Hi, my name is Alastair, and I live in a small village called Chipperfield in South East England. I have had UC for 35 years, 25 as ‘total colitis’. I have a colonoscopy every year (was every 6 months) as I am a high ‘cancer risk’ having a severely damaged colon with numerous polyps. I have had over 38 colonoscopies over the years,) probably a record!) so am well acquainted with my insides! Presently I take Asathioprine. My last major flare up was last year after I stopped smoking (yes that ol familiar story). I have now started again. I was originally diagnosed with Crohn’s in 1977, was hospitalized for 3 months. My weight went down to 7 stone, and then they decided I had Ulcerative Colitis. It was early days in research.
Some more about me:
I presently paint pop art pictures, and write music and songs for my entertainment. I live life to the full as much as I can, and try to laugh at adversity using the mind-set of “Bring it on!” My daughter who lives with her mother, was diagnosed with UC several years ago.
Into my 36th year with Ulcerative Colitis. I had a major flare up last year (2012) which was probably caused by having given up smoking a month 2 months before. I now smoke again. My colon is badly damaged due to ulceration scaring and looks a bit like a drain pipe so nothing ‘stays in’ for long. I have yearly colonoscopies because of the polyps in my colon, too numerous to take out. Extensive steroid use (prednisolone) has caused my Type 2 Diabetes and also my Glaucoma, both of which are regularly monitored. As a present ‘line of thought’ is that UC is an auto-immune disease I am taking Asathioprine which suppresses my immune system and thus stops my system try to reject my colon. Because of the state of my colon, I had to give up work in 2008. I have to wait until each morning to see how my ‘insides’ are. Often I cannot leave the house, which is a real drag and ‘cabin fever’ can result! If I had my colon out, I would als o have to have my rectum out, as it is diseased as well. A ‘total ecacuation’ has its own risks which I am not willing to take.
My 35 Year Life with Ulcerative Colitis
I have had UC for 35 years, 25 as ‘total colitis’, which means my rectum is affected as well. I was originally wrongly diagnosed with Crohn’s, spent 3 months in hospital and my weight dropped to 7 stone. I presently have a colonoscopy once a year, though it was every 6 months (probably over kill). I have been hospitalized a few times and ‘transfused’ on several. Although I wasn’t told of the risk, lengthy use of steroids (prednisolone) caused my Type 2 Diabetes and my Glaucoma. It is a brilliant anti inflammatory drug, but has its side effects which aren’t great. Calcium tabs are encouraged to be taken whilst on steroids.
In addition, the use of steroids plays havoc with ‘ones’ blood sugar levels, even if you’re not Diabetic! I take Gliclazide if I am back on steroids, to help bring down my sugar levels. I now have to balance my diet because of my UC, Diabetes and Gout, and that isn’t easy. Now the smoking connection. Its only recently that I was aware of the connection with UC. It appears to be accepted, medically, that smoking is good for UC sufferers, BUT bad for those with Crohn’s disease. This is strange, especially as the national society for Crohn’s and Colitis, NACC, of which I was a member on the board, is a society for both diseases as they are linked. I assumed that it was the Nicotine that had a good affect on Colitis. I now understand that it is the low levels of Carbon Monoxide that are inhaled which are beneficial, due to its low level anti inflammatory benefit. (It seems strange that too much Carbon Monoxide kills you.. my brother committed suicide using this method, whilst a low level has an anti inflammatory effect!) It may well be that the ‘powers to be’ do not inform the public of the possible risk of giving up smoking to those without UC because of the health risk due to smoking. However, if you have UC and stop, be warned, a major flare up is a risk.
My last flare up was in 2012 after I gave up smoking. I have now started again. My UC ‘sits on my shoulder’ every day like an evil parrot, but after all these years ‘he’ is gagged. I can only speak about my own experiences of living with total UC, the steroid causal Diabetes and Glaucoma, but I have been around the proverbial block a few times with the disease. I will answer any questions about UC from my own life experience.
Oh ONE OTHER IMPORTANT THING, in 1988 I came within 2 days of having to have the ‘op’ as I was sooo ill, in hospital running a high fever etc. I was on Enteric (sugar) coated prednisolone. My wife at the time, a nurse, knew that due to the state of my colon, my body wasn’t breaking down the sugar coating of the pills, and they were going straight through me. She insisted I was given non enteric coated steroids and I was. Within 24 hours I had made a huge improvement and the ‘op’ was off. So remember all, your colon will struggle to break down sugar coated steroids if you’re having a bad attack of UC. That knowledge saved my insides.
Although the disease appears to be familial (my daughter has been diagnosed with it, although it skips generations) I am sure the affected or lacking GENE will be identified once current funding is increased. I know research is taking place which is fab’, but UC and Crohns are not ‘trendy’ (not sure if this is the right word to use enough diseases to warrant huge funding. A break through will be made though sooner rather than later. Be patient (excuse the pun) and keep smiling, although it may be through gritted teeth!
Lots of good wishes!
Tried most drugs, but am now on Azathioprine, which needs fairly regular blood testing, which is a good thing! Not on steroids at the moment.
written by Alastair
submitted in the colitis venting area