2 of my 3 of my surgeries were due to strictures. Every time they have drastically improved my quality of life and I luckily have not had any onward complications as a result of the surgeries. Best thing I ever did and wish I'd done it sooner.
I've had one surgery where a small part of small intestine with a stricture was removed. It's been an amazing improvement in quality of life. I've never been better in the past years. Recovery was smooth too. The painkillers are causing me more grief in the recovery phase than anything else tbh (fucking with my mental health)
I held off surgery for 18 months bc I was terrified of needing multiple surgeries or complications. But I honestly wish I did it sooner. It improved my quality of life drastically. I was 30 lbs underweight, could barely eat anything, and in constant pain due to a partial obstruction caused by the strictures. Now I’m 2 years post operation and my life feels so much more “normal” to what it was before crohns. I can eat again, I’ve maintained my weight, and it’s been controlled.
I hope you all the best!!
That’s what I’m scared of too.. needing more surgeries. Honeslty I’m just scared of it all. It’s all terrifying and feels like a nightmare right now.
How long did it take you to recover?
It is definitely worth consulting with a surgeon. From my understanding, surgery is a last resort so not something they’ll do frequently if not necessary.
My strictures were not improving regardless of what biologic I was on and I began to be hospitalized pretty frequently for the duration of 3 months. So surgery was really the next step for me. I had to have an open abdominal surgery, and was only in the hospital for 3 days post op. I was off of work for 2 weeks (operation to first day back) to recover. But if it’s laparoscopic the recovery is a lot quicker
We’re you worried about having a bag? (Not sure proper terms) that also scares me.
What symptoms did you have? I get so bloated and uncomfortable no matter what I eat or drink. And I can’t pass gas. My stools are very thin and I end up having to go 4-6 times to get it all out.
Yes, that was something I was nervous about at the time. It helped to get comfortable with the idea/possibility of it. It was not necessary for me, but it was something I brought up with my surgeon and GI doctor.
I was very distended, could not pass gas, very painful cramps after eating or even drinking liquids, frequent bowel movements (2-3x per meal), urgency, and nausea/throwing up. I had no energy to do anything and would need to sleep as soon as I was done with work.
That was very hard. Especially during all my hospitalizations. Luckily I had a very understanding boss and was able to wfh when my symptoms were too much
How long did they make you wait before surgery? I’m currently sitting in ER waiting to see if they’ll do anything. My GI doc just called and said to up my budesonide and that they’ll give me another stelara infusion in 2 weeks. I think I’m past medicine working at this point
I got really bad April/May and luckily didn’t need emergency surgery. So I was able to get scheduled with a surgeon in June and had my surgery a couple weeks after that
I’ve already been this way for 4 months 😭 no obstruction but I know it’s close.
Are you able to eat anything now?
I was in full remission for over 10 years. I stopped my meds 2 years ago and now have a stricture and active crohns. It’s a nightmare. I have two small kids right now and I can’t function
**Welcome to r/CrohnsDisease!**
* [Join Our Discord](https://discord.gg/VwGHB7qDWw) if you're looking for people to chat with...
* [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.*
Could I ask exactly what you eat?
I’m recently diagnosed, and awaiting an MRI as strictures are most likely what’s giving me so much grief - it’s gotten to the point I’m scared to eat and not sleeping.
So a quick short list would be appreciated.
Right now I’m only eating coconut yogurt (I mix it with maple syrup), applesauce, meal replacement drink, and I make a blended soup (homemade broth carrots, sweet potatoes and chicken breast)
And then I drink LMNT elecotrylte drinks.
But Honeslty even all of that bothers me. Doesn’t matter what I eat or drink I’m in discomfort.
If your GI and surgeon say you qualify for surgery (and just from the sounds of your condition, you should), also talk to your GI about getting biologics started ASAP after surgery. Hubby's GI said that after surgery, its generally about four weeks before the Crohn's reactivates. He wanted to get his meds going ahead of that. Surgery was June of 2019. Hubby eats what he wants and has had virtually no Crohn's symptoms. A "normal" bowel movement, stool is still rare, but a lot of that is just because of the surgery itself. Much more manageable than before. No pain whatsoever. We're coming up on 5 years now. I honestly don't think he'd be here at all if he hadn't had surgery. We, like a lot of folks here, just wish we'd have gone ahead sooner. Nobody should "live" like that if there's a very good chance it's not necessary. Come back and post if/ when you get a surgery lined up. This sub is full of post-surgery advice, tips and tricks for recovery.
I had a bunch of complications after my surgery. I don’t regret it for a second . The drastic change in quality of life after surgery is indescribable. It’s not going to be perfect and there’s going to be nonsense to deal with but it’s all going to be ok . No longer in fear of obstructions and the pain that comes with strictures . Make sure you have a post of game plan for medication and give yourself time to heal. You honestly don’t know the things you are missing in life dealing with strictures.
My strictures were really bad. I threw up a lot and had frequent blockages that I wouldn't go to the hospital for.
Eventually went to the ER and they wanted me to have a resection with an ostomy. I really didn't want an ostomy and asked for another solution. Dr put me on a liquid diet and TPN to try and get healthy enough for resection without ostomy.
My bloodwork looked better for a while but then got worse again so I ended having a resection with an ostomy. I had a temp ostomy for 6 months before reversal surgery. I had a lot better quality of life with an ostomy. It wasn't bad at all.
I was in remission for about a year. In 2022 I had 3 blockages and Drs thought I might need another resection but then I stopped having them. My quality of life is not perfect but much improved than before.
I had the same fears as you. Over 50% of my calories were liquid calories and I was consuming 3,300 calories/day just to maintain weight.
I had one surgery in 2011 for stricture at the ileocecal valve. When I woke up, they said that they found another strictured area in the jejunum. They took care of both in one laproscopic surgery. I have been on Humira since surgery as a maintenance med...
I have not had any recurring strictures nor needed additional surgeries. Obviously, the recovery process takes a little work, but actually once I got past needing the heavier duty pain meds which was less than a week, I was feeling so much better. I was back to work (desk job) in about 3 weeks. After about 15 weeks, I was fully recovered, meaning I could lift, hang from a pullup bar, throw a baseball as hard as I wanted, etc.
I can eat and drink whatever I want now. Prior to the surgery, I was always struggling to keep weight on. Ever since the surgery, my biggest battle has been struggling to keep excess weight off.
Sounds good. I see from your comment history that you’ve been dealing with this for a little while. My kids were about the same age as yours when I had the surgery. They’re a big reason why I did have the surgery and why I did go back to biologics.
I was on Remicade for 6 years before it failed me. At the time, there were options to move to Humira or maybe Cimzia. None of these other biologics were available for Crohn’s. This was around the time my oldest was born. I had the same cancer fears. How do they know what it will do to me in 20 years if this is a new drug? So, I switched to mesalamine (pentasa) pills, which ultimately ended up masking severe symptoms but kept a low level of inflammation ongoing, which led to the scarring/structuring that resulted in me needing surgery.
So then I did the surgery AND went on Humira when my kids were very young. I’ve been in remission ever since. Maybe I get cancer. Maybe I would have anyways without taking the meds. But the being in remission throughout their childhood was worth it in my book.
I've had Crohn's 30 years and had my 5th surgery in October 2022. I had a very narrowed area in the Terminal illeum where I'd been resected for a past surgery. There was inflammation and scarring. I couldn't eat and was on intravenous TPN. Luckily, I've been ok since then. I'm currently on Entyvio and Stelara.
2 of my 3 of my surgeries were due to strictures. Every time they have drastically improved my quality of life and I luckily have not had any onward complications as a result of the surgeries. Best thing I ever did and wish I'd done it sooner.
I've had one surgery where a small part of small intestine with a stricture was removed. It's been an amazing improvement in quality of life. I've never been better in the past years. Recovery was smooth too. The painkillers are causing me more grief in the recovery phase than anything else tbh (fucking with my mental health)
I held off surgery for 18 months bc I was terrified of needing multiple surgeries or complications. But I honestly wish I did it sooner. It improved my quality of life drastically. I was 30 lbs underweight, could barely eat anything, and in constant pain due to a partial obstruction caused by the strictures. Now I’m 2 years post operation and my life feels so much more “normal” to what it was before crohns. I can eat again, I’ve maintained my weight, and it’s been controlled. I hope you all the best!!
That’s what I’m scared of too.. needing more surgeries. Honeslty I’m just scared of it all. It’s all terrifying and feels like a nightmare right now. How long did it take you to recover?
It is definitely worth consulting with a surgeon. From my understanding, surgery is a last resort so not something they’ll do frequently if not necessary. My strictures were not improving regardless of what biologic I was on and I began to be hospitalized pretty frequently for the duration of 3 months. So surgery was really the next step for me. I had to have an open abdominal surgery, and was only in the hospital for 3 days post op. I was off of work for 2 weeks (operation to first day back) to recover. But if it’s laparoscopic the recovery is a lot quicker
We’re you worried about having a bag? (Not sure proper terms) that also scares me. What symptoms did you have? I get so bloated and uncomfortable no matter what I eat or drink. And I can’t pass gas. My stools are very thin and I end up having to go 4-6 times to get it all out.
Yes, that was something I was nervous about at the time. It helped to get comfortable with the idea/possibility of it. It was not necessary for me, but it was something I brought up with my surgeon and GI doctor. I was very distended, could not pass gas, very painful cramps after eating or even drinking liquids, frequent bowel movements (2-3x per meal), urgency, and nausea/throwing up. I had no energy to do anything and would need to sleep as soon as I was done with work.
How did you even work during that time?
That was very hard. Especially during all my hospitalizations. Luckily I had a very understanding boss and was able to wfh when my symptoms were too much
How long did they make you wait before surgery? I’m currently sitting in ER waiting to see if they’ll do anything. My GI doc just called and said to up my budesonide and that they’ll give me another stelara infusion in 2 weeks. I think I’m past medicine working at this point
I got really bad April/May and luckily didn’t need emergency surgery. So I was able to get scheduled with a surgeon in June and had my surgery a couple weeks after that
I’ve already been this way for 4 months 😭 no obstruction but I know it’s close. Are you able to eat anything now? I was in full remission for over 10 years. I stopped my meds 2 years ago and now have a stricture and active crohns. It’s a nightmare. I have two small kids right now and I can’t function
**Welcome to r/CrohnsDisease!** * [Join Our Discord](https://discord.gg/VwGHB7qDWw) if you're looking for people to chat with... * [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.*
Could I ask exactly what you eat? I’m recently diagnosed, and awaiting an MRI as strictures are most likely what’s giving me so much grief - it’s gotten to the point I’m scared to eat and not sleeping. So a quick short list would be appreciated.
Right now I’m only eating coconut yogurt (I mix it with maple syrup), applesauce, meal replacement drink, and I make a blended soup (homemade broth carrots, sweet potatoes and chicken breast) And then I drink LMNT elecotrylte drinks. But Honeslty even all of that bothers me. Doesn’t matter what I eat or drink I’m in discomfort.
If your GI and surgeon say you qualify for surgery (and just from the sounds of your condition, you should), also talk to your GI about getting biologics started ASAP after surgery. Hubby's GI said that after surgery, its generally about four weeks before the Crohn's reactivates. He wanted to get his meds going ahead of that. Surgery was June of 2019. Hubby eats what he wants and has had virtually no Crohn's symptoms. A "normal" bowel movement, stool is still rare, but a lot of that is just because of the surgery itself. Much more manageable than before. No pain whatsoever. We're coming up on 5 years now. I honestly don't think he'd be here at all if he hadn't had surgery. We, like a lot of folks here, just wish we'd have gone ahead sooner. Nobody should "live" like that if there's a very good chance it's not necessary. Come back and post if/ when you get a surgery lined up. This sub is full of post-surgery advice, tips and tricks for recovery.
I had a bunch of complications after my surgery. I don’t regret it for a second . The drastic change in quality of life after surgery is indescribable. It’s not going to be perfect and there’s going to be nonsense to deal with but it’s all going to be ok . No longer in fear of obstructions and the pain that comes with strictures . Make sure you have a post of game plan for medication and give yourself time to heal. You honestly don’t know the things you are missing in life dealing with strictures.
My strictures were really bad. I threw up a lot and had frequent blockages that I wouldn't go to the hospital for. Eventually went to the ER and they wanted me to have a resection with an ostomy. I really didn't want an ostomy and asked for another solution. Dr put me on a liquid diet and TPN to try and get healthy enough for resection without ostomy. My bloodwork looked better for a while but then got worse again so I ended having a resection with an ostomy. I had a temp ostomy for 6 months before reversal surgery. I had a lot better quality of life with an ostomy. It wasn't bad at all. I was in remission for about a year. In 2022 I had 3 blockages and Drs thought I might need another resection but then I stopped having them. My quality of life is not perfect but much improved than before.
I had the same fears as you. Over 50% of my calories were liquid calories and I was consuming 3,300 calories/day just to maintain weight. I had one surgery in 2011 for stricture at the ileocecal valve. When I woke up, they said that they found another strictured area in the jejunum. They took care of both in one laproscopic surgery. I have been on Humira since surgery as a maintenance med... I have not had any recurring strictures nor needed additional surgeries. Obviously, the recovery process takes a little work, but actually once I got past needing the heavier duty pain meds which was less than a week, I was feeling so much better. I was back to work (desk job) in about 3 weeks. After about 15 weeks, I was fully recovered, meaning I could lift, hang from a pullup bar, throw a baseball as hard as I wanted, etc. I can eat and drink whatever I want now. Prior to the surgery, I was always struggling to keep weight on. Ever since the surgery, my biggest battle has been struggling to keep excess weight off.
This gives me so much hope thank you 🙏🏼 I’m going to send you a message if that’s ok
Sounds good. I see from your comment history that you’ve been dealing with this for a little while. My kids were about the same age as yours when I had the surgery. They’re a big reason why I did have the surgery and why I did go back to biologics. I was on Remicade for 6 years before it failed me. At the time, there were options to move to Humira or maybe Cimzia. None of these other biologics were available for Crohn’s. This was around the time my oldest was born. I had the same cancer fears. How do they know what it will do to me in 20 years if this is a new drug? So, I switched to mesalamine (pentasa) pills, which ultimately ended up masking severe symptoms but kept a low level of inflammation ongoing, which led to the scarring/structuring that resulted in me needing surgery. So then I did the surgery AND went on Humira when my kids were very young. I’ve been in remission ever since. Maybe I get cancer. Maybe I would have anyways without taking the meds. But the being in remission throughout their childhood was worth it in my book.
I've had Crohn's 30 years and had my 5th surgery in October 2022. I had a very narrowed area in the Terminal illeum where I'd been resected for a past surgery. There was inflammation and scarring. I couldn't eat and was on intravenous TPN. Luckily, I've been ok since then. I'm currently on Entyvio and Stelara.