Here is my first blog post as the colon-less dietitian. As promised, I want to share a bit about my surgery in the hope that it will help people to have a better understanding. Since my last blog post where I mentioned surgery, I am amazed at the amount of people who have said “I know someone else with Crohn’s too” or “He/She has a bag too”. It’s great that people are recognising the condition and surgeries but it would be even better if they knew how it can impact people’s lives. Of course my blog is not a reflection of what everyone goes through, this is just my journey but nevertheless it will give an understanding of what Inflammatory Bowel Disease can involve.
Why is surgery required?
Crohn’s Disease is one of the most common Inflammatory Bowel Diseases; it is a condition which causes inflammation in the gastrointestinal tract, anywhere from the mouth to anus. The condition is treated with medication and generally patients move down a line of medications, passing from one to the next after they are no longer effective (known as a “flare up”). When all medications have failed to put the condition into remission (or in cases of an emergency), surgery is required to remove the affected part of the GI tract.
There are many different types of surgery that patients can experience depending on disease severity and where in the GI tract the disease is. Most often, part of the intestine is removed to form a temporary or permanent opening at the surface of the abdomen. This is an ileostomy if the large intestine is a completely removed and a colostomy if part of the colon remains. The rectum is often not removed as this gives patients the option of having the stoma reversed in the future (if their medical condition allows).
This might seem like a lot to take in, for me it certainly was! I tried to prepare myself by reading blogs of people’s experiences, but during my recovery I have realised that no matter how much blog reading and research you do prior to surgery, it doesn’t half prepare you for the actual experience. My consultant warned me I would “feel like I’ve been hit by a bus”. He was right.
So here is a little summary of my journey after being under the knife…
🔪Waking up from surgery: OUCH. 7 hour surgery later, I can hear the anaesthetist reassuring me it was a keyhole procedure (complications can lead to an open surgery). But all I care about now is easing this pain. Where is my magical morphine button?!
🔪1 week post op: today I walked around the whole ward. TWICE. It might not sound like much, but I am chuffed. Still feel like a 90year old lady in a 27 year olds body. Everything hurts. I’ve had my catheter and drain from back passage removed, the most uncomfortable accessories ever.
🔪2 weeks post op: I’m home! The colorectal nurse (also known as a Stoma nurse) assessed my skills on changing my stoma bag independently which were not bad so I managed to get away! Also my blood inflammatory markers are gradually reducing and I’m recovering from an infection post-surgery.
🔪3 weeks post op: My stoma bag has been a complete nightmare. The occasional leakage is what any ostomate tries to be prepared for with extra bags handy etc, but mine has been leaking EVERY day. I can’t go out confidently and just want to curl up to cry. Is this life with an ostomy?! Major breakdown mode.
🔪4 weeks post op: an emergency visit from the stoma nurse later, I got my perfect bag. Because my stoma is so small, a flat flange wouldn’t be secure enough. Therefore I tried a convex flange to push the stoma out more (don’t worry I’ll go into details regarding the bag jargon in my next post). This called for celebratory fish and chips at my favourite spot, Anstruther.
🔪5 weeks post op: I have had a better social life recovering from surgery than I did before. Feeling a bit overwhelmed by the support and encouragement from others, it makes me feel blessed.
🔪6 weeks post op: So I finally drove for the first time after surgery. It feels good to have some freedom back and starting to feel like a better version of my old self.
Not only is recovery dealing with the wounds and stoma bag, it brings a whole bunch of (for me) brand new emotional issues too! I went into surgery feeling very optimistic with the mind-set that this was what I needed to live a healthier life. Don’t get me wrong, this hasn’t changed, however during my recovery there have been times where I’ve felt really down and started to question the situation. It’s such a strong emotion with the change of lifestyle but luckily this is becoming more infrequent.
As time goes on, wounds are healing, life is becoming more “normal” again and the benefits of surgery far greatly outweigh this horrible emotion. The main benefit for me being the ability to eat a wide range of foods again. How many of us take the ability to eat whatever we want for granted? Well, over the last 3 years I hadn’t been able to eat very much fresh fruit and vegetables at all. So naturally, my first craving after surgery was a bunch of cold grapes and I devoured them without an ounce of pain after. That’s when you know you made the right decision. Being colon-less rocks.
Shehnaz Bashir RD