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World IBD Day | The Highs & Lows

Happy World IBD Day My Beautiful Pelican Lovers,

I hope you are all doing okay this month and following some of the tips I gave you for staying good in quarantine. I know how hard it is especially right now with the weather being so lovely. Since it is World IBD day week I wanted to talk all things IBD.

Firstly, I released a special video to celebrate World IBD day, we are all sharing our most embarrassing moments with IBD. I made this video because I thought it was really important for us to be able to normalise talking about things like this and not being ashamed of it. I hope you all can take the time to have a watch and I hope for those of you who sometimes feel alone because of things like this can relate and see it is nothing to be ashamed of. Watch it here.

The good and bad days

So, as most of you know, but if you are new to IBD or reading this blog because you know somebody with IBD, days can be 50/50 with us. Some days are amazing, and some are just the worst days ever made.  On the days where you have good days, no pain, no flare-ups and the fatigue aren’t overruling you should make the most of it, even if It means just going for a walk and being present in nature.  On those bad days, it’s really okay if you don’t want to socialise with anybody or get anything done, use this time to deal with it how you do best. If that like me is staying in bed and binge-watching something like Gossip Girl, RuPaul or Desperate Housewives then that is perfectly fine. Never feel like you still have to go and do things and worry about letting people down. The right people will understand and be supportive of you.

For me, life has been up and down in regard to my Crohn’s Disease. Before my diagnosis I had 7 whole years of pain, it was the most horrible pain and I will never forget it. I actually got used to living life with the excruciating pain which is not how life should be lived at all. I sometimes used to think to myself ‘I don’t think I can carry on living if I have this pain forever’. When I collapsed and was rushed to hospital I remember when I was finally allowed to eat food again after being fed It via a drip for 3 weeks I was so scared. I didn’t even want to try anything in fear that horrendous pain would return, it took a while for me to become brave with food again, despite my surgeon urging me to try foods.

Changed life for the better

Honestly, my life changed for the better, I may have just woken up with a stoma bag and a scar but being able to eat whatever I wanted was like a dream come true. No pain! I was so happy. I have to admit I really did go on a binge with food as much as I could because I was making up for lost time. The Crohn’s then when it returned caused me to again have those same symptoms I had before diagnosis which wasn’t very nice. I was then finally given steroids as the Crohn’s had returned but this time 40cm long, longer than the 35cm of bowel I had removed.

I remember being so excited to start these steroids because I knew I would finally be able to gain weight, my consultant used to laugh and say I was the only person excited about having moon face. I had battled with being able to put on weight for nearly 9 years so this for me was amazing. The steroids did just that with the weight gain however, the belly-bloating was major. I had people make comments about it all the time, asking I had had cheek fillers in my face and even if I was pregnant. Honestly, I still didn’t get upset with any of this I was just so grateful to have gained weight.

After the steroids, I was given the medication I am now on. Azathioprine and Infliximab Infusions. These have really been working for me and touch wood it continues to be that way. My Crohn’s being controlled now is amazing for me, it allows me to live a normal life as such, yes I struggle majorly with fatigue not only because of the Crohn’s but also because of the part of my bowel removed was where B12 was produced so, therefore, I have injections which I will continue to have for life. I work out a lot also because this also helps keep me calm and not stressed which also helps prevent flare-ups. It has taken a lot to finally get my condition under control and a lot of tears have been shed but I am so grateful for this because I finally now have a diagnosis.

Dealing with IBD

I think a lot of people fail to realise how hard we do have it at times in regards to IBD; if you have a stoma sometimes there’s a constant worry of leaking in public or having to get up in the middle of the night to change the sheets and have a wash because you’ve fallen into a deep sleep and the bag has yet again leaked.

If like me you’ve had a reversal or just have severe Crohn’s or Colitis how hard it is for us to not quite often poo ourselves. I have shed a lot of tears in regard to all of these things happening to me with and without a stoma. I am so lucky to have family and friends and the most supportive boyfriend who don’t make me feel ashamed of any of this. However, as nice as it of them always being supportive, they never truly get it as fully because they aren’t the ones in this position.

Mental health & self-care

All of the above also plays a part in our mental health. Mental health with IBD is very much a thing. I have been diagnosed with PTSD after everything that has happened to me and I have up and down days. My anxiety often plays up and small problems become massive problems in my head. I have highs and lows literally. At times, I can be so positive and on a role, getting everything, I need to do done to being so low I can’t actually get out of bed for a whole week. I can’t reply to messages, I can’t get simple tasks done. I sleep most of that week and just feel so down. I think it’s so important when you have days or blips like this to make it clear to everyone around you that you need a little space and time to just get yourself together so will be back in touch after it blows over. Again, those who are real in your life will be fine with this.

Self-care is key, the best story I use to describe how you should handle these blips and also in general when it comes to self-love is the tortoise and the hair. Always be the tortoise. If you rush into things and go to fast you aren’t taking the time to fully recover and get to know yourself a little better, therefore you rush back into things and the next time a blip comes it hits twice as hard as you still hadn’t fully recovered from the first. Being the tortoise means you really are taking the time to heal, you’re taking the time to treat yourself with love and care, not rushing or letting anybody rush you. When you are out of your blip you will feel so much better and stronger because you really took that time and was patient.

I am guessing most of you reading this would have been like me and got a 12-week lockdown letter for being high risk in this pandemic. I am guessing most of you reading this also got another 12 weeks added on like myself. Yup, so frustrating right? BUT I cannot stress enough how important it is for us to follow the guidelines they are here for our own safety. Honestly, I am grateful for this because even if I have to spend longer than most in lockdown I am alive, some people haven’t been so lucky. This is literally a short space out of your life, and I would take this than not to be alive anymore any day.  Just because you have to stay in does not mean those who don’t will be getting any further than you in life, like I said it is not a race and you can use this time to plan for the future ahead of you. Try to keep yourself busy and remember when having those really hard quarantine days just remember you are alive and remember how lucky you are.

Until next time, stay safe

Love

Natalie-Amber

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