My journey battling intestinal strictures (narrowings)

When you're living with inflammatory bowel disease (IBD), it's crazy how long you accept things as your normal, or new normal, so I've probably been experiencing 'changes' for possibly over 3 years.

These changes, it turns out, are due to intestinal strictures (narrowings). We can’t be sure whether I have them because of my Crohn’s disease or from previous surgeries. 

I saw my consultant in London in August 2021. I was referred to a dietitian for advice on what would be best for me health-wise, and that I can also tolerate with my strictures (they can be very painful). I had my bile acid malabsorption (BAM) medication increased and had an MRI planned to look at my strictures to see if dilation was a possibility. I was also referred to a hospital in Manchester, where we'd moved to. 

Three strictures were picked up on the MRI scan I had around the end of 2021.

Dilation procedure

I knew surgery was on the table, but my consultant, now in Manchester, thought trying to dilate the strictures was worth a go before heading down that route. 

The first dilation procedure was tried on March 3rd 2022. I was nervous about going into the hospital because my medications had deemed me clinically vulnerable throughout COVID-19. 

That dilation procedure failed, even after a totally liquid diet (ensure) for a fortnight before and taking the bowel prep as directed. They were unable to get the scope to the affected areas because I was still full of poo! I was really frustrated and upset by this. I’d started preparing for the procedure in December, with a 50/50 liquid diet (with only low residue solid foods)! All of that prep for nothing. The following dilation on July 29th 2022 also failed.

I then needed extended bowel prep before the procedure and to stop my medication for BAM. I was very grumpy (ask my friends on the IBDSuperHeroes chat)! It was only after the extended bowel prep that they were able to do the first dilation, which took place on November 17th 2022. After the procedure, I was told they'd opened the bowel to about 12mm. I was hopeful that I could enjoy Christmas mince pies without the "normal" agony that follows!

Very disappointingly, the relief from the dilation probably only lasted about a week, if that!

The consultant was keen to do another dilation. I wasn't happy about having another procedure, mainly because of the bowel prep! The actual procedure, I can tolerate as I'm asleep for it - not actually general anaesthetic (GA) but heavily sedated. I agreed to another procedure as the surgical team had already stated it could take a few attempts to widen the bowel and get a good result. It was agreed that I would be referred to colorectal surgery to talk about a resection, too. That last dilation took place on January 20th 2023.

I wanted to talk surgery

I’d decided I was ready for surgery right at the very beginning, even before they'd mentioned a dilation procedure! I've had a couple of resection surgeries in the past and I know what they entail, so was up for surgery initially but it was the surgical team that suggested the dilation procedure and I said, if you think it'll work, and we can avoid surgery, let's give it a go.

I knew that resection surgery would/should work, as it has before. Obviously, not super long term because I’m here again, but long enough to have some decent quality of life. Yes, I was a bit younger, but I was always very ill when they were performed, this time I'm not as unwell, if that makes sense?

I saw the surgeon on March 17th 2023 who confirmed I was on the list for surgery. It's not known yet whether I will wake up with a stoma or not. They won't know until they are poking around in there. It's a worry, but I know I have a great community of people I can call on for advice and support. 

I was also sent for another MRI scan, so they have an up-to-date view of what they’re dealing with. I had that on May 12th 2023.

The surgeon’s secretary called me with the date of August 29^th 2023, and I accepted without giving it a second thought! Then I realised that Kelly will be very busy with her work as she has people on holiday when it's happening, but all she said was that she could work from home once I'm home after surgery. She's a keeper!

How I’m feeling about my upcoming surgery

I'd be lying if I said I wasn't worried or anxious as it's a major surgery with GA (general anaesthetic) and you're at risk just by having a GA. I'm a little worried about my recovery more than anything, I'm no spring chicken anymore!

But I’m also excited, happy and relieved to know that surgery is now going ahead and I can start getting back to a fuller life, like I was having before someone mentioned COVID and hopefully I can enjoy a mince pie with friends this Christmas!