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how elective should elective surgery be? (tests bad, no meds left, but symptoms cause differing surgical opinions)

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!
 
Are you not on any meds for your Crohn's in preparation for surgery? If that isn't the reason, you really need to get on a maintenance drug as soon as possible. The return of diarrhea might very well be from progressing disease.

Have you tried Remicade?

It sounds like most of your problems are coming from your small bowel is that correct? If so, I would be inclined to try Stelara as it has more success with the small bowel than colonic disease.

Even if you have surgery, you will have to be on a maintenance med so might be worth it to see if Stelara can handle the inflammation. Have they told you if the strictures are scar tissue or from inflammation? If inflammation the drugs might fix that but drugs can't fix scar tissue.

Sorry I can't be of more assistance. Hopefully someone with more surgery experience will be along shortly.
 
Are you not on any meds for your Crohn's in preparation for surgery? If that isn't the reason, you really need to get on a maintenance drug as soon as possible. The return of diarrhea might very well be from progressing disease.

Have you tried Remicade?

It sounds like most of your problems are coming from your small bowel is that correct? If so, I would be inclined to try Stelara as it has more success with the small bowel than colonic disease.

Even if you have surgery, you will have to be on a maintenance med so might be worth it to see if Stelara can handle the inflammation. Have they told you if the strictures are scar tissue or from inflammation? If inflammation the drugs might fix that but drugs can't fix scar tissue.

Sorry I can't be of more assistance. Hopefully someone with more surgery experience will be along shortly.
I am only on Humira, but that has not show to do anything for my crohn's in a while, only for Ankylosing Spondylitis. I want to be on a maintenance med but i have tried all the ones i can take without clinical improvement so that is why my GI dr is recommending surgery. Stelara is the only one i haven't tries afaik, which would force me to stop the Humira for Ankylosing Spondylitis. Remicade being another anti-tnf my gi dr doesn't think would be very different for crohns as Humira, along with the other anti-tnf's. Actually I had infusion reaction to Remicade anyway. I could not get a clear answer from the tests on whether the strictures are fibrosis or inflammation. I think my gi dr thinks they are fibrosis which is why entyvio did not help, he suggest surgery and doesn't think Stelara will help with them anyway.
 
If its been 3 years of obstructive like pain, probably surgery would help with that, before risking a real osbtruction and possibly an emergency surgery.
Never easy to go for surgery...
I’m amost there too
 

emmaaaargh

Moderator
Staff member
I'm in a similar boat to you. I've got a long area of my small bowel which has a bunch of strictures all lined up next to each other (about 50cm?) but, although I have had severe pain from it in the past, and partial obstructions, currently my only symptoms are diarrhoea, fatigue and weight loss. Humira and Remicade have done nothing for me. I'm going for the surgery, though. In my case it's going to be a strictureplasty, but I had small bowel resection for a stricture 10 years ago, and that was inflammatory in nature if I remember correctly. I thought I was fine beforehand, but after surgery it was like I was an entirely new person - my quality of life improved exponentially.

Why not ask your GI about whether the strictures are inflammatory or fibrotic? If they are fibrotic like you suggest, then surgery is really the only option to not let things get worse. Symptoms aren't always going to tell the full picture: people with IBD can be asymptomatic but have raging disease on the inside (I did for a few years) so basing the decision to have surgery on symptoms alone seems odd. Yes, diarrhoea and the disease can both return - but when I had my first surgery it was explained to me like this: you've got a better chance of keeping the disease at bay if you cut out the unsalvageable part(s) and then start a new drug regime, because the worst areas of gut have already been excised, leaving only the lesser-affected areas for the drug to keep healthy. It's a gamble, but sometimes it's worth taking!

Hope you find the right solution for you soon! :)
 
I'm in a similar boat to you. I've got a long area of my small bowel which has a bunch of strictures all lined up next to each other (about 50cm?) but, although I have had severe pain from it in the past, and partial obstructions, currently my only symptoms are diarrhoea, fatigue and weight loss. Humira and Remicade have done nothing for me. I'm going for the surgery, though. In my case it's going to be a strictureplasty, but I had small bowel resection for a stricture 10 years ago, and that was inflammatory in nature if I remember correctly. I thought I was fine beforehand, but after surgery it was like I was an entirely new person - my quality of life improved exponentially.

Why not ask your GI about whether the strictures are inflammatory or fibrotic? If they are fibrotic like you suggest, then surgery is really the only option to not let things get worse. Symptoms aren't always going to tell the full picture: people with IBD can be asymptomatic but have raging disease on the inside (I did for a few years) so basing the decision to have surgery on symptoms alone seems odd. Yes, diarrhoea and the disease can both return - but when I had my first surgery it was explained to me like this: you've got a better chance of keeping the disease at bay if you cut out the unsalvageable part(s) and then start a new drug regime, because the worst areas of gut have already been excised, leaving only the lesser-affected areas for the drug to keep healthy. It's a gamble, but sometimes it's worth taking!

Hope you find the right solution for you soon! :)
Thanks Emma, Very good points. I actually just saw my GI doc again today. He did feel they were fibrotic and like you was giving me good reason to get the surgery for reasons other than the symptoms at the present moment. I guess the only thing that threw me was meeting with a new surgeon who did base thing more on symptoms (he did acknowledge even if tests show all kinds of problems), but ultimately said he would do it when presented with disease in perspective reasons. So i am definitely back to basically deciding when not if.
 
I'm in a similar boat to you. I've got a long area of my small bowel which has a bunch of strictures all lined up next to each other (about 50cm?) but, although I have had severe pain from it in the past, and partial obstructions, currently my only symptoms are diarrhoea, fatigue and weight loss. Humira and Remicade have done nothing for me. I'm going for the surgery, though. In my case it's going to be a strictureplasty, but I had small bowel resection for a stricture 10 years ago, and that was inflammatory in nature if I remember correctly. I thought I was fine beforehand, but after surgery it was like I was an entirely new person - my quality of life improved exponentially.

Why not ask your GI about whether the strictures are inflammatory or fibrotic? If they are fibrotic like you suggest, then surgery is really the only option to not let things get worse. Symptoms aren't always going to tell the full picture: people with IBD can be asymptomatic but have raging disease on the inside (I did for a few years) so basing the decision to have surgery on symptoms alone seems odd. Yes, diarrhoea and the disease can both return - but when I had my first surgery it was explained to me like this: you've got a better chance of keeping the disease at bay if you cut out the unsalvageable part(s) and then start a new drug regime, because the worst areas of gut have already been excised, leaving only the lesser-affected areas for the drug to keep healthy. It's a gamble, but sometimes it's worth taking!

Hope you find the right solution for you soon! :)
I agree, had similar story and received similar advices from my docs
 
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