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Very Scared of What Lays Ahead

Recent shot of Tony, enjoy his story, and offer him some ideas, he dropped 2 stones UC’ers

I’m a 60 year old male from the United Kingdom, 6 weeks into being diagnosed with UC and pneumonia. Fumbling around trying to find out what I can and can’t eat.

Some more about Tony:

2017 in January approx. 16-17 I began to lose weight at an alarming rate through having diarrhea which lasted about two months.

In that time I lost four stone in weight ( 1 stone = 14 pounds), I always weighed about 16 stone (224 lbs.) but now found myself weighing in at just over 12 stone, after a couple of visits to the hospital and many tests I was diagnosed with Ulcerative Colitis and pneumonia, feeling as weak as a kitten I gradually and because of the help of a good friend got my weight back up to 14 stone.

I’ve read quite a bit of the letters that people have sent into this site and am beginning to work things out but I really do need help with finding a good diet! actually knowing what a flare up is?

I have some idea of what foods I can and can’t eat but I feel I’m a million miles away from actually knowing whats what, please excuse my greenhorn attitude but I’m still a bit scared as to what to do, any help you can give at all would be gratefully received.

Symptoms Currently:

Apart from now I find myself going to the loo normally, well I say normally my stools are solid but I sometimes can go 5-6 times a day but at least the diarrhea has gone.

Because of the pneumonia I get tired very quickly so haven’t much energy.

Tony’s Story:

Any information you can give me regarding UC will ease the burden on my friend and myself, I’ve only been out of hospital for a few weeks and although I have seen my doctor he seemed reluctant to give me any medication.

I’m also waiting for results from the biopsies taken, feeling a bit lost and all up in the air.

This is a new era for both of us and didn’t realise that this was waiting in the background to kick us in the teeth.

Everything has changed! even holidays have to be looked at differently.

I surpose I’m most concerned about having a diarrhea moments away from the house, how to cope with that, really have to think about taking a bag with all your going to need in that situation.

Never been a great vegetable guy in the past and now I find out that salads are of the list which I love and veggies are good for you but I can get over that, really its a case of having too.
The only medicines I’ve had in the period are anti-biotics that really gave me thrush in my mouth, never has my tongue been so sore, Predi for a short period that did give me the energy to get on with things, and the tablets I take daily for my ailments.

So as you can see I’m in need of so much information about this thing that is living with me at the moment and how to treat it so it treats me as fair as possible.

There’s not much more I can say about it except its an unwanted guest in my home.

Only 60 years old but I have the fight in me to give this UC a good run for its money.

Thanks everyone,,,,,Tony

Medications – Treatments

I have started keeping a daily diary of what I’m eating and drinking and have noticed some things will have to be dumped, such as curries and Chinese food,,, my two favourites.

written by Tony A

submitted in the colitis venting area




16 Responses to Very Scared of What Lays Ahead

  1. Lisa Baker June 4, 2017 at 7:54 am #

    Hi Tony. I’m a 50 year old woman, diagnosed with UC two years ago. I, too, lost an alarming amount of weight. At 5’4, I dropped to 110 pounds. I began a trial and error period with several drugs, and finally landed on Imuran. I take only half of the dose prescribed now. I also changed my diet. I eat a paleo/ SCD diet. I find that diet has helped me tremendously. In fact, I’d like to wean myself off of Imuran soon. If you’ve read up on the SCD diet, you’ll find that it has helped many of us UCers. (Google Breaking the Vicious Cycle by Elaine Gottschall. There’s also a very helpful UK group on Facebook that will be a wealth of knowledge regarding SCD. Search Facebook for U.K. SCD Breaking the Vicious Cycle. I hope you find something that works for you. After two years of following the diet, I feel almost quite normal. In fact, I need to lose a few pounds now.

    Best wishes,

    Lisa

    • Adam
      Adam June 4, 2017 at 8:21 am #

      Hi Tony,

      A big thank you again for sharing your story with all of us on the site, and I hope you will find some long term relief in the very near future.

      I would for sure take up some of the ideas from Lisa, the SCD diet has been huge for many people here who want to try diet as a means of getting he inflammation under control or even controlled completely.

      As you will realize if you haven’t already, there are some things that are more common than others for the international group of peole like us with UC…but there are also many unique parts of this disease that may be very different for each of us in certain respects.

      Either way, you, like the rest of us will find a way to keep the symptoms under control, there are a growing amount of ways to do that, and you will find one that works best for you.

      As for food ideas, here is a link to a video I created with some foods I ate to get out of a flare a few years back, and as well, it is very much based on the SCD diet type of thinking for IBD:

      http://www.ihaveuc.com/the-colitis-flare-beat-down-party-getting-out-of-my-flare/

      Best to you Tony:),

      Adam

  2. Andrea June 4, 2017 at 8:00 am #

    Wow, Tony, sorry to hear your story, and can really relate to the growing dismay at the changes to lifestyle, energy levels, rage at UC stealing my life and freedom. For me I am now well, and drug-free after a sordid 18 months, but it was trial and error re: diet. In the end, in desperation and having googled ‘Healing from Ulcerative Colitis’, if found a young woman who had cured her UC symptoms with what she called ‘the Daniel Fast’. Just vegetables (and that included legumes), nuts, seeds and water, for 3 weeks. No meat, dairy, eggs, sugar, caffeine or alcohol for 21 days. It worked for me too, but it was a drastic diet that I wouldn’t have tried unless I’d tried everything else. It may be different for you, but if you’re like me you’re working your way through a number of things that might help. I also took probiotics, pre-biotics, multivitamins, turmeric etc for a while. And I did juicing (spinach and apple, carrot and apple) just to increase nutrient intake with minimal digestive stress. Otherwise, try to rest as much as possible, to give your body every chance to reset and rest. Sending best wishes, and encouragement :) xxx

  3. Tony A
    Tony Angel June 4, 2017 at 11:51 am #

    I would just like to thank all you wonderful people for your kind words and encouragement, at the moment all is good and I am determined not to let UC rule my life

  4. Allison June 5, 2017 at 12:21 am #

    Hi Tony, i’m from the UK too. Had colitis for 11 years now, i’m 46. Tried every drug, on steroids yet again but they aren’t working so the only option i have is the SCD diet, similar to the paleo. If that doesn’t work then its the op. Symptoms for me are losing lots of blood 6 – 15 times a day/night which can go on for 3/4 months at a time, twice a year so yes cancelled plans and uncertainty and all the other pains and fatigue etc that goes with it!
    Forums are a great place to read other peoples experiences, but every body/colitis is different.
    I would say try the Specific Carbohydrate Diet (SCD) like me and lets hope for the best! Its worked for a lot of people and i know if i cut out grains and sugar alone i will see an improvement!
    Wishing you luck

  5. Cathy Miller June 5, 2017 at 7:39 am #

    Tony…I have written a small book about what stopped the bleeding for me personally. Adam has been so kind to allow it on a site he has provided to view it and respond if you like.
    Check the site for “Stop The Bleeding” Cathy’s E book. It may save your life as it did mine. Two wonderful authors are detailed Elaine Gottschall and Sky Curtis.
    I am now free of Colitis thank God.

  6. Allison June 5, 2017 at 9:28 am #

    The reason i am starting the SCD diet is because of Cathy Miller (thanks!).
    I have commented above also. I have had the scd book for years but as my colitis wasn’t so bad then i just thought it was too much. Time to get on with it now as its my last resort, thanks for all the info

  7. Coralie June 6, 2017 at 6:16 pm #

    Hi Tony

    I understand how you are feeling and want to give you some facts so that you will hopefully see that the Specific Carbohydrate is in fact a really easy option. You will be very healthy and you will eat like a king. What I am about to tell you might seem morbid but it is my reality and if I could turn back time and if my doctor in my current district had thrown the initial referral letter in the bin, none of this would have happened. She and I are kicking ourselves.

    I was diagnosed with UC in 2008. I remember telling my doctor that in all likelihood my colon was going to drop dead. I was seeing her every week and was in a pretty bad way. Tried all the drugs over the next 4 years. Some worked for a short time but they come with lots of side effects and you can end up with many more problems like rheumatoid arthritis, continual mouth ulcers, no change in your UC symptoms, etc, etc. In 2013 I decided to try the Specific Carbohydrate Diet. I was at my wits end because they specialist was talking about removing my colon seeing as none of the drugs worked or I was allergic to them. I went into anaphylactic shock after a dose of Infliximab.

    Anyway, I decided to do the SCD to the letter. Within days ALL of my symptoms went away and I was passing normal formed bowel motions once a day. Unbelievable. And they wanted to take out a vital part of my digestive system!

    I went off all medication and was the healthiest I had been in my life. I stayed on the SCD until last year (2016). During this time I had shifted to a different district and was therefore under a different hospital. I received a letter telling me to go for a colonoscopy as I hadn’t had one for 4 years. I had a consultation with an arrogant gastro specialist who insisted that my diet was very very bad and that I would get colorectal cancer if I didn’t take Pentasa. You may know this drug as Mesalazine. After an hour of arguing with him I agreed to take 1 gram of Pentasa a day. Within 24 hours my life changed from great to really bad. My bowel motions were hideous. I had stomach pains and diarheoa. I was depressed. How could this be happening? My own GP was shocked at the change in me.
    Long story short – a colonoscopy in August 2016 showed 5 feet of my colon was ‘unremarkable’. In other words ‘normal’. The last 15 cm had become inflamed. In November another colonoscopy showed the whole colon was a raging mess. They removed it. “We will be able to reverse the operation when you are in better health in a few months time,” they said.
    This was a ridiculous statement to make. The reality is, without your colon you cannot make a formed bowel motion. So if they reverse the operation and join your rectum to the small intestine, you are left with unending loose, watery bowel motions that burn the skin, are not able to be controlled and you have to wear protection and barrier creams at all times. You will probably lose your social life and be house bound.

    I have an ileostomy bag now and I hate it. It has been 6 months since surgery. This was not supposed to be my life. I spent nearly 2 months in hospital after another drug they put me on depleted me of everything that your body needs to survive. I got out on Boxing Day. During my time in hospital they had me eat all the conventional things made with wheat, i.e. bread, gravies, crackers, etc and starch like potatoes, plates full of hot chips, lots of sugary jellies, icecream, puddings. All the things that are a dead no no for UCers on the SCD. Consequently, I asked the hospital if I still have UC now that my colon is gone. They didn’t know.
    Well, I can tell you that I do. A sigmoidoscopy in April showed the last 15cm still remaining (rectum) is mildly inflamed. That means UC. So I am back on the SCD but I can only eat half of what I used to be able to. No raw salads, whole nuts, raw fruit or anything that might cause a blockage in the stoma. I also can’t eat onion or garlic or cruciferous vegetables or the bag explodes. Such fun.

    Imagine my chagrin. As I am a Christian I have asked God to give me a new colon. I believe in his almighty power and I know that the doctors can’t do anything that is going to benefit me. When I get my new colon I will be broadcasting the news to all UCers. I’m not a patient person but all things happen in God’s time, not ours.

    There, you have my story in a nutshell. I recommend the book ‘Breaking the Vicious Cycle’ by Elaine Gottschall. It is available from the book depository online in the UK.

    So, please don’t rely on the drugs. You are lucky because you are in early days of this disease and the diet will change your life. I look forward to seeing further reports from you once you try it. Making the homemade yoghurt is very important. Get yourself a yoghurt maker that will let you ferment the yoghurt for 24 hours as per the instructions in the book.

    Take charge, Tony, and don’t give up any organs unless you are dying.

    Kindest heartfelt regards
    Coralie

  8. Allison June 6, 2017 at 11:29 pm #

    Hi Coralie,
    Sorry to hear your story. Did you have the colonoscopy before you started on the Pentasa? Surely they should have done this before putting you on the drugs to see what your bowel was like… which should have been totally healthy due to the diet.

  9. Tony A
    Tony Angel June 6, 2017 at 11:45 pm #

    Just to have a connection to all of the people on this site is a blessing, the guidance you give is precious, I wish that I could help each and every one of you to get rid of this horrible disease that affects us all, god bless you all.

  10. Coralie June 7, 2017 at 4:00 am #

    Hi Allison, No, and that was probably my mistake for not insisting on a colonoscopy first. I guess no one wants to go through the preparation if they don’t have to. No. I didn’t have a colonoscopy until I had taken the Pentasa on and off for at least 5 months. He scared me, so I kept taking it intermittently. I did alot of research and found out that Pentasa can mimic a colitis flare. I can tell you that I was having more than a colitis flare. As far as I am aware a flare is bleeding and mucus, gas and diarheoa, many times a day. What I was experiencing was quite different. You know what a chinese burn is? It felt like someone was doing that to me but on my colon, not my arm. There was no mucus or gas, but bleeding and diarheoa. First I would get pain in my abdomen causing me to rush to the loo where I would have to massage my tummy until the ‘chinese burn’ or contraction eased, then I would pass either blood or the strangest bowel motion I have seen. Like black jelly in the bottom of the bowl. I apologise for the graphic image. I told the medical team that I was sure it was the Pentasa causing my symptoms. So they gave me a different brand, Asamax. Then when I didn’t improve they gave me Asacol, also the same drug under a different name. The damage was done.

    • Bev June 7, 2017 at 7:48 am #

      This is most heartbreaking, Coralie. I believe that there are far too many people having their colons removed. I also believe that it is not always necessary.

      So interesting that you were talked into taking meds, once again, by a doctor. What a tragedy. That happened to me, as well.

      After going off asacol on my own, because I was having the same reactions as you describe, a GI doc basically told me that even though I was now symptom free, I would likely get colon cancer if I was not on some sort of ‘maintenance’ medication. I was absolutely floored. I was (and am) feeling fantastic, for the first time in 15 years. I was on asacol for that long, to my detriment. I felt horrible, if not worse that just dealing with the UC, the entire time that I was on that drug. I felt like death. I was likely allergic to it, I now believe.

      Imagine doctors feeding us that sort of misinformation. We are feeling perfect, and they try to convince us that we NEED to take medication anyway. Asinine.

      I am completely symptom free these days, just taking a good probiotic and L-glutamine.

      I do have one huge piece of ‘new’ news, however. Since I stopped having milk in my latte every morning, I am even better than I was ‘before UC’. I am beginning to wonder if I did not simply have a milk allergy all those years and that contributed to UC? I now only use lactose free milk. That switch has completely changed my life.

      Thank you for sharing your story. I am so sorry that you had your colon removed. This is a wake up call for all doctors. By the book isn’t always the way to go.

      • Chris June 21, 2017 at 5:05 am #

        Hi Bev,

        I’ve been a long time lurker. Thanks to your brilliant advice, my UC has significantly reduced. I take 1 50 billion ultimate flora probitoic from renewlife in the morning . I also take scoop of fermented glutamine before lunch. My stools are properly formed and I don’t have blood anymore.

        However, I still have urgency that I can’t shake. Is there anything that I can do to resduce the urgency ?

        Thanks for your help!

  11. Allison June 7, 2017 at 9:40 am #

    Its really no use trusting the ‘experts’ is it? Intuition and knowledge is key. It took me a while to realise they don’t know everything and we have to trust ourselves.
    It must be so frustrating for you and having to have an unhealthy diet now is crazy.
    Thanks for sharing your stories, you’ve powered me on again to crack on with the scd, i’ve bought a yoghurt maker (even though yoghurt doesn’t agree much with me) as it is important to get the good bacteria in.
    I wish you all the best Coralie xx

  12. Bev June 7, 2017 at 10:06 am #

    Yes, we are taught to trust the doctor and do whatever they tell us to do.

    We really can rely on ourselves. We know our own bodies.

    Doctors are people, just like we are. They are not perfect, just as we aren’t.

  13. Tom
    Tom June 8, 2017 at 1:21 am #

    Hi Tony

    I’m going to play devils advocate here

    I was diagnosed in 2011 age 23. Hospitalised 2012 for 11 days and ended up taking 25 tablets a day. They just about kept my UC in remission but I couldn’t live with the medication side effects. Long story short in 2013 I opted to have my colon removed and intended to progress to a Jpouch. In the end I realised that I got on fine with my ileostomy and the risk of a Jpouch for me wasn’t worth it. In 2015 I then had the remaining rectal stump and anal canal removed making my ileostomy permanent.

    I’d like to point out that apart from no longer being able to fart (boo!) there is nothing that I can’t do. I exercise, do a lot of heavy gardening at my allotment and the main thing is I eat whatever I want. Sweetcorn, nuts, mushrooms, absolutely everything. Don’t be under the impression that everybody that has an ileostomy has to restrict their diet. I have 2 friends who I met via the hospital and they also now have permanent ostomies. They also are not restricted in any way.

    I cannot comment on the efficacy of the SCD diet but in my opinion, I think it only works in a very small number of minor UC cases. Those that have failed with the SCD diet or have colitis that is too far gone will not be here giving their side of the story. Keep that in mind as it’s easy to read 10, 20 50 accounts of how great the SCD is but it’s the hundreds if not thousands of negative reports that you won’t see that tell the true story.

    The NHS have some very good maintenance medication for UC that you may find work perfectly well for you. It would never be a good idea to think that hundreds or even thousands hours of your own research on the internet is superior to the entire medical profession and their current understanding of UC, so bear that in mind when thinking “one person says this drug is terrible so therefore I won’t take it”

    All the best and keeps us updated

    Tom

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