A guest post with the amazing Thaila Skye

After my first guest post for Me and IBD, Thaila added me on twitter. My word, I’m so glad she did.

This lady is such an inspiration, her Vlogs are fantastic, creative and informative. She’s a great advocate for IBD and raising awareness.

Thanks Thaila for agreeing to do this interview. I’m going to stop now because I’m gushing… Read on people, read on…

Q: How long have you had Crohn’s disease?

A: I had the symptoms of Crohn’s disease since around 2004 but I wasn’t officially diagnosed until 2009.

Q: Were the doctors quick with your diagnosis? And do you feel that you have had the care that you require?

A: The doctors were able to diagnose Crohn’s disease straight away, and they tried to tackle it with medication but by then my bowel was very severely ulcerated and way beyond the treatment of medication. I don’t think they quite realised how poorly I was until my bowel perforated, although my mother and I suspect that the bowel was actually perforated after the very painful colonoscopy because the lining of the bowel was so weakened.

Q: How long have you had your Ostomy?

A: I’ve had my ostomy for just over three years. I was diagnosed with Crohn’s disease in November 2009 and had the ostomy surgery in March 2010, so it was all a reasonably quick process, mainly due to the aggressive nature of the disease.

Q: Is it a permanent Ostomy?

A: Technically, it’s a temporary ostomy. However, I am 99% positive that I wouldn’t want the surgery reversed because my quality of life is so much better now than before the surgery. Not only that, but my recovery from the surgery was pretty traumatic, and I don’t really want to have to go through surgery again unless it really was necessary. I’ve heard so many horror stories about when people have had their bowel reconnected but then had several complications – it’s just something that I don’t think I’d choose to go through.

Q: What is one of the hardest things that you have had to deal with regarding your Ostomy?

A: I’ve had so many complications with my ostomy! First of all, I had TWO stomas to deal with because the surgeons left part of my intestine in, assuming that I’d want a reversal. A couple of weeks after my surgery my midline incision popped open and so the wound had to be packed and left to heal from the inside out (which took seven months to heal!) Then, I started getting lots of leaks which was caused by one of the stitches around the stoma not dissolving (where the knot was tied in the stitches) so the skin grew over where the stitch was, and this pulled the stoma downwards. I therefore had to try several different types of bags and accessories to try and stop the leaks, and eventually I found the right combination of products that suited my problematic stoma!

Q: Does your Ostomy have a name?

A: I named both of my stomas, mainly because it made them less scary and more cute. The ileostomy is called Stan the Stoma, and the colostomy (mucous fistula) is called Colin the Colon.

Q: Have you dated since you were diagnosed with Crohn’s?

A: During the time when I was diagnosed with Crohn’s disease and had my surgery, I was already in a relationship with a guy who lived in America. The long-distance aspect of it actually made it easier to deal with, because I had my own time alone to deal with it all separate to him. Funnily enough, he also had Crohn’s disease (and I always joked that he sent it to me in an email…) so he was aware of the symptoms and how it was affecting my body, which definitely helped. After my surgery and once I started getting healthier, we realised that a long-distance relationship just wasn’t working and we did eventually break up. A while later I was reunited with my first ever love after seven years apart. He had obviously known me before my illness & surgery, so it was a bit strange explaining everything that had happened, but he was very understanding and supportive. I think it was because I was so open and positive about my ostomy, so it was easy for him to accept it. I was worried that he wouldn’t find me attractive, but he said that I was still beautiful and that Stan and Colin (collectively known as “The Boys”) were part of my life now and it was just something he would learn to live with. Now, he says he loves them as much as he loves me because they saved my life.

Q: How have you coped with dating and having Crohn’s? Any tips for the singles among us?

A: I think the best advice I can give is to be honest and open with your significant other. If you’re already in a relationship, it’s likely that they’ll have seen the effects of your disease and so they would probably want to hear about it and actually want to support you during everything, so being open about how you’re feeling is important for them to understand what you’re going through. Give them links to websites, or information leaflets if it’s difficult for you to actually talk about, just so they can learn about it all.  For those of you who are not already in a relationship but are starting dating, I still think the best thing to do is be honest and talk about it. I don’t necessarily mean talking about it on a first date, as you don’t want to put too much focus on your disease (or having an ostomy) and let it detract from them getting to know you for the person you are. But at the same time, you don’t want the other person to feel deceived if you don’t mention it until your 1st year anniversary.  I would somehow work it into a conversation on the 2nd or 3rd date. Maybe if you’re at a restaurant and looking through a menu, just casually mention, “aah, it’s a shame I can’t eat that” – this would prompt them to ask why, and then you can explain the situation (though perhaps not go into too much detail about your symptoms over dinner!) Try to avoid any negative wording (instead of saying “I suffer with an incurable disease”, perhaps say something like “I’ve managed to overcome an illness” or “despite being ill, I’m really proud of achieving this and this.”)

Q: Do you find exercising hard now that you have IBD?

A: Not at all. Since my surgery, I have been lucky in not having any symptoms reoccur and I’m even living a more active life than I ever did before! I started off just walking at first, and then moved on to Zumba. Now I do Beachbody’s TurboFire system and I’ve even run a 5K to raise money for Cancer Research UK!

Q: Has your diet changed at all?

A: My diet has changed but only to adjust for my ostomy, rather than reducing symptoms of IBD. I avoid anything with seeds or thick skins, and I stay away from mushrooms, sweetcorn and popcorn, just because all those foods can increase the risk of having a blockage. I’ve found that trying small amounts of a particular kind of food to check whether it digests without any problems is the best way for me to see if I need to avoid certain foods or not.

Q: Other than the medication that your doctors have given you, are there any alternatives that you have tried such as aloe vera or any suppliments?

A: Aside from the Azathioprine, Ferrous Sulphate tablets & B12 injections, I just take the chewable multivitamins daily. I don’t seem to need to take many supplements because the only bowel that I use to digest is the healthy bit, so it is able to absorb all the nutrients & vitamins from my food as normal. The reason I’m on B12 is because B12 is usually absorbed by the colon, but as I don’t use my colon anymore, I need to get the B12 another way, hence the injections which I self-inject every three months.

Q: I recently saw an amazing vlog that you did that explained your story through drawings and narrative, how do you come up with such original quirky ideas?

A: The ‘Draw My Life’ video was actually inspired by several other YouTubers who have done Draw My Life videos about their entire lives from childhood to present day, but rather than talking about all of my life I decided to focus on the IBD & ostomy part of my life (mainly because it’s the most interesting!). Most of my videos are pretty impulsive, and I tend to think about the topic the weekend before and then just film it and edit it ready for uploading on a Monday (hence the name “Ostomonday”). I’m always trying to think of new ideas, and also get some feedback from viewers as to what they want to see. I’m always looking for suggestions for topics so people are welcome to tweet or email me and let me know!

YouTube: thailainthesky
Twitter: @ThailaSkye
Facebook: ThailaSkyeOfficial
Instagram: thailainthesky
Email: [email protected]

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