Living with ulcerative colitis is not an easy thing to do

Published Apr 26, 2017


Living with ulcerative colitis is not an easy thing to do

image of interviewee

Dealing with 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 my 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 mild days when I am living with stomach cramps, 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, fatigue and breathlessness.

My medication also reduces my immunity, so I am more prone to many illnesses and ailments. When this happens, I feel wiped out and angry because I am unable to live wha is a normal life for me. This "normal life" is not what may be normal for a person who has better health then me.

Everyday difficulties

Every day, because of my ulcerative colitis, I am always having to monitor my bowel movements to ensure that there is not any blood present 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 in pieces of clothes, mainly trousers, tops and 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 ahead. As I have already mentioned that life can change very fast and a flare up can lead me to feeling very sick and ill and  unable to leave my home. It can last 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.

Getting help

Thankfully I can get advice from my consultant or doctor and order medications 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 a 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 with their life normally.

During a bowel flare up, my medication increases by a 3rd on average due to having to take steroids and other anti-inflammatories, and possibly antibiotics. From a psychological perspective, I often feel low, am unable to relax, and feel dirty during a flare up. It also can affect my friendships, as they have to be understanding if I have to rush to the toilet; I 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.

Living with colitis is completely different, as I have no knowledge as to when a flare up will happen, or how long or how severe the bowel flare up will last. It can completely change and take over my life and leave me feeling useless and worthles 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 this condition.

My research from medical text books, medical web sites, and medical professionals has shown me that there is no cure for ulcerative Colitis and that the actual cause is unknown. I hav also learned that what does exist, is just the ability to try to keep it in remission and make the condition as manageable as possible.

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 own life. I find that sometimes, certain people that attend these groups can affect me negatively emotionally, and can make me feel down and angry because they are simply simply interested in their own selfish motives, etc.

However, 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, then I feel these groups and be beneficial.

I am doing my best to not only live as normal of a life as I can, but also to 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. I do this gladly in memory of loved ones that Cancer took away from me.



1 comment

on 1/16/19

Hi Keith and I read your story history from 2015, this is the NewYear 2019 but reading your history, you sound like you deal so  much like I do wth Crohns since age 20 and have had it now 47 yrs.............past 47 yrs, 4 resections and left with 6 ft of small intestines so new problems with 3/4 of them gone, dont get nutrients from food, full time Diarrea 15 to 20 X a day, more if problems that come n go, so I have same attitude as you, no fun, but 47 yrs of how to do as much normal and travel and try not to let it stop me from what I do  and have done pretty good. People that dont know me and hear of some of what I have, shocked, wouldnt of guess by active in vegetable gardens, flower gardens yard clean up help husband with almost 1/2 clean up as big yard he needs help, long story short, active, happy, its not fun and lots of worry same as you spare clothes as cant control fully, but I do it adn never got depressed or down, or why me. I have it, and make the best of it how ever and worse day but good d ays both,and make it work when I can and try to get thru when problems there.

I was on Humira for 3 yrs, and active Crohns so they stopped that adn now new on Stelara to stop the active crohns and hopefully get it back in remission, so good n back always and found out in the beginning, diet and certain easy to digest foods helped me by 50% less sick as I didnt know about any of that but forced to learn adn know quite a bit now to help less flares ups altho they come and go on their own but better eating few less, so I do ok, and live with lots going on same as you do but your story is so close to how I deal and work with mine and do things fun and enjoy and forsure dont give up or feel sorry for yourself, always others that are sicker have much more going on and you will be happier living even with problems come and go I found out also.....................so, I just joined this yesterday so its new for me but if anyone new to these diseases, and my story can help them find a way to live thru health and problems, thought I would join and share.


You will also like

See the testimonial
See the testimonial
See the testimonial

Most commented discussions

Fact sheet