Daily life with ulcerative colitis
26 Apr 2017 • 1 comment
One of our members opens up about daily life with ulcerative colitis and the different daily difficulties that he encounters. Read his story and share your everyday difficulties with your disease in the comments.
Dealing with ulcerative colitis flare-ups
I have been living with ulcerative colitis for over 12 years and I am also living with Ischaemic heart disease, Asthma, spondylosis of entire spine, hearing loss and Diabetes type 2.
Each day is different for me, as I have many good days when I do not have a flare up, but I also have some medium days, when I am living with stomach cramps and a swollen stomach and constipation. I also get a lot of muscle pain that also affects my bones making them feel tender to touch, this often makes life unbearable, as simply doing things can cause bad pains and discomfort, as well as fatigue and breathlessness.
My medication causes me to have a reduced immunity against many illnesses and ailments. When this happens, I feel wiped out and angry, because I am unable to live, what I class as a normal life for me, this I hasten to point out is not the same as it maybe for a person who has better health then myself.
Everyday difficulties with ulcerative colitis
Each day, because of my ulcerative colitis I am always having to monitor my bowel motions, to ensure that there is not any blood in my motions or the toilet pan, because things can change drastically within a 15 minute period of time.
Because of my body changing in size often a few times a day, I have to buy clothes that are at least 1 size too big for me, to allow for a near comfortable fit as possible. Therefore I have to buy more than one size of clothes mainly trousers and tops or even coats.
I have to carry spare underwear in my car and in a back pack, so that I have a change of clothes, I am also always on the lookout for a toilet and if I am going somewhere new to me, I try to plan a route that has toilets available, especially RADAR toilets as they are usually cleaner than some public toilets.
Basically living with Ulcerative Colitis is hard and unstable at times, because it is not always possible to plan too far ahead, as I have already mentioned that life can change very fast and a flare up can lead to me feeling unwell and also unable to leave my home, for several days until I feel a little better. I then have to rely on good friends to support me and possibly do shopping for me.
Thankfully I can get advice from my consultant or doctor and order steroids over the phone at my doctor’s and have them delivered. I also have a great hospital consultant and gastroenterology nurse and secretary, who always support me and make my life as easy as possible during a flare up.
Living with ulcerative colitis is not an easy thing to do
In my own case I sometimes am in the unfortunate position, where I get bad water infection that causes me lots of stomach pain and discomfort while passing urine. This and ulcerative colitis can leave me trapped in my house and cut off from the outside world, while everyone else carries on normally.
During a bowel flare up, my medication increases by an average of a 3rd, due to having to take steroids and other anti-inflammatories, and possibly antibiotics. From a psychological perspective, I often feel low and am unable to relax and feel dirty during a flare up. It also can affect my friendship, as they have to be understanding, if I have to rush to the toilet, and can be gone for quite a while, as during a bad flare up, I can use the toilet, well over 15 times in a day, as well as having to get up during the night. This leaves me feeling tired and irritable and I get upset and say things, to friends and others that I later regret.
Life on the whole, living with colitis is completely different, as I have no knowledge as to when a flare up will happen, how long or severe the bowel flare up will last and completely change and take over my life and leave me feeling useless and worthless, to the extent that I feel very low and even relaxation or exercise does not often help ease things. For me living with ulcerative colitis is not an easy thing to do, as I can never live a normal life, like other people, who do not have it, can.
My research from medical text books and web sites and medical professionals, tells me that there is no cure for ulcerative Colitis and that the actual cause is unknown and finally, that there is no cure, just the ability to try to keep it in remission and make it manageable.
However, there are many side effects to taking medication for ulcerative colitis, but I do not want to go into them at this point. For me living with it is simply unfortunate and a blight on my life, as it causes me lots of pain, inconvenience and discomfort and mental stresses etc.
Patient support groups
I think that sometimes patient support groups can be of help, especially if the blogs are genuine and some people are not simply seeking the limelight, or wanting to be seen as special cases.
I do not like going to some support groups, for my own reasons, as I am doing my best to keep as positive as I can in my life, and often some people will attend and this can affect me emotionally and make me feel down and sometimes angry, that others are simply interested in their own selfish motives etc.
I have attended self-help groups and occasionally still do, as long as we all have a positive outlook and want to help and support each other for good reasons.
As I am doing my best to not only live as normal a life as I can, but be of help to others whose lives, are worse than mine in many ways. I enjoy being part of a HIV support group as a volunteer and also a Cancer support group, as part of a fundraising team. This I do this gladly in memory of loved ones that Cancer took away from us.