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Getting to Grips with the Bleeding and Stopping It

Hi,

My name is Amanda Bryan I am 46 and was diagnosed when I was 21 just after having my first child. Moderate Colitis was reconfirmed in July this year and this current flare is showing no sign of regression.

Some more background:

I have an animal care college and two children one of whom is a musician and actor and the other Figure skates. My only hobby is her i am afraid…. My son is too old he tells me so I am his greatest fan! my daughter is my entire social life.

Colitis Symptoms:

I have sore swollen tummy ( like a football) and blood some days none somedays some somedays its like mass murder has been committed in the bathroom! these are the days I despair. Its been 6 months now and nothing i do is having an effect.

Amanda’s Story:

Back then 24 years ago, I was put on Asacol mesalazine and Predfoam enemas which took me into remission and for the last 23 years every time i had a little vision of blood I popped myself back onto the meds and hey presto, so as soon as the blood disappeared I stopped taking the meds, no medical supervision!

I left all wheat and gluten out of my diet and brought it back under control. Each time, which I have to say was not many over the years it became a little worse and I always got a what I called an Itch on both my left and right side just under my rib cage which slowly and sometimes turned to a sting! lots of water meds and prunes I was always ok. Until last June, my bowels became explosive and then I began to bleed increasing to a few times daily and a tad weight loss and sore… the itch was sore. I tried probiotics and some kind of oil that is meant to repair mucous membrane, seemed to make me worse.  So I stopped saw a specialist in July had a sigmoid and was placed back on asacol full dose, prednisalone enema once a day, which she took me off in September but I put myself back on in November and I am still taking. Due for a sigmoid on 19 Dec. Nothing is working, can anyone help me, I don’t think I am ever going to be well again for my daughter.

I would like to know why I can’t get to grips with the bleeding and what if anything is thought to help this stop. When you say EVOO really, or is it a special kind for taking and what is this L-? Sorry this is the UK, we appear to be very restricted in our education of this disease?

Medications & Supplements Amanda’s Using:

Asacol Mesalazine
Predfoam
Prednisalone enemas
Movicol
probiotic
buckthorn oil
prunes

written by Amanda

submitted in the colitis venting area




20 Responses to Getting to Grips with the Bleeding and Stopping It

  1. Adam
    Adam December 14, 2014 at 3:22 am #

    Hi Amanda,

    I think you should give a read to Graham’s stories regarding EVOO or Extra Virgin Olive Oil. He’s done quite a bit of research, and between you reading his story on the topic and reading the comments, you should have a very good understanding of what people with UC think of EVOO. Here is the link to that:

    http://www.ihaveuc.com/evoo-2/

    Also, regarding the “L-“, I think you are referring to L-Glutamine which is also a very popular topic for discussion on the site. There is a specific page here dedicated to reviews from others who have used/use L-Glutamine which you should read as well. Here is that link:

    http://www.ihaveuc.com/l-glutamine/

    I hope the sigmoid coming up shows some improvement for you, and between the info from the links above, I hope you have some of your questions answered. Let me know if you have more.
    -Adam

  2. Amanda December 14, 2014 at 3:32 am #

    Hello Adam
    Yes, I started taking evoo on Yhursday this week! Fingers crossed. Thank you for the links I will have a read.
    I am so happy to have found you guys. I felt so alone and afraid. I feel much more positive now.
    Amanda

    • Adam
      Adam December 14, 2014 at 6:27 am #

      Sounds good Amanda, and let us know how it goes. Throw down a comment either here, or even better on the evoo pages since there’s tons of others who follow those posts:)

  3. Tom
    Tom December 14, 2014 at 9:47 am #

    Amanda

    I’m not sure what you mean when you say the UK is restricted in our education of UC. I think we don’t go down the EVOO or probiotics route because there is no scientific proof they do anything over and above placebo, and we have a world leading and accessible health service.

    If your experiment with EVOO does no good, then i suggest you go down the oral steroids route. And dont leave it too long

    All the best

    • amanda December 14, 2014 at 10:52 am #

      Hi Tom
      I think I meant, the only real help I have had throughout 24 years is my mum, she suffered with chronic UC and had surgery to remove the large intestine when she was 24. Its funny, when I look back to my first consultant,he looked after me really well, He suggested to use complimentary too in the form of cod liver oil capsules daily, along side my meds. I very quickly went into remission, flaring only a handful of time on the 20 or so years. When I say lacking in education… I went to my GP recently to see if there was a nurse I could see between my consultant visits, she could see clearly how distressed I was, yet just sat there being vague and offered nothing no advice or help. Thats been me since I fell off the radar 20 years ago I have always had to look after myself, My UC this time however has been so resistant to the Asacol and the pred enemas I have had to go to a private consultant to ask for her advise which has left me here. So my second sigmoid in the last 6 months, due in one week and wondering what could possibly have been missed or overlooked, perhaps nothing…… I feel that were it not for my own family I would be even more lost, although now I have found this, I think I will have advice to hand. Yes I think she may opt for the oral steroids after Friday. Although I may be painted quite the drama queen as for a few days now there has been very little bleeding thankfully!
      Warm wishes

  4. Tom
    Tom December 14, 2014 at 10:57 am #

    Amanda

  5. Tom
    Tom December 14, 2014 at 10:59 am #

    Amanda

    I know what you mean by no support. There has only been a specialist IBD nurse at my hospital in the last 6 months. Ive had no colon in 18 months lol.

    If you are on Facebook there are some great groups on there. Crohns and colitis uk forum is one of many.

    All the best

  6. amanda December 14, 2014 at 11:28 am #

    Thank you Tom I will have a look. :)

  7. PeterNZ December 14, 2014 at 2:22 pm #

    Hi,
    If it was me, with the benefit of hindsight, I’d be booking a full colonoscopy (not just sigmoid) and asking about going on oral prednisone for a while. For me a 40mg dose brought things under control most of the times.
    You wont want to be on pred for long though so think of it as a stop gap. The theory is to use pred as a stop gap to quickly stop the flare and then withdraw the pred in favour of a long term maintenance drug e.g. Pentasa, Azathioprine etc. Well that is the theory…..Hope this helps.
    Cheers,
    Peter

  8. Bev December 14, 2014 at 2:24 pm #

    I highly recommend L-glutamine as it helps to repair the mucosa of the colon, thus lessen and ultimately stop any bleeding. It can take quite a long time…I have been taking L-glutamine for the better part of five years now and have absolutely NO bleeding at all any more. It did take a few years (!) for the bleeding to go away completely. Yes…that’s a long time, but I hung in there.

    I also take a capsule of ULTIMATE FLORA CRITICAL CARE by RENEWLIFE every morning on an empty stomach…it’s a marvelous probiotic.

    Cheers

  9. Kristin T
    Kristin December 14, 2014 at 5:35 pm #

    Amanda,
    So sorry you are feeling so poorly. With as much as you are bleeding have you had your stored iron checked? If you aren’t aware, when it gets terribly low, you will feel DEBILITATINGLY depressed and are at risk for a whole host of other physiologic problems. Iron supplements are a must to get your stores under control and getting back to feeling lively again.
    Hope this is not the case for you,
    Kristin

  10. Judith K
    judith kupstis December 14, 2014 at 7:10 pm #

    I like you, Amanda, did not have the right primary care doctor. Found a new doctor that is very caring. My GI doc is wonderful and she has been having me do full colonoscopies every year for the past 10 years. In October I went in for what I now consider “routine” colonoscopy. It did not go well. She was not able to get in past the first couple of inches even tried with a pediatric scope. Of course I was completely out but when I woke p she was there to tell me what happened. She was very concerned, so the next day it was blood work and a cat scan. Two days later I was in front of a surgeon with all the results in and he was teling me he needed to remove my large intestine and my rectum. I had been at this point managing my flares, the embarrassing accidents, the bleeding and working a full time job, raising a family. I have never been compliant with doctors orders. Like you, I put myself on and off most of the recommended. Hate side effects. So as soon as I started to feel better I took myself off the meds. I was making up my own rules and trying to manage an unreasonable, hideous disease! This leaves me here 6 weeks after surgery, asking if I had let the professionals call the shots, and followed the recommended course of treatment, would I have ended up with no large intestine and no rectum? I am 62 retired in July of 2014 after working in the financial industry since 1970. I am spending the first part of my retirement, struggling with my body still, but hopefully will begin to get back to myself and be able to be adjust to the many changes that this surgery and the loss of those body parts has caused. I really identify with so much of what you have shared. Please keep posting to this site, there are so many wonderful people. As far as the suggestions given, take what you need and leave the rest. Positive thoughts and prayers coming your way! Judy K

  11. amanda December 15, 2014 at 2:40 am #

    Thank you Judith. I know you will start to feel better soon. My Mum had the same operation when I was a child, she is now 67 and has never looked back. As has my best friend from childhood who is in her 40s and leading a wonderful life now. They both have an ileostmy.
    These facts have recently been cause to my asking myself …. is this an unnecessary battle, whilst surgery is very scary, (and it is) if my mum can do it and not have all this upset and worry come out the other side and smile and my friend who quite honestly has never looked happier, then is the battle worth it?
    I suppose the disease gets you that way though, tired.
    Judith I know you are going to enjoy the rest of your retirement, your life is about to change for the better. Trust me my mum and best friend are living proof. Keep in touch if you need any help or advice.
    Best wishes Amanda x

  12. stephanie December 17, 2014 at 9:01 pm #

    Hello Amanada,

    My husband, 30 years old, was diagnosed with UC in Feb of this year. He was put on prednisone 40 mg a day and Asacol. Didn’t want him to go on pred, but it was scary so he tried it.

    However, he wouldn’t be off it unless his GI Dr reccomened VSL#3. A probiotic for UC patients. I know, there are so many types and brands of probotics out there, but this one certainly worked for my husband. He is no longer on prednisone nor Asacol (because it started affecting his liver) and just had a scope yesterday that came back with only two small ulcers in his left colon. Which was a huge change from his Feb. diagnoses which included the entire colon.

    My husband also has Sarcoidosis and since it has no cure we have learned to think outside the box and look for altenrtive methods beyond the standard Rx’s. He cut out caffine for the most part as well. Can’t say it will work for everyone, but it did him. Wish you the best!

  13. Graham from England
    Graham March 10, 2015 at 1:26 pm #

    Hi Amanda,
    As you are in the UK there is a very good EVOO to try, I’ve even had it tested recently with good marks. Marks & Spencer Italian ” fruity with a peppery finish”. 1 x 15 ml, morning, noon and night, works better before any food.

    • Amanda March 13, 2015 at 7:34 am #

      Hi
      I just wanted to let everyone know…
      Graham, after hearing of your success it was one of the first things I tried and I am still taking it although not 3 times daily, Napoli EVOO. I will look for the M&S bottle though and give it a try. I even give it to my daughter, feel it cant do her any harm?
      I have also been on SCD since finding Ihaveuc, and hey guess what…. no more blood and once daily visits. Yes I am still on Asacol full dose but perhaps next time i see my consultant we will review. But I am so happy to have found you guys. I feel so much better!
      Stephanie, I will ask my consultant where I can source this particular probiotic. So pleased for your husband this is a horrible disease. I am beginning to worry about my son who is 24 his toilet habits are causing me concern. I suppose I need to keep my eye on him.

  14. Graham from England
    Graham March 13, 2015 at 2:21 pm #

    Amanda,
    Its nice to hear that you are giving your daughter some EVOO in her diet, compare this to the many bad things we allow our children to consume? It’s always worth taking a look at passionate yet independent health experts and what they say about EVOO. I have never heard a bad word about it and this is why I have the complete freedom to endorse it as I do. I think people are afraid of taking fats because of what we have wrongly been advised over many years. We have left real honest and true fats behind as our healthy energy sources in favour of carbs and vegetable fats. This is now becoming widely acknowledged as a mistake, even saturated fat (in its natural state) is being endorsed.

    • Bev March 13, 2015 at 2:38 pm #

      Yes!

      Isn’t it something how sugar is the real enemy, when for years it was thought that it was fine and that the saturated fats were the enemy…

      Good times:)

  15. Graham from England
    Graham March 13, 2015 at 3:14 pm #

    Yeah, how I miss being a sugar junkie. Perpetually crashing with tiredness until my next fix. Like many addicts not realising how serious the problem was until truly free. Millions are in this situation, sadly.

    • Bev March 13, 2015 at 4:32 pm #

      So true Graham, but at least the word is out now. The media has made everyone aware, just like with cigarettes, and now it is up to the people:)

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