There Is Hope, So Don’t Give Up

Royal Air Force Ulcerative ColitisIntroduction:

I’m 39 and was diagnosed last year (Nov 11), I’m currently serving in the Royal Air Force as an Aircraft Engineer and was just working up to running a half marathon when ulcerative colitis stuck. I started having frequent trips to the toilet with blood and lots of mucus then the pain in my side started and after 3 weeks I eventually went to the Doctor (I left it late because stupidly I thought it was just diarrhea) . He initially told me to prepare for the worst and told me he thought I had cancer!!!! I was then given lots of blood tests and booked an urgent hospital appointment. I went to the hospital and was given a colonoscopy but had to wait nearly 2 months for that appointment. During the two months wait I still didn’t know what was wrong and thought I had cancer ( not a nice feeling). After my colonoscopy I was told straight away I had Ulcerative Colitis (recto-sigmoid) and was given a prescription there and then.

My Symptoms:

Currently I feel good, not great but good. I have daily pain on the left side of my body low down and only make 2 – 3 trips to the toilet a day ( Most I have had is 30 trips in one day ). This seems to happen once I gain control but slowly the UC creeps back and I’ll be back almost living in the toilet but while it’s not giving me too much trouble I take every day as good and exercise as often as possible and go out visiting places and people.

My Story:

UC initially knocked me for six, I was physically fit and regularly training several times a week then was stuck down with this disease. I felt like the world was against me I kept asking myself why me, what have I done to deserve this but slowly I have learned to cope. In the early stages it’s easy to get depressed and feel isolated, you can’t leave the house without having a plan of exactly where the toilets are and having a spare pair of pants in the car or your jacket pocket. It does get passed this stage and does get better, honestly I didn’t think it would but it does.

Once I responded to treatment things slowly have got better, I’ve a few set backs along the way, my relationship broken down with my girlfriend and we are not longer together and I think this was in apart due to the UC and the change in lifestyle ( or lack of while ill). I also got arthritis as a sub symptom of my UC, it effected my hips, knees and ankles and last for nearly 2 months until the steroids got in under control. Imagine frequent trips to the toilet but not being able to move quickly ( I had a few accidents ).

One thing I have learned during the past year, Doctors are great if you get a good one, luckily I have one who is great and is understanding but some others I’ve seen just don’t seem to care at all, it’s like you have had your diagnosis so why are you back here !!! Also Doctors honestly don’t like sticking fingers up your bum but sometimes they have to and as long as the wear gloves and use lubrication it’s ok.

My family have been really great and always ask how I am and what’s been happening with appointments etc. My work have also been really supportive, I told them all about all my symptoms from the start and treatments etc and in return my management have told me if I don’t feel well enough just to call in sick and don’t attempt to try and make it to work. I’ve only had to do this a few times and glad I could.

I have also found humour a great way of coping with this, the guys I work with often joke about moving my desk into the toilet and have actually put a sign up on the door of the disabled toilet calling it my suite because I use it so often. It helps me to talk about it with people and it helps them understand why you appear perfectly healthy but are ill so give it a try.

Where I’d like to be in 1 year:

I would love to be in a position where I don’t have to take any pills or enemas and can have my normal life back again but I know that’s not going to happen. I think in a year I’ll understand more about this disease because in my first year I have gone from not even knowing what this was to reading several books and asking every question I can think of to my doctor and the various nurses who I have had to see. I have a good knowledge but I know there’s lot more to find out.

Colitis Medications:

Initial medication: 2 x 1mg Asacol Foam Enema, 1 x Colifoam Enema, 40 mg Prednisolone steriods. This seemed to take a long time to get things under control and after 6 weeks I was also given 2 x 800mg Mesalazine Gastro to be taken orally.

After 2 months I was told to reduced the Asacol Foam to once a day and and then slowly reduced the Prednisolone by 5 mg less per week.

Once the steroids were finished I was still on the rest of the medication, then after about a month I got arthritis in my hips, knees and ankle so I was put back on the steroids (10mg) for another month and then I had to reduce by 1 mg per week and this seemed work and the arthritis symptoms subsided. I still get a bit of arthritis but a bit of exercise helps with that.

I was then told to stop the enemas and just take the tablets twice a day. After a few weeks all my symptoms can back and I had to start the enemas again. After a few weeks the symptoms subsided again and again I stopped the enemas. This again last for a few weeks then it came back and that’s where I now am in my treatment I’ve just done 7 weeks of enemas and stopped last week and feel good but still at the back of my mind I know that I’ll be back on the enemas again soon.

Top tips:

Always use plenty lubrication when giving yourself an enema, I can’t stress this enough it’s painful without.

Other things I’ve learned steroids give you spots and lots of them, you put on weight and your face gets very fat (it’s called Round Face) but these all go away after you stop taking them. I also had nearly constant nausea while on the steroids , from the moment I woke up to going to sleeping. My sleep was very disturbed and I woke often in the night sweating heavily and struggled to get back to sleep.

Asacol enemas can stay in your body anywhere between 1 min and several hours, it just depends on how your body is feeling. The longer it stays in the better it is for you but if you can’t hold it in then please don’t. I read in a coping with UC book that up to half an hour after you eat your colon automatically contracts to push out waste so if you do an enema around this time period the body will be automatically be trying to get rid of it.

I also use the “Pillboxie” app on my iPhone to manage my pills and enemas, it free and is exactly what you need to remind you of when things are due etc. It’s totally customizable and has help me enormously and without it I would have struggled to manage my medication.

Hope these little snippets of info help because I discovered these and they have helped me.

written by Kenny

submitted in the colitis venting area

Tags: Colifoam Enema





12 Responses to “There Is Hope, So Don’t Give Up”

  1. shirley NZSeptember 27, 2012 at 1:47 pm #

    Keep well Kenny, but never think I am over it now. I have been good for 9 months but a loose or smelly poo and lower belly pain tell me to take care of my eating habits. There is always a reminder.
    take care
    Shirley

    • Kenny
      KennySeptember 27, 2012 at 3:01 pm #

      Thanks Shirley for the advice, personally I haven’t changed my diet at all since being diagnosed. Here in the UK several studies proved that diet does not effect UC because all the food processing takes place higher up in the bowel such as the small intestine but I know from reading other peoples stories that a change in diet has helped them so it’s something I’m considering but need to read more and plan the diet before I embark on such a big change to my life style.

      • Mr SSeptember 29, 2012 at 7:10 pm #

        I’ve had UC for nearly 5 years now. I’ve done 3 drugs all useless!

        I did find that I was lactose Intolerant so cut down on dairy.
        I did find that I was low on vitamin D. Taking 1000IU. This I believe has helped with cramps. Haven’t had any since taking them.
        I tried the Carb. free Diet. For a month. lost 10Kg. Didn’t help.

        Problems with: Coffee,Most Teas(use Green tea!),Any Dairy,Nuts (use nut spreads instead),Onions,Spices (stay away from hot curry food!,Oil capsules),Fried foods.

        I Use only Herbal Teas (Nettle,Camomile).

        I eat Rice (limit Pasta),Banans,Dates(Organic, no preservatives),Apples (no Skin),Zucchini and Carrot (mashed up),Watermelon,Orange juice. Try to limit Meat,Eggs and prefer chicken and fish.I should limit Bread but it’s always there and be careful of SourDough.

        I have also read that Teflon coated pans are not good for our condition. I changed mine to stainless Steele.

        I have only had small drops of blood once in a while over the 5 years. Even Blood test in Feaces show no trace. By Problem is loose stools and going to the toilet often.

        I will start having Colonoscopies every 2 years.

        Anyway as most people will tell you, you must find what bothers you, because everyone is different!

  2. Beav
    Laura BeaverSeptember 27, 2012 at 6:20 pm #

    Hi Kenny, I strongly believe that diet has a lot to do with it. I’ve completely changed my diet and feel 100x better.
    I’ve eliminated high fructose corn syrup (which is in so many boxed and canned foods), white bread and pasta, and I’ve basically gone gluten free – this is my 10th week.
    It is hard at first but gets easier. I eat a lot of fresh fruit daily and salads.
    I don’t believe everything doctors tell me. They study medicine.

    • Kenny
      KennySeptember 28, 2012 at 1:59 am #

      Thanks I will look at that, I know it will be hard because I love pasta dishes and I’ve only ever tried going Lactose free for a month while I was waiting on my colonoscopy to see if I had become lactose intolerant and I found that hard because all my favorite food contain milk / lactose.

  3. UC Family Boy
    Uc family boySeptember 28, 2012 at 1:03 am #

    Hey Kenny,

    Be careful with these studies as they generally been taken out by the medical world, the very same who say food does not matter. From a matter of experience I was on Prednisone taper program earlier this year when i was first diagnosed and although I slightly changed my unhealthy western diet I still ate rubbish. Now the Prednisone masked the problem – yes I went 1-2 times a day, ok looking stools but blood was on off…
    Short story I came off the Pred 3 months ago, flared again (which meant I couldn’t have my long awaited colonoscopy) and back on Prednisone. Deciding this on off flaring lifestyle isn’t for me. I started researching further a lot of the info around. Basically there is loads of different diets but I chose the SCDiet which I am on (coming up to 3 weeks). I haven’t introduced the magic homemade yogurt yet But amazing Bowel Movements are happening. Even better than the last Prednisone taper which indicates to me its the diet than the drug.
    I am working under the impression the diet is going to cure the problem even though many people have tried it, failed or simply don’t believe the hype. But I have researched into more so why people fail than just actually succeed as pitfuls will come and be discouraging.

    Yes it is hard but this change is difficult because we are asked to do something we do not know or trained to do, hence many failed attempts. I have eaten the same meal for the last 3 weeks with the aim to heal which is more important than introducing the legal foods on scd. It’s a slow progress but done right I genuinely think it works. Invest the time and it will reward

    On the flip side, my sister has chrones and another brother with UC, both reply on Meds and do fine. Diet can cure in my opinion but drugs can maintain. Both viable options.

  4. Allison-3
    AllisonSeptember 30, 2012 at 1:36 pm #

    Kenny-
    Don’t even think of it as a diet but rather an exciting culinary adventure!!
    I eat way more delicious and exciting and nourishing food than I ever imagined possible.
    I love researching new recipes and lovingly cooking for myself and loved ones.
    Food is my only medicine and it’s tasty and fun and healing my guts, too.
    Tinkyada rice pasta totally hits the spot if not over or undercooked (quinoa pasta is good too).
    Udi’s makes delicious gluten free breads.
    I cut out gluten, alcohol, coffee, peanuts, milk (I still eat aged cheeses and yogurt), vegetable oils are inflammatory so use coconut oil, olive oil or tasty butter (yum), eat lots of fruits and veggies! I still treat myself to dark organic chocolate.
    Best of luck and have a lot of fun with food. Sometimes my meals are the best part of my day when I am feeling crappy.
    Allison

  5. julieNovember 9, 2012 at 12:57 pm #

    Dear Kenny,
    So nice to see someone on here from the UK i too am a British uc sufferer, and we do seem to get diffference of opinion here regards our diet, my consultant told me to eat what i want and not be more miserable by thinking about diet. I have lived or existed for ten years with this horrible lonely illness. I too am without a partner mine left after 21 years of good marriage, at least I thought we were, clearly not. You really need to take a good probiotic cos our gut bacteria is out of sync i am also looking into prebiotic too. It’s hard to digest all the diff info we read or get told. Be your own advocate proces of ilimination. Some foods I believe do upset us but only when in a flare up when we are inflamed. But who am I to say really not enough is known about it. Best of luck to you x

  6. MatthewDecember 3, 2012 at 1:15 pm #

    Hi Kenny,
    I have recently bein told i have Colitis.
    I was wondering how the RAF were with you once they found out you had it. I have been in the RAF reserves for 18 months now and a bit worried if i tell them they will kick me out. Apart from having to watch what i eat, i pretty much doing everything else my sqn does, you wouldnt know i suffered unless i told people.
    thanks

  7. RJWFebruary 15, 2013 at 11:20 am #

    Kenny,
    Have you tried a fecal transplant enema?
    Thanks

  8. AndrewJuly 18, 2013 at 1:23 am #

    Kenny – let me first say that that was an incredibly selfless article for you to write and then publish. And hello from Sydney Australia. Google the Centre for Digestive Diseases. The clinic is located in Five Dock – a suburb of Sydney. Get yourself over here for treatment. I have lived with this for over 10 years and have just been cured in 2 weeks. You owe it to yourself to do whatever you have to get here and get treatment.

  9. Dermot BJune 22, 2014 at 1:10 pm #

    Hi Kenny

    just a question I also have UC and I am applying for RAF as gunner in the reserves , I thought that that it was an immediate release from the armed forces once you have UC. would love some feedback on this as Its my biggest worry applying. I am also training for the PGSC it already a damm hard combat course and skirmish for the few days without UC but with UC I am wondering how I will cope.

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