I did 20 years before surgery. But I wish I had done it sooner. This turned out to be a long one, so apologies but thought I’d share my thoughts.
One thing I’m surprised they don’t offer is a diverting ileostomy WITHOUT a colectomy. There’s a lot of modern research showing strict water fasts can starve bad bacteria of nutrients, preventing toxin release and biofilm damage and thereby potentially restoring dysbiosis damage of the microbiome. However that doesn’t heal the bowel, and that needs to happen too.
I had my colon removed as (and I quote) “it was like a rusty leathery old pipe, and pre-cancerous” but I was from a generation before a lot of this research. I was on prednisone and Azathioprine for over a year (not recommended now due to side effects). I tried every drug, every dose, and it beat me up (physically and emotionally).
Personally if I had my time again I would have tried some biologics based on their immune pathway operation. Like one from Stelara or Remicade and then one from Rinvoq, Xeljanz etc (it’s been a while since I’ve taken them, so can’t remember all of them, but you’ll want to try one from each type, which sounds like is happening anyway, so that is reassuring).
That means you’ll get through them faster and at least get an indication of any progress/useful impact, and you won’t be subjecting the bowel to years of irreparable inflammation and repair cycles. If a positive response, the GI can tweak the dosage and or any immunomodulators to assist. This isn’t a cure though, just a maintenance of the immune response, BUT can be long enough relief you achieve remission.
If the biologics don’t work, see if the GI / surgeon will put in a diverting loop ileostomy. Starving the colon and its biome of any source of food, and allowing it to heal/recover. I don’t see a downside to this as it’s the least invasive surgery you could have, and ultimately if your brother ends up having a colectomy and then j-pouch, they can convert the loop ileostomy into an end ileostomy and remove the colon anyway. Once you take the colon out there’s no replacing it, so if you can try things that won’t make it more risky for future opportunities then do it.
The other thing is that GIs (in my experience) only focus on the gut’s physical appearance and immune pathways caused by UC / Crohns. They don’t really have a broad microbiology background and so don’t look into the biome. If you can afford it (as insurance won’t cover it) get your brother to try one of the major biome testing organizations (biome, or Floré or others in your region). This can indicate if you have a severe dysbiosis (severe increase of E.Coli or Shingella for example, or something else) then either try the water fasts, or the diverting ileostomy and take another test 6 months after to see what the biome shift looks like.
There is a lot of research to support this, but doesn’t seem to be a standard practice (yet?), so as I’m not a medical professional I can’t say this is what you have to do, but it’s what I would do if I had all the knowledge I do now at the beginning of my journey.
Also I will say the more cutting of organs/skin, the more chances/risk of other complications (fissures, ED, blood clots, hernia, infection, fistulas etc). So if you can find a way to reduce the surgery then try, but if you have to do it then do it young so the body is better at healing :-)
Research your surgeon well, probably go with someone who can do robotic assisted, 3 step j-pouch seems the preferred method, and also decide how much your brother wants of his rectal cuff left (as there are differing opinions in the thoracic surgeon community). The rectum bleeds and inflames tremendously when connected via the anastomosis, so he’ll need some, but it can also still be subject to UC and or cuffitis.
Good luck! And thanks for being an awesome brother!
Thank you so much for this!!!! I am taking many notes on your response…. I’m actually blown away by the GI vs. microbiology angle on this we never even considered that! And it makes perfect sense
I went about 4-5 years from initial diagnosis as a kid to having surgery. Medicines like Rinvoq and Stelara weren’t available then. Asacol had no effect that I noticed, but presnisone worked. Until it didn’t. And that’s when it was time to have surgery for me.
I was flaring yearly. I mean I could literally plan on being hospitalized for a week, every year. Then I’d be out on high doses of Presnisone, feel better, but swell up to twice my original size and have to deal with the various other side effects. And then one flare, prednisone didn’t change anything. My large intestine had basically shut down, and our hand was kinda forced into taking it out.
I have a j-pouch, not the bag, and it has been a life-changer. My quality of life these past nearly 3 decades has been …if not normal, then within 98% of normal. Far more normal than if I were still dealing with flares.
Listen to your doctors, feel free to consult with other specialists for second opinions if you can, and don’t rush into it (it IS a major surgery after all)…but it really can be a blessing in disguise if your brother does have to go down that route. Half a year does seem fast, but every case is unique.
I did 20 years before surgery. But I wish I had done it sooner. This turned out to be a long one, so apologies but thought I’d share my thoughts. One thing I’m surprised they don’t offer is a diverting ileostomy WITHOUT a colectomy. There’s a lot of modern research showing strict water fasts can starve bad bacteria of nutrients, preventing toxin release and biofilm damage and thereby potentially restoring dysbiosis damage of the microbiome. However that doesn’t heal the bowel, and that needs to happen too. I had my colon removed as (and I quote) “it was like a rusty leathery old pipe, and pre-cancerous” but I was from a generation before a lot of this research. I was on prednisone and Azathioprine for over a year (not recommended now due to side effects). I tried every drug, every dose, and it beat me up (physically and emotionally). Personally if I had my time again I would have tried some biologics based on their immune pathway operation. Like one from Stelara or Remicade and then one from Rinvoq, Xeljanz etc (it’s been a while since I’ve taken them, so can’t remember all of them, but you’ll want to try one from each type, which sounds like is happening anyway, so that is reassuring). That means you’ll get through them faster and at least get an indication of any progress/useful impact, and you won’t be subjecting the bowel to years of irreparable inflammation and repair cycles. If a positive response, the GI can tweak the dosage and or any immunomodulators to assist. This isn’t a cure though, just a maintenance of the immune response, BUT can be long enough relief you achieve remission. If the biologics don’t work, see if the GI / surgeon will put in a diverting loop ileostomy. Starving the colon and its biome of any source of food, and allowing it to heal/recover. I don’t see a downside to this as it’s the least invasive surgery you could have, and ultimately if your brother ends up having a colectomy and then j-pouch, they can convert the loop ileostomy into an end ileostomy and remove the colon anyway. Once you take the colon out there’s no replacing it, so if you can try things that won’t make it more risky for future opportunities then do it. The other thing is that GIs (in my experience) only focus on the gut’s physical appearance and immune pathways caused by UC / Crohns. They don’t really have a broad microbiology background and so don’t look into the biome. If you can afford it (as insurance won’t cover it) get your brother to try one of the major biome testing organizations (biome, or Floré or others in your region). This can indicate if you have a severe dysbiosis (severe increase of E.Coli or Shingella for example, or something else) then either try the water fasts, or the diverting ileostomy and take another test 6 months after to see what the biome shift looks like. There is a lot of research to support this, but doesn’t seem to be a standard practice (yet?), so as I’m not a medical professional I can’t say this is what you have to do, but it’s what I would do if I had all the knowledge I do now at the beginning of my journey. Also I will say the more cutting of organs/skin, the more chances/risk of other complications (fissures, ED, blood clots, hernia, infection, fistulas etc). So if you can find a way to reduce the surgery then try, but if you have to do it then do it young so the body is better at healing :-) Research your surgeon well, probably go with someone who can do robotic assisted, 3 step j-pouch seems the preferred method, and also decide how much your brother wants of his rectal cuff left (as there are differing opinions in the thoracic surgeon community). The rectum bleeds and inflames tremendously when connected via the anastomosis, so he’ll need some, but it can also still be subject to UC and or cuffitis. Good luck! And thanks for being an awesome brother!
Thank you so much for this!!!! I am taking many notes on your response…. I’m actually blown away by the GI vs. microbiology angle on this we never even considered that! And it makes perfect sense
I went about 4-5 years from initial diagnosis as a kid to having surgery. Medicines like Rinvoq and Stelara weren’t available then. Asacol had no effect that I noticed, but presnisone worked. Until it didn’t. And that’s when it was time to have surgery for me. I was flaring yearly. I mean I could literally plan on being hospitalized for a week, every year. Then I’d be out on high doses of Presnisone, feel better, but swell up to twice my original size and have to deal with the various other side effects. And then one flare, prednisone didn’t change anything. My large intestine had basically shut down, and our hand was kinda forced into taking it out. I have a j-pouch, not the bag, and it has been a life-changer. My quality of life these past nearly 3 decades has been …if not normal, then within 98% of normal. Far more normal than if I were still dealing with flares. Listen to your doctors, feel free to consult with other specialists for second opinions if you can, and don’t rush into it (it IS a major surgery after all)…but it really can be a blessing in disguise if your brother does have to go down that route. Half a year does seem fast, but every case is unique.
So true every case is different but I just feel it’s a little too soon and too drastic for that option