World IBD Day and our experience of Ulcerative Colitis

by - Thursday, May 19, 2016

Today is World IBD Day - for those of you who don't know what IBD is, it stands for Inflammatory Bowel Disease, not to be confused with IBS (Irritable Bowel Syndrome) which manifests differently.
IBS is quite common but it's unlikely that you will go on to develop IBD, however people with IBD may have similar symptoms to those with IBS, as well as a host of other (often serious) complaints.
Inflammatory Bowel Disease is basically an autoimmmune disease - here is a brief summary from Healthline:

'The immune system may also play a role in IBD. Normally, the immune system defends the body from pathogens (organisms that cause diseases and infections). A bacterial or viral infection of the digestive tract can trigger an immune response. As the body tries to fight off the invaders, the digestive tract becomes inflamed. When the infection is gone, the inflammation goes away. That’s a healthy response.

In people with IBD, however, digestive tract inflammation can happen even when there’s no infection. The immune system attacks the body’s own cells instead. This is known as an autoimmune response.'

To mark the occasion, I wanted to share our own family of experience of Ulcerative Colitis and how debilitating and serious it can be.

My daughter Síomha was first diagnosed in her Leaving Cert. (final exam year) of school. She had been feeling ill and exhausted for some time but we had no real clue about what was happening and put a lot of it down to study stress. However the symptoms steadily became worse, the most worrying for me was that bowel movements increased to up to 8 a day with blood and severe stomach cramping. We went to the GP and were put on a referral list but we couldn't wait as things seemed to be steadily going downhill.
We made the decision to bring her to A&E where she was immediately put on a drip and the fight to get her immune system under control began. On that first occasion she spent 10 days in hospital with the symptoms only alleviating at the very end.
This was after a course of intravenous steroids as well as immune suppressants and at one point surgery was mentioned but she rallied eventually and we avoided that course of action.

Her experience was the first of two 'flare-ups' as they are known - the pattern of UC and Crohn's is that it can be under control for a time and then flare up again at different points. It is never 'cured' as such.

In the couple of years after her diagnosis, the worst of the symptoms were under control for a long period - however, the invisible toll of Ulcerative Colitis is high. The disease itself and side effects from the medications can severely compromise quality of life.

The following quote from the Crohn's and Colitis Awareness Facebook Page gives some indication of just how awful it can be:

'Fatigue. Weight loss. Weight gain. Blood. Frustration. Food restrictions. Arthritis. Joint aches. Headaches. Eye problems. Skin issues. Stress. Anxiety. Fear. Hives. Medications. Side effects. Money. Insurance. Infusions. Doctors. Hospitals. Decisions. Surgery. Hair loss. Scopes. Scans. Radiation. Tubes. Wires. Appliances. Dehydration. Malnutrition. Prep drinks. Nausea. Bloating. Fever. Abscesses. Pain all in one day, and people still think Crohn’s disease and ulcerative colitis is just a ‘pooping disease’ ‪#‎IBDaware‬ ‪#‎PurpleRibbon'‬

Fast forward to recent times and poor Síomha began to get ill again. (She attends clinic at regular intervals to monitor her condition but a flare up began out of the blue).

This time her hospital stay was 2 weeks - she just got out this Monday gone by and I was so happy to have her home again!
  
She was admitted pretty quickly as we arrived in A&E early on a bank holiday Monday. The day was spent in the A&E area but she then was moved to a trolley in a corner of a ward. She was there for 2 nights before being moved to a room. Being on a trolley with no privacy and a need to use a shared bathroom was not ideal for someone with UC! Again she was put on a drip which involves having a cannula inserted, restricting movement, another issue when she needed to get to a bathroom quickly.

We had a very worrying two weeks, I tried to get into hospital twice a day where I could and Mark usually did an evening shift. Her symptoms worsened as she was in hospital, her blood inflammation level was high and she was low on phosphorous and potassium. She was given supplements to take which made things much worse and caused even more nausea and stomach cramps. We tried in vain for quite some time to talk to Síomha's doctor, I seemed to keep missing him and although I requested an appointment on numerous occasions, it didn't transpire until almost the end of her stay.
Again, it was a battle with her immune system and nothing seemed to be making any appreciable difference. Her Imuran (an immune suppressant drug) was increased and she was changed from Pentasa to Salofalk. She was also on oral steroids at this point and a calcium supplement because steroids affect the bones.
Finally her doctor made the decision to try a new medication which she hadn't been on before. It's called Humira and is an anti-inflammatory biologic medication. 'It was the first fully human monoclonal antibody drug approved by the FDA' - Wikipedia.
Going on Humira required that she have an x-ray to check for TB. It can cause serious infections in people taking it including TB and lymphoma although it has a high success rate in UC and Crohn's.

She also needed to have another colonoscopy which showed that the ulcers in her colon were quite deep.
Finally, over the weekend (she was allowed out for the day on Saturday and Sunday, which helped I think) things started to improve slightly and much to my surprise, she got the all clear to be released on Monday.

It was a very happy moment, I can tell you! We took selfies on our route out as we said goodbye to Naas Hospital :)

Leaving the Ward!

In the Corridor

Downstairs, nearly there!


Escape at last!


Síomha is a first year student in the National College of Art and Design and this flare up has impacted her college work and meant that she couldn't complete her final assessment. Fortunately, the College have been really understanding and supportive and she has been able to get an extension to finish up her work but it's important to remember that these diseases have a serious impact on work,college and home life.

So now, going forward (as before), Síomha will have a daily routine of medication and will also have to deal with the side effects of that medication as well as the debilitating fatigue and other symptoms that go hand in hand with Ulcerative Colitis. 

One of the many things I love about Síomha, though, is her ability to retain her sense of humour even in dire situations - the live bathroom updates were a highlight for me as well as the solid custard video :)

If you know anyone with Ulcerative Colitis or Crohn's, try to remember that these illnesses are for the most part 'invisible' - you may have a friend who cancels meetings, or a family member who doesn't seem to be pulling their weight or a boyfriend or girlfriend who seems to be apathetic about things. It could be that they are suffering pain or fatigue or discomfort and are just doing their absolute best to carry on in difficult circumstances. A little understanding and sympathy might just make their lives a little easier.

Also, I have to stress that this disease is NOT caused by poor diet - this seems to be a common misconception and comments to this effect can be pretty insulting to someone afflicted with a disease through no fault of their own.

For further information on World IBD Day and Ulcerative Colitis/Crohn's Support, check out the following links:









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8 comments

  1. My friend suffers with IBD and it's so horrible to see her when she is at her worst. I find it amazing how sufferers live their lives and don't let it stand in their way X

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  2. I didn't know it was world IDB day but I do think more people should know about the condition. I know a few people who have Crohns and it can be very tough to cope with x

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  3. I know someone who has Ulcerative Colitis and it has not been fun watching on sidelines and not being to help. Thanks for raising awareness. Great post

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  4. I've had Crohn's for 22 years now and my 12 year old daughter was diagnosed with it 2 days before her birthday last year. Too often it get confused with IBS which although has a few similar symptoms is nowhere near as serious and neither are the treatments. You don;t get given chemo for IBS where you can for IBD

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    1. Yes, I did highlight the differences, I think it can be confused with IBS which is why I did my best to support #worldibdday

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    2. Meant to say too, I've been hoping that my youngest daughter doesn't get it also. I know there is a genetic link but Siomha is the first in our family to have it as far as I know.

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  5. Thanks for talking the time to write this, I had never heard of IBD only IBS and now I think it's important people know about and understand the difference. It sounds like a tough journey for you and your family.

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  6. I have to admit I've never heard about IBD. Seems that everyone is talking only about IBS. It's great that you wrote about it, so important to raise the awareness.

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