A little confused

[Am1025]

So me and hubs saw his new GI today in person (we've seen his NP and talked to him over email etc and he's ordered all the tests) and to be honest I feel a little confused and nervous to a degree. First off he said he does have a few strictures and they're fibrotic not just inflammation (old GI said they were inflammation, fibrotic can't be stretched and he stretched 2) he also said he wants him off 6mp in the next couple weeks (old GI never wanted him off, which I didn't agree with and NP wanted him on it for 6 months to allow entyvio to take full effect) He's only had 1 loading dose of Entyvio for reference. He also said he doesn't plan on another CT or scope unless he has symptoms (hubs has been 100% symptom free even though disease is active) and old doc and NP said a CT in 6 months to see what's happening with the inflammation. He said he cant eat what he wants as long as it doesn't cause pain, we've been very careful with raw fruits and veggies, nuts etc. due to the stricture.

He was nice and answered all my questions, he said Entyvio has a great track record for small bowel crohns (hubs is only in TI) and he's confident it will work, but told us he will prob need surgery at some point, assured us if he does the surgery won't be a huge deal and have no effect on his life quality etc. So I just feel a little confused about the strictures actually being fibrotic, a follow up scan to make sure things aren't worse, stopping 6mp before entivyo works and now the thought of surgery worries me. He did say he's had patients with strictures go years without any issue, he said he has one he's had for 20 years that just now needs surgery. Idk I just went in feeling good snd left feeling...confused and a little worried? He's very highly regarded, he teaches at a primarily medical university so I trust him but. Idk. I guess it's just my nerves.

 

[my little penguin]

So what you end up doing in six months , 12 months etc.. is always just a guess .
Since everyone responds differently.
If in 6 -12 months your DH had symptoms /issues or bloodwork /fecal cal that us making you uncomfortable then you ask at that point for imaging .
Some docs don’t like to “do” imaging at a set point since it may take your husband 8 or 10 months to fully respond
Or he may be fine in 3 months

Strictures - fibrotic vs inflammation
Based on just imaging - it can go either way
They NEVER know until they actually go in for surgery
Some avoid for years but form fistulas between /around the strictures
If it comes to time for surgery - just make sure it’s colorectal surgeon and get a second opinion from another colorectal surgeon
I do know of children (teens ) who had small bowel resections due to structures other than recovery - no life changing events - they were fine

most Gi or specialists tend to have different opinions path than the np
That is why we like to try to see the actual Gi since they do the driving of the ship anyways
Better the know the full why as much as possible

good luck with entyvio

 

[Am1025]

So what you end up doing in six months , 12 months etc.. is always just a guess .
Since everyone responds differently.
If in 6 -12 months your DH had symptoms /issues or bloodwork /fecal cal that us making you uncomfortable then you ask at that point for imaging .
Some docs don’t like to “do” imaging at a set point since it may take your husband 8 or 10 months to fully respond
Or he may be fine in 3 months

Strictures - fibrotic vs inflammation
Based on just imaging - it can go either way
They NEVER know until they actually go in for surgery
Some avoid for years but form fistulas between /around the strictures
If it comes to time for surgery - just make sure it’s colorectal surgeon and get a second opinion from another colorectal surgeon
I do know of children (teens ) who had small bowel resections due to structures other than recovery - no life changing events - they were fine

most Gi or specialists tend to have different opinions path than the np
That is why we like to try to see the actual Gi since they do the driving of the ship anyways
Better the know the full why as much as possible

good luck with entyvio

Ok thanks! I appreciate your response! Do you know of people who've lived with strictures for some time without issues? He told me it's very possible but also said "most have about 3 surgeries in their lifetime with Crohns". He also said hes been using Entivyo for small bowel crohns for years and has had great success. So much so he didn't want to talk about a "if this doesn't work" med option. (I'm a planner lol) so I hope he's right. I felt as if he laid out worse case scenarios, then followed it up with...over 90% of people don't have these problems. So I felt very torn with my feelings after.

And one last thing, If the meds work and they repeat a scan and inflammation is way down, can we assume the strictures weren't fibrotic? His old GI felt that way. And do you know if coming off 6mp cold turkey has given others issues? He's double checking in the morning they don't want him to wean off. Thanks again! You're always so helpful can I take you with me next time

 

[my little penguin]

My kiddo was on 6-mp for 8 months
Liver enzymes went through the roof
Stopped it cold Turkey no wean
No issues
Had to use pred while we waited for methotrexate to kick in

I don’t know adults rates on surgery
But for kids prior to biologics being introduced
It was 75% would have surgery within 5years of dx
That number went down to 30-40% I think last time I looked
My kiddo has had this 11 years - no strictures
But he has juvenile arthritis which is far worse than his crohns

I only know of one adult who had strictures for over 20 years (left them fester -refused surgery-was very proud he didn’t have it ) but since there were so many strictures-then many fistulas formed as work around in his small intestine- so now there wouldn’t be any healthy small bowel left if he had all the mess removed

if he needs surgery - get it(after second opinion)
Sometimes then the burden is less on the system and the meds can work better

entyvio may work wonders
I only know pediatric cases and they tend to follow different rules than adults
Ds was dx so young at 7 he is considered very early onset inflammatory bowel disease (veo ibd )
Which is such a small group -they have another set of rules on what they respond to med wise
-they don’t share that memo with the docs though

 

[my little penguin]

Oh and some Gi are -talk through their thoughts
They literally talk through the thought process of how they decided on xyz test or med etc
Others like to lay out all the risks
Some do virtually no talking until they are 100% sure on what they want to do and then it’s not a discussion
Just do xyz
Every doc is different
Next visit will be better
You will see the pattern

 

[Am1025]

Oh and some Gi are -talk through their thoughts
They literally talk through the thought process of how they decided on xyz test or med etc
Others like to lay out all the risks
Some do virtually no talking until they are 100% sure on what they want to do and then it’s not a discussion
Just do xyz
Every doc is different
Next visit will be better
You will see the pattern

Thanks so much!! He did say if he needed surgery it would be such a small area it wouldn't impact his life, but no need to take it unless problems occur. My husband Aunt also has Crohns and had a major operation with tons of strictures and a lot of complications so that always sits in my mind. But..she didn't know she had Crohns (issues for years with no explanation) and has been fine on Humria for 17 years since. And I know a lot has changed in the last decade or so. One day at a time is what I try tell myself, I could get hit by a bus tmrw and husband never need surgery (bleak I know haha!) I'll report back when we get fecal calprotectin tests back. old GI never EVER did that test he also hasn't done sed rate in 4 years. Thanks! If anything it's just nice to talk to ppl that live this.