@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*

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.

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.

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. 

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?

@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.

@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

@Bent-Arne posted:

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

Could have been cuffitis?

@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!!!!

@Former Member posted:

Could have been cuffitis?

Could have been im gonna ask next time i meet with my gi. We don't have these words in Norway, so he might have already mentioned it, but with some other words 😂