Char’s World of Colitis

Charlotte H fullIntroduction:

Hi there, I’m Charlotte, 35, from London and I was diagnosed with UC in June 2009. I can honestly say that the last three years have been the hardest years of my life so I’ve signed up to this site in order to meet fellow friends around the globe and reach out for some positivity.

I enjoy writing, music, pottery, open spaces, greenery, dogs, friends, wine (uh oh) and good conversation.

Some more about me:

Well, I’m an events manager by day and a budding travel writer by night, or whenever I’m lucky enough to get a commission! My friends would say that I’m an up for a laugh, vivacious, and nice human being. They would probably say that I worry a lot about stuff that I shouldn’t, like work, but hey I’m working on that.

I love my life and the only thing that gets the better of me from time to time is this horrible disease that leaves me with no energy to go out to enjoy it.

Im a born and bred Londoner – actually, I’m one of the very few real Londoners left living in London. I love my city but I also enjoy leaving it from time to time – it can sometimes be too stressful.

I love dogs and I’m hoping to get a furry animal soon.

Symptoms:

I’m currently bleeding with mucous and have pretty bad abdominal cramps.

I’ve been in bed for about four days with no energy. Sad times. I’m gutted.

I used to suffer with quite bad mouth ulcers – however, I believe i have found a cure which I am going to write about below.

Char’s World of Colitis

Charlotte’s World of Colitis. A disease I had never knew existed until June 2009 when I was on a break in Greneda, writing a travel feature for the newspaper that I worked for at the time.

It started with some weird cramping and a little bit of blood that got progressively worse as the year went on. Unfortunately, the disease went undiagnosed for a long period of time which meant I suffered more than necessary. I kept being told that I had iBS but never mind.

UC has changed my life in so many ways – in fact it is still changing every day. I can honestly say, this is the hardest thing I have ever been through and until anyone of us becomes ill – you never really appreciate good health until you’ve lost it. What is that saying, the ‘greatest wealth is your health’. Ain’t that the truth.

So, I haven’t had a boyfriend for two years – not a serious one as I haven’t had the energy or commitment to focus on a relationship while I have been suffering so much. Also, I’ve been really embarrassed about the symptoms that come with it – i’ve had really bad wind!! I’ve also felt really unattractive and bloated a lot of the time due to the steroids I was on at the start of this roller coaster ride.

However, about 16 months ago the doctor put me onto Azathioprine and I do believe that I saw a difference. I never reached remission but I perked up. I had regular blood checks to ensure my cells were doing all of the right things (which they were – hooray, something works) and 2012 was not as bad. Well, actually my joints flared up a little bit but they were kept under control on sulphasalazine.

The whole time I went through this – I continued to work, five days a week, on a busy national news desk without a break. I do not know where I found the strength, grit or determination to continue working like I was a fit and healthy person. I always knew that I had a very strong inner strength and the type of of resilience that is rarely seen, but actually it is something that I regret.

Maybe I was in denial? Maybe I was too ambitious? Or scared of getting fired? Or just plain stupid. I do not know. I do know that I put work before my health and that is something I will never do again.

However, I am off work now for the first time in five years in order to finally get to grips with what has happened to my body and to deal with the physical and mental ramifications that come with it.

Last Friday, I think I had a little bit of a mental and physical exhaustive break down. I said to myself, no more. I’ve packed up my desk, GP signed me off and I’ve spent the last week reading and reading and reading.

I’m now going to look at new diets, holistic therapies and any other fads that are out there in order to get well. I’ll do anything. I’m going to start a blog.

I say this, after spending four days in bed feeling very sorry for myself, but I gotta believe and I have to stay strong. I love my life and people in it too much to give up.

I’d love to connect with people on this site that are in the same position as me, or who can give words of encouragement, tips, advice, rants, laughs and thoughts.

It’s really hard for my friends and family to understand – and I am only too aware already of how much I have lent on certain people over the last few years for support. It’s a strain on everyone, not just me.

Unless people see a broken leg, I believe that other’s will always find it hard to relate or support continuously. No one wants a depressed friend, do they! And that is just the problem with Colitis – it is continuous. My parents are great – they call, they check in, but they worry. And that makes me worry. I don’t want them to worry. I guess that is life though.

On the bashful side of things – I’m not bothered about my doctor checking out my butt all of the time. It’s the last of my concerns…. ;)

On that note, I hope to hear from you all soon.

Now what the hell is going to stop the bleeding? Help!

Love, Charlotte xx

Medications:

Azathioprine worked for me to a certain point. I never reached full remission but I did feel better.

However, I want to share a drug with you that quite literally saved my life. I suffered with severe, SEVERE mouth ulcers for the last five years. I’ve never experienced so much pain in my life. I continued to work – again I do not know how. I tried everything in the books from bonjela, to steroids, to doxycycline, to azathioprine, Corlu pellets – the lot. Nothing worked. I was at my wits end and had no life.

Until I stumbled across a professor at Guys Hospital in London who told me I had two options left, great! Thalidomide OR colcichine. A drug normally prescribed for Gout symptoms.

I said yes to Colchicine and after five years of agony my ulcers went away. To this day I cannot believe it. Pepe Shirlaw is her name – I will never forget her. Apparently, it is something to do with your nutrofills – and this drug surpresses them. Hey presto – no more ulcers!

It doesn’t come without it’s controversy but it has given me life back so I can at least eat, speak and go out now.

written by Charlotte

Submitted in the colitis venting area




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6 Responses to Char’s World of Colitis

  1. Christine from NY
    Christine May 17, 2013 at 8:34 am #

    Hi Charlotte. I hope you are feeling better. I am a UC patient. I have been up and down with this. I completely understand your pain. It is bad enough to suffer the bathroom trips but to be in public and have “bad wind”, lol… terrible. Depressing at times when your friends get disgusted because you cancel plans or cannot make plans. If you have urgency and they don’t understand what that is like it can make friendships hopeless. I do have some great pals who have stuck with me thick and thin. I am grateful for the love i have around me and i love connecting with others on tbese type of websites. Take care. Send a note anytime.

    Christine.

  2. Wendy
    Wendy May 17, 2013 at 11:37 am #

    Hi. I read your entry. I’ve never had mouth ulcers, so I haven’t had to worry about that, but as for the rest of it, I feel great that you wrote about this so that I can see what it is like for you dealing with UC, and it is very similar to life for me dealing with UC. I tried a lot of the drugs. I find it very difficult to work. I don’t know how I did it either, working full time racing to the washroom coming home and making dinner for three children and driving them around to their activities. Exhausting even if you’re at the best of health. I tried a lot of drugs and drew the line at remicade. All I need is Pancolitis AND cancer.

    I take natural remedies now and nothing else. If I have to get my colon removed I will, but I will not pump my body full of drugs like I was. I just had my first Renew Life Ultimate Flora critical care 50 billion live culture capsule and my first dose of L-glutamine about ten minutes ago. I also take astaxanthine, Chlorella, spirunilla, and multi-vitamins.

    Anyway, I understand what you mean about how difficult it is living with this disease. Sometimes I feel completely healthy and I go ahead and eat whatever I want if I’ve felt great for a long time and that sends me into a flare. I always have to be diligent. Socially it gets tense because people tend to accuse me of being anorexic. That makes me mad. My appetite is squashed, and my goal isn’t to become as thin as humanly possible, it is just happening because I can’t really eat (when I am in a flare anyway). When I do eat, I have to be extremely careful, so I won’t have the whipped chocolate dessert, even if it looks and tastes awesome. It’s aggravating. On top of it, people bug me about it. The only person who seems to get it is my mother.

    I’m glad Colchicine worked for you. I think after a while it might stop working though, and it wouldn’t hurt to try to find natural cures. I’ve never had mouth ulcers with this though, so I don’t know what it is like to deal with that. It is good to hear that you are getting your life back.

  3. Graham from England
    graham lee May 17, 2013 at 12:15 pm #

    Hi Charlotte,
    I presume you are under the NHS? I haven’t been involved with them much over the last 14 years as smoking kept me very well (another big story here) but they have never mentioned diet or anything to help myself. To be offered only drugs with little or no advice and eventually (out of desperation) colon removal is tragic. You have come to the right place I believe, this site is full of real information. Some of the more natural things you will try may not work as fast or as well as some drugs but you will at least be healing yourself and not just papering over the cracks. A few years ago I would have dismissed all natural solutions and expected to take a tablet from who else but a doctor? Well, I couldn’t have been more wrong, in fact a research backed natural solution has changed my life and I no longer smoke either. I have also turned my body the right way up, I no longer treat it like a non stop machine that doesn’t sleep and constantly consumes rubbish. It will take some time to find out what works best but you will be healthier in the long run I promise. Sounds like you are not afraid of hard work so good luck!

    Here is my post about the best thing I have found for my UC (it also works for others). https://www.ihaveuc.com/olive-oil-is-helping-my-ulcerative-colitis/comment-page-1/#comments

  4. bev May 17, 2013 at 2:05 pm #

    Charlotte. you came to the right place!!

    This site is the very best. You will find a home and many virtual hugs here.

    Listen to Graham. Natural is the only way to treat this condition. I learned that after 14 straight years on meds. He swears by, and has attained and maintained remission with extra virgin olive oil. Yes, that’s right!

    Me, on the other hand, well I am no longer on the medication merry-go round, weither, and vow never to be on meds again. I do not take the olive oil, not yet anyway, but I would certainly try it if it’s ever necessary. I found COMPLETE remission (for over a year now) on a good probiotic (ULTIMATE FLORA CRITICAL CARE by RENEWLIFE), once per day, first thing in the am on an empty stomach, (because that definitely matters), and then no food for at least half an hour. I also take fermented L-glutamine powder, once daily, again on an empty stomach, about an hour before lunch. L-glutamine actually heals the mucosa of the colon, which I think the extra virgin olive oil may do as well (is that correct Graham?).

    You will find that the drugs used to ‘treat’ UC only cause more illness and even further damage. They can be quite dangerous. They also all stop working, eventually. At least that’s what I’ve learned on this site after reading thousands of posts from other UCers. I wish I had not taken them for 14 years. There was no website back then for me to get ideas from others with UC. Only the good old doctor, who is now less than thrilled with me….because I am finally BETTER all on my own, with no help from him…poor guy!

    Just try the natural route. You do not HAVE to stop taking your meds while you try the natural stuff…but you might just start feeling so much better, that you may want to!

    Cheers,
    Bev
    :)

  5. Graham from England
    graham lee May 18, 2013 at 4:46 am #

    I’m not sure if Evoo heals the mucas directly but it improves it for sure. H. Pylori bacteria exacerbates IBD and is very common in UC/CD. It damages mucas, causing inflammation, ulcers and other digestive problems, Evoo inhibits growth of the H. pylori bacterium.

    I also placed a recent research link on my post stating that where oleic acid (in evoo) was present at the colon, inflammation was less apparent or non existent.

    Food for thought!

  6. Zoe May 29, 2013 at 2:27 pm #

    Hi Charlotte,

    I was diagnosed in October 2011. like you I suffered longer than I should and was told to keep food diarys or ibs. It was finally an endoscopy that confirmed uc. Since then I have been on 2 Pentasa tablets, but have to also take 2 in the eve if having a flare up, also I take probiotic tablets and b12.

    This disease has totally knocked my little life, I am constantly tired and have no motivation. People have stopped asking me out as I kept turning them down. It is true what you said people don’t realise your suffering as they don’t see anything wrong like they would a broken leg. I have gone from a bubbly, spontaneous person to someone that worries where every toilet is , what I can and can’t eat, I feel bloated all the time and constantly pass a lot of wind . How my 2 boys and partner put up with me I don’t know. I actually feel like the shadow of the person I used to be.

    The foods I find bad are anything dairy, alcohol, onions,tomatoes in any form these all make me bleed within 30 minutes of having it, the food that bloat me and make me feel uncomfortable are the above and also caffeine, spices. I have found that eating little and often has helped a little.

    Asacol foam enema is good for the bleeding, although really bloats you out, so I try not to use it as it gives me cramps but find its the only thing that stops the bleeding.

    I am a hairdresser and 8 wks ago a client offered me a drink of fresh orange, I did so and within 20 mins I knew I had done a bad thing. That 1 drink put me in a 4 week intense flare up, all I could drink was water , also I read on this site that Bananas were good for someone and ease the colon, so for 4 weeks that’s all I ate water and bananas. I slowly got bit better but we will never be normal.

    I became a member on here a few months ago and was at my wits end and I had some very good advice. It’s nice to know there are people that understand this awful disease, people that haven’t herd or never experienced it just think “oh she has stomach ache again,” don’t realise what we are going through.Sometimes I really don’t know how I manage everyday. I really thought that when I was diagnosed I would take the tablets and it would all go away and heal up. How wrong was I. It’s for life.

    I wish you all the very best Charlotte.

    Zoe from Dunstable , Bedfordshire x

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