Disclaimer: This information is based on my own personal experiences since my ostomy surgery in August 2016. If you are seeking dietary advice regarding your stoma, please contact your stoma nurse, dietician or medical team for further assistance. I’m coming up to six months with my wonderful ileostomy, Pricilla. It’s not always been a great relationship but I saw quite quickly how she was going to make my life with…
IBD
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Fearful
I’ve already had five and a half years with my chronic illness. I’ve gotten used to it disturbing my life and disrupting my plans. It seems to have a knack for doing this, a lot. What I am not used to is being without medication. It feels foreign, almost like we are testing the IBD gods, tricking them into thinking I am well. For all intents and purposes, I am…
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Part of Coloplast: Charter – Ordering Ostomy Supplies
I was introduced to Charter as part of my pre-op care from my stoma nurses. They recommended the service for several reasons: Supplies could be order online, 24/7 They have the largest availability of products from a variety of companies Their delivery was discreet. Almost all new ostomates from the hospital would recommend Charter for their level of professionalism, knowledge and friendly advisers. Ordering my ostomy supplies for the first…
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One Year On
Three hundred and sixth five days. A whole year; twelve months. We sat in traffic. It was a busy Wednesday morning rush hour. I’m anxious, excited and ever so scared. It felt like make or break time; would these doctors also recommend surgery? Did I have more choices than the scalpel? I was in agony. I knew I was sick and I knew that I would probably choose surgery but…
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Coming off “The Radar”
I’ve had Crohn’s disease for over five years now and I think in all those years I have never ever been off the departments radar. You know what I mean right? I’m always causing trouble. If its not for being in hospital on their ward, I am taking biological medication and they discuss me in their weekly MGT meetings. Sooner or later I become unstable so I am then discussed because my…
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Remission: I AM IN IT
So, this week is proving to be quite good. And I want to share my good news, because lets face it, sometimes it happens so infrequently, I just get too excited. Today I’ve had the results of my MRI scan from last week come back, in the form of my IBD nurse calling me to cancel and rebook some appointments with me. I enquired to what was open on the…
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MRI Scan: Small Bowel Study – 19.01.17
So, last week I was at the hospital for a routine test; a Small Bowel MRI Study. My surgeon is using this procedure to finalise the plans for whether or not I continue to receive my Vedolizumab treatment, as my Crohn’s has gone into possible remission. I’ve had a couple of these MRIs before; all pre surgery and without my ostomy. I was hesitate, anxious and nervous for the following…
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“Remission” – One Step Closer
I have questions. So. Many Questions. 1. How do you determine if surgery has succeeded? 2. How do you measure ‘remission’? 3. Can you actually achieve it? 4. Do I want to be medication free? I hope these all seem logical, or at least follow on from each other. Maybe the additional, and probably first question should be Why am I asking these types of questions? The period between…
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What Does Chronic Illness Rob You Of?
It wasn’t long before I was thinking about how things had changed and how that upset me so much. What else was Crohn’s disease going to take from me? I wrote this the day after my first relationship since my diagnosis with Crohn’s disease broke down. I wasn’t at all shocked but it did stun me. I had to change. I had changed. But I was fed up and feeling…