Ulcerative Colitis Tips


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Ulcerative Colitis Sucks

Hayley from Dorset, UK

Me hanging out with some friends!

Meet Hayley:

I’m 24 engaged, and have a beautiful 16 month old girl :) I live in Dorset in the UK

Some more about me:

I love spending every waking minute with my daughter, she’s growing up so quick, every day she is doing something different. We also have a Doberman cross dog, who we rescued from Greece, she is lovely and very good with our daughter. Best friends for life I think :):)

Colitis Symptoms I’ve Got:

Currently- loose stools, urgency, bloating, pain, blood, mucus, general tiredness

Ulcerative Colitis Sucks

I was finally diagnosed in December 2008 when my dad rushed me to hospital, called 999. Spent 4 years being told it was IBS, until 2 weeks before being admitted I spent 2 weeks on the sofa with severe diarrhea (blood and mucus/water) and vomiting, couldn’t keep anything down, lost 2 stone. Stupid GP said it was gastro flu…

Turned out to be serious (extensive UC) had scans/cameras/biopsies ( consultant said looked like world war 3 inside) 10 bags of saline later was so dehydrated. Spent a week in hospital.
My dad was so scared for me, seeing me being blue lighted to hospital, his dad was in another hospital on life support with legionnaires disease, so it was a terrifying time for him.

Finally over the next 2 years got stabilized on drugs

Feb 2010 another severe flare spent the 4 weeks in hospital, started IV ciclosporin along with my others. My partner was fantastic he visited me everyday bless him, he made hospital bearable :)

Jan 2011 found I was pregnant, colitis 100% disappeared :) daughter born August 2011 6lb 3oz emergency c section

October 2012 colitis returned still bad now in Jan 2013 :(

Due to see consultant in 2 weeks….. Fingers crossed, hoping for a scan to see what’s going on up there haven’t had one since my last admission in 2010…

So camera test up the butt 1st one was terrified, but gave me sedation ( best thing ever) now I request it every time, and I get it, and I honestly don’t care what they do, that stuff is brilliant :):)

I would love to say colitis doesn’t ruin my life, but it does, can not wait to get pregnant again, will hopefully go into remission for approx 2 years :):) ******* fingers crossed*******

Colitis Medications and Supplements:

I take
– 4x 1200mg Mezavant XL daily
– 125mg Ciclosporin
-1000mg vitamin C
Cod liver oil capsule daily

Sometimes it works…. I think my body just gets used to the drugs, then it stops working….

written by Hayley

submitted in the colitis venting area




14 Responses to Ulcerative Colitis Sucks

  1. julie January 31, 2013 at 2:54 am #

    Hi Hayley,
    Itoo live in UK in Yorkshire, I have had this god awful illness 11 years now and have been in flair for 6 months and it’s killing me I have never felt so ill. I have decided it’s time to welcome Boris the bag. You are right about the drugs they only masque the symptoms for so long I have tried so many things, that last so long then fail. And each time it gets worse. The truth is the only cure is removal of our much hated colon. I truly wish you all the very best and hope you find something that tailors your need for relief x x

  2. Hayley from Dorset
    Hayley January 31, 2013 at 10:05 am #

    Hi Julie,

    Thanks for replying. I have asked my consultant for a referral to the spire in Southampton (private) seeing this specialist tomorrow. I have been informed about adacolumn asphersis something like that anyway. It where they remove blood out of one arm, take some specific white blood cells out, and out it back in to your other arm. Few trials have been done and people with UC say they were in remission for at least 12 months completely drug free… After having 1 session of this treatment each week for 6 weeks. Only a few centres in the UK do this, so seeing the specialist to see if I am eligible.

    I would love to give in to the bag and have a complete cure, but I’m only 24, I want more children, I don’t want to be stuck with a bag just yet. I need to explore every single option out there. Looking into treatments in the USA also.

    The drugs are so harsh and the side effects are terrible, I can’t face taking them much longer, but also really don’t want surgery until it really is my only option left.

    • Mike from Ohio
      Mike H February 12, 2013 at 10:46 pm #

      Hello Hayley
      You would not be stuck with the bag for long. I tried everything to find remission but failed. Meds, diets, home remedies, natural remedies, it just got worse. I opted for the surgery and the bag is only temporary and so far 5 weeks after my surgery and I am feeling better than I have in years and I only need to have the bag for 6 months and then the surgeon will create the J pouch and remove the bag. I wish I has done this years ago and I am totally cured. Sure remission is great but if you have severe UC it is not permanent and it will come back. Even when most people go into remisiion the colon stills looks like a bunch of mush and I was just tired of the battles that occured every couple of years. Good luck and do ot be afraid of the bag.

      Mike

  3. Marshanna January 31, 2013 at 3:07 pm #

    Hello Hayley I live in the US I am 27. I was diagnosed in 2011 when I was hospitalized bc it had gotten so bad and sound a lot like what you went through I was severely dehydrated and had lost a lot of blood and had to get blood through a tube in my neck bc they had to give it to me so fast. I was also told that I had ibs for about 6 months before it got so bad I couldn’t hardly get off the couch. Me and my husband has wanted another baby, but because of UC hadn’t decided it if was a good idea but low and behold I found out that I was pregnant only a couple days ago (wasn’t planned. I’m curios how your pregnancy went I’m just now getting a little better my doctor considers me to be clinically in remission although I still have pain sometimes diahea and a lot of mucus. I really don’t know what to expect my gastrologist advised me to stay on my meds, really concerned about that. I’m I so afraid it may get worse. I feel like the doctors and everyone although they try to be helpful just doesn’t understand. If you could please let me know a little about how your pregnancy went and if there was any complications because of UC.

  4. bev January 31, 2013 at 5:30 pm #

    Hi Hayley,

    It isn’t just your body…the drugs stop working in general. I believe it’s because drugs are not the way to treat UC. After having been on meds for 15 years, I have finally attained and retained remission through the use odf a good probiotic (50 billion strains) and L-glutamine, which is what bodybuilders normally use to help repair muscles. It actually heals the mucosa of the colon as well. Along with these two things, I also keep my vitamin D levels up (for inflammation).

    Just my opinion. I am not a doctor, but I find that UC patients often know more about treating this disease than the doctors do. The doctors are all textbook. Try this drug…it stops working, then try that drug until it doesn’t work any more, then try another. They are mostly dangerous drugs, that suppress the immune system, and who only knows the long term effects…I decided to get off the roller coaster and solve the UC myself. I’m so glad I did…I just wiah I had have done it sooner. I didn’t find this website until a year ago, and after reading so many stories, I just had to do it for myself too!

    Cheers, and welcome to this site. You will find out alot on here:)

    • Mark January 31, 2013 at 6:14 pm #

      Bev, your posts are always helpful and insightful. Can you share the dosage for L-glutamine and a recommended brand. I understand the powder is the best way to take it. I take probiotics, vit D, fish oil, folic acid, and just added 2 tbls of extra virgin olive oil. Over the past 7 years since diagnosis, I have tapered down from 4800 mg daily of Asacol to 1600. Would like to stop taking it completely. Thanks in advance

  5. bev January 31, 2013 at 6:27 pm #

    Mark, it is fermented L-glutamine powder by North Coast Naturals. It comes in a plastic black tub (jar).

    I take two heaping scoops (the scoop is included in it) about an hour before lunch, in some unsweetened cranberry juice, because I can’t stand the taste ot it. If you mix it in juice, or a smoothie, you can’t taste it at all! You can tale up to 8 scoops of it per day. I only needed one scoop to get rid of the UC rectal bleeding, but I added another one because of arthritis in my shoulder, It seems to help that too!

    Cheers
    :)

  6. Hayley from Dorset
    Hayley February 1, 2013 at 1:55 am #

    Hi everyone,

    Seems a though you all feel the same as me regarding the drugs. Like you say bev ‘try this one, then it doesn’t work, ok let’s try this one ‘
    I too dread the long term side effects, the current ones are bad enough.
    I have started taking turmeric, cod liver oil, vit c, vitamin D spray, aloe Vera juice and a good probiotic. I ran out of meds whilst on a trip to Paris last week, so haven’t started them again (I did go to chemist and get some more, but due to not taking them for 5 days I didn’t want to suddenly restart until I see this specialist later today) but so far the natural meds are doing something, as haven’t had any pain, blood, hardly any mucus.

    The doctors are text book, we are seeing this man privately, in the hope we get more answers, new treatments etc. I’m sick of taking 8–12 tablets a day so ideally I would love to somehow get into remission and stay there drug free (adacolumn aspheris)

    • bev February 2, 2013 at 8:43 am #

      FABULOUS!!

      Less symptoms with natural stuff…music to my ears!!

      I wouldn’t start the meds again…they will only make things worse, Hayley, since they have before. I think that’s why the doctors ‘scare’ us into not discontinuing our meds…we might find out the truth…that they don’t work!!

      Wow…

  7. KimberlyHI
    Kimberly February 1, 2013 at 11:21 am #

    Hi Hayley,

    I have a 13 month old daughter, same thing happened to me, I was in complete remission throughout my pregnancy. About 4 months after her birth I broke out in a pretty bad flare. It took months to get it under control. I am finally in remission now after prednizone, imuran, and remicade. I want to have a second baby too this year, just not while on remicade. My doc assures me it is safe but I’d rather not. We are going to get me off remicade after a few more months and see if I can try asacol and diet and get off remicade. I did have a pregancy where I was flaring when I got pregnant and lost the baby after 12 weeks. But was perfectly in remission the next time.
    I have a doberman, and a minpin. They love my little girl because they can clean up after her, they are like little vacumns eating her food off the floor. And she loves them, they make her laugh. Her first word was “doggie”
    I hope you feel better soon aqnd find something to help with those symptoms!

  8. Hayley from Dorset
    Hayley February 1, 2013 at 1:39 pm #

    So saw the specialist Dr Fraser Cummins. Having a flexi Sig next week, he has recommended VSL 3 probiotic, apparently some excellent results in UC patients.

    I also told him about stopping my meds due to running out in Paris last week. He said Mesavant XL (which I was on 4.8g daily) has been shown to cause more problems that actually prevent flares… Funny how since stopping this drug, I feel fine….

    After camera test will have a better idea, of what my next course of action will be.

    :)

    • bev February 2, 2013 at 8:40 am #

      Hayley, you have an EXCELLENT doctor!! How lucky you are!

      The fact that he endorses probiotics, and that he admits that the mesalamines (asacol, mezavant, lialda) can cause terrible symptoms makes him THE BEST, in my books! Stick with that doctor!!

      It is so telling that you feel better off of that drug. I ‘ve been saying this for a very long time….you are more proof!

      :)

  9. Gemma February 13, 2013 at 2:09 am #

    Hi Hayley, really interested to hear if you can get Adacolumn, it sounds very promising. I’m in the UK too (Belfast) and no dr has ever mentioned it. Do you know where it’s available?

    Thanks and best wishes, Gemma

  10. Gemma February 13, 2013 at 2:12 am #

    Sorry just re-read and see you said Southampton! Thanks. Keep us posted on how you get on :)

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