As I’ve had quite a
busy month with managing my Crohn’s disease in terms of tests and consultations
I thought this blog could focus on a month in the life of
March 2nd
March 2nd
MRI of the small bowel
This appointment had been cancelled and rescheduled twice, I find it incredibly frustrating when you get an appointment letter through and then the following week that appointment has been cancelled and rescheduled, unfortunately it’s all part and parcel of dealing with this disease and working within the system.
I don’t have any issues having an MRI as I’ve had many over the years, I’m not claustrophobic or needle phobic for that matter, which considering the amount of times I have blood drawn or had cannulas fitted this is something I’m grateful for.
If you have never had an MRI there is generally nothing to concern yourself with, you will be asked not to eat at least eight hours before the procedure, it’s a painless procedure, apart from the cannula that’s fitted. The most uncomfortable part of the MRI is the 2 Litres of liquid called Mannitol which you have to consume before the procedure; it’s a sugar-based solution that has a mild laxative effect. It’s not a particularly bad taste; it’s just not particularly nice, as it taste like cheap squash. After you have finished the 2 litres of liquid, you’re then asked to get dressed into one of the medical gowns they provide - you know the gowns I’m talking about right? They have no backs to them, which for me 27 years later still feels very strange.
After you have had your Mannitol solution you will be asked to lie on the MRI table for approximately 20 minutes. They then take a series of pictures, with you holding your breath for each set. During the scan you will be required to have an injection in your arm of Buscopan (bowel relaxant) and MRI dye.
Once the MRI is complete you are generally free to leave. I have an appointment at the end of the month with my GI consultant so hopefully he will have the results of the MRI. On the day of the MRI I used the IBDoc with a result of 38ug/g, so it will be interesting to see if the results of the MRI correlate with the IBDoc result.
March 4th
Appointment with NHS dietician.
My last appointment with an NHS dietician was over 20 years ago and frankly they were still in the dark ages when it came to understanding the relationship between food and Crohn’s disease. So I was pleasantly surprised when the dietician began to discuss the different diet options; we discussed my on going challenges with introducing new foods, the dietician explained in her experience this is quite a common theme with patients who are on limited restricted diets. We discussed the LOFFLEX diet as well as the low FODMAPS diet. The dietician suggested that I re-introduce food one at a time and build this up each day in order to avoid overwhelming my bowel and that considering I had avoided food for so many years having a structure to reintroducing should also increase my confidence when trying new foods. She advised each food be reintroduced over three days starting with small portions and doubling the portion size each day; if I had an increase in symptoms I would then stop that particular food let my bowels rest for a couple of days and then start on a new food again. I have a follow up appointment with the dietician in eight weeks time to discuss my progress.
March 6th
Hydrogen breath test
Back to the hospital again, this time it was for a hydrogen breath test. A hydrogen breath test provides information about the digestion of certain sugars or carbohydrates and to confirm the presence of small intestinal bacterial overgrowth (SIBO). The last time I had a hydrogen breath test was over seven years ago and I tested positive almost instantly.
This time the technology has changed yet again, I’m not hooked up to a machine, and I’m simply breathing into a small handheld device. Basically you have to breathe into this device every 15 minute over the course of an hour, if there is a presence of hydrogen in the small-bowel it is instantly detected. You get the results straight away and luckily this time it appears I don’t have SIBO.
If you find yourself bloated on a daily basis or have discomfort in the stomach I’d recommend asking your GI for the hydrogen breath test, follow the link below for full description.
http://www.srft.nhs.uk/EasysiteWeb/getresource.axd?AssetID=83997&type=full&servicetype=Inline
March 8th
March 8th
Pre Vedolizumab bloods.
Every four weeks I have an infusion of Vedolizumab. Before I can have the infusion I have to go to the hospital to have bloods drawn to check that I have no infections, I also have my weight and blood pressure checked.
March 11th
Vedolizumab infusion.
Back to the hospital yet again, this time it’s for my monthly Vedolizumab infusion. I know all the nurses by name on the ward as I’ve been having these in infusions for the last two years and it’s always a great opportunity to speak with other patients that are having their monthly infusions. Once the nurse fits the cannula they then attach the back to Vedolizumab via a drip. It only takes half an hour for my infusions to be finished and I don’t generally wait around in the ward afterward. I do feel quite fatigued after the Vedolizumab infusion, which can carry on into the next day, so I have to factor this in when planning work, social activities.
March 28th
GI appointment.
I still find myself getting quite anxious when it comes to my GI appointments I’m not quite sure why as the relationship I have with my GI is good.
First up, we discussed the results of the MRI, it appears that the 15 cm of stricturing I have had over the last ten years is now clear and I have little to no inflammation, this correlates with the IBDoc results. This is fantastic news, not only is my CD under control, I have no stricturing or inflammation present which validates the data from IBDoc over the last eighteen months.
Next we discussed the results of the hydrogen breath test which came back negative, again another great result and no further action is required.
Finally, we discussed the levels of Vedolizumab in my body, apparently this test is brand-new. It’s function is to indicate whether the levels of Vedolizumab are sufficient in the patient, it appears I have good levels of Vedolizumab, which again ties in with the MRI and IBDoc results.
In summary this month
has been quite busy in terms of activity, juggling work and home life can be a
challenge when faced with so many appointments. However, I am lucky that the
results of the tests are positive as I continue to battle CD.
Hope you enjoyed the blog; feel free to ask any questions or leave comments.
Hope you enjoyed the blog; feel free to ask any questions or leave comments.
Follow me on Twitter @ibdocMe
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