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31 Years with UC and Finally My Head Is Out of the Sand!

ElaineJfshIntro:

Hi – I was diagnosed with UC in 1984 (I was 26). I’ve been on sulphasalazine since then, started taking Pentasa suppositories after a small flare up last year. I have a colonoscopy roughly once a year. Talked about diet with the NHS consultants but haven’t actually done anything about that (yet).

Some more about Elaine:

I live in the UK, in Surrey near the Hampshire border (was born in Hampshire – I haven’t traveled far!). I’m an accounts clerk by day (35 hours a week) and write books and run various websites in my spare time.

Symptoms:

I’ve just had a medium flare up (the usual – diarrhea, blood, etc) and was off work 3 days. I water-fasted for about a day which seems to have helped.

Elaine’s Story:

My story is that I was diagnosed with Ulcerative Colitis in 1984. I was prescribed sulphasalazine which seemed to pretty much control the flare ups, although I accepted more bathroom trips than anyone else and the occasional ‘mad dash’ to be part of the condition… I’m now married with a son, but in 1991 we lost our first baby due to spina bifida. I later learned (through my own research, not from the Doctors!) that it was probably as a result of not knowing that sulphasalazine can inhibit absorption of certain essential minerals. After we lost our daughter, we saw a private consultant who recommended a course of vitamins and minerals, and I’m happy to report that our son was born healthy three years later! I was prescribed Folic Acid by my previous GP some years later, which I take every day.

I haven’t really ever tried to follow a UC-healthy diet, mainly because I could cope with the symptoms I did have and have been mostly fortunate not to have too many flare ups.

My family are used to my ‘bathroom woes’ (like we can never leave early on a journey because mornings are the worse, even if I’m not in a full, bloody flare-up). This year when we decided (for financial reasons) not to go away I was so-ooo relieved! (Although my hubby wasn’t!) Mainly, I tend not to talk about my UC much to anyone as a rule, so my family probably don’t know the half of it!

The progress of my disease is somewhat similar to Adam’s except that I was (thankfully!) never quite as sick as he got. Sulphasalazine has seemed to control the symptoms pretty much, in that mostly I have not had too many flare-ups with blood and bad diarrhoea. Over the years, I have accustomed myself to having to go more often than anyone else does, not to mention the occasional ‘can’t wait’ episode (and the odd humiliating stop at the roadside – every lay-by should have a Porta-Loo in my opinion!) – isn’t it amazing how much we come to think of as ‘normal’ when we have UC??

But lately this has started to change, and I do wonder if 31 years down the line, maybe the medication isn’t working so well, or perhaps other changes in my body (the menopause, for instance!) have caused more flare-ups…. Almost certainly, I need to start taking more care with what I eat than I ever have before. I do find my job quite stressful at times and I know this hasn’t helped. As I said, I’ve very much favoured the head-in-the-sand approach, but what’s the expression – ‘wake up and smell the coffee!’??

Well I think I’m waking up…

I don’t tend to trust the health professionals here in the UK too much because it seems to me that all they want to do is give you different medications. The hospital did ask me last year if I wanted to see someone about diet, and I agreed. But when the food diary form came I chickened out –they wanted seven days of what I ate and what symptoms I had – would that be enough? I wasn’t sure. They talked about a ‘food exclusion’ diet – cutting out all dairy (I’m not lactose intolerant), then all wheat/gluten (apparently I’m not coeliac either). I didn’t feel confident that they knew what they were talking about (not that I do either, so…) Also, I had visions of spending ages looking at labels in the supermarket (and a food shopping trip almost always involves at least one trip to the loo – if it doesn’t I feel like I’ve won a gold medal!) Finally, I think now I am at the point where I do want to make a diet change, not only for my UC but because I am overweight and I don’t have the energy I know I should have. It is very frustrating because I have so many things I want to do… but how can I contemplate giving a talk about my book when its published, if I’m worried I might have to dash off in the middle of it?!
Sorry if I have rambled on for too long…

Medications / Supplements / And Other Treatments Elaine is Using/Used:

At the moment I’m on:

Sulphasalzine 500mg x 3, three times a day with food – started off in 1984 with 2x500mg and got upped a few years ago after a flare-up

Folic acid 5mg x 1 daily

Clipper steroid – think it might have been 5mg, for a month – my GP gave me this the summer before last when i had a flare up. I often seem to get one in the summer, and again at Xmas – but no surprise with the latter, all that rich food…nuts…) but it didn’t work at all – it was after that I started on the Pentasa… which was given in addition the sulphasalazine and the folic acid.

Pentasa 1g suppositories x 1 at night – has seemed to help somewhat…. but if i take them without a break, i get terrible itching and a rash, mostly over my lower trunk but also on my legs and scalp and behind my ears. It took me longer than it should have to realise this could be related to the drugs! So I tend to take them on alternate days, or maybe two/three in a row then miss one, and mostly that works, but I still get the rash and sometimes awful itching. I think my most recent flare up happened because I had a couple of very bad nights of itching and stopped taking Pentasa for a whole week. The rash/itching went, but the results on my tum were not good! Took it again once after the flare up, didn’t seem to help so I haven’t taken any more but did an almost one whole day water-fast, and have resumed solid food with things that are recommended (in small quantities) – white break, avocado, banana. I’ve gone ‘cold turkey’ on tea (never drink coffee!) and am drinking either pure still water (from a bottle, not the tap) and today had freshly squeezed lemon juice in hot water – so far, so good! Plan to have chicken and potatoes without skin tonight.

I also get night sweats, but I think they are more likely related to the menopause…(?)

I’m now considering juice-fasting, or at least the possibility of introducing juicing alongside other foods to help me lose weight and stay UC healthy. I have more research to do before I leap into anything, because I am worried I might make things worse again by choosing the wrong foods… would be very interested to know if other UC patients have tried juicing, and if it helped you! Oh, and I’ve also bought Adam’s book package…

written by Elaine J

submitted in the colitis venting area




Surrey, United Kingdom

20 Responses to 31 Years with UC and Finally My Head Is Out of the Sand!

  1. Graham from England
    Graham August 26, 2015 at 12:13 pm #

    Hi Elaine,

    Your story is unique but as always here, with familiar troubles. I certainly know what you have experienced with the NHS, they dont have time to treat us thoroughly. It would be wrong to say they are lazy by giving us the quick fix of medications but it does frustrate when this is also sold as the only solution.

    Like you I have had problems with 5 Asa drugs, I only used them for a very short time but they caused nerve damage. A vitamin B12 supplement has helped symptoms a great deal though this was not suggested by any health professional. All I see is a poor service of almost no help and the only real help being that which you eventually provide yourself (research).

    Many of us here should be able to admit that we’ve had the odd stumble backwards when trying to go forwards but this is all progress. Fortunately many things we can try here are natural and far less dangerous than medication. What works great for some just doesn’t work for others but hey ho.

    I have tried many things now and learned a good deal, if I could do it again I would probably go slower in fighting it. This adds to our stress no doubt and doesn’t help so one thing at a time, assess it then move on to something else.

    Like you I couldn’t stick to a diet sheet and read every label so I just introduced some diet principles. Where I have the choice (I would never not eat) I avoid or limit processed food, refined carbs, trans fat/omega 6/vegetable fats, additives and all sugar/sweetener unless natural in fruit or ie honey. More of a Mediterranean diet. This isn’t hard to do, eating healthily or more naturally must be better for our health and recovery, even if it is not entirely UC specific. Our bodies need fat, particularly for energy if we are reducing refined carbs and as everyone here knows I am mad about extra virgin olive oil. EVOO was my big UC breakthrough and also solved 2 other apparently unrelated problems I had. Fat is good, its the wrong type of fat that is bad.

    http://www.ihaveuc.com/evoo-2/

    Below is a recent article about creeping fat, usually more associated with Crohns but now UC and worth a look.

    http://www.gastro.org/press_releases/2015/8/5/the-role-of-intra-abdominal-fat-in-ibd-uncovered

    • Elaine J
      Elaine J August 30, 2015 at 3:23 am #

      Thanks Graham,

      Must admit I’d never heard of creeping fat, sounds horrendous! My husband swears by Olive Oil, I’m not too keen on the taste but maybe I should give it another go. I recently bought some Flax Oil, am going to try that as an alternative to ordinary vegetable oil.

      I have just got myself a juicer, and will try that too – I do need to lose some weight but am very conscious of needing to keep up adequate nutrition because of the UC. It will be trial and error and being meticulous about keeping the food diary – which I’ve previously found hard to maintain (I get bored!) but it is important so I am trying hard to keep it up.

      I will look at B12 supplements – although I take 5mg of folic acid every day, so not sure if that would cover it.

      Interestingly, I have noticed an increase in the itching/rash since dropping the Pentasa supps (which I thought were mainly responsible for it) and adding one 500mg tab to my three-times daily dose of sulphasalzine – I’m now thinking it is the ‘zine’ element of both drugs which is causing the rash, and will discuss this with the consultant when my appointment comes through. I’m putting together a folder of useful articles about diet and drugs and will take that with me when I go – who knows what dialogue it might open up with the consultant! The GP told me to try anti-histamines to help with the itching/rash – but I am wary of adding more drugs to the mix!

      Upwards and onwards….

      • Julia September 23, 2015 at 7:42 am #

        Hi Elaine,

        This may not relate to you, but the comment about your itching made me concerned.

        I had been taking sulfasalazine and mesalamine enemas for a couple of years.
        I developed itching, especially my legs. I was taking Benadryl for that. Plus I had gained some weight from edema, and tended to urinate more at night. And I had chronic pain in my large joints and back. There were other symptoms as well. I had extensive medical testing done by my gastroenterologist. internist, and an endocrinologist. They all said everything was fine. Even suggesting increasing the sulfasalazine. I refused to give up, and finally figured it out myself. The sulfasalazine/mesalamine was putting me in renal failure!
        I made an appointment with a nephrologist, had a renal ultrasound that confirmed kidney damage, and stopped my meds. My kidney function is improving and the itching, edema, and bone pain are gone. I’m on a round of prednisone until the rest of the kidney workup is done.
        Love, Julia

        • Elaine J
          Elaine J September 24, 2015 at 2:31 pm #

          Hi Julia,

          thanks for responding! I have regular blood tests (every six months) at my GP practice so they can check my kidney function. I must admit I didn’t associate the rash with possible renal problems… and the one time I did mention the rash ot my GP and suggested the sulphasalazine might be responsible – her response? “Oh, I shouldn’t think so…” which didn’t exactly fill me with confidence!! I am very surprised that your consultant does not have you on regular kidney checks.

          Since dropping the Pentasa supps, I get much less itching. It hasn’t gone entirely, which kind of suggests to me that whatever causes it is present in both drugs but that maybe it was the volume… more research to be done, i suspect. :-)

  2. Ann August 31, 2015 at 11:26 am #

    Hi Elaine, I have not posted in a while but I could relate to your story and I see Graham has commented as well. I have tried Graham’s evoo, Bev’s probiotics and Adam’s SCD. The SCD seems to have the best results for me. I stopped taking the Asacol HD 7/27/15 and started taking all natural slippery elm powder 1 teaspoon, 3x’s per day before meals and inserting homemade slippery elm suppositories at night. Using slippery elm, along with the SCD, multi/omega/probiotic-2 per day/doTerra since end of July 2015 and this is the best I have felt since May this year. I am attributing the slippery elm to helping clear up the blood in my stool especially the homemade suppositories. I hope you find something that will help you. Good Luck! Ann

    • Elaine J
      Elaine J August 31, 2015 at 1:02 pm #

      Hi Ann,
      thank you so much for the tips – always good to hear what has worked for others! I’m pleased to say that my flare-up seems to have calmed down – whether because I followed the GP’s advice and upped my sulphasalazine dose, or because I am really paying attention to what I eat, taking Actimel, drinking less tea and more peppermint tea/lemon water and replacing some meals with nutritious juices, I don’t know. Possibly it’s a combination! Of all of it, I suspect the Actimel may be the prime ingredient – I’m kind of reluctant to stop taking it to find out, in case I flare up again! I’ve never tried slippery elm but will certainly look into it! I read somewhere that Pentasa will not calm a flare-up, and that was certainly true for me. I suspected it might even have made it worse, but it was hard to tell.

      My goal is eventually to be drug free, but I feel that I will need more experimentation with diet before I am ready to start reducing the sulphasalazine – I am going to talk to my consultant about it at my next appointment. I was interested to discover that whilst stopping the Pentasa altogether has mostly calmed the savage itching I was getting at night, I still do have some, and the rash continues… so whether this is my body telling me that it has ‘had it up to here’ with the sulphasalazine, or if something else is going on, is anyone’s guess at the moment!

  3. Ann September 1, 2015 at 9:01 am #

    Hi Elaine, good luck with the meds but if you ever want to try the all natural mesalamine, slippery elm is the best, at least for me. I think there is something in our bodies that prevents us from producing the healthy mucous in the walls of our intestines and the key lies somewhere in there but nobody can seem to figure it out…we’ll keep trying! I told my doc once that I was “trying” and he said I have not control of the disease…that’s a bunch of bs as far as I am concerned because if there was nothing I could do, the slippery elm would not be working at all…docs can be very frustrating even though I know they are trying to do there job…they think there job is prescribing medication to “cure” everything and don’t have much care for anything else. cha ching! Thanks for letting me vent…thank God for this website! Cheers! Ann

  4. Elaine J
    Elaine J September 18, 2015 at 2:41 pm #

    Hi Ann,

    my apologies for late response, I have only just noticed your reply. Thank you for the recommendation! How did you go about introducing the Slippery Elm? For instance, did you make the change gradually, reducing your meds and increasing the SE, or what? And was it difficult to work out what dosage of SE to use? I am very interested in trying it, but am nervous about stopping the sulphasalazine in case it triggers a flare up – how did you cope with that, was it a problem? What meds were you on?

    Yes, I know exactly what you mean about the Doctors – their focus always seems to be on controlling the symptoms with medication rather than finding more natural ways to bring about remission of symptoms through diet or natural remedies. That’s why websites/forums like this are so invaluable – for years I thought I had no choice but to take the drugs and put up with the side effects. It is so very heartening to know that there ARE alternatives and that they DO work for some people.

    Thanks again for replying, and please feel free to rant away!! It’s great to be able to do so among people who understand, isn’t it?

    best wishes, Elaine

    • Wendy September 18, 2015 at 11:08 pm #

      Hi Elaine
      I’m on the Hampshire/Sussex border and have a different experience with NHS.
      Is it possible to exchange contact details?
      Good luck with your regime, hope it works well for you.

      • Elaine J
        ElaineJ September 19, 2015 at 11:38 am #

        Hi Wendy, of course – you can email me on elainejjackson4@gmail.com– I look forward to hearing from you!

    • Ann September 23, 2015 at 5:39 am #

      Good Morning Elaine, Sorry for my late reply to your late reply…I am still having tremendous luck with the slippery elm. I am taking 1-2 teaspoons of it mixed with juice or water before every meal. Since my last post, I have also come across some tea that is composed of slippery elm, marshmallow root and licorice. It is called “Throat Coat, made by Traditional Medicinals. Once I started drinking this everyday along with the slippery elm powder before meals, the results are even better. The inflammation I was having is almost gone (I have to search for blood in my poo) and my level of energy has gone up tremendously! It is recommended to take any supplements 2 hours before or after since it coats the lining of your GI tract and may inhibit absorbing. It is also not recommended for women who are pregnant but the research facts are not solid on this. I don’t have to worry about this and I don’t think you do either but in case someone younger is reading this I thought it would be good to mention. Let me know how you are progressing. Take Care, Ann

      • Elaine J
        Elaine J September 24, 2015 at 1:56 pm #

        Hi Ann,
        thanks for coming back to me :-) . I’m a little confused about your statement “It is recommended to take any supplements 2 hours before or after since it coats the lining of your GI tract and may inhibit absorbing.” So you mean “it is NOT recommended”? Because I would have assumed that inhibiting absorption would the LAST thing we’d want, given that we need all the nutrients we can get! When my first baby was diagnosed after a 12 week scan (then the first) with spina bifida, the consultant at Kings College Hospital said it might very well to be with ‘malabsorption’, but he didn’t explain further and we were in too much shock and grief to really take it all in or ask pertinent questions. I suppose I assumed it was to do with my UC rather than the drugs I was taking (and perhaps it was). Before embarking on a second pregnancy, we visited a private specialist who put me on a long course of vitamin and mineral supplements.

        If the idea of the Slippery Elm coating the GI lining is to stop foodstuffs irritating the the gut, but if that very coating then inhibits how we absorb nutrients, it would appear to be a double-edged sword….? Interesting!

  5. Rhonda Dearlove September 18, 2015 at 11:46 pm #

    Hi Elaine,

    Well that’s a story to be told. I have had UC for around 27 years and after years and what felt like being fobbed off by the NHS various combinations of various drugs numerous courses of the dreaded steroids, suppositories and colonoscopys I joined this group.
    I am currently taking 4 sachets of pentasa a day, the max dose you can take. On its own pentasa never seemed to work and I was seriously fed up. I can relate to the numerous bathroom visits and the inner horror felt if my husband suggested leaving early in the morning to go somewhere.

    We have also recently moved from fareham, in Hampshire to Gillingham in Dorset so I had moved from my familiar team of “experts” in QA hospital Portsmouth to an unfamiliar team in Salisbury, a scary scenario .
    But I then found this web site and joined, the best thing ever since I was diagnosed with UC.

    So, after much reading and thought I began my quest to stop my cycle of flare ups.
    I am a vegetarian, have been for a couple of years. I cut out most dairy, especially milk. I have vegan spreads and yoghurts, which are very easy to find in your local supermarket. I steer away from rich foods and highly spiced too.
    My biggest saviour is taking my supplements, as researched on this site by other people’s stories. Probiotics, L-glutamine, Aloa Vera and I have also started with coconut oil too.
    The probiotics did aggravate my symptoms to start with but I reduced my dose then gradually built them up and over the course of just a month and for the first time in years I can now poo normally!! I cannot believe how different my digestive system is and I now don’t even think about where the nearest loo may be when I go out, and I can venture out early too without even worrying.
    I know that every one is different but I do recommend that you give this a go, I was very sceptical at first but I was determined to try any thing.
    I did a bit of research on the probiotic thing and was quite intrigued by what I read.
    I was also a little annoyed by my consultant when I told him I was trying probiotics when he said yes there is some research into the benefits of probiotics! Why wasn’t I told!!

    I buy all my supplements from a well known health store and the probiotics are in tablet form not the ones you find in the supermarket on the yoghurt aisle.

    Anyway, I hope this goes someway to helping you if only to eliminate my advise.

    Happy loo breaks

    Rhonda

  6. Hristina September 19, 2015 at 12:14 pm #

    Hi Rhonda.

    What a probiotic drink?

    • Elaine J
      Elaine J September 24, 2015 at 1:59 pm #

      Hi Hristina,

      Probiotic drinks are like ‘Actimel’ or ‘Yakkult’ beleive – they contain various bacteria that the gut needs in order to remain balanced. I find ‘Actimel’ very helpful, and it tastes nice too – have one every morning with my breakfast! I hope that helps.

  7. shelly in maine September 19, 2015 at 3:46 pm #

    Hi Elaine…I am another UC lifer…diagnosed by the time I was 15 with symptoms forever and am now 47! Adam is all about SCD as many us have resigned to. The supplements and natural stuff can be tricky and like Graham said that often UC becomes very individual on what works and what doesn’t and how much. I have been through all meds and am allergic/intolerant so i also use SCD and quality probiotics(Rx strength VSL #3). I will say keeping a journal and documenting foods, reactions, bm’s, etc will help you. Also, I did not go SCD in one big leap, but made changes and followed the pecanbread.com stages website when my symptoms got so bad and I was forced to go full SCD! It gets easier after time. Look at reading Breaking the Vicious Cycle Elaine Gottschall along with Adam’s books. You do have to be a lot of OCD and a scientist to figure this all out, but you are your own built in guinea pig! :-)
    I recently tried a new product from my chiro…DesBio Intestinal Restore and IT worked!! I was in a pretty bad flare 15-20 trips and bleeding tons and voila! I wrote a story recently… http://www.ihaveuc.com/remission-potion-lets-hope-fingers-crossed/…hope this helps!
    Best of health,
    Shelly

  8. Elaine J
    Elaine J September 24, 2015 at 2:06 pm #

    Thanks Shelly – that is very interesting! I’ve looked on the internet and I’m not sure that product is available here in the UK, but I will investigate further. It seems to be recognised for ‘leaky gut’, which sounds horrific – I wonder how you would know if you are suffering from that?

    Off to read your story now…

    • shelly in maine September 25, 2015 at 2:55 pm #

      Hi Elaine…hope you are doing alright. The product…the intestinal restore is a combo of ingredients such as lglutamino and other amino acids which help rebuild/restore the intestinal lining. Thee ae many who basically say that leaky gut is what we cripohn’s and ucer’s suffer. Anyway, you have to just make your whole self healthy inside and out!
      Happy reading! Shelly

  9. Elaine J
    Elaine J September 26, 2015 at 4:16 pm #

    Hi Shelly,
    thanks for that – I’ve been doing a little more research into equivalent preparations here in the UK and came across this, an article about restoring the intestinal flora following a colonoscopy – thought I would post the link because I have seen many people on many sites talking about the after-effects of a scope. So here it is: http://www.ehow.co.uk/how_5672443_restore-intestinal-flora-after-colonoscopy.html I guess it’s possible (make that probable!) that this has already been covered on this site (haven’t read everything here yet, there’s a lot of information!) Also looked up lglutamino and found this: http://www.webmd.com/vitamins-supplements/ingredientmono-878-glutamine.aspx?activeingredientid=878&activeingredientname=glutamine. What kind of dosages do you use?

    I have to say, this site is brilliant – I’ve learned SO much since finding it – thanks, Adam, and everyone who posts here!

    I’m doing okay at the moment, thanks – had a bit of a ‘wobble’ on Tuesday last week after ‘treating’ myself to a Micky D on Saturday – at least I’m assuming it was that, since Sunday was Roast Pork (and I kept clear of the sprouts!). At the moment fish, mashed potato and chicken, and LOTS of fruit plus a probiotic drink every morning seem to be working moderately well. Still have a way to go to identify all my triggers, but am slowly starting to twig which foods cause bloating and worse. Haven’t started the SCD yet.

    I wonder if ‘leaky gut’ is what causes my rash (which is more predominant on the left lower side of my torso – I have left-sided UC, so imagine that isn’t a co-incidence!) – not getting nearly as bad itching at night since dropping the Pentasa supps, but still have a little, and the rash hasn’t gone… so rather mystified!

  10. shelly in maine September 27, 2015 at 12:56 pm #

    Hi Elaine…sorry about the typos…my tablet gets a wee bit testy and only corrects my slang and names! The lglutamine dosing is on the container. I couldn’t seem to get it right and that’s when I went back to my chiro and he gave me the intestinal restore. Spacing lglutamine and the probiotics away from food is helpful. If you can get some info from a health food store or online…work with that. Keep chipping away at diet…you won’t regret it. It will help you with all your goals.
    Best, Shelly

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