I had my hospital appointment last Tuesday and the results were as I expected. My doctor wished to schedule a colonoscopy to check for any inflammation, or any signs of the Crohns coming back. I had preempted this and decided I’d ask to avoid the colonoscopy. Don’t get me wrong, I understand the importance of a thorough investigation but CT and MRI scans can only see so far, as can a barium meal. A scope gets directly to where the docs want to look. However, after spending a year researching this disease, I understood that you must look after your bowel. You’re advised against spicy foods, alcohol, high dairy intake, excessive fibre, fried foods, high sugar intake; basically EVERYTHING TASTY IN THE WHOLE ENTIRE WORLD EVER! (more on this later) I’d realised you need to treat your insides very gently, and I believed that a colonoscopy, although I know its safe, was something that if i didn’t desperately need, I wasn’t going to have. It takes two days out of your week, you have to drink what I can only describe as liquid hell, and you’re left so full of air that you could cart Felix Baumgartner up into space yourself. So, Dr Groom and I decided I was to get my blood taken and if everything was normal I wouldn’t have the colonoscopy for 6 months. If anything was out of the ordinary, it was a lovely early Christmas present for me back at Ninewells.
So, a week later I sat eagerly awaiting the doctor calling me with my blood results. They were fine. Which I had expected. My vitamin B12 levels were okay, inflammatory markers were super duper, everything looked good. Which meant no colonoscopy, WOOHOO! After getting these results it got me thinking, I haven’t actually written a post to give you an idea of what to expect after a reversal. I’d spoken to a few people about it, but neglected my wonderful followers on wordpress. So here goes; My experience of life after an ileostomy reversal.
First of all, it was painful. hospital was painful, going for a poo for the first time was painful, realising I was jobless again, out of education and house bound was painful. Emotionally and physically draining. I knew what to expect when in hospital which was easier than the first time round, venflons were a doddle. Catheters? no problem! An endless amount of painkillers? If I must. As you know, my epidural failed, which made my recover feel twice as long, but the real challenge was once I was home. No doctors, no nurses, just my family and I. They’d removed my terminal ilium which acts as a gate in your bowel, stopping food and allowing the nutrients and salts to be absorbed. As you can imagine, not having this gate meant food literally ran straight through me. I’d heard horror stories that people end up going to the loo up to 50 times a day. To begin with the made me incredibly nervous, I always needed to know where the closest toilet was, how long it would take me to get there, and if they’re were private toilets or the horrible public free for all when you have to poo knowing someone is silently judging you in the next cubicle, giggling at every fart, anticipating the splash landing, staring into your soul as you wash your hands afterwards. But I was pleasantly surprised to find I was only using the loo three to four times a day. I did realise, however, that when I needed the toilet, I only get a few minutes warning and then I HAVE to go. This is one of my biggest let downs after my reversal. I expected everything to be normal, but this urgency is persistent. I’m starting a new drug next week which is hopefully going to help, so I shall keep you posted.
Another thing that has changed after my reversal is my eating habits. I find certain foods don’t sit very well, either making me feel sick, or sending me to the toilet even more frequently than usual. First of all, sweetcorn. My beloved sweetcorn. I absolutely, positively adore sweetcorn. If I could I’d eat it for every meal, every day. But I find its high fibre content makes my stomach bloat and ups my toilet count to around 6 times a day. I’ve found this with most fruits and vegetables. Apples, grapes and salad being among the worst. To combat this, I drink a 250ml glass of Innocent Smoothie every morning, which is the equivalent to two of your five a day. I also eat soups, or add peppers and carrots to meals. I think at the moment I’d struggle to eat a very high fibre diet, as I just couldn’t cope with the urgency to go to the loo.
What I’ve also found is I am much more aware of how different foods effect my body. If I’m lacking in anything, I get lethargic, crabby and sleepy. Which I suppose in a way is a great thing, because it makes me eat healthier.
I think one of the hardest things once you’ve had your reversal is coming to terms with it psychologically. Every stomach cramp leaves you wondering whats going on, you panic, wondering when or if the Crohns will come back, how it will effect you in later life. Will it affect your fertility? Will you need more surgery? Will you need a stoma again? It’s always on your mind, and probably always will be. But according to my blood results, everything is fine! So for now, my mind is at ease. We’ll see how I am in six months time!
Overall, life after a reversal is as it was before hand. I have a new found respect for my body, I eat healthier, I go to the toilet more often, and I’m thankful every day that medicine and surgery has come as far as it has.
If anyone has any questions about stoma surgery or reversal surgery, please feel free to ask!