I just had a colonoscopy that showed that Stelara is not working for me. This is only a year since Remade stopped working for me after working for only a couple of years. My doctor mentioned that we should also consider surgery at this point since biologics don't seem to be working for me. He said that have a stricture about 10cm above the Terminal Ileum and that the ulcerations last about 30cm. Everything else he saw above and below that are completely fine. He thought this made me a good candidate to try surgery to just take out that 30cm since there's no activity anywhere else and I'm (relatively) young (53). I am curious if anyone here would be willing to share their experience if they have had anything similar. Did the Crohn's spread to other areas after surgery? What sort of long-term complications did you experience on your daily life after having small part of terminal ileum removed? Any questions I should be sure to ask Dr as we discuss options at my next appointment? Struggling with making this big decision. I am certainly tired of the constant pain and constant failure of drugs to help and don't want to spend years trying more only to have stricture eventually require emergency surgery. I also don't want to start the surgery cycle by cutting it out and then having it just reappear somewhere else. Thank you!
Doctor considering first surgery
- Thread starter Novax
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This should make you feel better about surgery: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5916650/
DustyKat
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Hi Novax,
I haven’t had surgery but both of my kids have. Here is a thread about questions to ask your surgeon that is well worth a read
https://crohnsforum.com/threads/questions-for-your-surgeon.27387/
One thing to clarify with your surgeon is exactly what parts of the bowel they will be removing. If the ileocaecal valve has to be removed then normally the caecum is removed too as you can’t join the small bowel to the caecum when the valve is removed. These are the structures between the small and large bowel.
If and when Crohn’s returns it usually returns at the proximal end of the anastomoses site. So not necessarily somewhere else as such but rather it appears where you left off so to speak and this has certainly been the experience of my children. They are now 14 and 10 years post surgery respectively and have had no sign of repeat surgery being needed as they are well controlled on medication.
As you can imagine everyone’s experience with Crohn’s, surgery, recovery and ongoing treatment is different. In my children’s case neither has had long complications as such but there are side effects. They experience ongoing issues with loose bowel motions due to bile salt malabsorption but they can control it with psyllium. Also the terminal ileum is where B12 is absorbed so once removed it needs regular monitoring and replacement if needed. You may also have issues with absorbing fat soluble vitamins so again stay on top of what your Vit D levels in particular are.
You may be in the situation with a stricture and chronic inflammation that you have scar tissue. Scar tissue by its very nature is inflexible and non permeable so that may be an added reason why your medication is not as effective and long lasting as it could be, it can’t penetrate the tissue.
You are certainly correct in wanting to avoid emergency surgery. A planned surgery will nearly always result in less bowel being removed and a better surgical and post surgical outcome.
I haven’t had surgery but both of my kids have. Here is a thread about questions to ask your surgeon that is well worth a read
https://crohnsforum.com/threads/questions-for-your-surgeon.27387/
One thing to clarify with your surgeon is exactly what parts of the bowel they will be removing. If the ileocaecal valve has to be removed then normally the caecum is removed too as you can’t join the small bowel to the caecum when the valve is removed. These are the structures between the small and large bowel.
If and when Crohn’s returns it usually returns at the proximal end of the anastomoses site. So not necessarily somewhere else as such but rather it appears where you left off so to speak and this has certainly been the experience of my children. They are now 14 and 10 years post surgery respectively and have had no sign of repeat surgery being needed as they are well controlled on medication.
As you can imagine everyone’s experience with Crohn’s, surgery, recovery and ongoing treatment is different. In my children’s case neither has had long complications as such but there are side effects. They experience ongoing issues with loose bowel motions due to bile salt malabsorption but they can control it with psyllium. Also the terminal ileum is where B12 is absorbed so once removed it needs regular monitoring and replacement if needed. You may also have issues with absorbing fat soluble vitamins so again stay on top of what your Vit D levels in particular are.
You may be in the situation with a stricture and chronic inflammation that you have scar tissue. Scar tissue by its very nature is inflexible and non permeable so that may be an added reason why your medication is not as effective and long lasting as it could be, it can’t penetrate the tissue.
You are certainly correct in wanting to avoid emergency surgery. A planned surgery will nearly always result in less bowel being removed and a better surgical and post surgical outcome.
Never tried an immunosupressor such as Imuran (aza), purinethol or methotrexate? This is a classic category of medication that are used in IBD, that existed before biologic agents such as Remicade or Stelara.
These medication can show signs of effectiveness within 6 to 8 weeks.
You could give it a try because there are always risks and possible complications with any surgery. Plus your doctor will probably want to put you on a medication after your surgery so that the disease doesnt crawl back, as surgery is not a cure to Crohn's. It could even be one of these immunosuppressors.
I'd discuss what would be the remission's maintenance plan after a surgery and if this plan could be started right away. This could give you a chance to have another trial of medication before surgery.
These medication can show signs of effectiveness within 6 to 8 weeks.
You could give it a try because there are always risks and possible complications with any surgery. Plus your doctor will probably want to put you on a medication after your surgery so that the disease doesnt crawl back, as surgery is not a cure to Crohn's. It could even be one of these immunosuppressors.
I'd discuss what would be the remission's maintenance plan after a surgery and if this plan could be started right away. This could give you a chance to have another trial of medication before surgery.
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Hello, I think you should follow your doctor's advice if you are in constant pain and the medications are not working. I had a fistula repaired some years ago and I would opt for surgery again as the only side effect is mild discomfort now and again for which I use over the counter Anusol. I'm 56. All the best.
Thank you for all the information everyone. Right now doctor says we have to get it into remission before any surgery discussions so started Entyvio and taking Budesonide in the meantime since they say Entyvio takes awhile to begin being effective. Once that is done I'll discuss options with surgeon. I did try AZA before biologics and I had an allergic reaction. Lucky me doctor says I am the only person he's personally had who couldn't tolerate that drug and about one of the .001% who they say have a severe allergic reaction to that drug. Lucky me!
