Saturday, 18 October 2014

Health Update: Not Defeated Yet!

I don’t usually use this blog for health updates, but this seemed the simplest, quickest way to tell the many kind friends and supporters who’ve asked about where things are up to. I’ll try and keep it brief!

On Friday 17th October I went to Manchester Royal Infirmary for an attempt to dilate a narrowed section of my ileum. As many of you will know I have Crohn’s and that led to the removal of my large intestine/colon in 2008 and the formation of a permanent ileostomy. Ongoing active Crohn’s has led to further damage in my remaining bowel, including a 15cm long severe stricture about 80cm proximal to my ileostomy. The stricture is c. 5mm wide which leads to pain and discomfort. My hope was that by stretching the bowel some relief might be had and I could get back to a more normal approach to eating. (Running alongside this plan has been an increase in the drug regimes that I’m on in the hope that my active Crohn’s Disease would be brought under control.)

I went to hospital with what I would call 'measured hope'. My consultant, Dr Rob Willerts is a regionally and nationally respected specialist and the one chap in the North West who combines the endoscopic skills and, more importantly, judgment to decide 'to dilate or not dilate' a stricture. If anyone was going to deal with the challenges, well, he’s the man. But I also knew that this procedure was exploratory – until the scope was inside the bowel, no one could be sure about the precise state of the stricture/s. Crucially, a balloon dilatation would only happen if they comprised scar tissue rather than active, ulcerating Crohn’s.

Alas, things have not gone quite as I’d hoped. When Rob and his team got to the stricture it was clear that the narrowing is full of active Crohn’s. As he explained afterwards, as soon as the scope touched the stricture it bled. That, however, is not the worst of it.

Rob did manage to get the scope through the stricture to take a look further up. Sadly there is further ulceration behind the stricture and it looks nasty, circumferential and active. At this point the team decided to end the procedure. It was not realistic to dilate the multiple problems.

In addition, there may be some Upper G.I. issues – apparently my scans show the possibility of a narrowing in the duodenal area. This is, of course, a wee bit worrying.

Where does this leave me? Well, it is a bit deflating. Despite being on high doses of advanced treatments for Crohn’s the disease has not been brought under control. It’s a reminder that my Crohn’s is of a complex variety.

I will be sent back to my team at Salford Royal and the hope is that the increase in some of my drugs will – over time – bring the active disease under control. There is a new Crohn’s drug Vedolizumab now coming on-line and that might be worth exploring. Obviously, drug treatments bring with them constant issues about side-effects, but I’ve been dealing with these for years and I’ve not been defeated yet! There is, of course, the shadow of surgery as well, but – given the fact that my previous, extensive adventures under the knife make that the very last resort – that will need to be considered with a calm and measured mind.

Those of you who know me best know that I am not easily deflated or knocked-back. I continue to try to be sensible with my energies and resources and, more often than not, end up acting like an idiot. I shall attempt to process this new info with sense and prayerful discernment. God, in my experience, is incredibly gracious and good, even in the midst of (quite literally) shit. I remain hopeful of a way ahead that is life-giving and flourishing.

I remain so energized by the opportunities ministry, the arts and, well, life throw my way. I actually believe that God is often most creative in the midst of the most troubling challenges life can throw at us. Until such time as I cannot, I shall just keep on keeping on. And in the meantime 'good news' will emerge, good news that is not predicated on some childish and easy myth of what 'good health' looks like. 

Thank you for all your love, good vibes/prayers/crossed fingers/etc and support. It means so much. You’re wonderful. xx


  1. Rachel
    You are an inspiration.
    I'm so sorry that the appointment was much less than you hoped, but to hear your response has reminded me that even with ill health we are called and supported by God. Thank you for sharing

  2. Dear Rachel. It was so good to meet you at the poetry event in the Cathedral. I was impressed by you and I knew immediately that I liked you although we had very little conversation. I had no idea about the health issues you were dealing with until now. I'm so sorry your latest news is not what you'd hoped for. I am sure you are right when you say that the most creative outcomes can result from the most troubling times. Someone said (I forget who) that all poetry is prayer. For me this rings true. Although brought up in the church (Dad was first a missionary and then a minister) I left it behind many years ago and will not return. But poetry, for me, makes everything all right. Reading in the Cathedral was a high point in my life. I'd like you as a Facebook Friend but not sure how. Thinking of you, positively and with gratitude.

  3. Frances - thank you for your wonderful words. Do feel free to add me on FB.

  4. Thanks for the post, hope so that this will help others to know about this deadly disease. Hope so that the no of patients will reduce soon. The Ostomates may use the Ostomy Lingerie so that they can live their life with great ease.