truly did not want to deal any more. So happy that I found this place and started to take charge of my own treatment.

        About the constipation thing…I have never been constipated in my whole life! I suppose I should count myself fortunate in that small mercy…

        :?

  4. Polly
    Polly November 23, 2014 at 5:38 pm #

    Patricia,
    I also have not personally struggled with constipation, but have you tried drinking coconut water??? That usually can get your intestines going, plus it’s super healthy, full of electrolytes and potassium…

  5. Grant November 24, 2014 at 4:01 am #

    Hi Patricia!
    I’m currently med free and in remission thanks to diet for one year now. I’m also training to be a transformational nutrition coach and microbiologist and have over 2 years of research etc. on how to get in to remission. If you want to get in touch with me i can outline a diet plan that will hopefully get rid of some of the worst symptoms. You should definitely look at the specific carbohydrate diet (SCD) but do not do this diet without first doing the elimination diet. You have to starve the bad bacteria in your gut first before rebuilding your digestive system. I suffered for a year with meds not working, horrible symptoms while trying to do my job which involved 14 hour shifts, taking tourists out on dog sled trips in the high arctic! Not the best job when you have UC! :D There is so much info out there on how to address IBD with diet and how to solve your symptoms. There is no ‘one size fits all’ diet as each case should be treated individually. What works for you might not work for me but the basics of SCD and Paleo principles are the best foundations for resetting the gut dysbiosis you currently have. Please get in touch, i’d be happy to help.

    • Patricia G
      Patricia November 24, 2014 at 10:30 am #

      Grant thank you so much for reaching out. Your information and story makes me very positive that I can beat this the natural way. What tip scan you give me as far as the “elimination diet” goes. I am also considering going gluten free but I think since I am also a vegan my head is starting to spin figuring out what to eat, if I can eat it and if it will ultimately make me ill.

      I looked some info up regarding what to eliminate and will work on a diet for myself. Thanks again!

    • suzie March 6, 2015 at 1:50 pm #

      Hi I have a daughter with the same if as Patricia. What did you do and how did you do it?

  6. Grant November 25, 2014 at 4:55 am #

    Hi again Patricia! As far as tips for the elimination/intro diet to SCD you need to concentrate on making a whole bunch of bone broth. I see you are vegan so that rules out chicken and beef bone broth but if you are contemplating fish then you can make a fish bone broth (enough for a few days). Slow cook on low heat for a minimum of 4 hours with some onion, celery and a bunch (10 minimum) of peeled carrots. After 3 hours take out the carrots and puree them and add them back for the final hour. (skim off any fat on the surface of the broth, it’s hard to digest) Bone broths are nutrient-dense, easy to digest, rich in flavor and–they boost healing. Slow cooking helps the bones and ligaments to release healing compounds like collagen, proline, glycine, and glutamine that have the power to transform your health. They also contain minerals in forms that your body can easily absorb: calcium, magnesium, phosphorus, silicon, sulphur and others.
    The intro diet should last for 2-5 days and never more than 5 days. The foods you should take for these first few days should ONLY be:
    the bone broth,
    broiled fish,
    eggs (scrambled, poached, hard-boiled ,soft-boiled, sunny side up)
    gelatin. Homemade jello (made from unflavored real gelatin and purple and/or white Welch’s grape juice (100% grape in a jar, any color, not frozen, not with calcium) or Apple Cider (cider only, brown, refrigerated; commercial apple juice is NEVER legal)

    For your reference please read http://www.breakingtheviciouscycle.info/p/the-intro-diet/ and also http://pecanbread.com/f/how/introdiet.html

    From your current diet please remove the aloe juice (It contains mucilaginous polysaccharides as well as increasing the release of tumor necrosis factor which is associated with IBD inflammation and increased immune stimulation) and wheatgrass, all soy products (Soybeans contain large quantities of natural toxins including enzyme inhibitors that block the action of trypsin and other enzymes needed for protein digestion. These inhibitors can produce serious gastric distress, reduced protein digestion and chronic deficiencies in amino acid uptake.) Please read http://btvc.webfactional.com/knowledge-base/detail/soy/ for more details on harmful effects of soy on IBD. And also take out the rice.
    Just also want to say none of this advice should be taken as medical advice, i’m just sharing info with you that helped get me in to remission. Keep taking your meds and keep talking with your doctor whilst going through this diet. You may experience what is called ‘die off’. This is the period when the harmful microbes are being starved and dying. My die off was pretty bad and the symptoms seemed to be getting worse but i was assured by nutritional experts that this was and can be a common factor on the intro diet. In the first year i had lots of ups and downs, made a bunch of mistakes, didn’t think it was working sometimes but what i can say is, i’m in remission and med free and for sure the diet has more than helped me get to where i am now. I also absolutely recommend yoga and meditation to address any underlying stress issues you may have and getting your hormones in balance and doing a cortisol check may also be a great idea. I hope some of this info helps and i totally recommend getting the book ‘Breaking the Vicious Cycle’ by Elaine Gottschall. Doing the intro diet and starting SCD with the book by your side is very helpful. Any questions at all, feel free to get in touch. I’m on twitter if you’re there, my ID is @dogmusher.
    All the best and hope everything works out!

  7. Grant November 25, 2014 at 5:07 am #

    One thing i missed about the broth: remove the onion and celery when it’s done, they’re only used for flavour :)

  8. Tom
    Tom November 25, 2014 at 10:25 am #

    Patricia

    First of all, i’m pretty sure it’s not constipation you have. Check this out. http://en.wikipedia.org/wiki/Rectal_tenesmus

    Tenesmus is very common with UC.

    I hate to be the bearer of bad news but you are not going to be able to get the inflammation down by simply drinking bone broth, eating yoghurt or whatever else has been suggested.

    As evil as it is, have you not been put on prednisone/prednisolone? It’s certainly not a long term solution but in most cases, get’s you to a stage where you have a clean slate to start from, so to speak and then you can experiment with the natural stuff if that’s what you want to do.

    Good luck, keep us posted

  9. Grant November 26, 2014 at 10:26 am #

    Hi again Patti! Love to be the bearer of good news and let you know the latest research coming out of the Knight lab in Colorado https://knightlab.colorado.edu/wordpress/ points to food actually reducing inflammation in the gut. The publications are open to the general public. Interesting articles include:

    Genetically dictated change in host mucus carbohydrate landscape exerts a diet-dependent effect on the gut microbiota.

    Toward Effective Probiotics for Autism and Other Neurodevelopmental Disorders.

    A Modular Organization of the Human Intestinal Mucosal Microbiota and Its Association with Inflammatory Bowel Disease.

    I would also like to point you in the direction of the work by leading experts in the field including:-

    Dr. Terry Wahls (After being diagnosed with secondary progressive MS, Dr. Wahls
    restored her health using functional medicine and paleo principles)

    Mark Hyman M.D.
    Joel Fuhrman M.D.
    Dr. Mercola
    David Perlmutter M.D.
    Amy Davis M.D.
    William Davis M.D.

    Another great source of information is the recently released ‘Origins’ documentary from well.org It’s free on youtube for the next 48 hours and is worth watching should you consider a natural solution to healing.

    Prednisone will also reduce inflammation but be sure to research it and the host of side effects it comes with. It can be very effective in getting acute IBD symptoms under control, but the list of potential side effects that this drug can cause is extensive. The body itself produces a substance that is equivalent to about 5 mg of prednisone. A short course of 10 mg of prednisone a day may not cause side effects. However, either a dosage of 10 to 20 mg a day for a month or more — or a dosage of more than 20 mg a day for any length of time — could cause troublesome side effects. As the prednisone dosage is tapered down below 10 mg a day and eventually discontinued, the temporary side effects will lessen and reverse. It should be noted, however, that some potential adverse effects of prednisone are permanent, and discontinuing the drug will not reverse them. This includes glaucoma, cataracts, osteoporosis (bone weakness), and osteonecrosis (bone death). Whatever you choose, i wish you well and like i said before, feel free to get in touch. I’ve been through both courses of treatment, a year of many medications and a year of diet/lifestyle changes with endless microbiological, molecular/cellular and nutrigenomic research and i know which helped me achieve remission.
    All the best.

  10. Helen February 6, 2015 at 9:43 pm #

    Hey Patricia.
    I also have proctitis and have found some ways to manage it. What I do is I steam green vegetables such as carrots, green beans and green peas. When I have symptoms I eat the vegetables 3-4 times a day, with meals (at the beginning of each meal). After about 15 days the symptoms tend to get many times less and a bit later go away completely and the disease gets easily manageable after just by adjusting your diet. I had similar symptoms as you describe but after eating steamed vegetables every day for a month I had no symptoms after for about 8 months .They came back ( mild case) because I had forgotten about this disease and didnt follow diets and ate anything i wanted.

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