I Have Learned to Live with Ulcerative Colitis – London, UK

Firstly, I would like to tell that my elder sister was diagnosed with Ulcerative colitis when she was only 14 years old..and she had been through tough times in her life and I saw her struggling with UC.  I still remember myself giving her Asacol at nights for like many years until she got married…She had like 5- 6 years of active UC and now her UC is in remission….
I was diagnosed with Colitis 6 years ago when i was 19 years old and was in 1 year of my bachelors…I first visited a General Physician in Pakistan who had given me antibiotics for my stomach upset (that’s what he told me) and asked me to give my stool sample as he wanted to know how does my shit looks like :) But as my sister had Colitis and the many symptoms (like bloody stool) was similar to my sister’s my mother took me straight to the same doctor who treated my sister’s UC long time back…I had my colonoscopy done on same week and doctor said I had Ulcerative Colitis.  And he didn’t explain much what UC really is and how I should expect with this.  I remember that my mother cried alot after i was diagnosed.  And the things settled down pretty soon and I was ok until i had my second flareup.

At that time i was in my 3rd year of Bachelors and that’s the most difficult part of my life where I had no idea what i m was going through I had sever tummy cramps i had never even think of…I used to sit in the Loo for hours.  During my flareup i used to go to the loo for 12- 15 times every time bloody diarrhea i was admitted to hospital for 3 days as I was dehydrated and had 5 drips…I had lost much weight and had all the other possible symptoms i could had..and i was ashamed of ulcrerative colitis…That was the time i had lost all my hopes and even i had stopped going to my university for a month and didn’t submitted any assignments…I was really depressed and i had all frequent mood swings…( at that time i had no idea that the steroids i was taking was possibly responsible for the mood swings and depression)…That time no one in my family had any idea what I was going though i was totally quiet and i had cried for weeks…My doctor helped me alot and now that time he explained me what UC is and how should i tackle different situation… After few days my depression went off and I was back to normal life started studying again and that was the time I committed that i won’t quit my happiness my life and my smile for just a diseases.

I usually had one or two flareups during a year.  Last year i had two flareups in one i ended up in hospital and second one was bit mild.  As for now my UC is active :( that’s why i m writing this and now i don’t live in Pakistan anymore I am in England for the last two years…and now my symptoms with every flareup is getting worst…This time i am having bloody diarrhea, tummy cramps, fever at nights weight loss ,have no feeling to eat i hear all the weirdest voices from my tummy and above all vomiting ( as my stomach is almost empty i only throw up bile) and as its getting chiller in London I am started having pain in my joints especially lower part of body back, knee and elbow…
I feel my immune system is getting worst as I have been suffering from asthma since childhood now i catches all the viral infections like tummy bug, skin problems, flu and cough I don’t know people with UC is most likely to suffer asthma or vice versa.
I really don’t have any idea what triggers the UC whether its the diet or some medication (especially acne medicines)..
But i surely avoid all those asian spicy food , dairy product. especially during flare up i don’t eat high fiber food…
As for now i have learned to live with Ulcerative colitis It can’t be cured fully but i do keep my self relax avoid stress or worrying..Even Travel during flareup but i keep information about all the toilets near by place i am mostly likely to be going… I keep a card in my bag that I am a UC patient and have no control over my stool (this is bit funny but helps in jumping the loo queue easily) …UC is part of my life now and i work it out during flareups…bz i guess there’s nothing that can i do to avoid a flareup..

Submitted by “XX” in the Colitis Venting Area

Ulcerative Colitis Medications:

Asacol 800mg 3 times a day!!
When ever my UC is active I have to take steriods…
I had taken calcium supplement for a year or so sorry couldn’t remember the name…


6 thoughts on “I Have Learned to Live with Ulcerative Colitis – London, UK”

  1. Sorry to hear you’re having a rough flare! Have you talked to a doc about the vomiting? I don’t think that’s common – could be serious – might even want to head to the A&E for that…

    Also might talk to the docs re: the acne medication, esp. if it’s something you take orally. I think Accutane has been linked to UC.

    Re: Travel. I like the idea of having a card to explain to people your “official” need for a bathroom! Where did you get it? Just from your doctor’s office?

  2. I have had a card 2 years now and used it for the first time recently as I am having a flare at the moment too. Ihave just travelled overseas which involved 4 planes there and return and when checking in I asked for front seat to be close to toilets (and I am sure pleased I did)9 hours is like forever, when flying
    I got my card from the hospital at the time when I was diognosed with UC.
    I have just had 3 super months UC free but got stressed with a course I am doing and ping first appears the belly pain and then the bloody TP. Fortunately it is not getting out of hand and I am keeping a hold on it with pentassa and special eating pattern.
    Hope you are feeling well again soon “xx”
    Shirley NZ

  3. Thanks so much for sharing, I am newly diagnosed with UC as of last month, and reading stories like yours give me some hope. I’m still trying to wrap my head around this disease, and battling with the depression of it as well. But like you said the depression could have something to do with the steroids? I also, take Asacol…800mg 3 pills in the am and 3 pills in the pm. I start 6-M this week :( which scares me to death.

  4. Thanks Julie for the link! Like Shirley, I run into problems flying sometimes. I always try to get aisle seats for easy restroom access, but when those are short, I’ve run into problems sometimes when flight attendants or other passengers don’t believe from looking at me that I have a medical condition that requires it. I’m kind of fussy about giving my data to websites, so I’ll try asking at the GI clinic next time I go if they have a card… if not, maybe I’ll give the website a try!

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