A diagnosis at last..
I’ve pretty much put all business on hold for the last week and a bit because my daughter has been really ill and no matter what is going on with business, there are times when it just isn’t important, when other things take over and you realise that all that matters is that your loved ones are ok and happy. Now, finally, things seem to be improving and I decided to write this post as a kind of ‘gathering of my thoughts’, I guess, and maybe to raise some awareness of IBD (irritable bowel disease).
Before this time in my life, ulcerative colitis was just something I’d vaguely heard of – I didn’t really know what it was about or what the symptoms were. I think maybe I had an idea in my head that it was something unpleasant and uncomfortable but I didn’t know that it was an auto immune disease or that the symptoms can be horrific and cause lots of peripheral health problems.
My daughter had been under the weather for quite some time with throat infections and just generally feeling tired and listless andshe was getting multiple mouth ulcers all the time, which made eating anything sore and uncomfortable. That in itself was hard, even before all the other symptoms started. We had lots of trips to the doctor with no real resolution and we were worried but not really sure what was going on. It’s her Leaving Cert year and we were caught up in all the exam pressure and worried about her future and concerned that she was so drained of energy that studying was a momentous task.
Things progressively got worse and she told me that she was having bowel movements with blood – that was a scary moment, I had no idea what it meant but knew that we had to go to the doctor again as soon as possible. We did this and that was where the word ‘colitis’ was first mentioned. The doctor did lots of blood tests and referred her for a colonoscopy. I know they say not to Google, but it’s impossible not to! I read some more but didn’t feel too panicky at that stage, just a little relieved that there was an explanation and hopefully a path to treatment.Unfortunately, in the ensuing weeks, whilst waiting for the colonoscopy, things deteriorated to the point where she was having 6 bowel movements a day and feeling really ill. She struggled through her Leaving Cert Art practical’s which took place over two days (still not sure how she managed that!) but there was no sign of any improvement. We had to make the decision to bring her to A&E and my husband set off with her early on a Friday morning. Little did we know that a week and a half later, she would still be in the hospital.
It’s been a rocky road – I would rather have gone through the whole thing myself a million times than see her suffer. No matter what age your kids are, any pain they feel is like a knife to the heart. She was put on steroids immediately and a drip to give her some nutrients. Because she went in on a Friday, we had to wait until the weekend was over for the colonoscopy to take place. She was fasting and not very happy and the constant taking of bloods didn’t help. She eventually had her colonoscopy and it showed that her entire colon was inflamed – the diagnosis was Ulcerative Colitis and she was in the middle of a particularly severe flare up.She was monitored all through the week, having to endure stomach injections to prevent clots, bloods being taken every day (18 blood samples taken one day!) and being on and off a drip. To make matters worse, she developed tonsillitis whilst in the hospital and then needed IV antibiotics. Things were very slow to change, there didn’t seem to be any progress in the first week and the doctor spoke about colon removal as an option. This was a really low point for me but in retrospect, he was just stating facts rather than suggesting it as an immediate plan. The trips in and out of the hospital every day were hard and trying to keep cheerful and keep her spirits up wasn’t always easy.
Finally, the second weekend in the hospital, things began to change. She showed a little improvement and although the doctor was initially concerned with liver results and the fact that things weren’t clearing up quickly, it began to turn around.
She’s moved from steroids to immunomodulators - these weaken or suppress the immune system and work to reduce the inflammation. There are side effects as with any drug but I guess I’m hoping they will be minimal. They will make her more vulnerable to infection but should keep the inflammation under control.
Today is discharge day if nothing goes wrong! It’s going to be a life of management but from talking to other people with Crohn’s and Ulcerative Colitis, it’s serious but can be dealt with and managed – she will continue to take the drugs prescribed and we’ll maybe look at diet and alternative therapies also. I’ll just be happy to have her home with us again and it’s put so many things in perspective, how much her being well is more important than anything. Also I’ve had so much support from friends and colleagues and even online business friends – I have to thank each and every one, the advice and support I’ve gotten has been amazing!
Finally here are some links here to sites with some information and support for Colitis and Crohn’s and if you have experienced any of the above symptoms, get it checked as soon as possible:
Glad to hear you have a diagnosis and can at least move on from where you were and get treatment to help manage the condition. Wishing you both the best xx
Thanks Trish, xx
I know quite a few people who have this illness, yet live healthy and happy lives. Once it settles with medication and life changes, I have seen them recover extremely quickly. Stress is the enemy of this illness! My daughter is doing leaving cert too and it is such a difficult year for many students. I hope your daughter is feeling much better, very soon. All the best, liz.
Thanks Liz, the Leaving Cert really is stressful, it puts them under so much pressure! Thanks for the good wishes :)
Cliona, I'm really sorry to hear of the turmoil that you and your family have been going through. I hope your daughter will be on the mend soon, now that the doctors know what they are dealing with. Wish her all the best in the Leaving Cert, I know its a difficult time for teens, my son did his a few years ago. Niamh
Thanks Niamh, appreciate it! She's feeling much better now :)