Polyp in 20 year old - crohns x 7 years

[BoyMama2000]

Hi Everyone,

A nervous mom here...just got back from scope and overall Crohn's in pretty good control with only mild inflammation in proximal ascending colon and moderate inflammation 15cm proximal to anus (going to ask about a suppository for this area) so it appears increasing Stelara to every 4 weeks is working. Last scope in February was a lot worse.

HOWEVER, the found a 7mm semi-sessile polyp approximately 10cm distal to the cecum. It was fully removed and biopsy was also taken of mucosa at polyp base and it that appeared normal on scope.

Biopsy results in 5-7 days.

Does this mean he is already at risk for cancer at age 20? I really wasn't expecting to worry about that so young. What does "semi-sessile" mean...?semi-flat? I know we need to wait for results but wondering if anyone else has had these findings, especially when so young.

Thanks as always for your experience, guidance and time!

Son dx at age 13 - only terminal ileum at that time
was on pentasa, then methotrexate
Crohn's spread around age 16 througout colon and rectum
Went on Stelara at 18 - helped but then flared - escalated to every 4 weeks which leads us to today.
Also did one round of Uceris when escalating Stelara which gave him normal FCP (21)....last FCP (off Uceris for 8 weeks) was 87....not sure what it would be today but likely most of this was from rectal inflammation.

Thanks again.

 

[Cross-stitch gal]

I'm sorry to hear of the scare you're going through. It's one nobody ever wants to hear. Yes, it does sound like the polyp is precancerous but it's possible they may have cut it out. Your best bet will be to have a talk with your sons' GI. Here is the info I found to help me explain this much. Sending you and your family a whole lot of hugs and support. Please keep us updated.

https://www.healthline.com/health/sessile-polyp#treatment

 

[BoyMama2000]

Thanks Cross-Stitch Gal,

I am curious why you think the polyp is pre-cancerous before the biopsy results? Is it because of it's shape or simply that most in people with Crohn's is pre-cancerous?

We will speak to GI after the biopsy gets back and asked for a sooner appointment than February. We are wondering if adding a suppository is a good idea or if we should change from Stelara to something else.

I see you take suppositories....how do they work for you and when do you take them?

Thanks again

 

[Cross-stitch gal]

No problem!

I'm afraid I don't know for sure, other than what I saw from the website above that I included. And, we won't know for sure until the results get back whether it's precancerous or not. For me, it's just a guess.

Yes, I do take suppositories as needed and they do work when I need them. Mostly I use them if I'm getting blood from the rear regularly. I have a lot of stress in my life right now, so at the moment I tend to get about as much blood coming as I do stool/diarrhea. During this time, is a good time for me to use them.

But, when I'm not getting any blood at all are the times I don't need them at all. Each person is different, some can be like me and others might need them all the time. It just depends...

 

[BoyMama2000]

Do you use them nightly? We will certainly update you all on the biopsy results .

 

[Cross-stitch gal]

Yes, when I do use them I mainly use them before bed and that seems to work the best. But, there are times when they're needed twice a day. However, even though either dose isn't comfortable all we can do is our best with what we have.

Good luck on the results and I hope no matter what you're able to get treatment that will work for your son!

 

[BoyMama2000]

Thanks so much. Truly appreciate it.

 

[BoyMama2000]

Spoke to GI NP yesterday and this is the outcome:
1. Polyp was a sessile serrated adenoma - this is pre-cancerous and in the general population would warrant a follow up scope in 3-5 years. She was not too concerned about the polyp and said they felt it was likely not due to Crohns but I am sure we will never really know that.
Main Concern - active moderate inflammation in rectum with mild scarring/stenosis - want to get more aggressive with treatment:
1. Want to add in methotrexate injection (1st choice) or 6mp/Imuran (2nd choice). I used to due MTX injections when he was in high school but he does not want to learn to inject....they don't feel oral works as well.
2. Want him to begin 1-2 months of pred suppository while waiting for mtx or other med to kick in.
3. Sigmoidoscopy in 4-6 months (leaves for internship in late May so will do in April) to see if plan is working.

Questions: Do you all know about oral v injectable methotrexate? He would really prefer oral.

Thanks, wanted to give an update since I think it helps us all to learn when we see how things work out short and long term in threads.

 

[my little penguin]

Most GI prefer injection just due to absorption issues when it’s a main treatment by itself
That said Ds does not tolerate injectable mtx very well
He has been on oral mtx plus Stelara
It works well for him

His max dose before side effects are too bad is 20 mg

Good luck

 

[BoyMama2000]

Thanks for the feedback. Right now, I am not concerned about absorption because his scope looked really good except a very small patch of mild inflammation in ascending colon and moderate inflammation in rectum and he is also on Stelara.

When he was just on MTX years ago, we did see it not work as well when switching from injection to oral. He didn't have side effects on either except an occassional headache and he didn't take his folic acid....when he did he had no side effects. I am hopeful that now that he is older, he will take it better!

Thanks again, I am glad to hear oral and Stelara is working for your son! What are his side effects when over 20mg?

 

[Maya142]

I would push for injectable, especially since he has active Crohn's (pills may not be absorbed well). My daughters did better with the injection. My older daughter also found that side effects of MTX have lessened over time - initially, she was pretty much non-functional for the day after, with bad nausea, fatigue etc. But now she barely ever takes Zofran.

Considering he already has precancerous cells...I'd want to treat ASAP with the most effective treatment.

 

[BoyMama2000]

I know, that polyp has really freaked me out even though the NP and doctor were not so concerned and think it is may have nothing to do with Crohns....I am not so sure.

The polyp was in an area of his colon with no inflammation and normal muscosa but there was inflammation there in the past.

 

[BoyMama2000]

Maya, how often does your daughter have scopes now that she is older and being maintained? For his type of polyp, they would recommend every 3-5 years in the general population but will be doing more often right now anyway for him.

 

[Maya142]

She's been diagnosed almost 6 years and she's had 4 colonoscopies/endoscopies, plus several extra just upper endoscopies (she has GERD and Gastritis as well as Gastroparesis).

Her Crohn's is mild and we've never had a polyp thankfully. I'm not sure how often we will scope in the future - we will move to adult care soon.

Her pediatric GI had mentioned that after 8 years from dx, they do yearly scopes for kids to check for cancer. I questioned why so often was told because pediatric IBD patients with colonic involvement are more likely to get colon cancer.

She did say that they don't always scope yearly - sometimes it's every 2 years.

But we never talked about it after that - this is what she told us about 3-4 years ago and it's possible the recommendations have changed.

 

[BoyMama2000]

Thanks, Sean has only had crohns in his large intestine for 4 years and we saw this now. So glad his doc has been doing them to truly know how effective his meds are! He only had CD in last 2 inches of TI the first 3 years. Only symptom was growth failure on dx.

Crohns escalated to colon his junior year of high school and was poorly managed until we went to adult GI.

Perhaps polyp is something he would have had anyway or perhaps due to nflammation from CD. Either way, I am glad the area with the polyp had no inflammation. Hoping we can keep this in better control soon to lower the risk of complications including cancer and anal stenosis. Again, my brother had 3 polyps at 50 and 1 at 53 and that one made the doc want to repeat in 2 years so this could also be family genes. They don’t do much surveillance in CD unless more than 1/3 of colon is effected so she likely won’t need much.