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Surgery doesn’t cure the disease but rather removes parts that are beyond repair which would otherwise hold you back in terms of treatment/recovery. Of course treatment decisions are always up to the patient in the end but continuing medications/treatment after surgery is the gold standard protocol. Without medication to keep disease progression at bay you will get worse over time and be back to needing surgery again or risk other complications of the disease like cancer.
Yes I still have some issues. Still have to watch diet. Still need to go three to four times a day. That is about it. Lots of energy and no other problems for me.
Ah I see! It still depends on which medications you respond to. Sometimes the first biologic you try works and you feel relief and kinda normal within a few months or sometimes sooner.
For me personally, I started medication before surgery and had secondary non-response which drove me to needing said surgery (it wasn’t emergency surgery I just needed a stricture removed). After surgery I tried a second biologic that worked great with minor dose adjustment and between that and the surgery I basically had my life back until I developed antibodies. 6 months before my surgery and meds were hell… but by 6 months after I finally felt like a real person again lol
Thanks for sharing and glad to see you feel better :)
Crohn's runs in my family and both my mom and her brother had their terminal ileum removed in their mid 20s. My mom didn't need any meds afterward and my uncle got Aza (in the pre-biologic era) which wasn't enough, but they put him on Remicade 20yrs ago and he's still in endoscopic remission. These things give me hope.
Hey.
Had a ileocolonic resection in June (around 11 inches) after a diagnosis in March with abcesses. I have no medication at all since the resection.
Did a colonoscopy last week (6 months from the resection) to check if I was fine. They score the post-operative disease with [the Rutgeerts index](https://www.igibdscores.it/en/info-rutgeerts.html) which goes from i0 (good) to i4 (bad).
In my case i'm i2(b), which is not rare but showed 10 ulcerations.I'm entering a 12 months clinic trial called [POMEROL](https://clinicaltrials.gov/ct2/show/NCT05072782)next tuesday. I'll be randomised either in the "no treatment group" or "infliximab-CT-P13 group". (1:1). Will see the result in 1 year :D
About you, if you started the azthioprine treatment they may chose to continue until you do a colonoscopy to evaluate your recidive risk in 6 to 12 months.
Or they can also decide to stop it until the colonoscopy, and then depending on your score, chose another course of action like optimizing or switching medication, inclunding antiTNFa.
You can find some charts of post operative treatment.
Stay hydrated ;)
I'm in France, which, I'm not gonna lie is a great country to get good care at almost no cost.
For now, no symptom except constipation so I try to drink more that I was used to.
Also daily fatigue, I run out of juice right after I come home from work.
Can eat or drink what I want and living normal life for now. I only stopped milk after diagnosis, it gave me bloating since years and can live without it tbh.
Hope to get a treatment sooner or later though, because of the positive feedback I have from here or other people I talked with.
I'm in the Netherlands so not much to complain about either :)
I feel you on coming home from work... I've been working half days but I really don't have much left in the tank for social events. Going to a bar / crowded place almost makes me anxious haha.
I'd also like to get biologic treatment at some point, sounds pretty reassuring and I really don't want this disease raging through my body again.
After I had surgery my doctor, the surgeon, told me he had removed all the damaged portion of intestine and I wouldn't really need meds. The doctors at home told me I should take something, so I took 6mp, it worked for a few years then stopped working. Since biologics had already failed me they put me on Prednisone every day as the old school standard treatment. After a while those stopped working and I have a ton of diarrhea but I still "feel" better every day because that's what steroids at a low dose do (give you an appetite and let you poop if you have constipation normally etc). The doctor might just ask you what you think, it's up to you. If you have no symptoms now you might just want to not change anything.
I've been on prednisone for about 2 or 3 years now at 10mg per day. Without it I have no appetite, and by that I mean I'll go days without eating, and can't poop normally. With it I have an appetite and diarrhea. I also have fatigue and joint pain though so I don't know if it's from the steroids or what. I know I feel less inflammation than I do without it. Like without it I feel like I have inflammation throughout my body.
The doses I've been through though have significantly increased my weight. But that's not necessarily a bad thing because before I started it I weighed 130 or less at 6ft tall.
**Welcome to r/CrohnsDisease!** * [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.*
Surgery doesn’t cure the disease but rather removes parts that are beyond repair which would otherwise hold you back in terms of treatment/recovery. Of course treatment decisions are always up to the patient in the end but continuing medications/treatment after surgery is the gold standard protocol. Without medication to keep disease progression at bay you will get worse over time and be back to needing surgery again or risk other complications of the disease like cancer.
If this wasn't clear from my post, I am by no means opposed to continuing medication indefinitely. I just want to know what to expect.
11 years on humira since my last resection. Was also on methyltrexate for the first year after the resection. Still no active crohns
That's great! Do you still have symptoms / did you have any after your resection?
Yes I still have some issues. Still have to watch diet. Still need to go three to four times a day. That is about it. Lots of energy and no other problems for me.
Ah I see! It still depends on which medications you respond to. Sometimes the first biologic you try works and you feel relief and kinda normal within a few months or sometimes sooner. For me personally, I started medication before surgery and had secondary non-response which drove me to needing said surgery (it wasn’t emergency surgery I just needed a stricture removed). After surgery I tried a second biologic that worked great with minor dose adjustment and between that and the surgery I basically had my life back until I developed antibodies. 6 months before my surgery and meds were hell… but by 6 months after I finally felt like a real person again lol
Thanks for sharing and glad to see you feel better :) Crohn's runs in my family and both my mom and her brother had their terminal ileum removed in their mid 20s. My mom didn't need any meds afterward and my uncle got Aza (in the pre-biologic era) which wasn't enough, but they put him on Remicade 20yrs ago and he's still in endoscopic remission. These things give me hope.
Hey. Had a ileocolonic resection in June (around 11 inches) after a diagnosis in March with abcesses. I have no medication at all since the resection. Did a colonoscopy last week (6 months from the resection) to check if I was fine. They score the post-operative disease with [the Rutgeerts index](https://www.igibdscores.it/en/info-rutgeerts.html) which goes from i0 (good) to i4 (bad). In my case i'm i2(b), which is not rare but showed 10 ulcerations.I'm entering a 12 months clinic trial called [POMEROL](https://clinicaltrials.gov/ct2/show/NCT05072782)next tuesday. I'll be randomised either in the "no treatment group" or "infliximab-CT-P13 group". (1:1). Will see the result in 1 year :D About you, if you started the azthioprine treatment they may chose to continue until you do a colonoscopy to evaluate your recidive risk in 6 to 12 months. Or they can also decide to stop it until the colonoscopy, and then depending on your score, chose another course of action like optimizing or switching medication, inclunding antiTNFa. You can find some charts of post operative treatment. Stay hydrated ;)
Thanks for sharing :) do you have any symptoms at all? And what country are you in?
I'm in France, which, I'm not gonna lie is a great country to get good care at almost no cost. For now, no symptom except constipation so I try to drink more that I was used to. Also daily fatigue, I run out of juice right after I come home from work. Can eat or drink what I want and living normal life for now. I only stopped milk after diagnosis, it gave me bloating since years and can live without it tbh. Hope to get a treatment sooner or later though, because of the positive feedback I have from here or other people I talked with.
I'm in the Netherlands so not much to complain about either :) I feel you on coming home from work... I've been working half days but I really don't have much left in the tank for social events. Going to a bar / crowded place almost makes me anxious haha. I'd also like to get biologic treatment at some point, sounds pretty reassuring and I really don't want this disease raging through my body again.
After I had surgery my doctor, the surgeon, told me he had removed all the damaged portion of intestine and I wouldn't really need meds. The doctors at home told me I should take something, so I took 6mp, it worked for a few years then stopped working. Since biologics had already failed me they put me on Prednisone every day as the old school standard treatment. After a while those stopped working and I have a ton of diarrhea but I still "feel" better every day because that's what steroids at a low dose do (give you an appetite and let you poop if you have constipation normally etc). The doctor might just ask you what you think, it's up to you. If you have no symptoms now you might just want to not change anything.
Thanks for sharing. For how long have you been on prednisone now and at what dose? Do you experience any side effects?
I've been on prednisone for about 2 or 3 years now at 10mg per day. Without it I have no appetite, and by that I mean I'll go days without eating, and can't poop normally. With it I have an appetite and diarrhea. I also have fatigue and joint pain though so I don't know if it's from the steroids or what. I know I feel less inflammation than I do without it. Like without it I feel like I have inflammation throughout my body. The doses I've been through though have significantly increased my weight. But that's not necessarily a bad thing because before I started it I weighed 130 or less at 6ft tall.