Jan’s Story about Colitis From Essex, England

Introduction:

Hi, my name is Jan, i live in England in Essex, I have ulcerative colitis and was diagnosed when i was 14 years old i am now 53. I have lots of flare ups in my time but each one has been different, it has affected my life a great deal but I’m still hear. I work full time for my husband in his garage as a secretary. I have three children all grown up now, and I like popping over to Las Vegas at least twice a year and i go on alot of cruises when we get the time of off work.

My Symptoms:

I am currently having a flare up, i have had several over the years but every time i have one it seems like i am never going to get better. my symptoms at the moment are “my belly is constantly bubbling on my left side”, when i bend over my left side hurts real bad, i feel like i want to pass wind but nothing comes out only mucus, which is slightly pinkish in colour, i haven’t got the soft poo’s i’m just not going at all.

My Story:

I met my husband when i was sixteen.  I have been with him ever since and am now married with three children.  When i first met my husband i was in re-mission and was quite well, i didn’t even think about telling him, as i thought i was cured and didn’t think it was any think to talk about.  When i had my first flare up it was just after we were married and i was quite bad.  I was sent to a special hospital in London called St. Marks Bowel Hospital.  I was given a sigmonoscopy which was very unpleasant feeling, and not like the one they gave me when i was first diagnosed, they had to put me under anasetic as i was only young at the time and this disease was only found to be in older people, they told my mum as she was alive then’ that this illness would not kill me , but i would never be cured, and i would be on medication all my life, which was really hard to no when you’ve got your whole life ahead of you.

My doctor at the moment is quite alright, and i have a nice doctor at the hospital, i dont like going to the hospital when i have got to have the “PIPE UP” thats what i call it anyway’ the worst thing is drinking that awful liquid to flush you out, i think that is the worst thing any one can go through.  It is embarrassing for people to keep looking up my butt” but i know i cant get away with it.  My husband is used to my illness now and the flare ups that go with it, they know when i’m not well i get really miserable, feverish,and spend most of the time in the loo, doing nothing. My most most most concern is that i may eventally have to have a colostomy bag, that would certainly change me forever.

Where I’d like to be in 1 year:

i have always wanted my own horse, and a house in the country, with the business we run at the moment it’s out of the question, but perhaps next year it might be the right time, i know i am not going to get better, but i wish i could be symtom free, so dose’s everyone else but that would be my wish if i could have it, just the horse and the house and symptom free.

Colitis Medications:

i am on asacol, lanzoprozole,lopperimide.
for my depression i am on citalapram.
when i have a flare up they put me on prednisolone steriods, but at the moment they do not work, but most of the time they do.jan’s

written by Jan

submitted in the colitis venting area




7 Responses to Jan’s Story about Colitis From Essex, England

  1. Bev September 18, 2012 at 5:45 pm #

    Hi Jan,

    Yes, it is hard when we are told that we MUST be on medication forever. I don’t believe it, though. I really don’t. None of the drugs I was prescribed ‘agreed’ with my body.

    Do you take a good probiotic at all? I was on asacol for 13 long years, and it just made things worse. I have been taking a good 50 billion strain probiotic and a powder called L-glutamine, which heals the mucosa of the colon. It’s working for me, and I am in remission for seven months now! I am completely off the medication also.

    That’s just me…I thought I would share this with you.

    Cheers:)

    • Peter Rye September 19, 2012 at 9:58 am #

      Did you start taking the Probiotic + L-Glutamine with the ASACOL and then gradually phase out the ASACOL ? I would like to know how you did this and which type of Doctor advised you !

      Best Wishes,

      Peter

  2. Bev September 19, 2012 at 5:53 pm #

    Hi Peter,

    No doctor advised me at all…I did this on my own after years of feeling so crappy on the asacol. I thought it was the UC taht was making me so nauseated, loose, and bloody…but for me, it was the asacol. No doctor will EVER advise you to go off medication. Whether it’s because of your health, or just keeping you on meds and in the ‘system’, I can’t say.

    Anyway. I started the probiotic while I was still taking 12 asacol pills per day. I started feeling so good, that I just decided to stop the asacol, one at a time every two days, but I probably could have just stopped it abruptly. I never felt better than when I got totally off of it!! after a month of not taking the asacol, I only had one syptom left…some bleeding when I went to the washroom. I went back to the health food store and asked what I could do about bleeding. They strongly recommended the L-glutamine, as they said it would heal the mucosa of my colon. Two days taking that, and no more blood!! I added the astaxanthin just because…nit because I had to, but because I have heard fabulous things about it as a natural anti-inflammatory.

    I will take these three things forever! That L-glutamine is really something. It’s no wonder athletes take it to hael their muscles, etc. As long as your kidneys arfe good, the LK-glutamine is fine to take. The probiotics and the astaxanthin can’t hurt you at all, so why not give them a try? Everything is costing me about $50 per month…a far cry from the $400 to $500 that I was spending on the asacol…and it was not even helping my UC. The doctor just said that I HAD to be on it forever, like doctors do. If your meds ARE helping, then don’t stop them, but if they aren’t…wny take them, really?

    Cheers:)

    • Peter Rye September 20, 2012 at 11:07 am #

      Thanks Bev for your case story which is inspiring ! We are so much luckier over here in the U.K. in that we only have to pay a nominal amount for our Prescription medications and it is totally FREE when you get to 60 years old ! I admire your pioneering spirit for making the change and am so glad that it is working so well for you. I am still on 8 x Pentasa 500mg + 4x 50mg Azathioprine which is contolling my UC and I have been told that I am “clinically” in remission, but “endoscopically” I am not ! I am now also taking a Multi-Vit + Slippery Elm tabs which helps to heal the mucosa of the colon. Also putting some stem ginger into my probiotic yoghurt which is helping I think !

      With all Best Wishes,

      Peter

      P.S. Where do you live in the USA ? North or South ? I am very much into the American Civil War. Were any of your ancestors involved in the ACW ? If so do please let me know !!!

  3. Bev September 20, 2012 at 4:37 pm #

    Yes, Peter, The UK has great health care. Canada, which is where I live,(not the US), has fairly good health care as well…the higher the taxes we pay, the better our health care seems to be, I suppose…unfortunately it does cost $$…lol. We are quite fortunate with our prescription drugs in that we pay 20% and our employer pays the other 80%. Not perfect, but not too bad.

    I think adding some natural things to a medical drug treatment is a great option. If the drugs are causing you no bad side effects, and are helping to some extent, then there is no need to discontinue them.

    I live in a lovely little town in southern British Columbia, Canada called Penticton. We have had no civil wars in Canada’s history! Not yet, anywaty…lol…Alberta, the province next door to British columbia, wants to run an oil pipeline though our province, and the natuve Indians will not let that happen…so out two provinces are somewhat at odds. I don’t think we’ll break into a provincial war over this, however…lol!!

    Whereabouts are you in the UK?

    • Peter Rye September 21, 2012 at 9:29 am #

      Hi Bev,

      I’m from Suffolk which is part of the East Anglia region of the U.K.
      So you are from Canada ! I thought you were a Southern Belle from Virginia, Carolina or Georgia !!!
      As it happens my Great, Great Aunt, Maria Rye, was the pioneer of female emigration to Canada between the years of 1869 and 1891. She gathered from the streets and workhouses, waifs & strays from the ages of 3 to 16. These so called “gutter children”who had no future in England, but a much better opportunity in Canada where Orphans were well brought up by charitably inclined families ! From public contributions, Maria was able to open a Girls’ home and training school in Niagra-0n-the-Lake, Ontario in 1869. To this house she brought the children, and after further training, they were distributed to respectable families in Canada. By 1891 she had found homes for some 5,000 children !!!

      Best Wishes,

      Peter

      • Bev September 21, 2012 at 9:37 am #

        Wow, Peter, that is absolutely fascinating. I love history. I really can’t get enough of it, even when I was young and in school. I also am in total LOVE with the UK…especially the English countryside. If I could live anywhere in the world, it would be in a two hundred year old thick walled country house (thatched or not) with an old and new mixed interior! What a dream of mine…one or two pubs in the town, even tho I don’t drink…sheep and cows in the fields outside of my windows…if I ever win the lottery, that is surely where I will live!

        Are you a Corry fan?? I’m a diehard one. Best television on the telly!

        Cheers for now,
        Bev:)

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