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Colonoscopy dilemma

Hi everyone.

I’ve been in a flare from August, on 35mg of prednisone and mostly liquid diet but am still getting a fair bit of pain. I started Stelara on the 7th of a January and haven’t seen any results as such yet. My GI consultant wanted a MRI of my small bowel and urgent colonoscopy to assess my disease activity. (Fecal cal protectin came back before Christmas as being 173) but the pain
Level doesn’t correspond in my opinion.

The last time I had a colonoscopy the pain was excruciating, even with 2 x doses of sedation and gas and air. I explained this to my consultant but he wasn’t concerned. I however have been having nightmares about getting this one done next week, not to mention how it will effect me afterwards as I also had a bad reaction to the sedative the last time.

I was looking for ways to reduce the potential pain online and came across the possibility of a paediatric scope, which the hospital I’m booked into doesn’t offer. So I made an appointment to discuss the possibility with another consultant (primarily a colorectal surgeon) at another hospital who advised an anethetist for the procedure and explained the difficulties of using a paediatric scope. He also questioned the timing of the scope as he thought I should give Stelara more time to work before getting a scope. (N.B. My private health insurance will close my case next week which is why I am booked in so soon, otherwise I will have to wait 9 months for the procedure).

I now don’t know what to do, as I’m still in pain everyday and can’t eat anything really, but I’m not sure a colonoscopy right now is the best decision. I’m scared to question my normal consultant as I understand where he is coming from and I need answers too. Any advice appreciated.

my little penguin

Staff member
Stelara takes 6-8 months to be fully effective -not weeks
It also matters what dose your given
In the US the standard crohns dose
Is an iv infusion loading dose somewhere around 260 mg to 300 mg
I think
Then 90 mg every 4-8 weeks by injection
Ds started Stelara in Aug 2017
With loading dose then 90 mg every 8 weeks
Scoped in feb 2018 mild inflammation
So increased to every 4 weeks at 90 mg
That still took 3 more months to be effective

Are you using full een (exclusive enteral nutrition)?
Formula only (modulen ) no solid food ?

Given you are in so much pain and still in a high dose of prednisone for months your Gi needs to see what is going on inside .
Then later rescope to figure out if Stelara fixed it
Hi mlp. Thanks for your response. My dosage of Stelara is every 8 weeks, so my first injection won’t be until the start of March. Not sure what my infusion dose was but I’m only 42kg if that means anything. I’ve enquired with the hospital to see if the consultant would be happy for me to have heavier sedation, so I won’t find out until tomorrow. I’m hoping he will though otherwise I don’t know how I’ll get through it. I’ve been on modulen diet about 80/20, only having slices of white bread and some mash potatoes, but recently even that is causing me some pain. My dietitian was content for me to try the lofflex alongside the modulen as I have already done the 6-8 week liquid only diet several times in the past year and for longer periods than that.
You mentioned pain after eating bread. Have you been checked for gluten intolerance? This is sometimes seen in conjunction with IBD and can manifest itself as abdominal pain shortly after eating.

As for the sedation, ask what was given you last time and if they can administer a different anesthetic this time. I was told that I was fighting even under anesthesia (I have no recollection of it), so from now on they give me something more powerful.
Hi mountaineer1. I asked for heavier sedation last week, which thankfully they are allowing. I have been tested for celiac disease and it was negative. I seem to be ok with bread from time to time, it’s strange. I’m a bit of a puzzle it seems...thanks for your reply.

my little penguin

Staff member
Some need 100% Een (exclusive enteral nutrition)
A few can tolerate 90/10 or 80/20 AFTER they have reduced the inflammation (no pain etc..)
Others need elemental formula (amino acid based)
Modulen is semi elemental (similar to peptamen in the US)

Ds has to 100% een for the full 9 weeks can not tolerate the 80/20
He also started on semi elemental and later had to switch to neocate jr (elemental formula )
In the UK I believe there is neocate splash which is elemental /vionex??
The strange thing about gluten intolerance is you can test negative for celiac and still be intolerant. I'm convinced the tests aren't where they need to be yet. My wife has gluten intolerance, but has been tested twice for celiac. It came back negative both times.

As an experiment, try substituting something else light that doesn't contain wheat for the bread for a couple of weeks and see if the same thing still happens after you eat something.
Hi mlp. I wasn’t aware that modulen was semi elemental. I’ll maybe ask with my dietician about neonate splash to see if it’s available on the nhs.

Mountaineer, I’ll give that a go too as I had heard of a gluten sensitivity rather than celiac disease. Thanks to you both for your suggestions.

Lady Organic

Staff member
Did you have your scope? Dont worry, it happens sometimes the sedation doesnt work and we have lots of pain, but this happens not often. It happened to me about 2 times out of 6 full colonoscopies. 4 scopes I got were really easy, sometimes I fell asleep, other completly awake and no pain.
Hi lady organic, it turns out my pain was lessening a bit over the past week or so, so I discussed this with my GI and he informed me that my small bowel mri was normal and that my fecal cal protectin was 43! Needless to say he thought there was no point in doing the scope. He said it was the prednisolone possibly had put me into remission or the Stelara was starting to work. I now have to taper the steroids, but was so glad to not have to go through the scope.