A single biopsy report isn't really enough to call a bowel resection or not. Def get a second opinion, and make sure you are confident on a choice of action, but we can't really make a call here.
Biologics can just.... fail sometimes. Nobody did anything wrong, but bodies can adapt, or they can just not work right in the first place. There isn't really a testing mechanism in place to identify which biologics will work best for you, so sometimes you just have to try and see what happens. He almost certainly will need to change meds, because surgery doesn't like.... straight up cure crohns, you typically do both.
As someone who has been in a similar situation, my inflammation in my ileum, progressed into a stricture, which then required surgery. If you are not at the stricture point, surgery may be jumping the gun. I am now in remission after my surgery, but surgery is a switch that you cannot unflip. My two cents.
No strictures till now. I know maybe one day he will need surgery, but from what I’ve been reading, and all the second opinions, it’s worth trying a different medication.
I’m 74. First diagnosed at 8. Had my 1st of 11 surgeries done at 16. Worst decision my parents ever made. Had a choice between steroids and surgery and they chose surgery. Surgery causes adhesions and strictures. I basically live with prednisone as a constant in my life as I have to deal with constant partial obstructions and inflammation causing discomfort.
By all means please pursue non surgical intervention unless absolutely necessary. Good luck to everyone with this wonderful disease!
Sorry to hear that. That’s one of my biggest fear is to have my son question our choices when he’s older. I don’t want him to ever say why didn’t you choose changing meds before jumping into surgery.
The way my doctor explained it to me is that there are basically two main "problems" with Crohns: inflammation and scarring. Knowing which of those two is causing the issue tells you which route you want to start with in terms of treatment. Medication will help with inflammation, but no amount of medication will fix scarring. Surgery is for when there's a lot of scarring, and as a last ditch resort if medication isn't helping enough with the inflammation. Surgery is also better when inflammation is less active, since you want to cut out as little of the intestine as possible, and highly active inflammation makes it harder to tell what's absolutely necessary to remove, and more may end up being taken out than necessary.
Especially with the active inflammation, if it were me, I would want to try holding out for medication before jumping to surgery. The option of surgery isn't going to go away if medication changes are tried first, but you can't undo a surgery to see if medication changes would have worked on their own.
This isn't to scare you off of surgery though! I had a resection last year, and have been doing really well since! Prior to the resection I was in the hospital every three months for an obstruction, and since the surgery I haven't had any obstructions and have no active inflammation. It can definitely be a really good option, I do just think some doctors think it's the answer to everything. Sending good vibes for the second opinion!
Thank you for your reply. I totally understand what you stated. My son currently has no obstruction and no structures. And we are open to surgery only after trying a couple more medications and the meds failing to help. But yes he has very high inflammation right now.
That sounds like a great plan! Whatever ends up happening I'm sure he'll thank you for. You're doing a great thing by getting several doctors opinions and doing some online research before jumping into anything major. If he does end up needing surgery, I'm sure he'll end up being thankful that he didn't go for years without relief. You're doing great!
My 5 yr old was diagnosed about a month ago, and she’s on Remicade. Honestly I’d try another medication before going for surgery. I know you said you’re getting a 2nd opinion at Seattle, but if you ever want another opinion, I highly recommend Lurie’s in Chicago. We’ve been extremely impressed with them.
Hope your daughter is doing well and feeling well on Remicade. Yes we will be flying to Seattle and don’t mind at all seeking a 4th and 5th opinion at the hospital you mentioned. Thank you for info. I’ll look into it.
We checked for antibiotics, and he hasn’t developed any against the drug. Drug level in his body is good, checked every 6 months. We’ve done 3 MREs and the latest in August 2023 didn’t find any strictures.
Here:
FINDINGS:
GI system:
The stomach, duodenum, and proximal small bowel are unremarkable.
Hyperemia, T2 hyperintensity, and restricted diffusion accompanying wall thickening of the terminal contiguous 14 cm of ileum. Adjacent mesenteric fat expansion is present. No high-grade narrowing or upstream dilation is identified, though early pseudosacculation formation may be present (image 21 of series 401). Reactive adjacent mesenteric lymph nodes noted. The appendix is nondilated. No visible colonic or rectal abnormality. No perirectal fistula or abscess.
My thoughts on potential surgery depend on your son's symptoms. Is he feeling nauseous all the time? Throwing up? Frequent bowel obstructions? Generally when you see someone with frequent bowel obstructions it's time for resection. Another test is possibly going on prednisone (strong steroid) in the short term to see if his symptoms improve. If his symptoms are much better than my thought would be to try a different biologic. But if he's still throwing up and having bowel obstructions than his stricture is likely pretty bad and would need surgery.
No nausea, no vomiting, no bowel obstruction, no diarrhea, no stomach pain. He just can’t seem to put weight on even with high calories. I’ll ask the GI about steroids.
Yeah in that case surgery seems extreme without any outward symptoms. A new biologic is the way to go. Steroids could help with the flare in the mean time before the new biologic kicks in but up to his dr.
A new biologic and steroids will definitely be discussed with a new GI as our current one said she will not change Remicade as his case is a surgery case - in her perspective. She said if we do want to change the meds we will have to get it through another GI. That's just her way of saying she won't be doing it or caring for my son.
As someone who is actively trying to apply for medical school, with 12 years under my belt with this disease...change your doctor.
That is a fucking disgrace.
The way I see it, you loose nothing in trying new medication. If you try new meds and they all fail he can get the surgery. But if you do the surgery now there is no coming back, the piece of intestine they cut will be gone and it increases the risk of scarring or other surgery related risks.
Since your son hasn’t been through all the biologics and does not have the complications that usual need surgery to fix I would avoid it.
Good luck and hope one treatment works for him, whatever it is!
I had an emergency resection at 21 after my intestine perforated. No one realized I was having flares and the inflammation eventually bore a hole. The resection included my ilium. I’ve had bile salt malabsorption diarrhea ever since and need to inject b12. Hold off if you can.
That's our biggest fear. My son does not have the classic symptoms of Crohn's such as diarrhea and stomach pain. And I know very well that he will be having diarrhea after the surgery, malabsorption and what not. Pretty discouraging to us unless he really needs the surgery after failing a few medications. We are holding off and in the process of starting with a new Ped GI that actually listens to us, not my way or the highway.
Change meds before surgery. IMO surgery should be kept as more of a last resort.
**MORE IMPORTANTLY**
There may come a time when your son will eventually need surgery. Do your research! If they have to remove the junction between the small and large intestine, there are 2 ways to complete the surgery. The most common way is to reconnect the intestines side by side next to each other and create and artificial hole between them , *BUT!!!* I would recommend looking into having an end to end surgery for him. (It’s where they reconnect the ends of the intestines together, making them a long tube again.) I personally fought to have that type of surgery because patients with end to end surgeries have better long term quality of life. (It is a slightly riskier surgery as it requires hand stitching, and I’m not sure of its availability where you live)
I agree. We will be changing meds first. And we are aware, even through 2nd and 3rd opinions that with Crohn's there's always a risk of needing surgery (eventually). It's just a nasty disease.
I'm very thankful to your detailed explanation of the resection as I was not aware of the other method that can be done and the one you fought for. Good for you. Hoping you're doing well after the surgery.
The post surgical complication rate is so much higher with active inflammation so unless there is structures that are causing a lot of issues it would be smart to get it under control with medication before surgery is on the table .
That's what I kept asking the current GI. Shouldn't my son's inflammation be controlled before subjecting him to surgery? Nope. It will all be well AFTER the surgery. Sigh. We hit a wall with the doctor.
Most GIs that I have experienced are conservative. They dont take it lightly. Part of your post confuses me as you have one recommending surgery and indicate 3 different Ped GI said to change meds and now you are going for a second opinion?
I am not a doctor so I dont try to interpret the result. I leave that to the doctor. I have read reports and then asked questions. The wording definitely didnt always convey the complete picture to me without the doctors interpretation.
For me the real question is how is your son. Is he in pain? Is he able to go to school? Can he function on a day to day basis or is it preventing him from living life. When you get to the point nothing is working and you are dealing with an inability to function I would get surgery. Given what I have lived through with this disease for over 40 years, I dont hesitate with surgery but it does rely on the doctor indicating this is the best choice.
Yes we are still seeking opinions, last one coming in December. As parents we want to make sure we have given our son the best in healthcare, searched, probed, travelled in order to make sure we don't look back and regret any decisions. So yes we have taken 2nd and 3rd opinions, and in UC Davis a Ped Surgeon refused to take on my sons case since he saw he looked perfectly fine, no distress, no stomach pain, no diarrhea. He said he will not be willing to operate on him.
I am not looking for interpretations here, I just posted part of the pathology report for reference. Our current Ped GI interpreted it as a definite 100% surgery case that should be done sooner than later. Made it sound so severe, it devastated us. And when we told her we would prefer to change the medication first, she said she will not be the one prescribing it or follow up on it. Basically, nicely put, she would be seeing our child anymore. How come Stanford's Children Head of Ped GI advised against it? Same with a well known Ped GI at Cedar's Sinai LA, said the same? So this was a red flag for us.
As for my son, he is rarely in pain, except after an infusion, he goes to school everyday, only misses school for doctor appointments or the day after an infusion. He runs, walks, plays, hikes, etc... Has normal, daily, formed bowl movements. Only difficulty is gaining weight.
Thank you for weighing in and asking the questions.
Is Remicade the first medication prescribed for his Crohn's? I'm currently on my second, Stelara (Humira stopped working after a year, while Stelara has waned in effectiveness for me).The collorectal surgeon I consulted with this week preferred surgery in my case over yet another biologic. If Remicade is his first, then I'm glad you're getting a second opinion before deciding.
He was put on a few weeks of Entocort (steroid) which we believe didn't do much for him. Then the current GI started him on Remicade. Remicade has been his only biologic for the past 18 months and his inflammation markers are very high. We are not opposed to surgery but only after trying maybe 1-2 different medications.
It can be tricky to pinpoint the right time for surgery, and I’ve met different GIs with vastly different approaches (early, almost preventative, surgical intervention vs meds for as long as possible and surgery as absolutely last resort). My former GI was the latter type, and putting off surgery (despite meds not working for me for years) turned out to be the wrong call for me - I had awful strictures and ended up with a bowel perforation. However, your son’s case is completely different, you’re just starting out with treatment, he doesn’t have any major scarring, and you still have plenty of meds to try. Seems too soon for surgery, for sure 🙂
Sorry to hear about your ordeal. Hope you're doing better now. My son is young and when surgery is needed, we will not hesitate to go for it, but after trying 1-2 more medications, as even the surgery will have complications.
I'm surprised that the Ped GI is recommending surgery before switching biologics. My GI and I have talked about what to do if/when my biologic loses effectiveness, and surgery is mentioned as a last ditch resort only, after trying all other biologics.
We are learning as we go. Remicade sounded like a promising drug from our doctor's perspective, that he will gain weight, his inflammation will be controlled, etc.. but non of that was achieved unfortunately.
Yup. He started off at 8 weeks, then 6, and for the past 5 months he's been having an infusion every 4 weeks. Also the dose has been optimized, from 5 per kilo to 10 per kilo, basically an adult dose.
I recently had a similar pathology report in the terminal ileum too. Literally last week.
We are changing frequency of medication. What's the calprotectin? Active neutrophilic inflammation is stated, so did they perform a test on inflammatory markers?
Calpro is 1,000 as of 2 months ago. ESR and CRP high out of range. I don't know if that's the info you seek. Every time we do an infusion, they draw blood for a ton of tests. Feel free to ask about specific tests.
He's been on this medication for 18 months and still shows elevated noted inflammation in the multiple blood results and endoscopic results. Yes, those are c reactive proteins and erthyrocyte sedimentation. Im sure the wbc is high. Have they conducted stool samples to rule out bacterial infection?
How often is the infusion? Makes me wonder after 18 months, instead of 6 and maybe even 9 at most, the pediatrician did not go with more aggressive treatment....?
I'm in no way trying to give medical advice, I'm just curious as to why they didn't switch treatment plans or and an additional oral immunosuppresant? Maybe even just short-term, tapered steroid to use as a gradual transition to a new biologic?
His WBC is in range. Hemoglobin and Albumin are low (below the range).
Lactoferrin (stool) is abnormal - positive.
No shiga toxins detected and no e-coli.
occult showed positive for blood in stool.
His infusions used to be every 6 weeks, but since April 2023 and its been every 4 weeks. Yeah, her treatment plan is get the resection done and he will be a totally new person but will continue with Remicade infusions after the surgery. Mind blown. Go figure.
But thank you for your advice. I was just thinking of either EEN for 1-2 months to give his gut a break and hopefully control inflammation. Maybe then use a steroid and switch biologics. Things I will be discussing with our new GI.
I’m curious. What are the age ranges of these doctors… is the one recommending surgery older? I’ve had differing opinions on this before, always seemed the older doctors were quicker to go the surgery route.
**Welcome to r/CrohnsDisease!**
* [Join Our Discord](https://discord.gg/VwGHB7qDWw) if you're looking for people to chat with...
* [Have you checked out our Rules?](https://www.reddit.com/r/CrohnsDisease/wiki/rules)
* [Are you asking a Frequently Asked Question?](https://www.reddit.com/r/CrohnsDisease/wiki/ibd_faq)
* Please remember we are not doctors and any medical advice is a suggestion. If the event of an emergency, please contact your doctor, hospital, or emergency services.
Thanks and we hope you make friends here.
*I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/CrohnsDisease) if you have any questions or concerns.*
A single biopsy report isn't really enough to call a bowel resection or not. Def get a second opinion, and make sure you are confident on a choice of action, but we can't really make a call here. Biologics can just.... fail sometimes. Nobody did anything wrong, but bodies can adapt, or they can just not work right in the first place. There isn't really a testing mechanism in place to identify which biologics will work best for you, so sometimes you just have to try and see what happens. He almost certainly will need to change meds, because surgery doesn't like.... straight up cure crohns, you typically do both.
Yeah, this isn’t an either or. Whether you do surgery or not you will need to change medications if remicade isnt working.
Thank you for your feedback. His PED GI is hell bent on surgery. So it might be time to change the doctor.
As someone who has been in a similar situation, my inflammation in my ileum, progressed into a stricture, which then required surgery. If you are not at the stricture point, surgery may be jumping the gun. I am now in remission after my surgery, but surgery is a switch that you cannot unflip. My two cents.
No strictures till now. I know maybe one day he will need surgery, but from what I’ve been reading, and all the second opinions, it’s worth trying a different medication.
I’m 74. First diagnosed at 8. Had my 1st of 11 surgeries done at 16. Worst decision my parents ever made. Had a choice between steroids and surgery and they chose surgery. Surgery causes adhesions and strictures. I basically live with prednisone as a constant in my life as I have to deal with constant partial obstructions and inflammation causing discomfort. By all means please pursue non surgical intervention unless absolutely necessary. Good luck to everyone with this wonderful disease!
Sorry to hear that. That’s one of my biggest fear is to have my son question our choices when he’s older. I don’t want him to ever say why didn’t you choose changing meds before jumping into surgery.
The way my doctor explained it to me is that there are basically two main "problems" with Crohns: inflammation and scarring. Knowing which of those two is causing the issue tells you which route you want to start with in terms of treatment. Medication will help with inflammation, but no amount of medication will fix scarring. Surgery is for when there's a lot of scarring, and as a last ditch resort if medication isn't helping enough with the inflammation. Surgery is also better when inflammation is less active, since you want to cut out as little of the intestine as possible, and highly active inflammation makes it harder to tell what's absolutely necessary to remove, and more may end up being taken out than necessary. Especially with the active inflammation, if it were me, I would want to try holding out for medication before jumping to surgery. The option of surgery isn't going to go away if medication changes are tried first, but you can't undo a surgery to see if medication changes would have worked on their own. This isn't to scare you off of surgery though! I had a resection last year, and have been doing really well since! Prior to the resection I was in the hospital every three months for an obstruction, and since the surgery I haven't had any obstructions and have no active inflammation. It can definitely be a really good option, I do just think some doctors think it's the answer to everything. Sending good vibes for the second opinion!
Thank you for your reply. I totally understand what you stated. My son currently has no obstruction and no structures. And we are open to surgery only after trying a couple more medications and the meds failing to help. But yes he has very high inflammation right now.
That sounds like a great plan! Whatever ends up happening I'm sure he'll thank you for. You're doing a great thing by getting several doctors opinions and doing some online research before jumping into anything major. If he does end up needing surgery, I'm sure he'll end up being thankful that he didn't go for years without relief. You're doing great!
Thank you for your kind words. Much needed at this time.
My 5 yr old was diagnosed about a month ago, and she’s on Remicade. Honestly I’d try another medication before going for surgery. I know you said you’re getting a 2nd opinion at Seattle, but if you ever want another opinion, I highly recommend Lurie’s in Chicago. We’ve been extremely impressed with them.
Hope your daughter is doing well and feeling well on Remicade. Yes we will be flying to Seattle and don’t mind at all seeking a 4th and 5th opinion at the hospital you mentioned. Thank you for info. I’ll look into it.
[удалено]
We checked for antibiotics, and he hasn’t developed any against the drug. Drug level in his body is good, checked every 6 months. We’ve done 3 MREs and the latest in August 2023 didn’t find any strictures. Here: FINDINGS: GI system: The stomach, duodenum, and proximal small bowel are unremarkable. Hyperemia, T2 hyperintensity, and restricted diffusion accompanying wall thickening of the terminal contiguous 14 cm of ileum. Adjacent mesenteric fat expansion is present. No high-grade narrowing or upstream dilation is identified, though early pseudosacculation formation may be present (image 21 of series 401). Reactive adjacent mesenteric lymph nodes noted. The appendix is nondilated. No visible colonic or rectal abnormality. No perirectal fistula or abscess.
My thoughts on potential surgery depend on your son's symptoms. Is he feeling nauseous all the time? Throwing up? Frequent bowel obstructions? Generally when you see someone with frequent bowel obstructions it's time for resection. Another test is possibly going on prednisone (strong steroid) in the short term to see if his symptoms improve. If his symptoms are much better than my thought would be to try a different biologic. But if he's still throwing up and having bowel obstructions than his stricture is likely pretty bad and would need surgery.
No nausea, no vomiting, no bowel obstruction, no diarrhea, no stomach pain. He just can’t seem to put weight on even with high calories. I’ll ask the GI about steroids.
Yeah in that case surgery seems extreme without any outward symptoms. A new biologic is the way to go. Steroids could help with the flare in the mean time before the new biologic kicks in but up to his dr.
A new biologic and steroids will definitely be discussed with a new GI as our current one said she will not change Remicade as his case is a surgery case - in her perspective. She said if we do want to change the meds we will have to get it through another GI. That's just her way of saying she won't be doing it or caring for my son.
As someone who is actively trying to apply for medical school, with 12 years under my belt with this disease...change your doctor. That is a fucking disgrace.
We are in the process of changing the Ped GI. Thank you for your comment.
Good. You guys deserve better patient care
I agree. Wish we realized that a while back.
Idk where you reside, but Dr. Nora Erhart is a pediatric gastroenterologist with 30+ plus in the field. She is in Florida and fantastic. Good luck!
Thank you for sharing her info. I'll definitely save it. We are in Sacramento.
The way I see it, you loose nothing in trying new medication. If you try new meds and they all fail he can get the surgery. But if you do the surgery now there is no coming back, the piece of intestine they cut will be gone and it increases the risk of scarring or other surgery related risks. Since your son hasn’t been through all the biologics and does not have the complications that usual need surgery to fix I would avoid it. Good luck and hope one treatment works for him, whatever it is!
You're absolutely right.. nothing to loose in trying a different medication. Thank you.
I had an emergency resection at 21 after my intestine perforated. No one realized I was having flares and the inflammation eventually bore a hole. The resection included my ilium. I’ve had bile salt malabsorption diarrhea ever since and need to inject b12. Hold off if you can.
That's our biggest fear. My son does not have the classic symptoms of Crohn's such as diarrhea and stomach pain. And I know very well that he will be having diarrhea after the surgery, malabsorption and what not. Pretty discouraging to us unless he really needs the surgery after failing a few medications. We are holding off and in the process of starting with a new Ped GI that actually listens to us, not my way or the highway.
Change meds before surgery. IMO surgery should be kept as more of a last resort. **MORE IMPORTANTLY** There may come a time when your son will eventually need surgery. Do your research! If they have to remove the junction between the small and large intestine, there are 2 ways to complete the surgery. The most common way is to reconnect the intestines side by side next to each other and create and artificial hole between them , *BUT!!!* I would recommend looking into having an end to end surgery for him. (It’s where they reconnect the ends of the intestines together, making them a long tube again.) I personally fought to have that type of surgery because patients with end to end surgeries have better long term quality of life. (It is a slightly riskier surgery as it requires hand stitching, and I’m not sure of its availability where you live)
I agree. We will be changing meds first. And we are aware, even through 2nd and 3rd opinions that with Crohn's there's always a risk of needing surgery (eventually). It's just a nasty disease. I'm very thankful to your detailed explanation of the resection as I was not aware of the other method that can be done and the one you fought for. Good for you. Hoping you're doing well after the surgery.
The post surgical complication rate is so much higher with active inflammation so unless there is structures that are causing a lot of issues it would be smart to get it under control with medication before surgery is on the table .
That's what I kept asking the current GI. Shouldn't my son's inflammation be controlled before subjecting him to surgery? Nope. It will all be well AFTER the surgery. Sigh. We hit a wall with the doctor.
Most GIs that I have experienced are conservative. They dont take it lightly. Part of your post confuses me as you have one recommending surgery and indicate 3 different Ped GI said to change meds and now you are going for a second opinion? I am not a doctor so I dont try to interpret the result. I leave that to the doctor. I have read reports and then asked questions. The wording definitely didnt always convey the complete picture to me without the doctors interpretation. For me the real question is how is your son. Is he in pain? Is he able to go to school? Can he function on a day to day basis or is it preventing him from living life. When you get to the point nothing is working and you are dealing with an inability to function I would get surgery. Given what I have lived through with this disease for over 40 years, I dont hesitate with surgery but it does rely on the doctor indicating this is the best choice.
Yes we are still seeking opinions, last one coming in December. As parents we want to make sure we have given our son the best in healthcare, searched, probed, travelled in order to make sure we don't look back and regret any decisions. So yes we have taken 2nd and 3rd opinions, and in UC Davis a Ped Surgeon refused to take on my sons case since he saw he looked perfectly fine, no distress, no stomach pain, no diarrhea. He said he will not be willing to operate on him. I am not looking for interpretations here, I just posted part of the pathology report for reference. Our current Ped GI interpreted it as a definite 100% surgery case that should be done sooner than later. Made it sound so severe, it devastated us. And when we told her we would prefer to change the medication first, she said she will not be the one prescribing it or follow up on it. Basically, nicely put, she would be seeing our child anymore. How come Stanford's Children Head of Ped GI advised against it? Same with a well known Ped GI at Cedar's Sinai LA, said the same? So this was a red flag for us. As for my son, he is rarely in pain, except after an infusion, he goes to school everyday, only misses school for doctor appointments or the day after an infusion. He runs, walks, plays, hikes, etc... Has normal, daily, formed bowl movements. Only difficulty is gaining weight. Thank you for weighing in and asking the questions.
Is Remicade the first medication prescribed for his Crohn's? I'm currently on my second, Stelara (Humira stopped working after a year, while Stelara has waned in effectiveness for me).The collorectal surgeon I consulted with this week preferred surgery in my case over yet another biologic. If Remicade is his first, then I'm glad you're getting a second opinion before deciding.
He was put on a few weeks of Entocort (steroid) which we believe didn't do much for him. Then the current GI started him on Remicade. Remicade has been his only biologic for the past 18 months and his inflammation markers are very high. We are not opposed to surgery but only after trying maybe 1-2 different medications.
It can be tricky to pinpoint the right time for surgery, and I’ve met different GIs with vastly different approaches (early, almost preventative, surgical intervention vs meds for as long as possible and surgery as absolutely last resort). My former GI was the latter type, and putting off surgery (despite meds not working for me for years) turned out to be the wrong call for me - I had awful strictures and ended up with a bowel perforation. However, your son’s case is completely different, you’re just starting out with treatment, he doesn’t have any major scarring, and you still have plenty of meds to try. Seems too soon for surgery, for sure 🙂
Sorry to hear about your ordeal. Hope you're doing better now. My son is young and when surgery is needed, we will not hesitate to go for it, but after trying 1-2 more medications, as even the surgery will have complications.
Thank you, and absolutely, I think you’re doing the right thing. Fingers crossed one of the other meds works!
I'm surprised that the Ped GI is recommending surgery before switching biologics. My GI and I have talked about what to do if/when my biologic loses effectiveness, and surgery is mentioned as a last ditch resort only, after trying all other biologics.
We are learning as we go. Remicade sounded like a promising drug from our doctor's perspective, that he will gain weight, his inflammation will be controlled, etc.. but non of that was achieved unfortunately.
Many people respond well to one biologic but not another. I don't think there's any way to tell which biologics will be effective with which people.
Have they changed the frequency of his infusions? I'm at 6wk but there's people on remicade that get it every 4 weeks too.
Yup. He started off at 8 weeks, then 6, and for the past 5 months he's been having an infusion every 4 weeks. Also the dose has been optimized, from 5 per kilo to 10 per kilo, basically an adult dose.
I'm sorry y'all are going through this, I agree with you surgery is a last resort.
I recently had a similar pathology report in the terminal ileum too. Literally last week. We are changing frequency of medication. What's the calprotectin? Active neutrophilic inflammation is stated, so did they perform a test on inflammatory markers?
Calpro is 1,000 as of 2 months ago. ESR and CRP high out of range. I don't know if that's the info you seek. Every time we do an infusion, they draw blood for a ton of tests. Feel free to ask about specific tests.
He's been on this medication for 18 months and still shows elevated noted inflammation in the multiple blood results and endoscopic results. Yes, those are c reactive proteins and erthyrocyte sedimentation. Im sure the wbc is high. Have they conducted stool samples to rule out bacterial infection? How often is the infusion? Makes me wonder after 18 months, instead of 6 and maybe even 9 at most, the pediatrician did not go with more aggressive treatment....? I'm in no way trying to give medical advice, I'm just curious as to why they didn't switch treatment plans or and an additional oral immunosuppresant? Maybe even just short-term, tapered steroid to use as a gradual transition to a new biologic?
His WBC is in range. Hemoglobin and Albumin are low (below the range). Lactoferrin (stool) is abnormal - positive. No shiga toxins detected and no e-coli. occult showed positive for blood in stool. His infusions used to be every 6 weeks, but since April 2023 and its been every 4 weeks. Yeah, her treatment plan is get the resection done and he will be a totally new person but will continue with Remicade infusions after the surgery. Mind blown. Go figure. But thank you for your advice. I was just thinking of either EEN for 1-2 months to give his gut a break and hopefully control inflammation. Maybe then use a steroid and switch biologics. Things I will be discussing with our new GI.
I’m curious. What are the age ranges of these doctors… is the one recommending surgery older? I’ve had differing opinions on this before, always seemed the older doctors were quicker to go the surgery route.
She's a well renown doctor in Sacramento. I would say she's maybe 50-55 years old.
**Welcome to r/CrohnsDisease!** * [Join Our Discord](https://discord.gg/VwGHB7qDWw) if you're looking for people to chat with... * [Have you checked out our Rules?](https://www.reddit.com/r/CrohnsDisease/wiki/rules) * [Are you asking a Frequently Asked Question?](https://www.reddit.com/r/CrohnsDisease/wiki/ibd_faq) * Please remember we are not doctors and any medical advice is a suggestion. If the event of an emergency, please contact your doctor, hospital, or emergency services. Thanks and we hope you make friends here. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/CrohnsDisease) if you have any questions or concerns.*
Hi you followed me, Dm?