Hi all, This is my first time posting but have been reading for a while and have had crohns for nearly 30 years. My only crohns specific surgery was right hemicolectomy in 1999 to due to GI bleeding (and general flaring/diarrhea) that couldn't be stopped (and they tried a lot of interesting procedures first).
Since 2016 I started getting constipation and obstructive like pain due to anastomosis and ileal strictures and 12cm of ileal narrowing. The strictures prevent the pediatric endoscope from passing and they are surrounded by friable inflammation as well, so dilation or strictureplasty is not an option. In 2018 i started having constant pain for a couple weeks and labs and then ultrasound showed my gallbladder needed to be removed (maybe affected by the partial obstructions? it was never determined).
My gi dr suggested small bowel resection after that, but due to the fact i strangely didn't have another incident of obstructive like severe pain the colorectal surgeon felt i should wait and see and try other meds. I had already tried humira (which i still take for ankylosing spondylitis), methrotrexate (caused shortness of breath), 6mp (toxic labs). I have had some pretty devastating effects from steroids (avascaular necrosis and hip replacements at 17 years old, severe osteoporosis and spinal damage), so steroids haven't really entered the discussion, and i imagine that would only be temporary help (it's not going to reset the disease right?)
My Gi doc has one last med suggestion, trying to add entyvio in addition to the humira, since the humira still works pretty well on what was really debilitating arthritis of the everything, as well as resulting breathing difficulty. After a 6 month trial, my stool calprotectin still went up and there was no improvement on my mre and i was getting more sporadic mild to moderate ab pain most times i needed to go to the bathroom. By the way since i can find no other accounts of taking entyvio and an anti-tnf together, yes i did seems to get sick more often and easily with fevers. On humira alone I was always surprised i never noticed any ill effect.
So entyvio was discontinued and my gi doc suggested surgery again, being that the only other option would be a risk of changing to stelara which might not help the AS as much as Humira, and stelara likely won't help the stenosis or stricturing anyway. The first surgeon agreed to do it now, but i also wanted to meet with at least one other surgeon, not because i doubted surgery but it just seemed good to hear different options on how it will be done. Since coming off of entyvio a couple months i have been having more diarrhea and not really any ab pain (I was lucky in all my decades of crohns I never had ab pain with diarrhea, only constipation). Due to only having diarrhea, now the second surgeon mostly seemed to be discouraging me from getting surgery. To diarrhea and resetting the disease he said both might come right back. I am very fatigued a lot of the time, but i have also had poor quality sleep for years it seems to be connected to, and i can’t be sure bowel surgery will help that at all. After giving my reasons and my gi dr's reasons - mostly i have tried all my med options and am on absolutely no treatment for crohns right now (humira was determined a while ago to only work be working on my AS), he ultimately said he would do it but it was my decision.
So now after seeing two surgeons who both showed some hesitance based on my symptoms alone I'm really conflicted on what to do. Any thoughts on the situation where drugs are not having an effect, I am not even taking anything for crohns right now, the tests are bad with friable inflammation and strictures, but due to only having diarrhea it is unclear to the surgeons if I should be getting the surgery?
Thanks!
Since 2016 I started getting constipation and obstructive like pain due to anastomosis and ileal strictures and 12cm of ileal narrowing. The strictures prevent the pediatric endoscope from passing and they are surrounded by friable inflammation as well, so dilation or strictureplasty is not an option. In 2018 i started having constant pain for a couple weeks and labs and then ultrasound showed my gallbladder needed to be removed (maybe affected by the partial obstructions? it was never determined).
My gi dr suggested small bowel resection after that, but due to the fact i strangely didn't have another incident of obstructive like severe pain the colorectal surgeon felt i should wait and see and try other meds. I had already tried humira (which i still take for ankylosing spondylitis), methrotrexate (caused shortness of breath), 6mp (toxic labs). I have had some pretty devastating effects from steroids (avascaular necrosis and hip replacements at 17 years old, severe osteoporosis and spinal damage), so steroids haven't really entered the discussion, and i imagine that would only be temporary help (it's not going to reset the disease right?)
My Gi doc has one last med suggestion, trying to add entyvio in addition to the humira, since the humira still works pretty well on what was really debilitating arthritis of the everything, as well as resulting breathing difficulty. After a 6 month trial, my stool calprotectin still went up and there was no improvement on my mre and i was getting more sporadic mild to moderate ab pain most times i needed to go to the bathroom. By the way since i can find no other accounts of taking entyvio and an anti-tnf together, yes i did seems to get sick more often and easily with fevers. On humira alone I was always surprised i never noticed any ill effect.
So entyvio was discontinued and my gi doc suggested surgery again, being that the only other option would be a risk of changing to stelara which might not help the AS as much as Humira, and stelara likely won't help the stenosis or stricturing anyway. The first surgeon agreed to do it now, but i also wanted to meet with at least one other surgeon, not because i doubted surgery but it just seemed good to hear different options on how it will be done. Since coming off of entyvio a couple months i have been having more diarrhea and not really any ab pain (I was lucky in all my decades of crohns I never had ab pain with diarrhea, only constipation). Due to only having diarrhea, now the second surgeon mostly seemed to be discouraging me from getting surgery. To diarrhea and resetting the disease he said both might come right back. I am very fatigued a lot of the time, but i have also had poor quality sleep for years it seems to be connected to, and i can’t be sure bowel surgery will help that at all. After giving my reasons and my gi dr's reasons - mostly i have tried all my med options and am on absolutely no treatment for crohns right now (humira was determined a while ago to only work be working on my AS), he ultimately said he would do it but it was my decision.
So now after seeing two surgeons who both showed some hesitance based on my symptoms alone I'm really conflicted on what to do. Any thoughts on the situation where drugs are not having an effect, I am not even taking anything for crohns right now, the tests are bad with friable inflammation and strictures, but due to only having diarrhea it is unclear to the surgeons if I should be getting the surgery?
Thanks!
