Ulcerative Colitis Tips


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Flare Up Indicators All Normal. Why?

Tone the fighter

here’s a picture of me

Introduction:

Hi everyone! I’m 39 years old living in Chippenham (UK) and have UC Proctitis. I was diagnosed with this at the start of this year (2013). I have three kids one 8yr old boy and two girls, 7yr old and a 5yr old and a loving, supportive wife.

Some more about me:

My main hobbies and interests are Kickboxing & Boxing and all the fitness that goes with it. I have had a few amateur fights in both disciplines. All of the family do this sport even my girls as I want them not to be pushed about but to have control. I am thinking of changing my fight name to ‘Tone Bowel Baker’ as it’s a bit like ‘Rocky Balboa’ lol!

Symptoms:

At the moment I have bad gut pain. Sometimes bloating. Not wanting to eat. Go to the loo about 10 times or more a day, soft poo and not much of it and then sometimes constipation. No sleep some nights. Mood swings. Bad fatigue.

Flare Up Indicators All Normal. Why?

A few months of having very soft poo and seeing blood and white mucus in it I thought I had piles again. So reading up on this I left it to see if my body would mend its self. It never did so I went to the Docs and he took bloods and felt my stomach and then the gloves came out. That’s right “Get on the bed lie on your left in the fetus position” then a finger went in (didn’t even buy me a drink!). Ok I didn’t have piles but he was not sure what it was so sent me to see a gastroenterologist. A few months later I went for my appointment where I had to again get on the bed lie on my left in the fetus position. The Consultant explained what was going to happen and I could watch it on the monitor. Not the best experience in my life and I am not looking forward to it again if I have to. I went home and but had to go back two weeks later for the results. The Consultant told me I had a form of IBD called Ulcerative Colitis th e one I had was Proctitis. He explained about it and told me it wasn’t one of the bad ones so not to worry to much and to us the suppository given.

I did all of this but now It has got worse for me I am in pain from my gut and have constant fatigue. So went to see my Doc and he has given me some more tablets which don’t seem to do anything. The Doc signed me off work, that was back in June (6th) and I am still not back at work as I just don’t have the energy and in constant pain. It’s started to get me down to be honest but I have the support of my wife which is the biggest help. The Doc took blood last time but my flare up indicators were all normal. Does anyone have all the pains etc, but no blood in the poo? I am going back to the Docs on the 31st of July but I think nothing is going to change.

So today I have started the new diet which I down loaded from here. Hope it works! I really want my life back and return to training and get back in to the ring wtih my new name.

Medications:

Pentasa (Mesalazine) suppository befre I go to bed.
Pentasa (Mesalazine) oral tablets slow release twice a day.

written by Tone

submitted in the colitis venting area




15 Responses to Flare Up Indicators All Normal. Why?

  1. Fay July 28, 2013 at 4:10 pm #

    I also get really bad stomach pains. Sometimes doubling me over. I also get really bad stabbing pain right above my right hip. It’s like what I would imagine being stabbed wouLd feel like. I also get this weird popping/fluttering in my right back. lack of sleep from being in bathroom all the time, exhausted and mood swings too. I was just diagnosed a month ago with UC and wasn’t really told much about it. I had to google information. My dr put me on Lialda. 4 pills in the morning with food. It’s been a month, no change. I also go to the bathroom sometimes 10 to 12 times a day. Painful, soft and I push so hard that my whole body convulses. Blood and mucus and just pain. I also get pain, sharp and stabbing through my anus. When I told the dr he gave me a prescription Dicyclomine Hcl tabs. The information sheet from the pharmacy said not to take if you have UC, but my UC dr gave them to me. I haven’t taken them though. I have no ideal what’s considered normal, but I also have the same symptoms as you. Hope things get better for you and you get more answers on your next visit. You said it was on July 31st, that’s my birthday! :).

  2. Tony (UK) July 28, 2013 at 4:27 pm #

    Hi Tone, I know exactly how you feel and yes you do get pain without blood. I’m amazed you can carry on in your chosen career because if it were me I would definitely be out for the count. You could not have come to a better place than Adams site, it’s helped me through some desperate times. It’s nice to know you have others even though they may be thousands of miles away willing to share their experience and the load we have to bear.

  3. Joe July 28, 2013 at 10:21 pm #

    Hello, that’s interesting about your blood inflammatory markers coming back normal. It makes me wonder how can UC be an inflammatory disease? I was diagnose with UC about two years ago, and have found some relief by following the Paleo Diet and excluding dairy, wheat, sugar and alcohol from my diet. I also take Asacol 4/day (not sure if they help) and Pentasa Supps at night.

    Was hospitalized last year for three weeks due to massive flare-up, and was prescribed Predizone, 6MP, Azathioprine and Cyclosporine. None of these toxins helped me. The surgeons wanted my colon out – I said “no freaking way” – self discharged and staggered out of there. Thankfully, diet and stress reduction has helped – somewhat. Still lose blood, and have some ordinary days of 5 BMs/day – but,I do lead a reduced “normal” life.

    I have regular blood tests, and when I’m shitting blood 5+ times a day, my inflammatory markers are at normal, as is everything else. My doctor can’t answer my questions about this anomaly. Just have respect for this disease, as it can really kick you around, as it nearly killed me last year. Not sure about getting your old life back, as that’s something I’ve forgotten now – but you do learn to live a fulfilled new life. Good luck.

  4. UC Family Boy
    UC family boy July 29, 2013 at 3:43 am #

    Hi tone,

    Well I can only add to joes thoughts about blood test showing no inflammation markers. I actually did the blood tests at the hospital on my 6month GI appointment. I think it went a bit like this ‘doc I am on off flaring, currently flaring’, ‘ok let’s take some blood tests to see this’, ‘come see a BM, and that will show you’!!!
    2 weeks later my local doctor told me my results ‘no inflammation’. So talk about finding a solution from the nhs to help when they would rather look at blood test than hear me talk about my symptoms and daily struggle.
    Sites like this will help, supplements also and diet will help alongside Meds.

    I do think we are in a time of discovery so lets hope the solution is not far off.
    Taz

  5. bev July 29, 2013 at 1:38 pm #

    All I can add is that no blood is good!

  6. Joan H
    Hope July 29, 2013 at 6:47 pm #

    Hi Tone! Love your name and your attitude. And your girls boxing! That is great! My daughter started – she is 17 – and I really wanted her to feel confident too. She’s got quite a punch! :) I also have proctitis and UC, and have had the same experiences you are talking about with inflammatory markers within normal limits, and still having the horrible debilitating pain, bleeding, doubled over pain in abdomen and rectally and having once to be taken out of my office almost by ambulance (I refused :( because I knew what it was, but everyone else was freaking out! It was embarrassing, I must say…Anyway, take small steps and write down everything that goes in your mouth – food or fluid. I simplified my diet to plain rice, then added bits of chicken after a few weeks and have been on this diet for going on 87 – 8 weeks or so. I’m adding a bit of a new food once a week, seeing how my gut reacts and then if it’s okay, adding a new food the following week. If I react, I stop that food and give my gut a week on just rice and chicken bits til I feel better again. I also added Renew Life probiotics – there’s lots on this site on gut bacteria, and I have become a firm believer in simplifying your diet while you re-populate your intestine with good bacteria. I can tell you that after two weeks the improvement was so marked that my husband said he couldn’t see pain in my eyes for the first time in 2 years! (That’s how long my “flare” lasted). I stayed on lialda 1.2 GM two tabs in the morning and 2 tabs in the evening, and a canasa suppository at night but have been able to come off the prednisone and enemas I was having to take. And continue to work full time, which I had considered disability for a while I was in so much pain. So keep up the good work, check this site for great ideas and lots of support and positive help. Also, I was into exercise, which was too much for a while – seemed to make my UC worse – and have now been able to exercise again – so there is hope! Hang in there! Hope

  7. Adam
    Adam July 30, 2013 at 9:58 am #

    Hey Tone,

    I’m reading your story again for a second time since posting it, and wanted to send you a quick “we’re thinking about you!” and pulling for you.

    Saw some commercials for some ultimate fighting stuff on TV today and hope to see you up there sometime.

    Keep your head and chin up!!

    The worms gonna turn for you.

    Best.
    -Adam

    • Tone
      Tone July 30, 2013 at 10:34 am #

      Thanks Adam for your support. I decided to go back to work today and it wasn’t to bad, had a few moments when I had to dash to the loo and a some pains but in all I’m getting back to it. I’m not one for doing things by half measures so I have also started training again. I have read alot of other peoples posts on the site & it’s made me look at my situation, I’m not in hospital and I am not in excruciating pain like alot of you and that’s not nice. So I made up my mind, while I am not in crippling pain I am going to fight it the best I can. You may see me kickboxing or boxing never say never!

  8. Tone
    Tone July 30, 2013 at 10:39 am #

    Also I would like to say thankyou to everyone for your kind words and support. This site is the best thing I have found for support and it good to know all of you are out there xx

  9. Chet July 31, 2013 at 3:22 am #

    Hi Tone,

    I’m in London (UK) and like yourself and others my wife suffers from UC, has done for 4 years. The medication you are on is what my wife is taking and has done everyday. She has had really bad flare-ups in the past which meant she had to go on predisinol (not spelt right I think) for a couple of months which seemed to take control of the flare-ups.

    We have found various foods can be a direct influence which we are still trying to determine exactly what. I did start a diary recently listing what my wife ate and how she felt and reacted to it.
    We stoppped updating the diary because my wife is now 5 months pregnant and UC can get better or worse for some women during pregnancy, and because of that what she eats may not be accurate. What I do know if with our first child who is 2 years old my wife was great after the birth of our son for almost a year until symptoms began to show again.

    I am hoping again that this time around she has a good spell because I have never seen her so happier and photos show that she had gained weight again (pregnancy weight or just looking healthy again).

    As soon as she starts to get worse I will immediately start updating the food diary and seeing how that prevails. These is alot information/research on here and the net about specific foods to avoid and those that are good for you. Remember different foods affect different people so it will be a learning curve and a case of trial and error.

    Either way good luck with it and keep your head up as im sure you will.

    • Sharon July 31, 2013 at 4:57 am #

      I have 4 kids and my husband used to say I was the healthiest when I was pregnant :)

  10. Gemma August 2, 2013 at 8:03 am #

    Just to add in my bit about the inflammation markers, when I was given a prescription for steroids by the hospital in 2010 they took a blood sample at the same time. I picked up the steroids from the pharmacy straight after but held onto them for 2 weeks because I was scared of taking them, it just didn’t feel right. Then the hospital phoned me to tell me my inflammation markers were all normal but I was to take the steroids anyway, they were pretty mad when I told them I hadn’t taken them yet. I ended up taking them a week later and my symptoms cleared up within 24 hours. Being on them despite all the side effects was the easy part for me, it was the coming off them that was pure hell. It took my body about 2 years to get back to feeling right, and I was in a flare again about 2 months after finishing them so they were not worth it and I wish I had listened to my instincts. I can totally relate to other posts talking about doctors pushing medicines and making you feel guilty if you don’t take them. Just trust your instincts…

  11. Tone
    Tone August 6, 2013 at 4:00 pm #

    Well went to the Doctors last week and I have been put on the roids (Prednisolone. So I’m on them for 2 weeks then have to be weaned off them, I am now an addict, lol! On the 20th I have to go and see my gastroenterologist. Lets hope that goes well! Any away on holiday with the family next week first time with meds.

    • Adam
      Adam August 7, 2013 at 6:56 am #

      Hey Tone,

      Good luck with the steroids, and great for you in getting some vacation with the fam. Enjoy it as best you can, and talk with you soon,
      Adam

  12. Tone
    Tone September 3, 2013 at 1:23 pm #

    Had a great holiday but back to realitity. Went to see the my gastroenterologist on the 20th of Augsust and he has said I need to have a full Colonoscopy. Last time I had a flexible Sigmoidoscopy which was bad enough but this time I will be given sedation for the examination. I am not looking forward to it and to be honest a bit scared of what they will find. I try to make light of it all for the family and friends, but deep down I am starting to get worried about it all. Well I will be going in next week on the 12th September and then, well then we will see.

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