Hello JFILL21, I am sorry you are going through a tough time. Your body has gone through a major, major change and it will take time to adapt. I did not feel totally fine for at least a year. Even now I struggle with anemia, which can be difficult.  At this point, one thing you can do is focus on your food. Maybe the burning inside is coming from acidic food. I found for the first year, eating cooked tomatoes caused major disruption. Now I can eat them (I am 7 years out).  I also took a lot of immodium the first year, but now I take 2 per day: one in the morning and one at night.  You will find your way.  Sending you hugs!

Perhaps you could experiment with your Benefiber dose, or try a different soluble fiber type. Benefiber didn’t do much for me, but psyllium has been my friend for 16 years. Also, are you using a barrier cream after each BM? Preventing the irritation is *much* more effective than treating it after it’s occurred. The steroid cream will eventually cause thinning of the skin, and that won’t be any fun.

Good luck!

Hi, JFill21. It took me almost six months for things to settle down. In the first month I thought it was my new life and it was upsetting and scary, frequency up to 15 times and every five minutes at night. Around the six or eight month mark, it started to get better. I didn't take Imodium longer than a week or two, I think. I also tried Metamucil, but I wanted to normalize it through food intake. I peeled zucchini and baked or roasted it. I ate sweet potato cooked in the microwave in its skin (more nutritious than white potato), cut open and eat the inside, ate lots of fish and chicken, white rice, pasta. I avoided acidic food, nuts, seeds, fruit skins or vegetable skins, and no carbonated sugary drinks. I used my travel bidet bottle and finally installed one on the toilet, and that saved me. Do you know if the burning inside and the spotted blood are caused by fissures?  Hat is painful, I remember it well.  I'm two years now and I have no issues except when I eat something I shouldn't -- lettuce salad or raw veg, or too much carbohydrates. I think my situation settled down due to food and drinking gallons of water. I hope that your issues are because it is still very early days and will settle down. What foods do you eat?

Thanks, Renee! I am trying to experiment.

Scott, I do find that the Meta fiber biscuits do more than the Benefiber, sometimes too much. What's the best time to take, is it with a meal or between a meal or before bed? How do you take psyllium?

Also, I am using ILEX primarily and also Calmoseptine after each BM. I pat dry and reapply. I also use a bidet at home. However, I need to take a sitz bath in the morning and before bed to get some relief since those are high activity times. 

My condition just seems to go on and on without my seeing some improvement. I try to add more fiber, such as whole wheat smooth bread, and I pay for it for days. I long for the day I can just have 8 bms and no issues, and no maintenance.

On top of that, I'm not sleeping well and that's affecting me mentally. I get up 3-4 times a night, half the time with leakage. So I'm always wearing a pad 24/7.  Just getting tired of it since no real improvement.

One last thing, I did see my CC surgeon in February for the same symptoms. I had a pouchoscopy and was told my pouch looks great, just a little inflammation in the anal transition zone which was/is causing the slight bleeding. Does this sound like cuffitis? Or would I be having a lot more bms?  Thanks for the advice you guys, really appreciate it!

Scott, would the fact that I don't have a gallbladder possibly mean higher bile acidity and increased opportunity for inflammation in my anal transition zone?

I remember wearing a pad day and night for leakage for quite some time.  For me things really got better after about 6-8 months or so.  Like you, I had my surgeries in my early 60's.  Calmoseptine worked great for me as well as my bidet. I just think it's that adjustment period we all go through, some more difficult than others.  I remember also making calls to my surgeon's office more frequently in the beginning and looking for suggestions on this forum.  It all helped.  Good luck and hope you're doing better soon.  

I used to use the Metamucil wafers, but I’ve reduced the sugar by switching to powder and using a half dose of sweetened Metamucil and a half dose of unflavored Konsyl. That’s easier for me to drink than pure unflavored psyllium. It mixes best with shaking rather than stirring. I take it before breakfast and before dinner. It help thicken and bulk up the stool, and I find that’s less irritating on the way out. Insoluble fiber, like whole wheat, is a completely different animal. Whole wheat bread has four times as much insoluble fiber as soluble fiber.

I use Lomotil just at bedtime, since that’s when it’s most valuable to me. It helps me sleep through the night almost always. I usually take one, but if things are more active I’ll take two. Lomotil works better for me than Imodium, but others have the opposite experience.

You may have a touch of cuffitis, but it sounds minimal. If the basic mechanical techniques aren’t enough to get you comfortable your doctor might agree to try a mild medication for cuffitis, like Canasa suppositories. I guess it’s possible that the lack of a gall bladder is contributing to your issues. If so, a bile sequestering resin like cholestyramine might help a lot. If you have a preference about sugar vs. artificial sweetener, make sure your doctor knows, since the resins come both ways.

Winterberry, I cook reg oatmeal for breakfast, usually with half a banana cooked in it, and a piece of toast with peanut butter. I was also drinking a Carnation Instant breakfast but cut back for now because of the sugar. I also drink decaf, but have using 1/4 caffeinated without trouble vs pure decaf. Lunch is usually Boars Head turkey and Swiss on a roll, and lately, a cup of instant white rice or pretzels. Dinners are usually soups or stews, plus chicken and maybe a hamburger with canned green beans, white potatoes or carrots. I don’t get home from work until after 6pm so dinner is usually eaten around 7–not the best time because I get tired early (up at 4:30am) so I have to crash around 9-9:30pm. I think I need to try eating less for dinner since it’s always after 7.  My surgeon’s nurse wants me taking BeneFiber 2x a day—mid-morning and mid-afternoon, which I’ve been doing for months now. So that’s about it. I’ve learned a lot on this board and try to follow what has worked for others, so greatly appreciate your replies and advice!

Scott, good suggestions! Thanks! I’ve been wondering about Questran which I first read about on this board. Ill ask about that. I’ll try your other suggestions as well. Fingers crossed, I’m in need of a win.

Hi. I just wanted to add a little bit to the already great information here and offer my encouragement too. I'm about a year and a half post takedown and have been feeling very good. It took a while though. I am WAY better than I was at 5 months. 

I think that my biggest improvement was between months 6-10.  For context -- I'm in my 40s and I was not terribly sick before my surgeries.

The few things that were the biggest help to me:

- Metamucil fiber crackers (I wish they didn't have so much sugar in them, but it's a trade off. They make a huge difference for me.) 1 packet a day. Sometimes I'll have a half of one as a "booster" if I need it. 

- Ilex cream and Calzamine (less menthol-y than the Calmoseptine)

- Buying disposable washcloths that are super soft and putting cold water on them to clean after I go to the bathroom.  This really, really helps. I learned from my gynecologist that cold water is better than hot for dulling the sensation and itchiness. (The cloths I get are: Vakly Dry Wipes Cleansing cloths.) 

- VSL3 probiotic. (I use the prescription strength powder so I can get the high dose that was used in the studies that showed it prevents pouchitis. I think I feel worse when I stop taking it, so I'm sticking with it even though it's expensive and not covered by my current insurance.)

Hang in!  

Thanks for the reassurance and goid ideas Sunflower! When have you found is the best time to eat the Metamucil cracker? 

I eat the Metamucil wafers in the morning. That's also when I take 2 immodium.  I find that now I can get through a day at work and only go once or twice in the afternoon. But last year I was going a lot more at work.

At home in the evening, I have somewhat frequent trips to the bathroom (maybe 4 times?) but if I'm going out for the evening I might take more immodium or have another metamucil wafer. 

Have you tried eating peanut butter? That should help too.

Oh, also, when I was having the worst butt burn, I put epsom salts in a warm (not hot) bath. That always seemed helpful.

I saw that someone already mentioned cholestyramine. My GI mentioned it to me after I'd already been through the worst of the butt burn. I wish I'd known about it in the beginning, but the surgeon's office never told me. It sounds like that could really be something to look into and try. 

Hopefully, you can get the consistency improved and then it won't hurt so much. 

Oh, and the nighttime stuff gets better too! I thought I was going to have to wear a pad forever, but not anymore. 

Have you had your iron and vitamin D levels checked? I had a lot of issues the first year as my body adjusted, and when I learned that iron and vitamin d are imperative to small intestinal health I got checked and was quite deficient in both. I now take vitamin d supplements and liquid iron and it's helped a lot. I hope somewhere in these responses is the answer that's right for you!

Yes it’s all good! I greatly appreciate all comments and suggestions. No one can really know what we’re each experiencing and I know that’s true even among j-pouchers. I want to progress! Speaking of which,  I’m still trying to figure out if the discomfort of my anal tissue is butt burn from my still semi-liquid stools (except right after taking Imodium) or from frequency (9-12x in 24 hours) or from weak pelvic floor muscles as diagnosed by my surgeon. I’m doing the PF exercises and stretches—and it is helping to lessen strain— but man am I tired of the discomfort I get from sitting long periods of time, or with gas build-up or when I know I can’t wait longer to empty the pouch. Once I empty (or pass gas), I’ll feel OK until the next feeling of gas or stool, usually within 3 hours. Any thoughts? Is my body still adapting?

Have you tried Gas-X? I needed it a lot more in the first year than I do now. 

It does sound like your body is still adapting. It sounds like the way I was around month 2 and 3. 

My guess is that the butt burn is from semi-liquid stool and not getting time to heal for a few hours. 

I just took another look at your post about what you're eating and for what it's worth, I have a little trouble with green beans and carrots. Maybe you can mix up your food intake a bit to see if that helps. My best foods for solidifying things are bananas, peanut butter, and the metamucil wafers. I also like banana bread for a snack because it seems better than just eating white bread. (I bake my own -- no nuts; no sugar.)

I really hope you get some noticeable improvement soon.  

Thanks Sunflower!

JFill21, I don't know if you like eggs. After surgery I ate one egg per day to get the high protein that heals damaged tissues, and for the B12 that we lack. Scrambled, soft boiled, whatever, with toast and peanut butter or almond butter, for even more protein and good fats. I cooked carrots until soft because even slightly raw carrots caused pain and frequency. I saved the water used to cook the carrots and drank it. I cut out white and brown sugar because it caused bloating and inflammation (pouchitis). I think I had drastic improvement around the seven or eight month mark. Now I only have to watch raw vegetables (lettuce). 

Thanks Winterberry. I like eggs and will try eating more often for breakfast. I’ve been eating cooked oatmeal with a dollop of plain Greek yogurt and peanut butter toast. I’ll mix it up a little. 

Hi JFILL! Just wondering if you are doing any better. I hope so.

Hey Sunflower! Thanks for asking. I’m better now than I was a month ago. Two weeks ago my surgeon’s nurse prescribed a week of Flagyl which helped calm things down. The butt burn is mostly under control and frequency is down a bit. Still not where I’d like to be at 7 months but haven’t lost my optimism. I continue to do pelvic floor exercises (along with regular exercises and light weights) and trying to add more foods to my diet. I still don’t feel like my pouch is completely emptying in one sitting. I’ll go, sit a little longer, clean up, and invariably my pouch decides to let loose with another round right after I’ve applied Ilex. I guess just the action of applying the paste can relax the PF muscles. 

Seconding the suggestion for psyllium husk powder – the fine stuff. I took a couple of teaspoons mixed with a small amount of water immediately before main meals. I found it had a cushioning effect. Made BMs less liquid and reduced butt burn.

Also, I found things kept improving for the first 12 months. At 6 months my BMs reduced. Hope things continue to improve for you too. A year-long recuperation is quite a project :-)