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.
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.
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.
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.
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