I notice you didn’t mention diet and I see your signature indicates low doses of lomotil and Imodium. Also your reconnection was only 8 months ago. 

If incontinence and loose stool are your only issues, it seems there is much you can still try. I had all the same issues and stool poured out literally like water. It takes a long time to condition the pouch to behave like a colon, but I also think that time would be greatly shortened if we had more info earlier in our learning journey.

Here’s what’s worked for me:

1. Consistent daily hydration  64 oz water minimum. No caffeine, alcohol, fruit juice, fizzy drinks. There are multiple reasons to eliminate those things: diuretic/dehydrating, irritants, bacteria growth that exacerbate symptoms.

2. Immodium and limodol. You can’t take too much, confirmed by my GI. Before I made multiple diet changes so that I almost never need these now, I took 2-3 of each every four hours and it did wonders. I also was not staying properly hydrated, which likely was part of the problem  

3. Low carb/low sugar diets are widely accepted in controlling symptoms of diarrhea, bloat, gas and bacteria that leads to pouchitis. I cannot begin to tell you the difference when I made this change. I do virtually no carb and no sugar in any form. There are variations like Paleo, etc.

4. Avoid processed foods. They contribute to symptoms. Whole foods are best. Organic if possible. 

5. Food trial and error. This one is always a given and varies person to person. I’ve found I can eat broccoli, spinach and brussel sprouts all day long (as long as I keep hydrated) to get the necessary B12 and folate we need to avoid anemia, but forget lettuce, apples and grapes which increase bathroom runs. I will say I neglected veggies and vitamin supplements until I found what works, so I am now rebuilding deficiencies and fighting fatigue. It takes months to rebuild vitamin B and deficiency can lead to dementia.

A lot of info, I know, but our systems are a temperamental and imperfect balancing act. I’ve had a pouch for 27 years and I am still learning. Info on this board would’ve saved me years if it was available back then. I can say if I gave up on the pouch in 8 months after symptoms similar to yours, it would have been too soon. Pouch function can continue to improve and can take a year or more. It’s also been my experience that doctors do not offer this level of information about things to try. My best learning has come from this board, research and trial and error. 

Hi @BlueFlame!

Thank you for your thorough response. It's nice to hear that you were in a similar position, but you improved over time. That's incredible that you've had your pouch for so long! Out of curiosity about how many BMs do you have now in the day and night? What is the consistency? Do you have urgency?

My surgeon also said it can take 12-18 months for the jpouch to be fully functional. However, he is also telling me that I might need to go back to a stoma. I don't feel ready for that because I think there are more things to try (and I'm also going to see another surgeon and GI for second opinions). 

I hope that it will just be a matter of simple fixes like you described. I'm currently on the Low FODMAP diet, and I try to eat mainly whole foods like chicken, fish, rice, potatoes, etc. I've had a hard time with most fruits and vegetables since getting my jpouch. I like what you said about low sugar though- I can probably do better about this. I totally agree with you about hydration. Luckily my body craves water, so I drink it constantly and I drink much more than I used to before the pouch (probably about 10-12 glasses per day now).

I have been taking 2 Lomotil and 2 Immodium before meals and an additional dose before bed (8 of each per day), so it sounds similar to the every 4 hour amount you described. At times I have even gone up to 12 per day, but I didn't notice any additional benefits. I would say these are pretty high doses, so I think you were noticing the low dose medication in my signature is the Nortriptyline (I'm on 20 mg). 

Thank you for helping to reassure me that it is still early on in the process- I'm trying to stay in that mindset. I've been getting the impression from my doctors that I should be functioning better by now. Honestly I thought I would be too. It's been extremely challenging to get sleep and have energy to work full time. I have an accidents regularly in the day and night which is exhausting and humiliating. I saw a little progress at the very beginning, but I haven't seen progress in the last 6 months or so. I will try to continue playing with diet, but I am concerned that it goes beyond that. 

Happy Thanksgiving!

Best, Stephanie 

Happy Thanksgiving to you, too, Stephanie!

I’m really curious to know why your doc thinks it’s time to consider a reversal? Unless there’s more than what you’ve described, my thoughts are still the same. You went through a lot to earn your pouch. Everyone is different but for me, I’ll exhaust all options before throwing in the towel. And I cannot tell you how many doctors failed me by telling me I should be doing better or they find nothing wrong....or sent me away with just the advice to eat more fiber. It was pretty disasterous until I learned through my own research.

None of what I’ve shared with you was offered to me. You’ll find everything I’ve shared in one form or another on this board or the internet. So, while I value specialists, I’ve learned not to let them be the be all end all corner of knowledge. My take is, just because they don’t know the answer it does not mean there isn’t a solution. I’ve found that unless it’s surgery or a pill, doctors fail more often than not in offering solutions that j pouchers have collectively figured out.

I’m glad you’re also getting a second opinion. But please don’t get discouraged if they still don’t give weight to the suggestions I mentioned. Unless you find a pretty unique specialist, they really do not seem to have a grasp on all the things we can try and have given people success.  

I’d suggest dropping the rice and potatoes. Those carbs give me terrible bloat, gas and urgency. My protocol was no white carbs, but I’ve now eliminated all carbs  because of recurring pouch inflammation and symptoms. Truly though, I’m a believer in no white carbs as a minimum. I’ve recently discovered almond and coconut flours so I don’t feel quite so deprived and tempted to eat things that are disasterous for me. There are so many alternative foods available now.

All that said, my BM frequency has been highly variable depending on whether I behave or not. When my diet is thrown out the window I can end up 10-15 BM per day and miserable. If I follow my largely protein based diet, water and supplements I’ve been at about 5/day. Currently I’m on antibiotics and my disciplined diet. Within 24 hours I was at 2-4 BM/day. I’m not constipated, I just don’t need to go. So I’ve been all over the board with frequency and, like another recent thread about frequency on this board, someone rightly commented it’s hard to come up with the right frequency by comparing to other people. There are so many variables. 

Oh....consistency. If I’m dehydrated, it’s straight water. At my best, it’s sort of heavy paste. Most often, it’s somewhere in between. If I feel urgency I may add immodium and it keeps accidents/leakage at bay. 

Accidents aren’t uncommon, especially early on and at night. I used to wear Stayfree Overnights, especially at night. Sometimes during the day. I found other brands didn’t give enough length in the backside and the materials were irritating to the bottom with moisture issues. Sorry for the details, but this made a huge difference for me. I used these for years, but almost never need to now. I’d have full accidents at night which, yes, affect sleep. I found the pad plus a towel gave me a lot of security. I lost much sleep over worrying about accidents so these little things really help.

All in all, I’d say give your body time and try different things. There’s so much more info and support available these days. You always have the option of a reversal, which some people do choose because they don’t want to deal with things that others find tolerable or manageable. 

It might be worth discussing with the appropriate doctor the potential value of anal manometry, which tests the strength of the anal sphincter. A weak anal sphincter is sometimes the cause of accidents. It doesn’t make any of the other interventions discussed here any less valuable, but it can help focus the consideration of additional treatments.

Thanks for the tip, @Scott F. No one had mentioned anal manometry, so I'll ask about it at my next appointments. If I were to "go with my gut" I would say my muscles are strong, but my challenge is the consistency of the stool. Who knows, though! I will surely ask about this technique- thank you!

@BlueFlame - you are absolutely right about comparisons! We are all unique and it's all about individual progress. That being said, it gives me hope to hear that others with a Jpouch have been able to achieve progress. It's fascinating how diet and hydration can alter your situation so dramatically! 

I agree, it was a big decision to get my pouch and I want to do everything I can to keep it. I think my surgeon and GI have very limited tool boxes- it has been extremely frustrating to me. I have tried all of their recommendations (fiber wafers, Imodium, Lomotil, Tincture of Opium), yet I still have significant issues. It has become clear to me that I need to seek alternate opinions from experts, so in the last few months I have been setting up appointments for a new GI and colorectal surgeon. I also see a wonderful nutritionist and Pelvic floor Physical Therapist. I agree with what you said that some of it will have to be trial and error with foods and drinks. I will continue to experiment, but I have found even on very limited diets I still have issues. I will keep trying different options!

If stool consistency is the issue I think it’s likely to be manageable. Soluble fiber in the right dose can usually get you a heavy paste consistency, which is plenty thick for a healthy sphincter to hold. You can try more than one type (psyllium, Benefiber, Citrucel) to see which works best. I suggest you go with a powder form at mealtime, since that will mix best with the food stream. Tinker with the dose until you get the desired effect, and consider a no-sweetener option, like Konsyl Original. Combining that with a bowel slower, like Lomotil or Imodium (or Tincture of Opium) should provide more time for water absorption, though I’m able to use those (Lomotil, actually) just at bedtime, when it’s most valuable to me.

Is it possible that you’re drinking too much water too quickly? I just about never suggest water reduction for J-pouchers, but it’s possible to overshoot. Also, in the opposite direction, is there enough salt in your diet? In the colon, at least, sodium absorption drives water absorption.

Agreed with Scott on the manometry. Like you, I don’t think I ever had a muscle issue. After my symptom complaints this test was finally suggested. They found no issue but failed to identify a very angry case of pouchitis as the culprit. I was sent away with only advice to take bran and even told to continue it for weeks after I reported it was creating more pain. It was another few years of suffering before I found a doctor who identified pouchitis as the issue. 

Apologies for going on about my experience. My point is that it’s good to keep seeking opinions and trying different things. I’m so glad you are not waiting like I did to get another opinion. 

Thank you both for the ideas and insights. I’m going to keep trying! It shocks me how uninformed the doctors are about managing jpouches. When I had my ostomy I had a visiting nurse and loads of brochures. With the jpouch- nothing. Maybe for some it is an easy transition, but for most it is not. It’s a good thing we have forums like these!!

Same here.  After both my ostomies, I had visiting nurses, nothing after the j-pouch.  I was lucky and had the same nurse both times.  We discussed that I wouldn't have a nurse after takedown.  In my case, if I needed anything, I called my surgeon's office.  They were always very helpful.

Just want to +1 Blueflames post, great diet suggestions. Cutting out all sugar, fruit, honey and any sugar alternatives like stevia was absolutely essential in gaining control over my pouch. I can also advise that taking x2 probiotic capsules 15min before each meal was a game changer.  

Thank you @drone3. I think I will give the sugar free diet a try. I’m a little worried about what will be left to eat since I have a pretty limited palate right now. I suppose it’s worth it to eat mostly protein and veggies if it can make me feel better! Do you find that you are able to eat some sugar now or if you stray you feel the effects?

Thanks for the tip about the probiotics too. Lately, they seem to give me looser stools but I will have to try them 15 mins before meals. 

I didn’t give probiotics a fair shot after feeling bloated/gas. But then learned you have to give them time. What feels like steps back is actually the probiotics working and killing off bad bacteria. Recently I built up the quantity gradually and just accepted it would be a transition. After a few weeks things settled. 

My taste for sugar dropped dramatically after giving it time. If I really want sweet, currently I go for frozen organic strawberries. The little bit of juice when they thaw helps. I’m following a diet that only allows a very small amount of raw honey on occasion. At most I use a teaspoon a couple times a week as I know any sugar and carbs (which turn to sugar) contribute to symptoms. 

I try to focus on what I can eat and be grateful for that. I also try to think about how I have a choice to be well or not. Not a choice I had as much control over with UC. Just tools I use to retrain habits. 

To be honest as soon as i eat something slightly sweet i feel like i'm going to vomit. I will also add that at the time i quit sugar and basically anything sweet I was dealing with some intense bleeding issues from the pouch, after a few months of stopping sugar my Gastro. Dr couldn't believe how healthy my pouch looked, and i never had major bleeding since.

The body has a remarkable way of responding and adapting to what we do and don't feed it. Im not going to sugar coat this (wink) if you want control over your pouch you need to be a ninja warrior, it's really hard, but the gains are huge. 

In terms of diet the best results i had were eating the following staples - eggs, fish, chicken, white rice, and veggies. preferably fresh, organic, free range.

I cut out all - sugar, fruit, alcohol, caffeine, preservatives, any packaged food.

I have gone the extra step of cutting out rice for arthritis reasons, but i think that initially fresh soft white rice is really essential to help the transition.

I’m with DRONE3 on all points ....except the rice. My pouch doesn’t like it. But every pouch has a mind of its own. 

I’ll add about the strawberries and honey.....I’m not convinced they’re ok, even for me, long term because the goal is pouch health. I was hesitant to add these items to this post and wouldn’t necessarily recommend them. It’s the thing I’ve allowed in extremely small amounts and not regularly. I did this only after a very regimented 5 week bowel rest to reset things. 

Agreed on the ninja warrior. For the diet I picked up, the writing said to view this as training like an Olympic athlete. You’re fighting for your health and have a choice behind everything you put in your mouth. The pay offs are huge and as you learn about alternative foods, you don’t feel so limited. 

This reply isn’t sugar coating it either. I don’t mean to sound harsh at all. More, it’s very hopeful. There are people on this board who have huge complications that I’ve been fortunate to be spared. If diet can be a game changer that’s huge.

Yes, fully agree with blueflame everyones response to diet can be different but i think that there is generally a range of common foods that would work for most with a pouch. In terms of rice, brown rice was really bad for me but i could tolerate jasmine and long grain white rice really well and it really helped to bulk up my stools. Just keep in mind that rice is a starch and due to the majority of us having a disbiosis of bad bacteria over the good bacteria , the bacteria bloom off starch and especially sugar.

Thanks for all the weighing in!! It really goes to show that diet plays a huge role (even though physicians don't emphasize it enough) and each of us responds slightly differently to the same foods! 

I hope I didn't come across as a whiner about keeping to a strict diet. Honestly, I find strict diets easier to stick to than wishy-washy ones! I was on SCD for 5+ years while I had UC and although it was a ton of work, I somewhat enjoyed being a "pioneer woman" making all my own food from scratch. I never ate processed foods or sugar. However, at that time my anatomy was entirely different and I was able to tolerate raw vegetables and flavorful ingredients like garlic and onions. Life with a JPouch is completely foreign to me, but all I know is that everything I used to know has been thrown out the window, plus my pouch is continuing to evolve. I'm looking forward to trying out different dietary modifications to find the right fit for my pouch. 

However, I also want to mention that this conversation has somehow turned into one solely about diet. I'm going to try my best to control symptoms with diet, but I think there is more to it in my case. Today I had my second opinion appointment with a new surgeon. He was great! He actually did a small scope on the spot and sent in some biopsies. He did see a bit of inflammation and noticed my body seemed to be a little spastic. I have a feeling there is more to my situation. I'll try to post here when I have a better sense of what is going on in case it can help others! 

Be well! 

For sure you have a lot of options to explore as given in other posts and you should exhaust your options.  Incontinence was the reason I had my pouch removed and now have an end ileo. I lasted 18 months tried many of the things suggested, the only thing that really helped was tincture of opium. I kept looking for the magic bullet(s). That I never found it doesn't mean you wont. I could have continued living with the incontinence but I saw that my life was closing in, that I was not doing things, not going places and when I did I  had to always be thinking about my issues.  Really it just was taking control of my life. I weighed that against life with the external appliance. For me my temp loop ileo was not bad so I knew that end ileo would very likely be better (it is) but that even the quality of life afforded by the loop would be much better than what I was experiencing. It has turned out to a good choice for me. I think every one in this situation has to individually weigh the various issues and the weight of the issues will vary on an individual basis. I wish you good luck as you work through this.

I STILL have minor leakage issues and my takedown of this second pouch was almost 2 years ago now. I was told before the surgery that leakage may occur due to this being second pouch and also the mucousectomy. My surgeon for redo was Remzi. I tried Metamucil and Benefiber last year with no real help, I think it made it worse, but maybe I used too much water? I might try again with less. Or try the Metamucil wafers as well. I had the anal manometry test right before takedown and all was good so maybe a nerve issue? Should I have that test again and if something is not right with the test what are the solutions or therapies to try?"

Thanks @chiromancer. It sounds like you made the right choice given your circumstances. I’m sorry your jpouch never fully cooperated, but I’m glad you have your life back now. I agree that it will be worthwhile to exhaust my options, but it’s nice to know there’s another solution always there if I need it. 

@Pouchomarx wow, that must be hard still having leaking issues. I don’t have the answers, but I hope you find them soon. I’ve been really pleased with seeing new doctors for second opinions and maybe that can help you get more advice from a different perspective. 

Just an update to those of you who helped me out above. I met my new surgeon on Monday and he was very kind and thorough. He even scoped me in the office. The biopsy came back today and it turns out I do have pouchitis after all. This explains a lot about my symptoms and just goes to show it’s important to get another set of eyes on your case. I hope antibiotics will help me out, who knows, there could be multiple issues at play!

be well all!

JourneyToWellness posted:

Thanks @chiromancer. It sounds like you made the right choice given your circumstances. I’m sorry your jpouch never fully cooperated, but I’m glad you have your life back now. I agree that it will be worthwhile to exhaust my options, but it’s nice to know there’s another solution always there if I need it. 

@Pouchomarx wow, that must be hard still having leaking issues. I don’t have the answers, but I hope you find them soon. I’ve been really pleased with seeing new doctors for second opinions and maybe that can help you get more advice from a different perspective. 

Just an update to those of you who helped me out above. I met my new surgeon on Monday and he was very kind and thorough. He even scoped me in the office. The biopsy came back today and it turns out I do have pouchitis after all. This explains a lot about my symptoms and just goes to show it’s important to get another set of eyes on your case. I hope antibiotics will help me out, who knows, there could be multiple issues at play!

be well all!

I see Dr Shen at Cleveland Clinic, he is the top jpouch doctor in the country if not the world.

Pouchomarx posted:

JourneyToWellness posted:

Thanks @chiromancer. It sounds like you made the right choice given your circumstances. I’m sorry your jpouch never fully cooperated, but I’m glad you have your life back now. I agree that it will be worthwhile to exhaust my options, but it’s nice to know there’s another solution always there if I need it. 

@Pouchomarx wow, that must be hard still having leaking issues. I don’t have the answers, but I hope you find them soon. I’ve been really pleased with seeing new doctors for second opinions and maybe that can help you get more advice from a different perspective. 

Just an update to those of you who helped me out above. I met my new surgeon on Monday and he was very kind and thorough. He even scoped me in the office. The biopsy came back today and it turns out I do have pouchitis after all. This explains a lot about my symptoms and just goes to show it’s important to get another set of eyes on your case. I hope antibiotics will help me out, who knows, there could be multiple issues at play!

be well all!

I see Dr Shen at Cleveland Clinic, he is the top jpouch doctor in the country if not the world.

and the leakage is not bad, I wear a very small pad and sometimes I have a spot on it and sometimes not. Its not like I cant hold it or I am pooping my pants. If it ever comes to that I will go back to permanent ostomy.