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All Advice is Welcome! Newcomer To This Illness

Introduction:

My name is Dal, I am a 37 year old married father of two, living and working in the south east of England. I am a college lecturer. I enjoy squash (although I haven’t played for quite some time now) and football.
Symptoms:
I am in the midst of my first ever flair up (it started 6 days ago) since my first ever experiences last year. I’m off work AGAIN. I am writing this from my bed as I have terrible bowel cramps and lethargy, no appetite. I was up 7 times last night on the loo, started to lose more weight – down from 12 stone when fit and healthy to 10 st 10lbs – one good point is that the beer gut has gone!. I have very loose stools at the moment going about 10 times a day. I just feel like I have no energy at all. I spent yesterday in hospital have an assessment, blood test, stool test, rectal examination – as still waiting for the proper diagnosis from colonoscopy biopsies. Result of hospital visit is that I have just started a course of steroids 40mgs a day. Praying that they will work.

My Story:

Family history is Grandad died of bowel cancer aged 75 and Nan has has pollups removed aged 80, Mum has IBS. I am 99% certain I have Ulcerative Colitis but I have am waiting for a colonoscopy to confirm this (booked for Friday 25/05/12. I have had symptoms of UC since April 2011 but didn’t know about UC and left it until October 2011 before visiting my GP. In April 2011 I saw blood on the toilet paper but dismissed it only happened once and not again after that. Then over the following 3-4 months things deteriorated, my stools were hard followed by softer bits, again, I dismissed this as diet and stress. Then I started experiencing the urgency, which was a nightmare. Then one day the toilet pan was full of blood and I went the Dr’s. That was in Oct 11. I lost a stone between then and the Xmas hols and didn’t work at all in Jan. I have had 2 sigmuidoscopys, a barium enema scan, still waiting for the colonoscopy 7months on! UC is ruining my life at the moment because I have two kids aged 1 and 3 who need my to be fit, my wife needs my support. My wife is finding it difficult to help me because she has her hands full with the kids. Work is a nightmare because I am college lecturer and I need the toilet all the time during lessons. Sometimes I only just make it to the loo! They have been supportive by putting my on 80% of normal teaching hours. I have been on Mesalazine tablets 500mgs 3 times a day and 2 500gm supps at night for the past 10 weeks. This was increased to 4 x 800mg twice a day with the supps at night and 40mgs of steroids which I started yesterday. My main concern is the long term cancer risks, especially as It has taken so long to get treatments on the NHS. I’m going into my 8th month since my first appointment with this and still no proper diagnosis – if it was cancer I would be dead by now. My other reason for writing is that I realise that I need to change my diet completely a nd I want as many ideas as possible from people. I love all foods but their seems to be quite a lot of confusion as to what is good and bad to eat. A list of good stuff and stuff to avoid at all costs would be useful as well as recipes. I was surprised to see Adam cooking bacon as I thought that wouldn’t be good.
Where I’d Like to be in 1 Year:
Eating a new much healthier than I have done in the past and controlling the symptoms. competing in either a triathlon or the London to Paris cycle event.
Colitis Medicatons:
Mesalizine calmed things down and I was able to work again but I still had loose stools.
I’ve just started the steroids and hope that they will sort things out as I feel really crappy at the moment.

written by Dal

submitted in the Colitis Venting Area





18 Responses to “All Advice is Welcome! Newcomer To This Illness”

  1. HANNAHMay 24, 2012 at 6:51 am #

    Start in the morning before eating anythng. A slice of Ginger root in water , heat it up nice and hot and put lemon in it if you like…..do this in the am and pm.. also get the book called ” The Maker’s Diet” by jordon rubin….I have been doing this diet and it is about eating better and healthier……..so far no bleeding… PS check out on google the benefits of drinking ginger and you will be amazed of what it takes care of medically…… Barnes and Noble can get the book for you… So far 23 days no bleeding feel great…….

    • Dal
      DalMay 25, 2012 at 2:28 pm #

      Dear Hannah,

      Many thanks for the tip I will give it a go and hopefully feel the benefits soon.

      Yours,

      Dal.

  2. EricMay 24, 2012 at 11:02 am #

    Hey bud. Colitus sucks!

    I’ve had UC for about 20 years more on than off. I’m still suffering but almost used to it.

    BUT, I recently discovered this site, like 3 weeks ago.

    I was until today in a bad flare up that has lasted, including hospitalization, for OMG 5 months.

    up to 25 movements a day of blood, mucus etc. yuck.

    a week ago I started eliminating ALL BREADS AND SUGAR. Yesterday, I started probiotics. It may be too early to tell, but for the 1st time in a LOONNNNGGG while, I have not been on the toilet in 6 HOURS!!!! That is awesome!

    Good luck!

    Eric

    • Dal
      DalMay 25, 2012 at 2:40 pm #

      Hey Eric,

      Thanks for the message. I can’t imagine what 5 months in hospital must be like and I hope I never have to find out! I’ve heard that bread is bad for your (our) guts I don’t think I am ready to cut it out completely yet but I will definitely cut down. I am have been eating probiotic yoghurts for the last week myself in the hope that they will help, although I am not sure if they are yet.

      Hope you keep getting better pal.

      Dal.

  3. PeterNZMay 24, 2012 at 1:49 pm #

    Cuz,
    Prednisone is your friend right now. Give it a few days and she’ll be right. Then look for a maintenance drug (5 ASA etc.). Gluten free seems to help me too.
    Good luck,
    Peter

    • Dal
      DalMay 27, 2012 at 10:34 pm #

      Hi,

      Thanks for your reply. I am still swallowing those lovely tasting tablets and went though the night last night not needing a crap for the first time in 2 weeks! Still got diarrhoea though but maybe they are beginning to work now.

      All the best,

      Dal

  4. MarciaMay 24, 2012 at 1:54 pm #

    I am not sure why they have not done a colonoscopy to diagnose you. I was diagnosed with severe ulcerative colitis three months after I started getting symptoms. After being diagnosed and being put on steroids and asacol that put me in somewhat of remission not 100 percent. To make long story short I ended up not working, in and out of hospital stays from dehydration blood transfusions. Tried all meds including humira. My body was not responding to any of these. During my final time in hospital for my severe ulcerative colitis I had a bloof transfusion again and my final decisions were down to giving remicade a try or getting the surgery. I’m 36 years
    Old and in beginning of having severe colitis would have never thought of choosing surgery. Well because of my body not responding to any meds and me being so weak and tired of trying everything on Jan 31 2012 I had my first of 3 surgeries to have a ileo jpouch…now for people with mild to moderate colitis I’m not sure why everyone does not follow the SCD diet. It’s a change in the way you eat for sure but if you feel horrible changing your diet habit is not that hard. I know people that have mild colitis and stay off of meds and have not had flare ups in years being on this diet. I ordered the book and tried it and it did help however my colon was too damaged for anything to help( my surgeon said one of the worst he has seen) I have my final surgery June 12 and have to say I feel like a whole new person compared to this time last year. I hope surgery is not a route you have to take but I always say instead of suffering for years surgery is definitely an option :-) hope it works out for you and you try the SCD diet.

    • Dal
      DalMay 27, 2012 at 11:32 pm #

      Hi Marcia,

      Thanks for your message, you have really been in the wars by the sound of it. Obviously, I hope that surgery is something I never have to go through myself but I am worried that I am failing to respond to the prednisilone at the moment and that I my bowel must have been damaged over the past year without any treatments. It is good to hear that you feel a lot better because of the surgery and I will remember that for the future if it ever get to that stage. Right now I am doing everything to try to get it back in remission, changing diet etc. I had to cancel the colonoscopy because of the flare up so will have to wait longer now until it calms down. Then I will have a better idea if my situation.
      Thanks again for your message and advice and good luck for the rest of your treatment.
      Dal.

  5. UC Family Boy
    UC Family BoyMay 24, 2012 at 3:32 pm #

    Hey Dal,
    I am in the same boat as you and unfortunately do not know where it is sailing.. I guess I had symptoms that I didn’t take note of either, and because of that I didn’t know how long they went on for. Enough though for my initial scope to show UC on my left side. I too was annoyed at the slow NHS service that I went to A&E making out worse than it was just to be seen (though 6 BM a day + blood at times was bad enough), than after slow service with my clinic I paid for a private GI after the result of the A&E scope came back and he put me on 3x 800mg Asacol, 60mgs Pred taper program and 2 x enema. What is interesting is the program, I responded in 2 days with ‘normal’ stools – I would say private was great option initially to get seen and dealt with before going back for a full scope on the NHS. Taking of Stools, I came across this site which might also help you assess your movement http://www.gutsense.org/constipation/normal_stools.html Its hard to know what is going on inside but we can see its outcome…
    So anyway, I have an initial meeting on the NHS on 30.07.12 and from than a full scope potentially. All in all it will be the best part of 8 months before I start to know where I am with this, but take control, push and pull the system to get what you need, if not for you than your kids. Its our Health, I fear cancer too which ultimately is the goal to avoid. for us to have this we must obviously change our lifestyle but take the right steps so you can assess what is right and not to change. I am worried like you, let me know how you get on with your meeting tomorrow- ask loads of questions you need to know about.

    • Dal
      DalMay 27, 2012 at 10:53 pm #

      Hi Mate,

      Thanks for the advice. I looked at the website, which is interesting, I am a definitely a 7 all the way right now. I didn’t need the loo during the night last night so maybe the steroids are beginning to kick in a bit, although they are taking their time. I’ve been on them for over a week now 40mg Prednisilone a day (maybe I need 60mgs like you!) + 3 x 800gms Asacol + 2 500mg supps. Signed off work until Thursday and colonoscopy cancelled because of flare up so now longer to wait again. Blood test tomorrow and GP appointment on Tuesday. Not sure what the outcome of that will be as last time I was there they were suggesting that I might need to go into hospital to have the steroids injected but I can’t see that happening as I feel much better since then, I just need to BM to firm up from the diarrhoea I currently have.
      I did try and get a private consultation about this but my GP scoffed at the idea. I have moved since then and am now in a village with an excellent surgery who are taking much more care of me. I believe that my last surgery let me down badly as I have heard of several cases like mine where people have been referred for colonoscopies within weeks. I was thinking about complaining about it actually but I am not sure where to write. If I have another bad flare up and I am not happy I will be going to A&E too and I agree, we need to push and pull the system and make it work for us otherwise we get nowhere – I have been far too laid back about this – but not anymore.
      I hope all goes well with your appointments. I have begun to change my diet now, no beers (crying about that), going to go gluten free and also looking at paleo diet -got to research that now before the kids are up! Maybe you should think about this too if you are not already doing so.
      All the best and good luck!

  6. CindyMay 24, 2012 at 5:10 pm #

    I have just started the SCD Diet. I am only a week into it but am noticing some positive changes. DON’T stay on the prednisone too long. I was on for a year and am now considered “addicted” the weaning process is long and slow. But I am down to 3 MG from 40MG. It has been a nightmare. I have the start of cataracts in both eyes, start of osteoprersis, gained a lot of weight, prednisone was great at first but the long term effects are terrible. I turned to the SCD Diet and am hoping that is the answer. Good luck!

    Cindy

    • Dal
      DalMay 27, 2012 at 11:00 pm #

      Hi Cindy,

      Thanks for the advice, and sorry to hear your experiences. They are keeping me on it 40mgs a day for the time being but I haven;t really noticed the effects yet. I feel a lot better in myself but I still have diarrhoea and I’ve been on it for 10 days! Going back to my GP tomorrow to see what he says. I am not keen on staying on it as I understand that it also screws with ones immune system. On a positive note, I suffer with eczema too, particularly on my face, and that has cleared up completely with the drugs so I feel like a new man in one respect. I look five years younger! Brilliant.
      Dal.

  7. MaggieMay 25, 2012 at 6:37 am #

    Hi, Dal. Lots of good advice! The one thing you have to give up is beer because it has gluten in it. A grain, carb, and sugar free diet seems to be the best. I finally got the book “Breaking the Vicious Cycle” and it’s amazing what these things do to our “intolerant” systems. Diet is definetly the key. I’m headed out for a sigmoidoscopy this morning. I was diagnosed about 10 years ago but had mild colitis since the mid 1980’s when I used to drink a lot of beer. Best of luck to you.

    • Dal
      DalMay 27, 2012 at 11:06 pm #

      Hi Maggie,

      Thanks for the advice. I’ll get that book from Amazon. I have taken your advice and reluctantly decided to give up my favourite drink, which is hard with the good weather we’re having here. I too drank a lot of beer when I was younger, well right up until I had my daughter really. I am going to go gluten free too and am about to look a paleo diet ( I think that’s what it is called) , it’s something to do with what the cavemen had to eat e.g. no bread back then.
      All the best and thanks of the info.
      Dal.

  8. Polly
    PollyMay 25, 2012 at 4:11 pm #

    Hi Dal,

    So sorry to hear about your current troubles.
    I am just getting over my first flare (knock on wood!!!)…
    UC is different for everyone, but my body completely rejected all dairy when I was flaring…
    For the first 3 weeks (after trying to eat mashed potatoes and yogurt), my Doc recommended that I try sweet potatoes (very nutritious, low on the glycemic index, and gently on the digestive tract). For 3 weeks, I ate nothing but organic, (white) sweet potatoes. I peeled them, chopped them up, boiled them in a pot with some organic olive oil, drained the water, and mashed them. It was the only thing I could eat. So I ate the sweet potatoes for 3 weeks straight. For the next 3 weeks, I ate mashed sweet potatoes, sauteed organic spinach cooked in organic coconut oil, and almond butter by the spoonful.
    I see lots of other great advice listed above… I agree with the folks that are recommending the gluten free diet… cuts down on the inflammation!!! I am currently on what I call a “baby food” diet… so that my colon has a chance to heal… I am eating NOTHING with sugar (or natrual fructose), so no fruit (other than the occasional banana), no raw veggies… I am pretty much eating sauteed or pureed vegetables, and soup.
    Also, I’ve been drinking organic Rooibus tea…

    As far as supplements, talk to your Doc about (lots and lots of) Vitamin D… works miracles!!! Probiotics are a MUST as well. Garden of Life has some great products. I take Primal Defense.
    Fish oil would be another great supplement to add… and also coconut water. I also take a giant tumeric pill everyday too…

    Hang in there, the first part of the flare up is the WORST!!! It will get better!
    Let me know if you had any questions.
    Take care, hugs!

    • Dal
      DalMay 27, 2012 at 11:17 pm #

      Hi Polly,

      Thanks for your lovely message. This UC thing is much worse than I ever anticipated, especially with all the stories I have read from fellow sufferers. Your diet situation sounds awful but I hope it is working for you. i have decided to change my diet completely, I am going gluten free and I haven’t touched a beer for a month now. I am eating the probiotic yoghurts every day but I need to get down to the health shop and get some other stuff, especially the fish oil tabs. I need to do everything I can to turn this around because I still have diarrhoea despite being predinisilone for 10 days + asacol tabs and sups. Had to cancel the colonoscopy last Friday too so now longer to wait again. Generally I feel much better though so hopefully things are changing for the better!
      Many thanks and all the best to you,
      Dal.

      • Senga TaylorMay 29, 2012 at 2:36 am #

        Dal, this is a fantastic site. There is tons of great information and lots of research out there. You can even find some of the research articles here, or at least a link from here. I found information that has convinced me on giving my daughter VSL#3. if you feel up to it start researching this pro biotic. I also bought Breaking the Viscious Cycle book. It gives you the basis for the Specific Carbohydrate Diet. My daughter has been on it since Christmas. by the way I heard that you can get VSL#3 on the NHS prescription. Don’t know if that helps much? My family have Crohns and UC. This will pass and the more you learn the more hopefully, you will feel in control. Pecan bread is a fantastic site and gives you lots of information about how you should go about the diet.

        My thoughts are with you.

        Senga

        • Dal
          Darren HartJune 7, 2012 at 6:15 am #

          Hi Senga,

          Thanks for your message. I have checked out the pecan bread website and its great. I have modified my diet now and things are improving slowly. I’ve also ordered the book too, so looking forward to reading it.

          kind regards,

          Darren.

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