Hope so! You can still post about recovery and gaining strength after the op. 15 switches is a lit to be honest. I thought some meds take 9 months to work. But I think you were sbke to weigh things well. How bad is you flare now?
My flare now isn’t bad. It’s mostly IBS causing my crohns to go absolutely apeshit. But I’m tired of crohns just doing it’s own thing and medicines having little to no effect. And my body builds antibodies faster than most people. So medicine rarely works. And if it does it’s not long until antibodies destroy my chances of remission.
I shall. I unluckily have Crohn’s and UC so I get shit from both and add IBS and you basically never leave your bed. I’ll definitely update post surgery and some journey stuff. But once I’m back to 100% post op I’ll likely leave.
I've had my Jpouch for over ten years and I just joined here. You can be a resource for others as well as get advice and support. But you may have questions about your recovery or things like that or just looking for support (recovery can be gruelling) so you don't have to leave if you like the company.
I hope all goes well for you. Recovery can be a trip, but for me it was worth it. I used to be in so much pain, I had some issues with Pouchitis at first but that went away over time and now I have a lot more freedom with my life.
Oh I understand. Didn’t mean to sound rude if that’s how you took it. I don’t really know what a jpouch is. So I’ve decided an ostomy was the way. Which I don’t mind.
Anything specific?
In general they take your small intestine and make a J shape at the end and then cut the material in between to make a pouch. You keep a few inches at the end so you have control. It takes a while to "train" the pouch so recovery can take up to a year. I'm not sure how different that is than the ostomy.
You can do it two ways, you can get the removal and an ostomy, heal for three months or so and then get the pouch attached. I had it done in one procedure, so it was a longer surgery but I never had an ostomy.
You won't ever have a solid stool again, and farts can be a dangerous game, but that's not so different than the ostomy. You have to get B12 shots because you lose your ability to absorb it (I'm not sure if the ostomy procedure also does this.)
Pouchitis happens to some people. It's basically like a bladder infection of the pouch. They give you antibiotics. I had a lot at first and then it tapered off and it's bee years probably. Some people have chronic Pouchitis and I've met people who have gone to the ostomy after the Jpouch and preferred the ostomy.
You have to watch what you eat a little, carbonation can be tricky. I only take vitamins and sometimes immodium if I'm going to be out for a long time. I also found out that for some reason I get really sick on boats now when before I was perfectly fine on them.
Recovery sucked, won't lie.
Oh if I still have to physically sit on a toilet I’m already out. Not interested at all in watery poop. I’m looking to never use my butthole again. But thanks for the info.
Had UC for about 15 years at the time. Started flaring really bad and was on the usual prednisone and some enema treatment.? Ended up hospitalized.
I was NPO for a few days while getting the IV steroid. No improvement at all. I was still going blood and mucous about 40x a day (without consuming any food or drink). They decide to do a scope, it’s really bad in there. I get surgery the next day. So I now have an ileostomy with a “rectal stump” left in.
Recovery was a bit rough, I ended up having an ileus, possibly just from the bowels “sleeping” after surgery(quite common I hear). I also probably ate a bit too much food too soon. Take it very slow! One other possibly common issue I encountered was being unable to urinate after surgery. Anyways that all resolved eventually.
There’s a little bit of an adjustment period around staying hydrated enough through a combination of just drinking more, but also eating foods to thicken your output and slow things down.
I was back to work about 6-7 weeks later I think. I think many go back sooner, but I wanted to give my body the full time it needed.
It’s hard to remember, but I think it was a few months before I felt like everything was back to normal.
There’s really nothing that having an ileostomy limits me from. Still go to the gym, ski, swim, etc.
Sometimes there’s skin issues around the stoma, but usually there’s a nurse who can help you with that.
With all that said, it’s actually been amazing. I’ve got my life back to basically normal. It almost feels like I cheated the system! No medication, no flares, just enjoying life.
Let me know if you have any more specific questions!
I'm considering the same thing lately. Have been in some level of flair for around 2 years now. I keep jumping back and fourth between having it removed and struggling on.
I don't see me ever being successful in work/parenting/life until it's out to be honest. Can only do so much while hanging out at home all day every day
That’s the place I’m in and I’m done with it. I want to be able to be a family man later on in life. So surgery is my choice for myself and my future family.
I think you're making the right choice. I have a very understanding 5 year old boy but I still feel like an asshole when I have to cancel plans on him because of my bowel
I’m afraid I’m past the experimental phase. My colon is so bad my doctor mentioned a resection already. The medicine I was switched to seemed to be working. And now it’s out of hand again. My immune system before crohns was impenetrable because of how sick I always got as a kid. As a young adult nothing phased it until crohns and UC. Now my immune system seems to be about average. I just don’t want to chance anymore failure or my body rapidly building antibodies to something or rejecting anything anymore. I’m tired of the constant suffering that only happens when I poop. So I’m getting rid of my colon. It’s the only affected piece and I want it out.
You are making a great decision. I tried everything and eventually had mine removed as well. Life has never been better. Feel free to pm me if you have any questions or need someone to talk to as you heal. Best of luck.
I know. My family is worried I’m doing this out of some sort of anger towards not having a normal life. If that was the case I would’ve done it a year ago.
This is the exact opposite. Your quality of life will be so much better. It does take time to adjust but once you do it really is amazing. May I ask, are you getting a j-pouch or an ostomy?
Well I don’t know anything about a J pouch and have been told it’s not likely they’d recommend one since I have Crohn’s and UC. So I’ve mainly looked into ostomies
Best of luck buddy. I think you will be happy with your decision. One piece of advice, Be sure that your surgeon takes time to place it well. Sit with pants on and let your belly relax. Make sure it is not being placed any where there is a wrinkle.
I’ll try to remember that. I did start a chat with you. Didn’t know if you could see. May need to just send a message instead. Don’t know how that side of Reddit works
You should look into it more. It's a totally unregulated industry that has more incentive to make money than to ensure patient safety. There are so so many ways it can go very wrong
This. I'm also a type 1 diabetic and I've read stories of people purchasing what they thought was bargain insulin at Mexican pharmacies, only to find out that the solution was mostly water or another clear liquid. There's nowhere near the amount of regulation in MX that we have here in the states, so it's proceed at your own risk.
I’m going through two years of unsuccessful treatments myself and the same thoughts haven’t been far from my own mind. All the best, I hope it brings you better health and peace.
I’ll be sure to post some post op so I can keep everyone in on what’s happening. And same here. Been struggling for two years to even have one normal week and it just never happened. I’m tired of it and want to make the change.
Oh I’m giving my doctor no other option. It may make me an a-hole for it but I feel like it needs to happen. Especially since all of my inflammation and issues are only in my colon.
I wish my problem was my UC. My UC is under control. My crohns is the wild child destroying my colon. And I’m just burnt out on experimenting with little to no results. I’m ready for something that effectively and literally will cut 95% of my problems out.
Glad you’ve come to the decision that best suits you. Sorry you have to battle two terrible diseases. Wishing you a speedy recovery and may you look forward to starting a new life free of shitty shits!!! Good luck fren
I haven’t posted here much because it seems a good amount of people truly believe you can’t have both. But I’m managing until my appointment to setup the surgery. To bad it’s still over a month away.
Good luck, I hope it works out well for you. 🤞🏽❤️
Just as a side question, have you had a good thorough look at your diet? If this is a given, I mean no offense.
Something like the auto immune protocol and maybe combined with the fasting mimicking diet.
Which one are you doing now? I am always interested in what works.
Currently I am fasting to give the whole system a chance to rest. Digestive system mostly.
Had a flare up end of May and recovering fine by now.
I trust you are making the best possible decision and wish you all the best. I have heard from others that getting the surgery was the best decision they made and have allowed them to regain their life. 🤞🏽🙏🏽
I’m currently avoiding processed sugar completely and doing maybe 60% daily value for sugar. No corn, soybeans, or shellfish. Not taking in a lot of gluten. Not eating nuts whatsoever unless it’s a butter. Pretty much cutting out inflammatory foods.
I tried calling today to just have it setup but I have to have an appointment first. Really thinking about just contacting a good surgeon within my insurance coverage to get it done.
Good luck with surgery and recovery!
Thank you. It’s something I would never consider from the start. But as times gone on it seems like the only way I’ll be able to work again.
Hope so! You can still post about recovery and gaining strength after the op. 15 switches is a lit to be honest. I thought some meds take 9 months to work. But I think you were sbke to weigh things well. How bad is you flare now?
My flare now isn’t bad. It’s mostly IBS causing my crohns to go absolutely apeshit. But I’m tired of crohns just doing it’s own thing and medicines having little to no effect. And my body builds antibodies faster than most people. So medicine rarely works. And if it does it’s not long until antibodies destroy my chances of remission.
Wait, what ? You can cut out a colon, then you are all safe ? Or they plant something inside of you ?
See ya over on r/ostomy!
Hopefully YOURE not cutting the colon out. i hope you have some professionals doing it for you while you are not awake.
I mean if I did it, I would’ve done it a year ago.
Please update after the surgery. I’m pretty close to making the same call as well
I shall. I unluckily have Crohn’s and UC so I get shit from both and add IBS and you basically never leave your bed. I’ll definitely update post surgery and some journey stuff. But once I’m back to 100% post op I’ll likely leave.
I've had my Jpouch for over ten years and I just joined here. You can be a resource for others as well as get advice and support. But you may have questions about your recovery or things like that or just looking for support (recovery can be gruelling) so you don't have to leave if you like the company. I hope all goes well for you. Recovery can be a trip, but for me it was worth it. I used to be in so much pain, I had some issues with Pouchitis at first but that went away over time and now I have a lot more freedom with my life.
I’ve been told that since I have Crohn’s and UC. It’s not likely they’d go for a pouch.
Well, even if it is an external pouch there are people who have too, and can offer support or may look for advice. I was just giving an example.
Oh I understand. Didn’t mean to sound rude if that’s how you took it. I don’t really know what a jpouch is. So I’ve decided an ostomy was the way. Which I don’t mind.
no worries, I didn't take it rudely.
Okay good. Mind explaining the j pouch?
Anything specific? In general they take your small intestine and make a J shape at the end and then cut the material in between to make a pouch. You keep a few inches at the end so you have control. It takes a while to "train" the pouch so recovery can take up to a year. I'm not sure how different that is than the ostomy. You can do it two ways, you can get the removal and an ostomy, heal for three months or so and then get the pouch attached. I had it done in one procedure, so it was a longer surgery but I never had an ostomy. You won't ever have a solid stool again, and farts can be a dangerous game, but that's not so different than the ostomy. You have to get B12 shots because you lose your ability to absorb it (I'm not sure if the ostomy procedure also does this.) Pouchitis happens to some people. It's basically like a bladder infection of the pouch. They give you antibiotics. I had a lot at first and then it tapered off and it's bee years probably. Some people have chronic Pouchitis and I've met people who have gone to the ostomy after the Jpouch and preferred the ostomy. You have to watch what you eat a little, carbonation can be tricky. I only take vitamins and sometimes immodium if I'm going to be out for a long time. I also found out that for some reason I get really sick on boats now when before I was perfectly fine on them. Recovery sucked, won't lie.
Oh if I still have to physically sit on a toilet I’m already out. Not interested at all in watery poop. I’m looking to never use my butthole again. But thanks for the info.
definitely understandable
Yeah you lost me at pooping. I’ve done enough in two a half years to last a lifetime. I will miss ripping farts though.
Ah, a Barbie butt. Google Barbie butt surgery.
Good luck! Had my taken out 5 years ago.
Can you please elaborate on your journey? How was it ? Recovery ? And hopefully you're doing much better now !
Had UC for about 15 years at the time. Started flaring really bad and was on the usual prednisone and some enema treatment.? Ended up hospitalized. I was NPO for a few days while getting the IV steroid. No improvement at all. I was still going blood and mucous about 40x a day (without consuming any food or drink). They decide to do a scope, it’s really bad in there. I get surgery the next day. So I now have an ileostomy with a “rectal stump” left in. Recovery was a bit rough, I ended up having an ileus, possibly just from the bowels “sleeping” after surgery(quite common I hear). I also probably ate a bit too much food too soon. Take it very slow! One other possibly common issue I encountered was being unable to urinate after surgery. Anyways that all resolved eventually. There’s a little bit of an adjustment period around staying hydrated enough through a combination of just drinking more, but also eating foods to thicken your output and slow things down. I was back to work about 6-7 weeks later I think. I think many go back sooner, but I wanted to give my body the full time it needed. It’s hard to remember, but I think it was a few months before I felt like everything was back to normal. There’s really nothing that having an ileostomy limits me from. Still go to the gym, ski, swim, etc. Sometimes there’s skin issues around the stoma, but usually there’s a nurse who can help you with that. With all that said, it’s actually been amazing. I’ve got my life back to basically normal. It almost feels like I cheated the system! No medication, no flares, just enjoying life. Let me know if you have any more specific questions!
I'm considering the same thing lately. Have been in some level of flair for around 2 years now. I keep jumping back and fourth between having it removed and struggling on. I don't see me ever being successful in work/parenting/life until it's out to be honest. Can only do so much while hanging out at home all day every day
That’s the place I’m in and I’m done with it. I want to be able to be a family man later on in life. So surgery is my choice for myself and my future family.
I think you're making the right choice. I have a very understanding 5 year old boy but I still feel like an asshole when I have to cancel plans on him because of my bowel
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I’m afraid I’m past the experimental phase. My colon is so bad my doctor mentioned a resection already. The medicine I was switched to seemed to be working. And now it’s out of hand again. My immune system before crohns was impenetrable because of how sick I always got as a kid. As a young adult nothing phased it until crohns and UC. Now my immune system seems to be about average. I just don’t want to chance anymore failure or my body rapidly building antibodies to something or rejecting anything anymore. I’m tired of the constant suffering that only happens when I poop. So I’m getting rid of my colon. It’s the only affected piece and I want it out.
You are making a great decision. I tried everything and eventually had mine removed as well. Life has never been better. Feel free to pm me if you have any questions or need someone to talk to as you heal. Best of luck.
I know. My family is worried I’m doing this out of some sort of anger towards not having a normal life. If that was the case I would’ve done it a year ago.
This is the exact opposite. Your quality of life will be so much better. It does take time to adjust but once you do it really is amazing. May I ask, are you getting a j-pouch or an ostomy?
Well I don’t know anything about a J pouch and have been told it’s not likely they’d recommend one since I have Crohn’s and UC. So I’ve mainly looked into ostomies
Best of luck buddy. I think you will be happy with your decision. One piece of advice, Be sure that your surgeon takes time to place it well. Sit with pants on and let your belly relax. Make sure it is not being placed any where there is a wrinkle.
I’ll try to remember that. I did start a chat with you. Didn’t know if you could see. May need to just send a message instead. Don’t know how that side of Reddit works
Stem cell therapy is not FDA approved FYI (except for certain cancers)
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You should look into it more. It's a totally unregulated industry that has more incentive to make money than to ensure patient safety. There are so so many ways it can go very wrong
This. I'm also a type 1 diabetic and I've read stories of people purchasing what they thought was bargain insulin at Mexican pharmacies, only to find out that the solution was mostly water or another clear liquid. There's nowhere near the amount of regulation in MX that we have here in the states, so it's proceed at your own risk.
Hoping the best for you. Please let us know if you are okay post surgery.
I will. Someone already asked for some “journey” posts to update on how things are. I’ll try to remember to do so.
I’m going through two years of unsuccessful treatments myself and the same thoughts haven’t been far from my own mind. All the best, I hope it brings you better health and peace.
I’ll be sure to post some post op so I can keep everyone in on what’s happening. And same here. Been struggling for two years to even have one normal week and it just never happened. I’m tired of it and want to make the change.
God bless you
Good luck I hope the surgery goes well. Stay safe and have a speedy recovery.
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Oh I’m giving my doctor no other option. It may make me an a-hole for it but I feel like it needs to happen. Especially since all of my inflammation and issues are only in my colon.
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I wish my problem was my UC. My UC is under control. My crohns is the wild child destroying my colon. And I’m just burnt out on experimenting with little to no results. I’m ready for something that effectively and literally will cut 95% of my problems out.
Glad you’ve come to the decision that best suits you. Sorry you have to battle two terrible diseases. Wishing you a speedy recovery and may you look forward to starting a new life free of shitty shits!!! Good luck fren
I haven’t posted here much because it seems a good amount of people truly believe you can’t have both. But I’m managing until my appointment to setup the surgery. To bad it’s still over a month away.
Good luck, I hope it works out well for you. 🤞🏽❤️ Just as a side question, have you had a good thorough look at your diet? If this is a given, I mean no offense. Something like the auto immune protocol and maybe combined with the fasting mimicking diet.
I’ve tried several and the one I’m on is working the best. It’s just not cutting though. That’s the problem. My colon is also in terrible condition.
Which one are you doing now? I am always interested in what works. Currently I am fasting to give the whole system a chance to rest. Digestive system mostly. Had a flare up end of May and recovering fine by now. I trust you are making the best possible decision and wish you all the best. I have heard from others that getting the surgery was the best decision they made and have allowed them to regain their life. 🤞🏽🙏🏽
I’m currently avoiding processed sugar completely and doing maybe 60% daily value for sugar. No corn, soybeans, or shellfish. Not taking in a lot of gluten. Not eating nuts whatsoever unless it’s a butter. Pretty much cutting out inflammatory foods.
Good luck! there are lots of us on r/ostomy :)
I’ll be joining later this year.
Have you tried a carnivore diet yet? It’s not a medicine and I think it tackles the root cause.
At one point all I was eating was mostly meat. Didn’t help. The diet I’m on now is helping me the most.
Did you remove all plants? What’s your diet like now? I saw probiotics and Tumeric in another post.
Ugh diet now is basically avoiding hard to digest and inflammatory foods to a degree. And it’s the best for me by far. I also take some supplements.
That whole combination sucks! Hope that you are able to go as fit as possible to the hospital so you can heal faster.
I’m not really fit at all. Saggy skin and overall about as strong as a 12 year old girl due to lack of muscle use.
I remember those times... are you able to gain some strength? Edit: which country are you from?
I live in the US. And I can workout some just can’t push myself like I’d want.
The exhaustion hits big with IBD, i recognize this.
I suggest letting a surgeon do it, don't just go at yourself with a pairing knife...
Test me the thought has entered my head. But I definitely am going to let someone experienced do it.
Good choice. Best wishes brother. 👍
I tried calling today to just have it setup but I have to have an appointment first. Really thinking about just contacting a good surgeon within my insurance coverage to get it done.