You need a proper diagnosis, I think. It might just be pouchitis, which is likely because of the antibiotic response, but perhaps it’s something else. Pain alone isn’t the usual pouchitis presentation. Do you have urgency, frequency, or leakage with the pain?

It’s much too early for you to presume Cipro will fail, particularly because you aren’t (I think) taking it all the time, and you might not even have pouchitis. In any case, for me adding Flagyl to Cipro did the trick when Cipro alone failed after 5-6 years of constant use. This worked even though Flagyl alone never worked for me at all. There are other antibiotics to try (e.g. rifaximin), and if they all fail then biologic meds usually do the trick.

Pouches can be remade, but only with a good reason to do so. Again, a proper diagnosis is critical.

Diet probably won’t help, IMO, except to avoid foods you know you don’t tolerate well. FMT (fecal microbiota transplant) helps with persistent C. Diff infections, but it doesn’t help with poorly understood pain, or even well-documented pouchitis.

Do you have a good gastroenterologist? What do they think?

Scott F posted:

You need a proper diagnosis, I think. It might just be pouchitis, which is likely because of the antibiotic response, but perhaps it’s something else. Pain alone isn’t the usual pouchitis presentation. Do you have urgency, frequency, or leakage with the pain?

Hi Scott, thanks for the reply!

The only time I leak are if I eat just before bed or if I go into deep sleep. As such, I think my body no longer lets me hit REM because I always wake up really tired and always dream of using a toilet so that when I actually sit at the toilet, I get up and actually use it

It’s much too early for you to presume Cipro will fail, particularly because you aren’t (I think) taking it all the time, and you might not even have pouchitis. In any case, for me adding Flagyl to Cipro did the trick when Cipro alone failed after 5-6 years of constant use. This worked even though Flagyl alone never worked for me at all. There are other antibiotics to try (e.g. rifaximin), and if they all fail then biologic meds usually do the trick.

I just figure that since all meds eventually stop working, and I see that flagyl isn't doing it's job, that it will soon happen again. Just something I'm nervous about since I'm on the next step.

Pouches can be remade, but only with a good reason to do so. Again, a proper diagnosis is critical.

Remade as in, get another ileo and have a bag for another few months and then do the reversal again? They took out so much rectum that I don't even know if it's possible

Diet probably won’t help, IMO, except to avoid foods you know you don’t tolerate well. FMT (fecal microbiota transplant) helps with persistent C. Diff infections, but it doesn’t help with poorly understood pain, or even well-documented pouchitis.

I feel like I don't even know what foods are good and bad. For example, I will eat mango which is fine one day... and then the next it doesn't work. Also, I cannot poop whenever I want. I will have the urge and feel full and it won't release. Do you have this problem too?

Do you have a good gastroenterologist? What do they think?

I had an ok one. When I first used him he was highly recommended, but so was my surgeon. Both worked together. However, my surgeon SUCKED. I have had a few post-ops in order to fix mistakes he made. I will meet with a new one on Fed 3 so hopefully it works out.

It doesn't sound like you have tried probiotics yet? It's the only thing keeping me off antibiotics and sometimes I still need them but often enough I can increase my probiotics and keep off antibiotics. It seems odd that antibiotics help if it isn't related.

You may also want to try taking both antibiotics at the same time, rather than one at a time. To my knowledge I have never been on just one and my doctor is surprised when I tell him that many people on this forum only get on one. Together they work better.

PouchLogic posted:

It doesn't sound like you have tried probiotics yet? It's the only thing keeping me off antibiotics and sometimes I still need them but often enough I can increase my probiotics and keep off antibiotics. It seems odd that antibiotics help if it isn't related.

You may also want to try taking both antibiotics at the same time, rather than one at a time. To my knowledge I have never been on just one and my doctor is surprised when I tell him that many people on this forum only get on one. Together they work better.

Hi PouchLogic,

I haven't tried heavy probiotics. Are we talking about something like VSL3? If so, is there a brand? Is it covered by most insurances (Canada)? What does it do for you, exactly? Heightened energy? Better sleeping? Less pain?

I know you won't know a lot of these answers but just in case you happen to be Canadian or something. But I have been reading and VSL3 is like 120 a month so I wanted to make sure it's definitely a difference maker if not covered by insurance.

Thanks for your help though.

The pain comes harder and more often now so something I just want to drive off the road sometimes so hopefully I can figure something out soon.

My high-dose VSL #3 is over $600/month at US prices. You might get value from a much lower dose. I believe VSL #3 is no longer available in Canada, but Visbiome can be bought there,  and that’s pretty similar (and maybe better). I’d be surprised if your health insurance covered it, though I was able to get mine (in the US) to cover it after a year-long fight. It makes a difference for me, and helped me delay antibiotics by about a year.

Most people can get a pouch re-do, if that’s what’s needed, but most people don’t need a pouch re-do. Yes, the process generally creates another temporary loop ileostomy. You’re now reporting a sometimes inability to empty your pouch, which is a key symptom. I’m not surprised that you’re in pain from that, since the pressure will build up behind whatever is preventing emptying. You might have a pouch prolapse or stricture.

When was your last pouchoscopy? I think you need one. Diagnosing a prolapse is often done with a test called defecography, which images the pouch dynamically while you are attempting to empty it. It’s a bit embarrassing but otherwise not a very big deal. A complicating factor is that this wouldn’t explain why you feel better when taking an antibiotic, unless the stool stasis is causing pouchitis, which makes everything a bit more tender and twitchy inside.

I'm Canadian, I'll have to add it to my signature. Visbiome is what I currently take, I did use vsl3 but stopped due to the cost and issues Scott mentioned. I only use it once a day regularly, more if I feel like it isn't working. If pouchitis is causing the pain this may help, but it isn't a miracle pain reliever. If it helps your gut you may sleep better which will also increase your energy.

It cost me about 100$ CND a month, for once a day. You may be able to get coverage, it's unlikely from what I understand from most people but good luck. If you get a script for the double strength you might have better luck with coverage though, just ask your company.

Good luck

PouchLogic posted:

I'm Canadian, I'll have to add it to my signature. Visbiome is what I currently take, I did use vsl3 but stopped due to the cost and issues Scott mentioned. I only use it once a day regularly, more if I feel like it isn't working. If pouchitis is causing the pain this may help, but it isn't a miracle pain reliever. If it helps your gut you may sleep better which will also increase your energy.

It cost me about 100$ CND a month, for once a day. You may be able to get coverage, it's unlikely from what I understand from most people but good luck. If you get a script for the double strength you might have better luck with coverage though, just ask your company.

Good luck

I will research and then call my insurance company. Is that the name of the medication, or the name of the company (ie: tissues vs kleenex)? I want to ask my insurance all the right questions.

$100 a month isn't bad when health is involved so even if they don't cover it, I'm sure it's well worth it.

Do you have a food bio anywhere? I am always curious to see what people eat and steps they took to eat certain foods. For example, my body doesn't tolerate corn, fibrous foods and especially greens, but some do.

I would love to eat a plant-based diet (get away from carbs mostly) but cannot tolerate it. So if, for example, doing a 100 jumping jacks and then punching a turtle meant that i could tolerate greens, I would do that! Well, maybe not the turtle part.

Thanks for the reply

Scott F posted:

My high-dose VSL #3 is over $600/month at US prices. You might get value from a much lower dose. I believe VSL #3 is no longer available in Canada, but Visbiome can be bought there,  and that’s pretty similar (and maybe better). I’d be surprised if your health insurance covered it, though I was able to get mine (in the US) to cover it after a year-long fight. It makes a difference for me, and helped me delay antibiotics by about a year.

Most people can get a pouch re-do, if that’s what’s needed, but most people don’t need a pouch re-do. Yes, the process generally creates another temporary loop ileostomy. You’re now reporting a sometimes inability to empty your pouch, which is a key symptom. I’m not surprised that you’re in pain from that, since the pressure will build up behind whatever is preventing emptying. You might have a pouch prolapse or stricture.

When was your last pouchoscopy? I think you need one. Diagnosing a prolapse is often done with a test called defecography, which images the pouch dynamically while you are attempting to empty it. It’s a bit embarrassing but otherwise not a very big deal. A complicating factor is that this wouldn’t explain why you feel better when taking an antibiotic, unless the stool stasis is causing pouchitis, which makes everything a bit more tender and twitchy inside.

Wow, there's a lot to digest there. I feel like I haven't seen a surgeon or gastro half as thorough as you, and as such, don't know what questions to ask. For example, I have never heard of defecography before.

Do you have a set of questions you ask your doctor/gastro? I feel like I have no idea wtf I'm doing now and would like to become better educated on what I should actually be doing. I replied to someone how I cannot tolerate certain foods yet know people know can, so I was wondering if there are strategies to getting it done.

I have had my pouch for years and feel sooo darn stupid.

Also, I had never heard of taking flagyl and cipro together. I was in so much pain (doctor is off) that I went to a walk-in today and asked to get cipro. He asked if I wanted flagyl as well. I told him our conversation and he was dumbfounded that no one had mentioned that before. So yeah, I will now take both.

I have 2 weeks of flagyl (2x a day) and 1 week of cipro (1x a day). If my dosage is wrong, though, please let me know.

Again, thank you sooo very much for this help. I am incredibly thankful.

You haven’t told us your antibiotic dosages, just the frequency. What strength tablets are you taking? There are some disadvantages to taking both meds at once, but some docs do it routinely for pouchitis. I avoided it for as long as I could, since it doubles the side effects and makes it very hard to tell which med is causing trouble if you run into trouble.

You still don’t have a diagnosis, just a collection of symptoms, medications, and dietary wistfulness. It’s kind of important, so I’ll ask again: when was your last pouchoscopy.

Twice a day is normal. Dosage I don't know, I think I take 500mg of each though.

My diet is not normal, I need higher carbs and calories. I have trouble keeping weight on. I don't eat many veggies, almost no green ones, anything that normally causes gas I avoid. I honestly think that everyone is different enough that we all need to figure out what works best for you. Try to eat healthier but don't eat what causes you issues. When I am feeling well I can eat anything without much issue though.

Please don't punch any turtles but I get what you are saying. If I could just stop eating and not lose weight I'd try something but at this point I just resign myself to low activity and eat as much as I can tolerate.

Good luck

PouchLogic posted:

Twice a day is normal. Dosage I don't know, I think I take 500mg of each though.

My diet is not normal, I need higher carbs and calories. I have trouble keeping weight on. I don't eat many veggies, almost no green ones, anything that normally causes gas I avoid. I honestly think that everyone is different enough that we all need to figure out what works best for you. Try to eat healthier but don't eat what causes you issues. When I am feeling well I can eat anything without much issue though.

Please don't punch any turtles but I get what you are saying. If I could just stop eating and not lose weight I'd try something but at this point I just resign myself to low activity and eat as much as I can tolerate.

Good luck

Darn eh? Everything I eat leads to weight. Most people I have met say they're in your boat, though.

Not sure wtf happened to me lol

Scott F posted:

You haven’t told us your antibiotic dosages, just the frequency. What strength tablets are you taking? There are some disadvantages to taking both meds at once, but some docs do it routinely for pouchitis. I avoided it for as long as I could, since it doubles the side effects and makes it very hard to tell which med is causing trouble if you run into trouble.

You still don’t have a diagnosis, just a collection of symptoms, medications, and dietary wistfulness. It’s kind of important, so I’ll ask again: when was your last pouchoscopy.

For antibiotics I take flagyl 500mg per pill (so 1,000mg per day) and cipro 500mg (500mg per day).

Last pouchoscopy was in October of 2018. I am overdue. Will see a gastro on Feb. 3 to setup another appointment.

In terms of diagnosis, I don't know what you mean. I had severe UC for many years and now have a pouch. I had a very large abscess which is what I think my still be affecting my bowel movements. If there are any questions I should be asking on the 3rd in order to answer your questions, please do let me know. Obviously I don't know wtf is going on.

Here’s what I mean by diagnosis: you might have *pouchitis*, which is what’s most commonly treated with antibiotics. You might have a structural blockage, like *pouch prolapse*, a *stricture*, or some current or residual effect from the *abscess*. Unless you have a named condition (or more than one) then the treatment can’t be chosen properly. It’s likely that your doctor has a possible diagnosis in mind and just hasn’t told you what it is yet, perhaps due to uncertainty. Extreme pain isn’t typical of pouchitis. So the question is “Doc, what do you think I might have going on?”

peji911 posted:

Hi everyone,

Since surgery, my left side has always given me problems. I cannot say I have ever 'felt' my right side, but my left side feels as though I can feel where they made the cut and sewed it back on.

I have had the j-pouch for 6 years now and it seems to be getting worse. Whenever I felt this I would take flagyl and usually improve within the two weeks. However, last year I was in Europe and I had a bad episode. We went for 5 weeks and 2 1/2 were spent in hospital/house near a toilet.

Eventually only cipro worked, which I had not taken at the time.

Well, in the times I have had pain since, I start with flagyl and end up on cipro. This worries me because I have always felt that my body adapts to my meds and then they stop working.

So my questions are:

1. What comes after cipro? Any other meds?

2. Can you have a 'resurgery'? I think they attached a rotten part of the intestine to my rectum which is what's causing all this paid. Can I get another temp ileo or is it that once you're on your second, it's permanent? Im only 35 (have been feeling with UC/jpouch since my late teens) so would actually like to get to enjoy life without a permanent bag.

3. Any difference in how to treat the pain I'm having vs legit pouchitis? I really don't believe it's necessarily pouchitis, even though cipro (and flagyl before) seems to work.

4. I feel that I have tried every diet to curb the pain but nothing seems to work. Anyone have any websites/books/charts that have helped them curb pain?

5. Are there any other surgeries/therapies that have helped you? I read about one where they take the stool of someone healthy and put it into you. Anyone tried this or another?

6. What are you guys doing about low-energy?

7. Finally, I feel that I am ALWAYS hungry. Is there any way to curb appetite? Ideally I would like to do OMAD so that I'm not always in the bathroom, but again, I am always hungry!

Thank you and have a blessed New Year everyone!

 

 

 

 Hi there  im new here to this site and this is my first post (reply)  Im curious about your comment of “always being hungry”

Using pure logic, Im going to guess that your hunger and pain might somehow be related to malabsorption. For ex: if your  jpouch was kinked or otherwise compromised, you would have pain  subsequently, you would also have poor absorption (at least in that region)  Have you had any imaging done for that region (by a competent provider??)  i say “competent” because I had an doctor who ordered imaging for an issue I had (post jpouch creation) and proceeded to go over the image with me and showed me how my colon was doing well  Ummm  really?  I had no colon at that time so be selective  

in re to meds, I found a “magic bullet” that worked for me 5 years ago.Every time I was put on augmentin for a resp or sinus infection, I noticed an extreme change to bowel patterns  stools were nearly formed (as I was prior to diagnoses of UC) and freq went from 6-8x/day to 2/-3x/day  in short, my GI provider agreed to prescribe this long term and I have been on it daily for 5+ years. I am an RN so Im fully aware of the potential consequences of long term antibiotic use but Im a fan of treating whats a problem now vs consequences/ potential issues later  

probiotics never did work for me  ive tried the VSL and everything else including activia yogurt. I know most have great results with probiotics but I suppose im the anomaly.  Lastly, the other “magic bullet” I have found for rectal burning (and I realize this isnt your region of pain but I felt compelled to share this) is Dibucaine (aka NUPERCAINAL) I have a long hx of rectal burning esp with dairy products and this cream has done wonders for that  

best of luck my friend but Im going to suggest some imaging to start and DO NOT BE AFRAID TO TRAVEL FOR SECOND OR EVEN THIRD OPINIONS. IM ASTOUNDED AT WHAT I HAVE FOUND BY SEEING OTHER PROVIDERS.  OFTENTIMES THESE ISSUES COME DOWN TO LOGIC AND SOME PROVIDERS TEND TO OVERTHINK THEM OR WORSE YET, USE PAST EXPERIENCE AS A RULE.  Big Mistake for them as everyone is different  You may even do better with a PA or NP vs an M.D.  

Scott F posted:

Here’s what I mean by diagnosis: you might have *pouchitis*, which is what’s most commonly treated with antibiotics. You might have a structural blockage, like *pouch prolapse*, a *stricture*, or some current or residual effect from the *abscess*. Unless you have a named condition (or more than one) then the treatment can’t be chosen properly. It’s likely that your doctor has a possible diagnosis in mind and just hasn’t told you what it is yet, perhaps due to uncertainty. Extreme pain isn’t typical of pouchitis. So the question is “Doc, what do you think I might have going on?”

Gotcha. I'll hopefully know that information soon. I meet with my gastro on Feb 3 and hopefully I can expedite a scope. 

Is it ok to message you when it's done to get your opinion based on your history?

Christopher8 posted:

peji911 posted:

Hi everyone,

Since surgery, my left side has always given me problems. I cannot say I have ever 'felt' my right side, but my left side feels as though I can feel where they made the cut and sewed it back on.

I have had the j-pouch for 6 years now and it seems to be getting worse. Whenever I felt this I would take flagyl and usually improve within the two weeks. However, last year I was in Europe and I had a bad episode. We went for 5 weeks and 2 1/2 were spent in hospital/house near a toilet.

Eventually only cipro worked, which I had not taken at the time.

Well, in the times I have had pain since, I start with flagyl and end up on cipro. This worries me because I have always felt that my body adapts to my meds and then they stop working.

So my questions are:

1. What comes after cipro? Any other meds?

2. Can you have a 'resurgery'? I think they attached a rotten part of the intestine to my rectum which is what's causing all this paid. Can I get another temp ileo or is it that once you're on your second, it's permanent? Im only 35 (have been feeling with UC/jpouch since my late teens) so would actually like to get to enjoy life without a permanent bag.

3. Any difference in how to treat the pain I'm having vs legit pouchitis? I really don't believe it's necessarily pouchitis, even though cipro (and flagyl before) seems to work.

4. I feel that I have tried every diet to curb the pain but nothing seems to work. Anyone have any websites/books/charts that have helped them curb pain?

5. Are there any other surgeries/therapies that have helped you? I read about one where they take the stool of someone healthy and put it into you. Anyone tried this or another?

6. What are you guys doing about low-energy?

7. Finally, I feel that I am ALWAYS hungry. Is there any way to curb appetite? Ideally I would like to do OMAD so that I'm not always in the bathroom, but again, I am always hungry!

Thank you and have a blessed New Year everyone!

 

 

 

 Hi there  im new here to this site and this is my first post (reply)  Im curious about your comment of “always being hungry”

Using pure logic, Im going to guess that your hunger and pain might somehow be related to malabsorption. For ex: if your  jpouch was kinked or otherwise compromised, you would have pain  subsequently, you would also have poor absorption (at least in that region)  Have you had any imaging done for that region (by a competent provider??)  i say “competent” because I had an doctor who ordered imaging for an issue I had (post jpouch creation) and proceeded to go over the image with me and showed me how my colon was doing well  Ummm  really?  I had no colon at that time so be selective  

in re to meds, I found a “magic bullet” that worked for me 5 years ago.Every time I was put on augmentin for a resp or sinus infection, I noticed an extreme change to bowel patterns  stools were nearly formed (as I was prior to diagnoses of UC) and freq went from 6-8x/day to 2/-3x/day  in short, my GI provider agreed to prescribe this long term and I have been on it daily for 5+ years. I am an RN so Im fully aware of the potential consequences of long term antibiotic use but Im a fan of treating whats a problem now vs consequences/ potential issues later  

probiotics never did work for me  ive tried the VSL and everything else including activia yogurt. I know most have great results with probiotics but I suppose im the anomaly.  Lastly, the other “magic bullet” I have found for rectal burning (and I realize this isnt your region of pain but I felt compelled to share this) is Dibucaine (aka NUPERCAINAL) I have a long hx of rectal burning esp with dairy products and this cream has done wonders for that  

best of luck my friend but Im going to suggest some imaging to start and DO NOT BE AFRAID TO TRAVEL FOR SECOND OR EVEN THIRD OPINIONS. IM ASTOUNDED AT WHAT I HAVE FOUND BY SEEING OTHER PROVIDERS.  OFTENTIMES THESE ISSUES COME DOWN TO LOGIC AND SOME PROVIDERS TEND TO OVERTHINK THEM OR WORSE YET, USE PAST EXPERIENCE AS A RULE.  Big Mistake for them as everyone is different  You may even do better with a PA or NP vs an M.D.  

 

Thanks for the reply. I will have a meeting with a new gastro on Feb 3. I met him before. He's an older guy who was very chill. Wasn't much for talking so I might have to see out another gastro.

I live an hour outside Toronto, which equals 2-3 hours during working hours. But that might be where I need to go.

As for Feb 3, I will bring up those products you mention. I really do appreciate it.

Any other strategies for food digestion as an RN who has probably seen a lot?

peji911 posted:

Scott F posted:

Here’s what I mean by diagnosis: you might have *pouchitis*, which is what’s most commonly treated with antibiotics. You might have a structural blockage, like *pouch prolapse*, a *stricture*, or some current or residual effect from the *abscess*. Unless you have a named condition (or more than one) then the treatment can’t be chosen properly. It’s likely that your doctor has a possible diagnosis in mind and just hasn’t told you what it is yet, perhaps due to uncertainty. Extreme pain isn’t typical of pouchitis. So the question is “Doc, what do you think I might have going on?”

Gotcha. I'll hopefully know that information soon. I meet with my gastro on Feb 3 and hopefully I can expedite a scope. 

Is it ok to message you when it's done to get your opinion based on your history?

Absolutely!  Im a 44 yo with 11 years of pouch status. Im an RN today because of that experience and very grateful for it. Best of luck pal

peji911 posted:

Christopher8 posted:

peji911 posted:

Hi everyone,

Since surgery, my left side has always given me problems. I cannot say I have ever 'felt' my right side, but my left side feels as though I can feel where they made the cut and sewed it back on.

I have had the j-pouch for 6 years now and it seems to be getting worse. Whenever I felt this I would take flagyl and usually improve within the two weeks. However, last year I was in Europe and I had a bad episode. We went for 5 weeks and 2 1/2 were spent in hospital/house near a toilet.

Eventually only cipro worked, which I had not taken at the time.

Well, in the times I have had pain since, I start with flagyl and end up on cipro. This worries me because I have always felt that my body adapts to my meds and then they stop working.

So my questions are:

1. What comes after cipro? Any other meds?

2. Can you have a 'resurgery'? I think they attached a rotten part of the intestine to my rectum which is what's causing all this paid. Can I get another temp ileo or is it that once you're on your second, it's permanent? Im only 35 (have been feeling with UC/jpouch since my late teens) so would actually like to get to enjoy life without a permanent bag.

3. Any difference in how to treat the pain I'm having vs legit pouchitis? I really don't believe it's necessarily pouchitis, even though cipro (and flagyl before) seems to work.

4. I feel that I have tried every diet to curb the pain but nothing seems to work. Anyone have any websites/books/charts that have helped them curb pain?

5. Are there any other surgeries/therapies that have helped you? I read about one where they take the stool of someone healthy and put it into you. Anyone tried this or another?

6. What are you guys doing about low-energy?

7. Finally, I feel that I am ALWAYS hungry. Is there any way to curb appetite? Ideally I would like to do OMAD so that I'm not always in the bathroom, but again, I am always hungry!

Thank you and have a blessed New Year everyone!

 

 

 

 Hi there  im new here to this site and this is my first post (reply)  Im curious about your comment of “always being hungry”

Using pure logic, Im going to guess that your hunger and pain might somehow be related to malabsorption. For ex: if your  jpouch was kinked or otherwise compromised, you would have pain  subsequently, you would also have poor absorption (at least in that region)  Have you had any imaging done for that region (by a competent provider??)  i say “competent” because I had an doctor who ordered imaging for an issue I had (post jpouch creation) and proceeded to go over the image with me and showed me how my colon was doing well  Ummm  really?  I had no colon at that time so be selective  

in re to meds, I found a “magic bullet” that worked for me 5 years ago.Every time I was put on augmentin for a resp or sinus infection, I noticed an extreme change to bowel patterns  stools were nearly formed (as I was prior to diagnoses of UC) and freq went from 6-8x/day to 2/-3x/day  in short, my GI provider agreed to prescribe this long term and I have been on it daily for 5+ years. I am an RN so Im fully aware of the potential consequences of long term antibiotic use but Im a fan of treating whats a problem now vs consequences/ potential issues later  

probiotics never did work for me  ive tried the VSL and everything else including activia yogurt. I know most have great results with probiotics but I suppose im the anomaly.  Lastly, the other “magic bullet” I have found for rectal burning (and I realize this isnt your region of pain but I felt compelled to share this) is Dibucaine (aka NUPERCAINAL) I have a long hx of rectal burning esp with dairy products and this cream has done wonders for that  

best of luck my friend but Im going to suggest some imaging to start and DO NOT BE AFRAID TO TRAVEL FOR SECOND OR EVEN THIRD OPINIONS. IM ASTOUNDED AT WHAT I HAVE FOUND BY SEEING OTHER PROVIDERS.  OFTENTIMES THESE ISSUES COME DOWN TO LOGIC AND SOME PROVIDERS TEND TO OVERTHINK THEM OR WORSE YET, USE PAST EXPERIENCE AS A RULE.  Big Mistake for them as everyone is different  You may even do better with a PA or NP vs an M.D.  

 

Thanks for the reply. I will have a meeting with a new gastro on Feb 3. I met him before. He's an older guy who was very chill. Wasn't much for talking so I might have to see out another gastro.

I live an hour outside Toronto, which equals 2-3 hours during working hours. But that might be where I need to go.

As for Feb 3, I will bring up those products you mention. I really do appreciate it.

Any other strategies for food digestion as an RN who has probably seen a lot?

The best strategies are the ones your body TELLS you about. I can eat salads and hot wings with no issues at all. Thats rare I understand but its just me. I cannot do dairy with out series consequences an hour or 2 later. 
i will say that if your stools become very loose, you will inevitably bring some gastric acid with it. Your toilet will be have alot of yellow to the stool if thats the case. That will burn badly on anus or rectal cuff. Use the nupercainal at that time ir sit in hot bathtub. White rice (albeit, not the most nutritious) often thickens up stool for me (as does instant potatoes) and i will eat those when i have bouts of diarrhea or very loose stools. Lastly, 2 products I have pts of mine using (and i do too) called Questran or Colystyramine is successful at correcting loose stools. The other is Lomotil or diphenoxylate atropine. The former is a drug used to lower cholesterol however, its biggest side effect is constipation. Lomotil is the very component used in oxycodone/hydrocodone that causes constipation; hence, it reverses the liquid stools. 
A suggestion on dehydration:

do not drink water in large amts in short periods of time. Yes u need to replace fluids but do it with hundreds of sips and not gulping. Remember, your small intestine cannot absorb water in the same fashion your large could. 20% might get to where it neede to be but the other 80% will go straight thru you and will pull gastric acid with it. OUCH!!  I also dislike the recommendations of those who suggest gatorade for rehydration. Its built for athletes who lose fluid and electrolytes via activity. Thats not us. Try pedialyte instead. Its gentle and is oftentimes more appropriate. 

A lot of your suggestions I have never heard of so will research right away.

A friend of my parents had this surgery in 2000. Same surgeon. He can eat anything. He takes a a stronger version of Metamucil and says he feels great. He gave me some. I took it for 3 days or so and had the worse pain ever. That being said, I can't poop when I feel it either. I have to 'catch' my poops as I can sit on the toilet for hours and hours and nothing comes out. Not sure if it's related to the abscess I had or something out.

If my kids were older I think I would have ended it a long time ago. I am constantly in pain, tired, can't pass gas unless facing down pressing on my stomach, can't eat almost anything without pain. It's getting harder and harder, not easier as many people suggest.

You need a second opinion. Plain and simple. Whatever it takes, you need to get to a reputable clinic like Cleveland clinic. You have something going on that just doesnt make sense. I wish u the best.