Surveillance Colonoscopy with Crohns Colitis

[BoyMama2000]

Hi Everyone,

My son (age 21) had a scope today (6th in 4 years). He was dx with Crohns at age 13 and it was just in terminal ileum at that time. At some point in late high school it likely went to colon. He was put in Stelara his freshman year of college at age 18. Scopes since that time have varied from only some patches of inflammation to moderate and severe in locations. The two most difficult spots appear to be proximal 5cm of ascending colon, terminal ileum and rectum will moderate inflammation today. The rest looked normal. We may need to move to something else from Stelara since he is already getting it every 4 weeks.

Last year they only did biopsies in one area of inflammation and removed a sessile serrated ademoma. We were told there was no dysplasia on either biopsy at that time. This year the "indications" for the scope were "High Risk Colon Cancer Surveillance". Is this something that they write after active disease for 8 years or is there a bigger reason to be concerned. They did 4 biopsies every 10cm through the entire colon. Is that common or are they concerned for a bigger reason?

We were origianlly scheduled to meet with his doctor next week but he is not going to be there now so we don't meet until the 20th. We are going to email him but wanted to know if this is just something that is always said or something to ask and be concerned about.

Thanks

 

[my little penguin]

Patients with long-standing inflammatory bowel disease (IBD) involving at least 1/3 of the colon are at increased risk for developing colorectal cancer (CRC). Traditional CRC screening and surveillance for these patients at increased risk with ulcerative colitis (UC) and Crohn’s colitis included random four quadrant biopsies every 10 cm. The 2015 SCENIC guidelines from the American Gastroenterological Association (AGA) and American Society for Gastrointestinal Endoscopy provided updated recommendations on how to screen for CRC[1]. This review will focus on updates for CRC screening in patients with IBD since the publication of the 2015 SCENIC guidelines, with an emphasis on high-definition (HD) scopes, dye and virtual chromoendoscopy (CE), and random versus targeted biopsies.

From

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6700690/
So that would have been the old way
Newer ways are available now as standard per the article

sorry Stelara didn’t work
He hasn’t tried remicade yet correct ??

 

[my little penguin]

Tagging @crohnsinct

 

[BoyMama2000]

From

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6700690/
So that would have been the old way
Newer ways are available now as standard per the article

sorry Stelara didn’t work
He hasn’t tried remicade yet correct ??

Stelara was his first biologic. We are not sure what they will recommend next. He will be starting his first job in June (senior in college now) as an investment banker working very long hours....this has been his dream since high school. He is thinking he would rather Humira so he doesn't have to leave for infusions...what are your thoughts? Stelara did work for a while but not 100%...we did ask if they ever give it closer than every 4 weeks but doubt it would be paid for or if that is something to try.

His scope was HD with white light but no chromoendoscopy. We will ask about that for the future. There were times more than 1/3 of colon was affected but most often it was probably a bit less than that. This time all was normal except rectum, 5cm of proximal ascending colon, cecum and 5 cm of terminal ileum. They got 20" into ileum and the rest looked normal.

Thanks for your reply.

 

[my little penguin]

Remicade has more flexibility with dosing
Infusions for the most part can be done at home through home health - possible on Saturday?
But is only once every 6-8 weeks and bloodwork is done at the same time

humira is every 2 weeks
But dose is set only frequency can be increased
Every 14 days , 10 days , 7 days or 5 days .

max dose of Stelara that I am aware of is every 4 weeks

Ds reacted to remicade after 8 months (he is an allergic kiddo so...)
Humira worked well - clean scopes for 5 plus years
Just had to keep increasing frequency each year till there wasn’t anywhere to go

good luck

 

[Scipio]

Last year they only did biopsies in one area of inflammation and removed a sessile serrated ademoma. We were told there was no dysplasia on either biopsy at that time. This year the "indications" for the scope were "High Risk Colon Cancer Surveillance". Is this something that they write after active disease for 8 years or is there a bigger reason to be concerned. They did 4 biopsies every 10cm through the entire colon. Is that common or are they concerned for a bigger reason?

A sessile serrated adenoma is considered to be a pre-cancerous condition requiring surveillance follow-up colonoscopies. How often these colonoscopies need to be done is a point of debate. This type of lesion by itself is not considered cancerous, but your doc is doing the right thing to follow-up. So I don't know whether this is a "bigger" reason than Crohn's to do the colonoscopies, but it certainly is an additional reason.

 

[BoyMama2000]

Remicade has more flexibility with dosing
Infusions for the most part can be done at home through home health - possible on Saturday?
But is only once every 6-8 weeks and bloodwork is done at the same time

humira is every 2 weeks
But dose is set only frequency can be increased
Every 14 days , 10 days , 7 days or 5 days .

max dose of Stelara that I am aware of is every 4 weeks

Ds reacted to remicade after 8 months (he is an allergic kiddo so...)
Humira worked well - clean scopes for 5 plus years
Just had to keep increasing frequency each year till there wasn’t anywhere to go

good luck

Thanks, I am guessing he will need more frequent dosing with humira and remicade given his past with biologics. His job this summer (he did an internship where he will be working) had him working pretty frequently on Saturdays and many Sundays but he may be able to schedule infusions. I hear dosing is a good reason to do remicade but if Humira will work ust as well, I am guessing he will prefer that for the start of his career. That is great....5 years of clean scopes! I will let you know what he decides. I really want this in total control so we don't have to worry as much about dysplasia and cancer....it really scares me.

 

[BoyMama2000]

A sessile serrated adenoma is considered to be a pre-cancerous condition requiring surveillance follow-up colonoscopies. How often these colonoscopies need to be done is a point of debate. This type of lesion by itself is not considered cancerous, but your doc is doing the right thing to follow-up. So I don't know whether this is a "bigger" reason than Crohn's to do the colonoscopies, but it certainly is an additional reason.

Thanks, we did learn that is a precancerous type of polyp even though his was small(7mm) and with no dysplasia. We are glad he will get frequent scopes anyway because of Crohns. They said it was sporadic and not related to Crohns. What is interesting is that his dad had what we now know is a SSA/P but was told it was a large hyperplastic polyp back in 1996 (12mm). Thankfully it was removed but at that time he was told his next scope didn't need to be for 10 more years. His dad was dx with UC at age 22 (hospitalized for 2 weeks) and was on sulfasalazine for 2 years and then stopped and has been in remission every since...he is 54. He has had scopes every 10 years with no precancerous polyps or signs of UC. Now he will go every 5 years given our son's SSA/P. It gives me some comfort to learn that studies have shown that SSA/P's are seen in young people and generally do not progress until over age 60. I just get concerned that we haven't done enough to control the inflammation and fear dyplasia and him having to live with an ostomy someday....I am a worrier!

 

[crohnsinct]

Sorry, I didn't get the page on Monday.

Sounds like you have a better understanding now of what is going on.

True that U.C. and Crohn's Colitis patients are at a higher risk of colon and rectal cancer if inflammation is not well controlled. However, the one benefit of being dx'd with these diseases is that they are monitored closely and this means more frequent scopes and fecal calprotectin screening and adequate treatment. More frequent scopes and screening also means that if there are any issues they will be caught much earlier on than the general population. Catching things early also means that even if they are cancerous the result would likely be a surgery to remove only the cancerous portion of the colon. Colon cancer results in a complete colectomy usually only in cases where you had no idea you had the cancer and it grew and spread to a point where colectomy is the only choice. We have had it go both ways in our family. Severe cancer in an otherwise very healthy individual resulting in colectomy and early cancer found in a 23 year old IBD patient, actually found during the colonoscopy to dx IBD. The second situation was much easier to deal with although it was two dx's at once.

With regard to choice of med, I find it interesting to hear that the docs chose Stelara as a first biologic as you have your best shot at responding to your first biologic and Stelara is typically not as successful with colonic disease as say Humira and Remicade. Not disagreeing with their choice, just interested as my older daughter is running out of options and Stelara is all we have left.

My daughters both used Remicade and we really liked it due to the flexibility. You can change dose and schedule a lot. Both daughters had home infusions and the nurses were VERY flexible with regard to days of the week and time. One of the nurses says she even goes to a patient's place of business and gives him his infusion in his car in the parking lot (not sure I would go for that one)!

Incidentally, my daughter has met with a surgeon about total colectomy and an ileostomy due to her severe and refractory Crohn's disease. We are not there yet, but the surgeon and GI's have told us that it is not something that we should avoid at all costs or view as a last resort but rather another treatment option. Used at the right time, they are life changing but also life giving. I am just throwing this out there because a portion of IBD patients will end up with an ostomy at some point in time and I think we have a way to go to remove the stigma and fear.

 

[BoyMama2000]

Thanks for your information. The doctor said in an email today that he is not planning to change Stelara but wants to discuss in person as there are a lot of nuances to consider. It is controlling most but I would prefer to move to Humira to see if that does a complete job. He has started canasa suppositories but that won’t help the proximal disease. We will see how it goes and will hope there is no dysplasia in those biopsies. If he needs an ostomy someday, I would much rather he be older and settled but as you said, it is always an option although better for UC than Crohns from what I understand. I will let you all know the biopsy results and the discussion we have Dec 20 with his doctor who is the director of the IBD clinic at the University of Colorado. We started with Stelara as it had less side effects as he was just starting college. His disease was only in his terminal ileum from 13-17.

 

[my little penguin]

Crohns dx in children is known to spread and change especially over the first 10 years
Most kids are in a small location as inflammatory crohns at dx but during a 10 year span it spreads and can change to stricturing or fistulalizing as well .

good luck on the Gi visit since the other issue is few Gi are willing to change biologics even if some inflammation is found on scopes

 

[crohnsinct]

Ah. Only TI disease at diagnosis explains the Stelara choice.

We are living what MLP explains. My daughter was on Remicade for 7 years before we finally switched. It took a year to get it to work fully as her disease burden was just too severe. It was working but only about 70%. We were given the option of adding immunosuppressants but chose to do a round of EEN. EEN got her to remission and then Remicade was able to hold the disease for about a year as monotherapy. At that point, we added MTX and she got another 2 years. At about the 4 year mark, she was back at 70% and for another 3 years we played with dose and frequency and other meds trying to get her to 100%. When the GI finally made the decision to switch, the new drug was so slow acting she had to be on steroids for a long time and got very sick. As it was explained to us, GI's try everything before changing because your first biologic has the best shot at success AND the other biologics have a longer onset of action. But in your case, you would be moving from a drug that takes longer to one that works faster (not fast though) so at least you have that going for you.

Would he do a round if EEN or add methotrexate? Maybe not MTX given he wants to keep side effects and risks at a minimum.

 

[BoyMama2000]

It is good to know their hesitation. Uceris has worked very well for him so if he did change to a new biologic, I imagine he would go on Uceris for 8 weeks as a bridge. Stelara is working right now for 90%+ of his GI tract and rectum can be treated with suppositories but I really wonder if an anti-TNF would do a better job. He was on MTX and had a lot of headaches and would not add it last year when they suggested it. Maybe he would now that he can give himself injections. I doubt he would do enteral at this point. He is 21, about to graduate from college and start his dream career that is very demanding as an investment banker. I lean towards changing while he still lives in state and has more free time. We can’t add thiopurines as they make his platelets tank. He tried that after his last scope a year ago. They got scary low in just 2 weeks.
If you have any other thoughts on additional meds, I’d love to hear them.

 

[Scipio]

If you can't do thiopurines I would definitely consider Stelara over Remicade or Humira. The drug companies appear to be getting better at creating less immunogenic biologics, and the newer ones such as Stelara and Entyvio have shown to be less likely to induce anti-drug antibodies that cause the patient to lose response to the drug. They are often used in monotherapy - without thiopurines or MTX.

 

[BoyMama2000]

He is already on Stelara and it appears to be helping but not 100% and may be losing some effectiveness. However it appears his doc wants to discuss keeping him on Stelara and maybe doing something else. We will see. I wonder if cycling Uceris every 3 months for 8 weeks would be a good thing for him. He tolerates it will and he has very few side effects on it. Interesting about the new biologic. I hear Entyvio is not that effective for Crohns...it is for UC...is that true?

 

[Scipio]

Entyvio is FDA approved for both UC and Crohn's, and there have been clinical trials showing that it works for both. But it works better for UC than it does for Crohn's, causing some to view it primarily as a UC drug and not a Crohn's drug. So I wouldn't rule it out for Crohn's but you need to be aware that it might not be the best choice.

 

[crohnsinct]

O is on Entyvio but she has or had predominately colonic disease and it was her problem area. It took forever (6 months and 33 days in the hospital) for it to even make a dent in her disease and even then it was only with the help of prednisone and Entocort. She still is only at about 80% and it seems while it is sort of working for her colon, her TI is acting up. Her GI said that it isn't as good with small bowel disease. He tells us Stelara is good with small bowel but not so great with colonic disease. So we are soon going to decide if we will pursue two biologics but that is an extreme long shot as she is on 600mg (double dose) of Entyvio every 4 weeks which is costing insurance a fortune and they decide month to month whether or not to approve the next infusion. So not likely they will approve that AND Stelara. Another option is to do a course of EEN to see if we could kick back the 20% of the disease that isn't responding and then cycle on and off until a new drug comes out. If her colon gets worse after withdrawal of Entocort and prednisone, there is also the option to remove the colon and treat small bowel with Stelara.

Have you looked at LDN? It has been a while since I researched it. That was when the kids were younger so it was a no go for us but O is doing her own research these days and asking about it so looks like I have to go digging again.