Dear Rob

Remember the time you had a bum? I do, and it wasn’t good. Things got so bad that you decided to have it removed and replaced with a new bum but you’ve been dealt some issues and they haven’t been easy to deal with. 

Your illness, and the results of trying to combat that illness, have caused you many disappointments, many bad times, many embarrassing times, many times that caused you to feel low. That’s completely understandable but you’ve come this far and whilst you’ve not quite made it to where you want to be, you’re nearly there. 

First you should remember where you were and how bad things were at times but from those bad times there will be many good things that you’ve overlooked, we’ll remember what they were.

Remember how you used to go on road trips to the USA? They were a time to explore cities, national parks, beaches, breweries, events, go on boat trips, climb to the top of skyscrapers, visit museums, make many, many memories. Then Crohn’s started to cause issues. First the perianal abscesses caused you to cancel a trip, then a Crohn’s flare up meant that you couldn’t even book one and then the complications from stoma surgery meant that you still couldn’t book one. But you have many, many, many fond memories and don’t forget that you’re only 41. Whilst you can’t go right now and you haven’t been for a few years, once through this you will be able to have many, many years of making many, many more memories. 

Memories of a past road trip

Remember how Crohn’s would cause you to always be aware of where the next toilet was. You gained the knowledge of knowing where lots of different toilets were, but who wants that knowledge?

Remember how you would go for a run and within a mile you’d need to use the toilet and know that you literally had minutes to find a toilet but know that the only toilet you had access to was a bush, or behind a parked car. 

Remember how things got so bad you would have the urge to go to the toilet whilst driving and have no choice but to go as you drove or if you did manage to make it back home you knew that you wouldn’t be able to make it from the car to the toilet in time. 

Remember how the numerous surgeries for perianal abscesses made you incontinent and there were occasions when you’d be out in a field photographing a race and you’d soil yourself not once, not twice, but three times because you were amongst people and too far away from a toilet.

Remember the decision to have surgery and the hopes for a better life with a stoma. It was a big decision but you made it quickly. You knew that it was the right decision for you at that time. You remained positive that things would change and acknowledged that it would take time and you would come out the other end with many new benefits. 

And when your specialist told you that he didn’t know what to do next in terms of whether you should continue with medication as there weren’t many people like you, not many people with Crohn’s Colitis who elected for surgery but instead continued trying alternative treatments, that made you doubt whether you had made the right decision but whilst they may find a treatment that works, the Crohn’s is still there, just not active. You did make the right decision and when that doubt creeps back, which it still does from time to time, just remember that you aren’t suffering from the horrible side effects of Crohn’s anymore. 

But whilst Crohn’s hasn’t gone for you – it never will – you’ve removed the part of your body that was being most affected by the disease. There’s always a chance that it’ll come back in a different part of your bowel but it’s less of a chance than if you didn’t have the surgery. And let’s not forget the fact that by removing part of your bowel you have lowered the risk of cancer in the future. 

So you’ve gone from dealing with all the shit that Crohn’s literally throws at you to choosing to have life-altering surgery with many benefits but then things haven’t gone quite to plan. Let’s look at the positives rather than the negatives. 

You may have been going to see practice nurses every day for 10 months but you’ve got to know some lovely people. You’ve bought them chocolates, shared stories with them, bumped into them in pubs, you’ve even compared mushroom photos whilst your bum is on show! The receptionists have been good to you sometimes even remembering to  proactively book you appointments in advance to ensure you get the best ones to fit your work schedule. 

Only the best for my nurses

In addition to those 7 practice nurses and receptionists, throughout the year you’ve also encountered 8 district nurses, 3 stoma nurses, a surgeon and a surgical team, a surgical assessment team, a wound specialist, ward nurses, a gastroenterologist, an infusion unit, MRI teams, a day surgery team, an outpatient department, phlebotomists, and probably even more people behind the scenes. All of these people have been working to help you on your journey to becoming well. How amazing is it that dozens of people are working to help you?

Your routine has changed during the Crohn’s flare up and post-surgery and has meant that everyday before going to the nurse you have gone to a coffee shop where you have become a regular customer – you have to love the feeling when you walk in and without asking the barista has already made your coffee for you. The baristas don’t even need to ask you what you would like to drink and you have met other ‘regulars’. One even asks about how you’re healing and when you’ll be able to start running again. What a great feeling that someone you don’t really know is showing an interest in you. Through being a regular you were even invited to the launch of the new Christmas range of drinks. 

When you elected to have surgery you decided to chronicle your journey through a blog called My New Bum (people still love the name when they hear it!). You thought that you would write about your post-surgery recovery and then getting back into running – and you did. You even had some coverage in the media (well done on allowing for the topless photo of you showing your colostomy bag to be published). 

Then it started to go downhill but you continued to write about your journey. You continued to share, quite graphically at times, what was going on. You were helping others by showing what could go wrong and how you could remedy it. And by writing about what you were going through you were becoming more knowledgeable about the things you were having to deal with. You know your Primapores from your Cosmopores and that staphylococcus aureus is resistant to clarithromycin but not doxycycline. 

And when it came to trying new treatments such as the Vac dressing, you encountered people who had gone through the same treatment or were going through it at exactly the same time as you. That was so helpful for you and whilst it had no bearing on how well your treatment went, you could at least understand how well it went for them and gauge how long yours would take. You also helped others understand what this treatment was and how it worked. 

You may not be able to run right now but you’ve had a taste of what it’s like with a colostomy bag. You would go out for a run without worrying about going to the toilet before hand (just a quick bag change if necessary), you wouldn’t need to worry about going to the toilet whilst running and if you did need to go you’d just poop in your bag whilst running. 

You even caught a ferry to Lundy Island, completed a 14-mile trail race and travelled back without the need to change your bag. Don’t forget that. That was a true taste of what life will be like. I bet a large number of people in the race were worrying about going to the toilet before running.

And when things got too much to handle, you acknowledged that and sought help to understand what has been going on, to accept that some things have gone from my life or have changed but there are positives hidden amongst those disappointments and the future holds so much. Taking that step to seek help was a big step for you so well done!

And by seeking that help that’s why you are here writing this letter to yourself. You are acknowledging that you’ve been through a lot and by understanding what you’ve been through you can remove those negative thoughts and doubts and accept that you’ve made the right decisions and gained many positives from your decisions. 

Don’t forget where you were. Don’t forget how much Crohn’s used to control what you did. By remembering what things used to be like you’ll appreciate how good things will be in the future. 

You know that Crohn’s hasn’t truly gone, but it has. Sure it can come back but there’s no benefit in thinking about what may happen, right now you’re in control, not Crohn’s, so yes it has gone. 

Look forward to 2020 when you will start doing the things that you used to enjoy but along the way, don’t forget to live for now. Make sure you enjoy what you are doing right now, even when you can’t be doing the things you want to do. Make sure you seek the positives in all that you do, understand the negatives, and learn from them, and remember to be grateful. Always be grateful for what you have and where you are in life. 

Keep focused and stay positive

Rob

Previous ArticleNext Article
Diagnosed with IBD in 2002, I have experienced the usual ups and downs of having a chronic disease and tried numerous medications but the time finally came in 2018 to elect to have surgery to improve my life. I had the surgery in 2019 and this is my journey having a 'New Bum'.

Leave a Reply

Your email address will not be published. Required fields are marked *