Guest Post – Zero To Ileo In 4 Months

Good morning and happy Monday!  I am delighted to share a guest post from the lovely Julie today.  Julie looked after me when I was last in hospital for my knee which had locked again.  We got chatting as she saw I had a stoma and she told me about her husband who had just had surgery for an ileostomy himself.  We have kept in touch and Julie messaged me to tell me about the skydive she plans to do to raise money for Crohns & Colitis UK.  She asked if I would like to join her and her friend – unfortunately I am not that brave!  I did want to help her however and am asking  that everyone who can spare some money, support this lovely lady and sponsor her crazy antics!  Her sponsorship link is in the post.

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Zero To Ileo In 4 Months – Think Of The Children!

The few months since October 2017, when my husband was diagnosed with ulcerative colitis, have been difficult; sleepless nights, constant trips to the doctors, unexpected stays in hospital and becoming carer to him and his belly butt only being the start of the journey. The disease had quickly established itself, and because of severe flare-ups one after another leading to multiple hospital admissions, and medications being ineffective, the only options was to have emergency major surgery in January 2018. Even surgery isn’t a cure and we still have regular visits to the hospital. Our lives had changed in a relatively short time and we had to find new ways to cope.

When we first heard that the condition was genetic, we tried to find out if any of his family had the disease, perhaps looking for someone to blame for this awful state he was in. It then dawned on me that my daughters had a higher chance of getting the disease, I would hate them to have to go through the same thing and the distress it causes, but I could do nothing to help. Or could I help? I decided the only way I could help was to raise money for research in the hope that if any of my children did get UC, there would be better ways of dealing with it or even a cure.

I looked at various options to raise money and decided that I’d throw myself out of a plane, strapped to a man (hopefully muscular and handsome), and land gracefully with the help of a parachute.

I’m looking forward to it, kind of, I’m actually shitting myself (fitting as it is for ulcerative colitis) but am determined to do it. The date in September is booked, filming arranged, and I have a t shirt and money raising kit from Crohns & Colitis UK. I’ve set up a funding page, donate to Julie’s skydive, and have raised a fair amount in the first three months.

Click here to sponsor Julie’s skydive

All too often, people only think of themselves and the now, how is it going to affect me and what can I do to help myself. But when faced with uncertainty, sometimes we need to look at the future, how others are going to be affected, and what we can do now to help them have a better life.

I met Natalie in the ward on which I work, we chatted and she told me about her blog site. She told me about herself and I discovered she had IBD like my husband. I learned how she coped and was given tips on how I could help my husband. Natalie gave me her contact details and we have been in touch ever since. If I could take one good thing from this disease, it is the lovely people you get to meet, the way they share stories and information, and the support they give each other.

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Please help Julie raise lots of money for CCUK – such a brave lady and a great cause which is close to both our hearts.  It was an absolute pleasure to meet Julie and the care I received from her in hospital was brilliant, her husband is lucky to have someone so caring looking after and supporting him.  If you can’t afford to sponsor, please consider sharing this post so more people can see it.  Every bit of help is much appreciated.

Please let me know in the comments below about your efforts for charity – what are you raising money for and what are you doing?  Would be lovely to help share more and more of these.

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Why Online Support Groups Can Be So Helpful

I joined my first IBD online support group in September 2015. I had been struggling for a while with my mental health and had just made the big step of opening up to my rheumatology nurse about how I was feeling.

I had been diagnosed with Crohns Disease almost three years previously but still didn’t know much about it. After starting to open up, I knew one of the steps that would help would be to learn more about my illness.

After a quick search on Facebook I found the CCUK charity page and support group. The group was full of people with Crohns Disease and Ulcerative Colitis, people who had gone through surgery, people with Ostomies and more. Within a few days I had joined another couple of groups and began talking to some people. I read alot of posts and started to learn more about Crohns Disease. At times the information and people’s stories seemed scary. But what I noticed most was the still positive nature of so many people going through some of the hardest times and the sense of community.

I learnt about things the doctors should have told me when I was diagnosed. I was told I had Crohns Disease and pretty much sent on my way. I have also learnt a lot that the doctor’s don’t tell you!

Talking to people with the same illness as me was amazing – they knew exactly what I was going through and how I was feeling. I also loved seeing the ‘ordinary’ day to day photos and posts about people’s lives. It helped me remember that whatever was going on, I was still a person too. My illnesses are only part of my life and do not define me as a person.

I have had some great opportunities including setting up my blog and being invited to be part of The IBD & Ostomy Support Show. The community has been amazingly supportive and lovely and I can’t thank them enough for reading and sharing my blog and the lovely comments and messages I receive.

I have also been lucky enough to make some of the most amazing friends. Some of these people have supported me during the most difficult times of my life – hospitalisations, my marriage breakdown and my stoma surgery. I couldn’t imagine where I would be without them, which sounds cheesy, but they have become like family.

Some of us were able to meet up at the GYBO Ball at the weekend. We have done weekends away, nights out, charity events and stayed at each others houses. We live in all different areas of the country and don’t get to see each other as often as we would like but I know whenever I need something, these people are only a call or message away.

And finally (now time for the soppy part), I’ve met the most amazing man. After starting chatting due to a mutual friend from the groups we became friends. Things progressed and we decided to meet up. Since then, despite our health problems, he has been my little bit of fairytale. Eight months on from that first meet up and I’m happier and more in love than I could have ever imagined. I’m definitely a very lucky girl!

The online forums have their faults. There are trolls, people can be mean, ill informed and some people aren’t who they pretend to be. Overall though, I hope my experience shows that the positives can outweigh the negatives. Depression and anxiety is common when you suffer from IBD. This can make it difficult but I would honestly say if you get the chance to attend a meet you will not regret it!

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Check out this great post from Counting My Spoons who writes about ‘The Importance Of Support Groups’