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10days post up reversal, my anus is really sore like on the inside. And whenever some poop comes there i get really bad urges to use the toilet. And after I've used the toilet the anus still spasms... Like it tries to push out moore poop, but it's empty. And now i have like a pressure in my anus all the time.. I don't see any blood.

So I'm wondering if this is a normal feeling in the beginning? Or should i be worried something is off?

And yeah, i have a big time difficulties to pee when i have this pressure down there.. This worries med big time..

Last edited by Bent-Arne
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Hi, Bent Arne.

I had the same experience you are having now. Your new j pouch is now learning how to work for you. It has never performed the way you and your surgeon expect it to for the rest of your life, so it's a learning curve for you and your j pouch. Remember it used to be a simple small intestine, but now it has to be your colon. My experience in the first few weeks after reversal (or takedown, same thing) was urgency, frequency, a feeling of incomplete emptying, fullness in the anus, the need to use the bathroom but very little comes out. So you get up, wash, and within two minutes you think you need the toilet again. When that happens, just go and sit on the toilet. Don't be frustrated by it. It's a very new and specific thing to learn, and you will. Some bit of stool might come out, or not. Sometimes, for me, it felt like a golf ball rolling around trying to get out. That's the pressure, or gas, or spasms in your pouch. I did whatever my j pouch wanted (sometimes I had no choice). If I felt spasms, I headed for the toilet, just to be safe and not have accidents, which will happen so do not feel bad about that. You and your pouch are learning.

I tried to hold it as long as possible because that is supposed to stretch the size of your pouch. I tried that for a very brief time, then decided I would not follow that policy. To me, it felt like I was holding all the gas, bacteria, stool, liquid, etc., that my j pouch was telling me (screaming at me) it wanted to be rid of. So I did, whenever I had the urge. I didn't want my pouch to hold bacteria for longer than necessary because bacteria is related to inflammation /pouchitis. I had two bouts of pouchitis around this time and took cipro from my doctor and got over the inflammation very, very quickly. After that, I didn't hold on, I just used the toilet whenever I felt the urge. Whatever your condition, drink lots of water and keep your fluids up every single day. I drink water from a 32 ounce Mason jar and straw through the lid. Two bottles per day.

When you get fire bum from the frequent toilet trips, use barrier creams. I used Calmoseptine in the beginning, then preferred Zincofax, a baby cream. You could also try a plastic bidet bottle, or get a bidet that attaches to your toilet. I found that the bidet attachment saved my sanity and my bum. When I'm away from home, I miss my bidet!  I have no pouch issues now, four years later, except when I eat something raw such as salad, or vegetables not fully cooked, or insoluble foods. My pouch can be quiet and calm for five hours with no issues. Give yourself and your j pouch time, maybe a year, to settle in and work for you. Unless you are feverish, dehydrated, malnourished, bleeding profusely, or have severe diarrhea, your frequency and spasms are normal at this early stage. Try not to be afraid or worry. If you have more issues or questions, post them! Someone will help you.

@Bent-Arne posted:

10days post up reversal, my anus is really sore like on the inside. And whenever some poop comes there i get really bad urges to use the toilet. And after I've used the toilet the anus still spasms... Like it tries to push out moore poop, but it's empty. And now i have like a pressure in my anus all the time.. I don't see any blood.

So I'm wondering if this is a normal feeling in the beginning? Or should i be worried something is off?

And yeah, i have a big time difficulties to pee when i have this pressure down there.. This worries med big time..

What medications are you currently taking, or have taken in the past few days? Have you taken any anti spasm drugs? Because when I got my pouch in 2012, the first two weeks after I was home from the hospital I was having this weird issue where my sphincter would spasm. It would get stuck in a squeezing position and I couldn't release it. I also couldn't pee.

Turns out both of these issues were caused by the medication I had taken. I can't remember the name of it now. It was something that the home care nurse suggested to my surgeon to prescribe, after I was home. She thought it would help because I was still having some pain from the surgery and she thought the pouch was cramping up.

I had no idea the medication was causing these issues and I thought I just had a problem related to the surgery. Then I went to a new gastroenterologist, two weeks later, that I hadn't seen before and told him about the peeing problem. He told me to stop taking the medication.

After I did that I could pee normally and the sphincter thing went away too.

Edit: This is another extremely important thing I forgot to mention. Are you taking Metamucil? Did anyone tell you to take it? Because if not, you need to talk to you doctor about it as soon as possible. Metamucil is an extremely important thing for you to have. My surgeon and his team never told me about it, but I got on it because another doctor at a second hospital I went to after my surgery, got me on it. I hate to think of what could've happened if I'd never known about it.

Metamucil just make my pouch function better in every possible way. It makes it so that instead of having to be on the toilet for an hour and have a bunch of little poops, I have one big solid one and get off the toilet in less than thirty seconds. It also makes my butt hurt a lot less and makes me not have to strain to get empty. And it makes me go, overall, less times throughout the day. It makes me feel, almost like I have a healthy colon. When I get lazy about taking the Metamucil, I definitely suffer for it. My pouch and my butt get all irritated and painful.

The dosing is kind of tricky, though. If you take to much, it'll actually make you poop to much and if you take to little, it won't do anything. You have to find just the right amount, a Goldilocks kind of thing. I take one heaping table spoon of it in a 12oz glass of water, as needed, but no more than that in 24 hours.

Last edited by melissa111
@Winterberry posted:

Hi, Bent Arne.

I had the same experience you are having now. Your new j pouch is now learning how to work for you. It has never performed the way you and your surgeon expect it to for the rest of your life, so it's a learning curve for you and your j pouch. Remember it used to be a simple small intestine, but now it has to be your colon. My experience in the first few weeks after reversal (or takedown, same thing) was urgency, frequency, a feeling of incomplete emptying, fullness in the anus, the need to use the bathroom but very little comes out. So you get up, wash, and within two minutes you think you need the toilet again. When that happens, just go and sit on the toilet. Don't be frustrated by it. It's a very new and specific thing to learn, and you will. Some bit of stool might come out, or not. Sometimes, for me, it felt like a golf ball rolling around trying to get out. That's the pressure, or gas, or spasms in your pouch. I did whatever my j pouch wanted (sometimes I had no choice). If I felt spasms, I headed for the toilet, just to be safe and not have accidents, which will happen so do not feel bad about that. You and your pouch are learning.

I tried to hold it as long as possible because that is supposed to stretch the size of your pouch. I tried that for a very brief time, then decided I would not follow that policy. To me, it felt like I was holding all the gas, bacteria, stool, liquid, etc., that my j pouch was telling me (screaming at me) it wanted to be rid of. So I did, whenever I had the urge. I didn't want my pouch to hold bacteria for longer than necessary because bacteria is related to inflammation /pouchitis. I had two bouts of pouchitis around this time and took cipro from my doctor and got over the inflammation very, very quickly. After that, I didn't hold on, I just used the toilet whenever I felt the urge. Whatever your condition, drink lots of water and keep your fluids up every single day. I drink water from a 32 ounce Mason jar and straw through the lid. Two bottles per day.

When you get fire bum from the frequent toilet trips, use barrier creams. I used Calmoseptine in the beginning, then preferred Zincofax, a baby cream. You could also try a plastic bidet bottle, or get a bidet that attaches to your toilet. I found that the bidet attachment saved my sanity and my bum. When I'm away from home, I miss my bidet!  I have no pouch issues now, four years later, except when I eat something raw such as salad, or vegetables not fully cooked, or insoluble foods. My pouch can be quiet and calm for five hours with no issues. Give yourself and your j pouch time, maybe a year, to settle in and work for you. Unless you are feverish, dehydrated, malnourished, bleeding profusely, or have severe diarrhea, your frequency and spasms are normal at this early stage. Try not to be afraid or worry. If you have more issues or questions, post them! Someone will help you.

Thank you so much

@melissa111 posted:

What medications are you currently taking, or have taken in the past few days? Have you taken any anti spasm drugs? Because when I got my pouch in 2012, the first two weeks after I was home from the hospital I was having this weird issue where my sphincter would spasm. It would get stuck in a squeezing position and I couldn't release it. I also couldn't pee.

Turns out both of these issues were caused by the medication I had taken. I can't remember the name of it now. It was something that the home care nurse suggested to my surgeon to prescribe, after I was home. She thought it would help because I was still having some pain from the surgery and she thought the pouch was cramping up.

I had no idea the medication was causing these issues and I thought I just had a problem related to the surgery. Then I went to a new gastroenterologist, two weeks later, that I hadn't seen before and told him about the peeing problem. He told me to stop taking the medication.

After I did that I could pee normally and the sphincter thing went away too.

Edit: This is another extremely important thing I forgot to mention. Are you taking Metamucil? Did anyone tell you to take it? Because if not, you need to talk to you doctor about it as soon as possible. Metamucil is an extremely important thing for you to have. My surgeon and his team never told me about it, but I got on it because another doctor at a second hospital I went to after my surgery, got me on it. I hate to think of what could've happened if I'd never known about it.

Metamucil just make my pouch function better in every possible way. It makes it so that instead of having to be on the toilet for an hour and have a bunch of little poops, I have one big solid one and get off the toilet in less than thirty seconds. It also makes my butt hurt a lot less and makes me not have to strain to get empty. And it makes me go, overall, less times throughout the day. It makes me feel, almost like I have a healthy colon. When I get lazy about taking the Metamucil, I definitely suffer for it. My pouch and my butt get all irritated and painful.

The dosing is kind of tricky, though. If you take to much, it'll actually make you poop to much and if you take to little, it won't do anything. You have to find just the right amount, a Goldilocks kind of thing. I take one heaping table spoon of it in a 12oz glass of water, as needed, but no more than that in 24 hours.

I'm just taking something called Tramadol 50mg and Paracetamol.  When i read about the side effect it states that muscle spasm and trouble urinating is two of them. And they fit my timeperiod. I started using them two days after i got home from the hospital. Day three home i started getting spasms. Like you say, it's like the anus has locked itself in a closed position. I kinda doubt it would be this medication, but I will give it a try. But it's hard when I don't use pain killers...

@Bent-Arne posted:

I'm just taking something called Tramadol 50mg and Paracetamol.  When i read about the side effect it states that muscle spasm and trouble urinating is two of them. And they fit my timeperiod. I started using them two days after i got home from the hospital. Day three home i started getting spasms. Like you say, it's like the anus has locked itself in a closed position. I kinda doubt it would be this medication, but I will give it a try. But it's hard when I don't use pain killers...

Oh, ok. That's not what I took. Are you in the U.K? Because I don't think they prescribe Paracetamol in the U.S, where I live, or if they do, it's called something else. The pain will get better. I know it seems hard to believe that now, but it will. Just hang in there. For me, the worst thing was that nervy weird pain down in the spot where the surgery was done, from the nerves regenerating in that area. It was pretty horrible. But it went away after a few months. Now it's been eight years and I feel and function just like I did back when I had a normal colon. You'll get there.

Also, as far as my comment about the Metamucil, since you appear to be in the U.K, I don't know if they have that there. But it's something you definitely need. It's psyllium husk fiber, made from corn husk. I'm sure they probably sell that in the U.K under some brand name. If not, you're going to have to order it online. 

@melissa111 posted:

Oh, ok. That's not what I took. Are you in the U.K? Because I don't think they prescribe Paracetamol in the U.S, where I live, or if they do, it's called something else. The pain will get better. I know it seems hard to believe that now, but it will. Just hang in there. For me, the worst thing was that nervy weird pain down in the spot where the surgery was done, from the nerves regenerating in that area. It was pretty horrible. But it went away after a few months. Now it's been eight years and I feel and function just like I did back when I had a normal colon. You'll get there.

Also, as far as my comment about the Metamucil, since you appear to be in the U.K, I don't know if they have that there. But it's something you definitely need. It's psyllium husk fiber, made from corn husk. I'm sure they probably sell that in the U.K under some brand name. If not, you're going to have to order it online.

I'm actually in Norway I did find the metamucil here, but the brand name is visiblin  gonna call my doctor tomorrow and ask   ok, so it wasn't tramadol then. Then i will continue to take it. I didn't take anything today and i had a living hell with spasms.

I don't know if it was the tramadol. Maybe that can cause spasms too. I don't know. Talk to your doctor about it.

Do you need your doctor to give you a prescription for things like the Visiblin in Norway? I've heard that in some countries, you need a prescription for pretty much anything. In the U.S, you'd be able to buy the fiber supplements without a prescription at any grocery store.

@Kmiller posted:

Yes, the pressure drove me nuts. I still have it sometimes (almost 8 months] with the pouch but its getting better. I had spasms for awhile, maybe a couple months, but thats a non issue for me now. I found too it was very hard for me to pee, drove me crazy. That is not an issue for me now

This is good to hear in the way I'm not alone

Im going to see my surgeon tomorrow because of this. I'm so super miserable now so i can't wait.

@Winterberry posted:

Hi, Bent Arne.

I had the same experience you are having now. Your new j pouch is now learning how to work for you. It has never performed the way you and your surgeon expect it to for the rest of your life, so it's a learning curve for you and your j pouch. Remember it used to be a simple small intestine, but now it has to be your colon. My experience in the first few weeks after reversal (or takedown, same thing) was urgency, frequency, a feeling of incomplete emptying, fullness in the anus, the need to use the bathroom but very little comes out. So you get up, wash, and within two minutes you think you need the toilet again. When that happens, just go and sit on the toilet. Don't be frustrated by it. It's a very new and specific thing to learn, and you will. Some bit of stool might come out, or not. Sometimes, for me, it felt like a golf ball rolling around trying to get out. That's the pressure, or gas, or spasms in your pouch. I did whatever my j pouch wanted (sometimes I had no choice). If I felt spasms, I headed for the toilet, just to be safe and not have accidents, which will happen so do not feel bad about that. You and your pouch are learning.

I tried to hold it as long as possible because that is supposed to stretch the size of your pouch. I tried that for a very brief time, then decided I would not follow that policy. To me, it felt like I was holding all the gas, bacteria, stool, liquid, etc., that my j pouch was telling me (screaming at me) it wanted to be rid of. So I did, whenever I had the urge. I didn't want my pouch to hold bacteria for longer than necessary because bacteria is related to inflammation /pouchitis. I had two bouts of pouchitis around this time and took cipro from my doctor and got over the inflammation very, very quickly. After that, I didn't hold on, I just used the toilet whenever I felt the urge. Whatever your condition, drink lots of water and keep your fluids up every single day. I drink water from a 32 ounce Mason jar and straw through the lid. Two bottles per day.

When you get fire bum from the frequent toilet trips, use barrier creams. I used Calmoseptine in the beginning, then preferred Zincofax, a baby cream. You could also try a plastic bidet bottle, or get a bidet that attaches to your toilet. I found that the bidet attachment saved my sanity and my bum. When I'm away from home, I miss my bidet!  I have no pouch issues now, four years later, except when I eat something raw such as salad, or vegetables not fully cooked, or insoluble foods. My pouch can be quiet and calm for five hours with no issues. Give yourself and your j pouch time, maybe a year, to settle in and work for you. Unless you are feverish, dehydrated, malnourished, bleeding profusely, or have severe diarrhea, your frequency and spasms are normal at this early stage. Try not to be afraid or worry. If you have more issues or questions, post them! Someone will help you.

Thanks for the long reply

Now i am experiencing really high pressure in my anal area. I barely make it to the toilet, and after I'm done the pressure just keep on getting worse.. And there's so little poop coming out every time.. Just dosent feel right...??

It's completely normal I had my takedown on June, first few weeks I felt same pressure, its like something heavy seating in the anus, when you're empty just wipe and get off the toilet, go back when you feel you need to empty again, pressure won't go away seating position, in the beginning you will have more BM sometimes just gas, it will get better, last month i had 6-8 BM now I'm 5-6 a day, was taking metamucil first few months I stopped 6 weeks ago, good luck!

@Mark234 posted:

It's completely normal I had my takedown on June, first few weeks I felt same pressure, its like something heavy seating in the anus, when you're empty just wipe and get off the toilet, go back when you feel you need to empty again, pressure won't go away seating position, in the beginning you will have more BM sometimes just gas, it will get better, last month i had 6-8 BM now I'm 5-6 a day, was taking metamucil first few months I stopped 6 weeks ago, good luck!

Hi, I had my takedown in 2012. I just want to say there's nothing wrong with continuing to take Metamucil for the rest of your life, if you want to. It doesn't hurt to stay on it. I think it's actually good for the pouch. When I stop taking it for to long, I have difficulty passing stool and my butt gets sore.

@Bent-Arne posted:

Thanks for the long reply

Now i am experiencing really high pressure in my anal area. I barely make it to the toilet, and after I'm done the pressure just keep on getting worse.. And there's so little poop coming out every time.. Just dosent feel right...??

Are you taking the Metamucil yet? It sounds like you need it. It'll make you need to empty less times and have a bigger amount of poop come out when you do.

Also, do you take looperadamide, at all? You said you're in Norway, right? I don't know what they call it there, but in the U.S, it's known by the brand name Immodium. It's an antidiarrhea medicine that helps a lot, especially in the beginning. It's pretty safe and doesn't have a lot of side effects.

I don't know about Norway, but in the U.S, it's available without a prescription.

@melissa111 posted:

Hi, I had my takedown in 2012. I just want to say there's nothing wrong with continuing to take Metamucil for the rest of your life, if you want to. It doesn't hurt to stay on it. I think it's actually good for the pouch. When I stop taking it for to long, I have difficulty passing stool and my butt gets sore.

I do have difficulty passing stool sometimes. i forgot to take Metamucil a  few days and BM was less frequent so i stoped taking it, wasn't aware that it helps for passing as well, will start taking again, thanks for you help.

@melissa111 posted:

Are you taking the Metamucil yet? It sounds like you need it. It'll make you need to empty less times and have a bigger amount of poop come out when you do.

Also, do you take looperadamide, at all? You said you're in Norway, right? I don't know what they call it there, but in the U.S, it's known by the brand name Immodium. It's an antidiarrhea medicine that helps a lot, especially in the beginning. It's pretty safe and doesn't have a lot of side effects.

I don't know about Norway, but in the U.S, it's available without a prescription.

Yepp, i was taking the metamucil but i feel like it made it even harder to go. Like way more straining to get the poop out.

Yes I'm taking loperamide, 6 a day, not so sure it helps though. But the issue is the pressure and everytime some poop touches my anus it's like its gonna be pushed out immediately, even just a little...  This feels exactly like when i had uc, the rectum was inflamed and my anus felt inflamed too.. So now my anus feel inflamed or at least soar and swollen..

@Mark234 posted:

I do have difficulty passing stool sometimes. i forgot to take Metamucil a  few days and BM was less frequent so i stoped taking it, wasn't aware that it helps for passing as well, will start taking again, thanks for you help.

How much were you taking? Because the dosing can be kind of tricky. If you don't take enough, it won't do anything, but if you take to much, then it can actually make you poop to much. You have to find the amount that's just right, like a Goldilocks kind of thing.

For me, I take one heaping tablespoon in a 8-12oz glass of water every day, as needed. Any more than that would be to much. A lot of people would tell you to use less water than that and make it thicker, but I don't think the thickness of the water makes a difference. I find it gross to drink it thick, so I'd rather add more water and just risk that it might not work as well, than drink it thick and not enjoy it.

I find that the Metamucil makes it so that instead of having a bunch of little poops and having to stay on the toilet for an hour, I can just have one big poop and be off the toilet in less than 30 seconds. It's like a broom that sweeps all the little bits down to the bottom.

@Bent-Arne posted:

Yepp, i was taking the metamucil but i feel like it made it even harder to go. Like way more straining to get the poop out.

Yes I'm taking loperamide, 6 a day, not so sure it helps though. But the issue is the pressure and everytime some poop touches my anus it's like its gonna be pushed out immediately, even just a little...  This feels exactly like when i had uc, the rectum was inflamed and my anus felt inflamed too.. So now my anus feel inflamed or at least soar and swollen..

I think you're just still healing from the surgery and the pain and pressure will get better with time. Try not to eat anything with acid or anything spicy. Peanuts can also irritate your pouch, so avoid those to, for now.

I think a lot of the pain comes from the nerves regenerating in the area where the anus was reconstructed. That sensation takes at least a few months to go away. Get checked by your surgeon or gastroenterologist. They might put a camera in your pouch to check for inflammation. If you are inflamed, they may give you an antibiotic like Cipro. 

@melissa111 posted:

How much were you taking? Because the dosing can be kind of tricky. If you don't take enough, it won't do anything, but if you take to much, then it can actually make you poop to much. You have to find the amount that's just right, like a Goldilocks kind of thing.

For me, I take one heaping tablespoon in a 8-12oz glass of water every day, as needed. Any more than that would be to much. A lot of people would tell you to use less water than that and make it thicker, but I don't think the thickness of the water makes a difference. I find it gross to drink it thick, so I'd rather add more water and just risk that it might not work as well, than drink it thick and not enjoy it.

I find that the Metamucil makes it so that instead of having a bunch of little poops and having to stay on the toilet for an hour, I can just have one big poop and be off the toilet in less than 30 seconds. It's like a broom that sweeps all the little bits down to the bottom.

I was just taking one scope a day

He could fee the spot with his finger, but couldn't see it with the scope? That's weird. I've heard of people having ulcers in their pouch before. I wonder if that's what it is. But that's the kind of thing you'd think he'd be able to see on the scope.

Do you have a rectal cuff? A rectal cuff is a small amount of original rectal tissue from the colon, that some surgeons, sometimes leave at the anal opening, to attach the pouch to. I think the amount of tissue that's left can vary, depending on the preferences of each surgeon. I think I've heard of people having as much as one inch of rectal tissue left. (I'm not sure how much that is in centimetres, but it's a lot.)

A lot of people have problems with their rectal cuff and it gets inflamed all the time. It's still part of your colon, so technically, it still has the colitis.

But I'm not sure if most surgeons still leave a rectal cuff, nowadays. My surgeon said I only have like, one milimeter of original rectal tissue left in that area. But when I told other people about that on this site, they were surprised, because they didn't know that's possible.

I got my surgery done by Adrian Greenstein at the Mount Sinai Hospital in New York City in 2012. Based on some things I've seen on this site, I wonder if he did certain things differently than other surgeons because my scars look a lot different than other people's that I've seen pictures of and he said he didn't leave a rectal cuff. And as I said, other people don't seem to be aware that that's possible.

Ask your surgeon if he left a rectal cuff, and if so, how big is it?

@melissa111 posted:

How much were you taking? Because the dosing can be kind of tricky. If you don't take enough, it won't do anything, but if you take to much, then it can actually make you poop to much. You have to find the amount that's just right, like a Goldilocks kind of thing.

For me, I take one heaping tablespoon in a 8-12oz glass of water every day, as needed. Any more than that would be to much. A lot of people would tell you to use less water than that and make it thicker, but I don't think the thickness of the water makes a difference. I find it gross to drink it thick, so I'd rather add more water and just risk that it might not work as well, than drink it thick and not enjoy it.

I find that the Metamucil makes it so that instead of having a bunch of little poops and having to stay on the toilet for an hour, I can just have one big poop and be off the toilet in less than 30 seconds. It's like a broom that sweeps all the little bits down to the bottom.

I was taking a heaping tablespoon with 8 oz water, when i was on Metamucil it was definitely thicker, will start taking it again will see how it goes, i sure need to seat on the toilet for a good 10 min or longer now.

I had the exact same thing. My doc sent me back to work  6 weeks after takedown. It was hell. I would get spasms, run to the toilet, not be able to go, go back to work, get spasms...... it just kept going. For hours. I finally realized that sitting brought the spasms on and learned to sit sideways on the toilet seat (clothed) then whip my pants down and pass stool when the spasms hit. It helped a lot! I still sometimes sit to get things going and it has been 16 years.

@kta posted:

I had the exact same thing. My doc sent me back to work  6 weeks after takedown. It was hell. I would get spasms, run to the toilet, not be able to go, go back to work, get spasms...... it just kept going. For hours. I finally realized that sitting brought the spasms on and learned to sit sideways on the toilet seat (clothed) then whip my pants down and pass stool when the spasms hit. It helped a lot! I still sometimes sit to get things going and it has been 16 years.

I just recently round out why i did have a lot of spasms, did an mri and everything looked very good, but my new gi doc did q scoped, my third scope since takedown and he found the problem. I do have an infection right where the pouch is connected to the anal area. So hen put me on flagyl. I won't be to positive yet, but I'm feeling a hell lot better after just one day on them.

And he was brutally honest and said that i couldn't go to work like this, so he gave me two more moths off work until this is fixed.

Hey Bent-Arne! I have not checked on you in a while, How are you doing??? Are you doing better???

I'm doing better, the pain is gone so far the pressure and spasm are a bit better, don't take any metamucil or imodium now because i have a huge problem emptying my pouch if i use them. So it's pure liquid, but it's easier to empty. The toilet trips is reduced a bit too. Can sleep for 6-7 hours without waking up now.

But my biggest issue now is the times i having trouble emptying the pouch, it takes a lot of straining, i try to avoid it, but it's like my body just pushing it through. And sometimes with an incredibly burning on the way out and intense itching right in side the anus. This will go away like 5-10 min after.

You really do need to try to not strain.  I did that for a few years and when I got my checkup it was causing lots of problems.  I actually had to go to a PT person who specializes in teaching how to properly poop.  The best way I can explain is to not put with your bottom, but use your abs instead.  Make sure your core is in good shape.  

@Disneynut posted:

You really do need to try to not strain.  I did that for a few years and when I got my checkup it was causing lots of problems.  I actually had to go to a PT person who specializes in teaching how to properly poop.  The best way I can explain is to not put with your bottom, but use your abs instead.  Make sure your core is in good shape.  

I have a similar issue. I find that I need to push on my abdomen with my hand, so that the muscle has something to push against. Metamucil also helps.

@Disneynut posted:

You really do need to try to not strain.  I did that for a few years and when I got my checkup it was causing lots of problems.  I actually had to go to a PT person who specializes in teaching how to properly poop.  The best way I can explain is to not put with your bottom, but use your abs instead.  Make sure your core is in good shape.  

Well, I try all i can not to strain, but its my body who does it. I can't help it. Its like the spasms just dosent let go..

But this isn't the case when it's liquid. Then i have no problem evacuating

@Bent-Arne posted:

Well, I try all i can not to strain, but its my body who does it. I can't help it. Its like the spasms just dosent let go..

But this isn't the case when it's liquid. Then i have no problem evacuating

That's weird to me. For me, it's the opposite. I've seen a lot of people on this site saying they have an easier time emptying if they have liquid stool, so it makes me wonder if I'm unusual in some way.

I have a harder time emptying my pouch when it's liquid. For me, the more solid it is, the better. That's why I take Metamucil. I feel like when my poop is more solid, it gives the muscle something to grip onto, so the it comes out a lot easier and faster. Whereas passing liquid stool is more like trying to pick up water with your fingers.

Last edited by melissa111
@Bent-Arne posted:

I'm doing better, the pain is gone so far the pressure and spasm are a bit better, don't take any metamucil or imodium now because i have a huge problem emptying my pouch if i use them. So it's pure liquid, but it's easier to empty. The toilet trips is reduced a bit too. Can sleep for 6-7 hours without waking up now.

But my biggest issue now is the times i having trouble emptying the pouch, it takes a lot of straining, i try to avoid it, but it's like my body just pushing it through. And sometimes with an incredibly burning on the way out and intense itching right in side the anus. This will go away like 5-10 min after.

I am glad you are doing better and no pain

Straining is bad; actually that can cause hernias and other stuff, and that is bad for the rectal cuff too. I think you should reach out to your Gastro, I would hate for you to get a hernia or other problems from straining.

*Eating Oatmeal may help that for all of you guys*

Last edited by Lauren Of Emerald City

I wanted to resurrect this thread because it describes what I’m going through perfectly and has so much great advice.

My questions for you all are how little is too little? Over past 3 days my output has become less and less. Still have urgency but very little stool is coming out each time. Feels like there’s something blocking it. I’m starting to freak out a bit!

Other question is (Bent-Arne?) were the scopes done in the clinic or usual endoscopy suite? I see my surgeon in a few days and he is aware of these issues and said if need be he can always scope me in the office. My anus is so painful and spasmed right now I can’t even imagine no sedation.

Bent-Arne, how are you doing now? Do you feel better and is your pouch functioning?
I’m losing all hope that this will ever improve. I’m afraid I’ll never be able to comfortably empty my pouch and return to my life.

Are you taking any medications? About one week or so after I got home from the hospital after my takedown, I was still having some pain in my pouch from the surgery. I was having crampy pain. A home visit nurse suggested to my surgeon that he prescribe this anti spasm medication, so he did. Within about four days, I had to go back into a different hospital closer to my house because I had become severely dehydrated. By that time my bladder had stopped working. I couldn't pee. The doctors at hospital #2  just thought that it was because of the surgery. They missed the fact that I wouldn't have been allowed home from hospital #1 if I couldn't pee at that point. They thought I had some kind of problem that I needed to see a urologist about.

After I came home from hospital #2 I started having a weird problem with my spincter muscles. They'd go into a spasm and get stuck in a squeezing position and I wouldn't be able to release them. I just thought I was having some weird problem from the surgery and I planned to take it up with my surgeon at my next follow up appointment. In the meantime, I had an appointment with a new gastroenterologist that I'd never been to before. When I told him about the peeing issue, which I was still having too, he had the solution - Just stop taking the anti spasm medicine. Why the doctors in the hospital didn't know about that, I have no idea, but it really makes me wonder about their competency.

I stopped taking the stuff and not only could I pee again, but the butt spasms went away too. This was in 2012. I really wish I could remember the name of the medication, so I could better warn people about it, but I don't remember. Maybe if you tell me which meds you're on, I could tell you if one of them is it because I might be able to remember if I hear the name.

Over the next few weeks, everything got better and I'm doing great now. I think all the symptoms I was having at that time, like the severe dehydration and the pain and everything, was just from the fact that my intestine was still shocked from the recent surgery and still getting used to it's new job.

Also, are you taking Meta Mucil? That stuff makes a world of difference for me. It just makes my pouch function better in every possible way. It makes it so that instead of having to stay on the toilet for 45 minutes and have a bunch of little poops that take forever to come out, (and have to strain and get sore from that,) instead I just have one big poop that comes out way more efficiently and I can be off of the toilet in less than one minute. (And go less times overall, too.) It's like the difference between picking up an ice cube vs. picking up water with you fingers. When it's a solid object, it gives the muscle something to grip onto, so it's way easier and faster and you don't have to strain nearly as much.

I find that the best time to take it is in the late afternoon or early evening with dinner so that it'll have it's effect by the next morning. I take 1 and 1/2 tablespoons mixed with about 8-12 oz of water. Less than that won't do anything, but don't take more than that either, because to much of it will actually make you have to poop to much. It's kind of like a Goldilocks thing. The amount has to be just right.

   

Last edited by melissa111

Thanks Melissa for your detailed reply. I’m not taking an antispasmodic. I do take a benzo for sleep but that is not an anticholinergic drug which is what I’m guessing you were on. Anticholinergics as a class can cause urinary retention, dry mouth, constipation in many. Lamotil actually has an anticholinergic component but it seems most people on here don’t have urinary issues with it. I’m not taking any Imodium or Lamotil right now as I’m panicking about not being able to go more than an tablespoon at a time. Maybe I’ll try some Metamucil today to see if adding bulk will help. I’m just terrified Of blocking things further. My stool is like loose oatmeal so maybe it needs more bulk?

Do you have any issues with increased gas with the fiber?

Now that you mentioned it, I think Lamotil was what I was taking.

How much are you eating and what are you eating? How long ago did you have your surgery?

Now that I don't have a colon, I find that I don't really get gas from food, much anymore. So the fiber doesn't bother me in that way. I think it's probably because the bacteria that interacts with the gas producing foods and breaks down into gas, is mostly just found in the colon. That's not to say that I never get gas from food, it just happens a lot less. I can eat things like beans and broccoli now and it doesn't have that effect. The only things that really give me gas are things that cause me to swallow air, like using a straw, chewing gum, or if my nose is blocked up because I have a cold. However, one exception is that I found that eating pasta made with chickpea flower gave me really bad gas, so I avoid that stuff too. It was just the pasta, though, not other chickpea products, so I'm thinking it was probably another ingredient that was in it.

As you know, it's important to avoid gas as much as possible, because it just means more annoying trips to the toilet.

The frequency and consistency of your poop totally depends on what you eat and how much. The more fiber, the more solid and formed it will be. If it has the consistency of oatmeal, that actually sounds pretty normal for someone who hasn't had meta mucil, but is otherwise eating a proper diet. I'd be more concerned if you told me you were having watery liquid poops. For me, I find that sweet potatoes and water melon are the best bulk forming foods outside of that. If you don't want to take meta mucil for whatever reason, eat sweet potatoes instead. But I'd hold off on the watermelon until you've seen you're doctor and know that everything is ok, because I'd be concerned about blockages. I can tolerate it fine and I even used to eat it when I had the ostomy bag, but looking back, I don't think that was smart idea, and I wouldn't be surprised it caused blockages in other people, so be careful if you haven't had it since the surgery. Maybe just try a very small amount and see what happens.

Are you drinking sports drinks like Powerade or Gatorade? With food, they're ok, but I find that if I drink these things, especially in large amounts on an empty stomach, they just go right through me. So if someone is having (what a J poucher would consider diareah) I would wonder if that could be the reason. (I would consider it diareah when it's really unusually loose and there's enough urgency that I have a hard time making it to the bathroom.)

Of course our standard for what we consider diareah, is different from what the standard symptoms are for someone with a colon. That's what I mean.

Last edited by melissa111

I’m almost 3 weeks out from takedown ( had post-op ileus for a week after, on TPN so only about 2 weeks on solid food).  I’m trying to eat as much as I can though it’s a struggle with no appetite and constant anal pain, urgency. I do have some issues with gas pains but not as debilitating as some on here.

I generally eat oatmeal or cream of wheat for breakfast (splurged and had a ham and cheese croissant the other day which didn’t seem to have any negative effects). Then during the day, have a smoothie with banana, almond milk, and yogurt (maybe mango or strawberries if around), cheese and crackers or peanut butter on English muffin, maybe some leftover rice from the night before. Then for dinner, grilled chicken/fish/lean beef with rice or potato and well cooked veg like carrots.  Had pasta with olive oil and parm one night. Portions are pretty small as I fill up fast after several months of obstructions and pelvic infection. Lost 30 lbs through this whole thing and now grossly underweight. Trying to stay above 90 lbs at 5’6”.

Does that diet seem reasonable to you? Maybe not enough bulk. I hate eating this way. I’m a fresh fruit/veg, lots of seasonal produce, legumes, Indian, Thai, Ethiopian, you name it type of cook so this sucks. I’m running out of ideas for bland food and feel bad for my poor husband with this diet. Ugh. And yes, I too ate plenty of watermelon during my year with the end ileo. Ate whatever I wanted with that thing. I won’t introduce any watermelon at this point but maybe I’ll give the Metamucil a shot.

You're diet sounds pretty good to me, for the point that you're at. You're only three weeks out. You're intestine is still healing and getting over the shock of being touched and moved around. One year from now you should be doing a lot better. It actually took me about three or four years before I finally stopped having that pain on the inside of my rectal area where the reattachment was done. Usually it would flair up when I would eat spicy food or strain to much.

Your diet doesn't sound much different from mine when I was at that point. I also like to have banana smoothies with almond milk. That's one of the best things for me. I put plain or vanilla yogurt in mine and about a tablespoon of blackstrap molasses and a pinch of cloves and cinnamon in mine. It makes it taste like a gingerbread cookie. It's important to use blackstrap molasses because it has iron, B vitamins, and magnesium, that the thicker processed kind doesn't have. Also, it's easier to pour because it's thinner. Be sure to read the nutrition labels because the amount of these nutrients vary a lot between different brands. I find these smoothies to be a life saver. It makes me feel so much better if I'm feeling lousy for any reason or having dehydration symptoms.

Spicy foods will be an issue, though, especially in the beginning. One helpful trick is to always drink milk immediately after eating something spicy. If you can't get milk because you're at a restaurant or something, ice cream works about as well. Milk has proteins in it that coat the capsesin molecules from peppers and make them inactive so they won't burn coming out. Almond milk kind of helps in this way too, somewhat, but cows milk is the best because it's the dairy caseins that have most of the effect.

They also make a product called Prelief, which is an antacid pill that neutralizes acids in foods that might cause butt burn because of the acidity.

With these two products and the meta mucil, I find that I can eat a pretty much normal diet. I have a large Indian supermarket near me and I love to go there and try everything. As long as I drink milk, spicy foods don't bother me.

I should also mention, when buying the Meta Mucil, make sure you only get the name brand stuff. Some of the generic brands taste absolutely disgusting and they don't mix as well. Meta Mucil, on the other hand, just taste like orange drink and I actually look forward to drinking it when I get thirsty because it actually taste good. 

@Pouch2021 posted:

Thank you so much for the input. This has been a rough road. I only have Citrucel (methylcellulose) on hand, not Metamucil. Have you tried this for fiber and is it equivalent to Metamucil?

Some people prefer Citrucel to psyllium. Give it a try for a week or so. If it works perfectly then your investigation is done, otherwise try psyllium so you can compare them.

@Pouch2021 posted:

I wanted to resurrect this thread because it describes what I’m going through perfectly and has so much great advice.

My questions for you all are how little is too little? Over past 3 days my output has become less and less. Still have urgency but very little stool is coming out each time. Feels like there’s something blocking it. I’m starting to freak out a bit!

Other question is (Bent-Arne?) were the scopes done in the clinic or usual endoscopy suite? I see my surgeon in a few days and he is aware of these issues and said if need be he can always scope me in the office. My anus is so painful and spasmed right now I can’t even imagine no sedation.

Bent-Arne, how are you doing now? Do you feel better and is your pouch functioning?
I’m losing all hope that this will ever improve. I’m afraid I’ll never be able to comfortably empty my pouch and return to my life.

Hello

Scopes are done in the hospital, some kinda special room just for this.  Always without sedation.  Even though it was inflamed and i had spasms it wasn't so bad as long as the gi is careful. / wayyy better than a normal one with the large intestine 😊

Now I'm in the best shape i have been since my takedown, but I'm on antibiotics everyday. 2 weeks with flagyl and 2 weeks with cipro. Works like a charm. Using the toilet when i want to. Usually 2-4 times a day with 100% control. Going to try to cut out the antibiotics after a while, but not just yet.  I even take 6-8 imodium everyday.

No burning or spasms. Eat what i want and drink what i want..

* i still have to try not to press hard while I'm at the toilet, but if i just relax it's going just fine. If i press it will just make things burn and spasms again.

I don't know about Citrucel. I never tried it. I only ever took metamucil because they started me on it in the hospital, I think, about two weeks after my surgery and I've been using it ever since. I'm not sure which doctor put me on it because I was in a different hospital from the one that I had the operation in, but I'm so glad they did. (I had to go back to another hospital closer to my house by ambulance four days after coming home from the one in New York City where I had the surgery done because I got severely dehydrated to the point where it was life threatening. I think I'd been in New York for a week or two before that.)

I don't know if it was my surgeon who told doctors at the second hospital to give the Metamucil or if one of their own doctors ordered it, but I don't think I would've found out about it if I hadn't needed to go to the second hospital. If I didn't know about it, I would've been suffering with butt burn and pain from straining and probably so many other issues by now, that that would have caused. I can't say enough good things about that stuff.

Also, another thing I want to mention that's important but not necessarily related to this - Do you keep water next to you when you go to bed? That's extremely important. You need to drink water throughout the night to avoid dehydration.

@Bent-Arne posted:

Hello

Scopes are done in the hospital, some kinda special room just for this.  Always without sedation.  Even though it was inflamed and i had spasms it wasn't so bad as long as the gi is careful. / wayyy better than a normal one with the large intestine 😊

Now I'm in the best shape i have been since my takedown, but I'm on antibiotics everyday. 2 weeks with flagyl and 2 weeks with cipro. Works like a charm. Using the toilet when i want to. Usually 2-4 times a day with 100% control. Going to try to cut out the antibiotics after a while, but not just yet.  I even take 6-8 imodium everyday.

No burning or spasms. Eat what i want and drink what i want..

* i still have to try not to press hard while I'm at the toilet, but if i just relax it's going just fine. If i press it will just make things burn and spasms again.

Glad to see that you're doing better now. About the issue of having to press to hard when you go to the bathroom - I know this is going to sound kind of weird, but do you push on your lower abdomen with your hand when you go to the bathroom? I pretty much always do that out of habit now. I find that it makes it easier to go because it helps to increase the intrabdominal pressure by giving the muscles something to push up against. I also have an incisional hernia and I feel like pressing into my abdomen with my hand helps to hold it in place and prevents it from getting worse. It actually surprises me how weird and uncomfortable it feels whenever I can't do it for some reason, like when my arm was to sore to move because of my COVID shot.

This next piece of advice only applies if you're a woman -

Also, I find that it's a good idea to try to pee and poop separately as often as possible. (If you're a woman) If you do both at the same time, it can kind of put to much unnecessary stress on your bladder because you probably don't have to squeeze your bladder as hard as you do your pouch. This will make your bladder hurt. Try to always pee first, before pooping. Doing this helps you to strengthen and train your muscles and develop better control.

Last edited by melissa111
@Bent-Arne posted:

Hello

Scopes are done in the hospital, some kinda special room just for this.  Always without sedation.  Even though it was inflamed and i had spasms it wasn't so bad as long as the gi is careful. / wayyy better than a normal one with the large intestine 😊

Now I'm in the best shape i have been since my takedown, but I'm on antibiotics everyday. 2 weeks with flagyl and 2 weeks with cipro. Works like a charm. Using the toilet when i want to. Usually 2-4 times a day with 100% control. Going to try to cut out the antibiotics after a while, but not just yet.  I even take 6-8 imodium everyday.

No burning or spasms. Eat what i want and drink what i want..

* i still have to try not to press hard while I'm at the toilet, but if i just relax it's going just fine. If i press it will just make things burn and spasms again.

That’s so encouraging that you’re doing so well. Your symptoms were very similar to mine now, I just hope I don’t have an infection (yet another one). May I ask, are the ongoing antibiotics for pouchitis or for the original infection you had?

@Pouch2021 posted:

That’s so encouraging that you’re doing so well. Your symptoms were very similar to mine now, I just hope I don’t have an infection (yet another one). May I ask, are the ongoing antibiotics for pouchitis or for the original infection you had?

Well, i still don't know if i had pouchitis.. All i know i had an infection.

Maybe i did have pouchitis too.. Would assume that actually, but without any sign of this in my pouch

@melissa111 posted:

I don't know about Citrucel. I never tried it. I only ever took metamucil because they started me on it in the hospital, I think, about two weeks after my surgery and I've been using it ever since. I'm not sure which doctor put me on it because I was in a different hospital from the one that I had the operation in, but I'm so glad they did. (I had to go back to another hospital closer to my house by ambulance four days after coming home from the one in New York City where I had the surgery done because I got severely dehydrated to the point where it was life threatening. I think I'd been in New York for a week or two before that.)

I don't know if it was my surgeon who told doctors at the second hospital to give the Metamucil or if one of their own doctors ordered it, but I don't think I would've found out about it if I hadn't needed to go to the second hospital. If I didn't know about it, I would've been suffering with butt burn and pain from straining and probably so many other issues by now, that that would have caused. I can't say enough good things about that stuff.

Also, another thing I want to mention that's important but not necessarily related to this - Do you keep water next to you when you go to bed? That's extremely important. You need to drink water throughout the night to avoid dehydration.

EXCELLENT!!!!

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