Im lost, maybe someone can help me sort this out?

Manny
I had several post op issues but leaking was not one of them. I had a lot of burning and constant anal pain. My surgeon put me on antibiotics even before takedown as the only time I did experience leakage was prior to takedown and he thought it coukd be diversionary pouchitis ( no scope at that time). I was on antibiotics most am entire year or more after takedown. I have had my pouch scoped numerous times within that first year and after even having biopsies taken more than once to confirm pouchitis. My surgeon was able to diagnose mild pouchitis right in his office with the scope.
I am not sure whether you have pouchitis or not and cannot recall how long it has been since your takedown, but going into your pouch to look after should not be an issue especially with the symptoms you are describing. I am the queen of pouchiscopies since takedown (prob 6 or more in two years ) and have bad no issues from them.

I am befuddled by your MD as well. My doctor did a digital exam in his office and determined I had pouchitis. He did not give me a sedative or anything. Just "grin and brace" yourself routine.

My symptoms prior to his FINALLY doing an exam:

Frequency - progressively improving months 1-4, but not as well as he would have liked.

Low grade temp - do you get sudden "hot flashes" of being extremely hot? Take your temperature during those times. I had constant 99.1 months 1-3 and then intermittent hot flashes increased and my temp was 99.9.

Night time incontinence - started in month 4. Suffered for over a month, then I started to self-medicate with 2 Advil PM's at night.

Bleeding - after two weeks of my self medication.

Called my surgeon and he wanted to see me immediately (the next day), he did his exam and gave me an Rx for Flagyl.

What's his deal? If you have a sympathetic primary MD, call him or get a referral to a GI who will see patients with a pouch.

pouchitis cant be confirmed with a digital exam, cuffitis can be though.

I am going to call my surgeon and ask for a course of cipro and flagyl, if he is unwilling.. I will contact my primartu care physician (which works in the same office) I'm sure he will give it to me... I don't know much about pouchitis, cuffitis or any of that... All I know is this surgery has decreased my quality of life because I never had leaking issues pre colectomy... I am 29 years old, not married, no kids and I don't even feel like going out or dating.... Its ruining my life!

Manny-
If your surgeon won't consider a pouchitis diagnosis, then he's really unlikely to react well to being told what to prescribe to treat it. I'm not defending him, just making an observation. This early after takedown there are still other possible explanations for what you're going through (and I'm sorry you're going through it!).

1) Are you using anything like Metamucil? If so, how much and how often?
2) Are you doing kegels? Sphincter tone is a big deal, and I think it matters even more at night.
3) Are you taking Lomotil or Imodium at bedtime? Eleven years out I still tak a Lomotil at bedtime.
4) People get different results from different kinds of foods in the evening. Are you exploring whether that has any effect?
5) Do you have a gastroenterologist? The surgeon sounds like he doesn't want to have much to do with these issues.

Good luck!

Your surgeon is correct that if this was pouchitis, the symptoms would be pretty constant. My consistency varies from day to day and I am 18 years post op. If I eat something my gut does not like, I get urgency too. But pouchitis makes you feel ill in a general sense, almost like the flu. But, this does vary from person to person. Bleeding is more associated with cuffitis than pouchitis and antibiotics are not the treatment for cuffitis.

In regard to switching surgeons, good luck with that. It is very rare that another surgeon would take over for another surgeon before you have been released from his care. It is not because that cannot, but because they do not want to buy someone else's risk. Like Scott said, maybe your gastroenterologist would help, but he probably would defer to the surgeon this early after take-down also.

I think the main thing to do is to be sure that your surgeon knows exactly what your issues are, because pouchitis and cuffitis can seem pretty much like ordinary adaptation. You really do not want to be taking antibiotics unless they are clearly indicated, but you also do not want pouchitis to go untreated.

Hopefully, you can communicate all this to your surgeon.

Jan

Scott,

1. I take citricul powder 2x daily once in the morning and once right before bed

2. I have been religiously keeping up with kegels since the first stage of the surgery when my colon was taken out.

3. I am currently on lomitril 4x daily and I double up the lomitril and Immodium before bed.

4. In regards to food, I know more less what my pouch likes.. sugar is a big no no, so I avoid that late night sweet tooth I'm known to get but what bugs me is I try not to eat up to 5 hrs before bed time but it seems if I don't eat, my stool becomes watery and I leak and if I do eat before bed.. I'm going to have a full blown Bm in bed!

5. I had a gi that referred me to my surgeon but I haven't seen him since Feb and I just got a notice I was sent to collections because a procedure he performed was not covered by my insurance and im not working right now so I can't pay... I don't know if he would even consider seeing me again because I owe him thousands of dollars... Sucks too because he's one of the better gi's I've seen.

Jan,

Thank you for responding and yes I have been feeling crummy... Exactly how one would feel if they had the flu and is there a harm in taking antibiotics if my self diagnosis of pouchitis is incorrect?

Well, yes and no.

The main harm is that if this turns out to be something chronic, then it is just delaying proper diagnosis. But, it is also common practice to diagnose based on symptoms and prescribe a trial of antibiotics. If a normal course of 10 days or so takes care of things, you are golden. But, if symptoms return, you probably need to be scoped to get this figured out. Small bowel bacterial overgrowth has the same symptoms, but there is no pouch inflammation. But, the treatment is the same, antibiotics. Irritable pouch syndrome (IPS) has the same symptoms as pouchitis, but antibiotics do not solve it, even if they may reduce bowel movements. If this is cuffitis, antibiotics are not the appropriate treatment.

With C. difficile becoming more and more of an issue, it is wise to be wary of indiscriminate antibiotic use. But that does not mean you should avoid them at all costs. I definitely would go with Flagyl before Cipro for that reason, unless you cannot take it. Cipro is known to promote C. diff infections.

Nothing is ever as simple as it seems.

Jan

I don't understand your surgeon's unwillingness to scope you. I've been scoped twice so far, once before takedown and once about eight weeks after. Not willynilly but because I was having some (VERY mild) symptoms. The scopes were clear and it kept me from having unnecessary courses of antibiotics. It's not a fun procedure and every scope carries a very small risk of perforation, but it sounds like you are really suffering and it would be worth exploring.

My surgeon doesn't do follow on care and released me to my GI two weeks after surgery. If you have access to a GI who knows anything about j-pouches and is comfortable treating one, I think that is where you should go. Daily incontinence is not part of a normal healing process and it seems like your surgeon is refusing to help you explore potential causes or treatments, only saying it's *not* pouchitis and hanging you out to dry.

You might benefit most from one consult with a really great GI. Maybe there is a GI with a lot of pouch experience at Mayo in AZ? Just spitballing here.

It might also be worth trying psyllium instead of Citrucel to see if they work differently for you. I got poor results from Benefiber, which is like Citrucel.

Any chance of appealing that old insurance denial with the GI? I've had reasonable success with appeals when I've stuck with them.

Update: my surgeon has scheduled me for a pouchoscopy this Thursday. Follow up question, do they sedate you for a pouchoscopy? I have to attend a dress rehearsal for a wedding that afternoon, will I be able to go or should I reschedule the pouchoscopy?

I've had a couple scopes and never was sedated. I have one coming up next month too...no sedation. It's a bit uncomfortable but nothing I can't handle. I'd rather get in and out of the office as fast as possible. So you should be fine to go to your rehearsal although you may want to call and ask if they are sedating you. All doctors are different in how they do things. Hope you get some solid answers..good luck!

I find it to be a very minor procedure with minimal prep (just an enema or two) and no need at all for sedation. Some docs seem to want a bigger prep, and some folks here prefer sedation.

? Don't feel lost, as I would also lost then! First of all I want to thank Dr. John Marks in Philadelphia for saving my life 12 years ago. I have had the night time messes but very little leakage until recently. I've been doing the kegal exercises, with no help. I have warn a diaper for 12 years (I've also found the women's do a better job than a man's).
It was suggested I might try a butt plug by a friend, that I can buy at any sex novelty store. At times I am willing to do almost anything. Some nights I have gone through 4-6 diapers in a night. I'm wondering, has anyone tried one of these little devices; if so, would using it every day cause any issues regarding anal health.

dave

Dave, I would not suggest a butt plug for your incontinence issues you are just delaying the inevitable and could result in new issues other than leakage down the road. The best thing would most likely be doing kegals on a consistent basis to strengthen your sphincter muscles. I don't see this being the solution to your problem and probably wont make your nights any more comfortable.

Manny, I don't usually take the Drs side because I have very little trust in Drs at all but trying to have a surgeon believe a self diagnosis of pouchitis and then demanding a prescription of antibiotics regardless of what he said after your visit with him doesn't seem like a good idea. I can tell you for a fact that this is a destructive path and the surgeon is going to take it as you are challenging his expertise. You might want to make sure you have another dr lined up if this is the direction you plan on going because the best thing you can have with your dr is a level of trust and once that is broken then you are going to have a bad post operative experience. With you being only 10 1/2 weeks out I would not take that chance because you have a long way to go and looks like from your posts you will need to be watched closely.

A couple other things I find unusual are in one of your reply post you say that you don't know that much about pouchitis so how can you be so sure you have it? I think you are jumping to a worst case scenario which is why this website is a double edge sword because if you read most the post on here and are in a state of vulnerability then youre most likely going to take your symptoms and match them up with others and bug yourself out. The last thing I had to mention was a post that you posted at your 5 week post takedown point where I believe you said you no longer regretted your decision and taking the advice of measuring your progress in weeks and months and not days was a great bit of advice but yet 5 1/2 weeks later you are claiming this decision you made is "ruining your life". This is why the people on this site are hesitant to start giving out high fives to people that have not had their pouches that long because they know how quickly things can change. If you visit this site frequently (which I believe you do) you will read posts of JPouchers that have had their pouch for a decade and still have problems arise. You have to be careful what you say like I said you are still extremely early in your recovery and I wouldn't jump to conclusions that you are in the clear quite yet. Just a word of advice from my own experience. Hope you get things figured out. Good Luck.

A good yogurt might help. Activia seems to work the best for me.

quote:

You have to be careful what you say

Gee, I thought this was a support site and we can say whatever we feel (rant or rave) at any given moment....

It is a support site and you can say what you want I never said you couldn't. I was giving a word of advice to watch what you say as others on here that are new like to track peoples progress that have more post takedown experience to say on one post that you are not regretting this surgery and it was a great decision to 5 weeks later saying this surgery is ruining your life. Number one its completely contradictory and Im not a fan of people contradicting themselves and it also brings extreme doubt in others decisions on getting this surgery. Its something we can't reverse. Also telling people to take advice that they received because it is great advice and then being hypocritical by not taking the advice you said was great advice by assuming the worst 5 weeks later. You hit it right on the head we can all say what we want that's why I am able to offer my words of advice and opinions on anything that is posted. I never once said he should stop talking. I call it how I see it my friend.

Well that is great advice for those who get the opportunity to make a "decision".

I for one did not get a choice in the matter.

Well I apologize that you didn't have the decision and I didn't have my surgery done in an emergency situation I chose to have mine done at the time I did only after the advice given from my GI dr that if I didn't choose to do the surgery while I was even the least bit healthy that I would end up having the surgery regardless with the condition of my colon but would be without my choice as he saw toxic megacolon or colon cancer in my future so I guess you could say I didn't really have a decision either. Anyway I believe you are totally missing the point of my reply and I apologize that it struck a nerve and caused you to become extremely defensive that in no way was my intention. The reply was directed to the original person that post on the topic so I'm not really sure why you are taking things so personally being you weren't the one that created the posts that I was discussing but thank you for your input.

Phonix2g,

First off, I do appreciate any advice that is offered my way as I am relatively new to the j pouch world. You are completely correct about 5 weeks ago I was doing exceptionally well for around 2 weeks and things took a turn for the worse. Now, I don't know about you but my surgery recovery didn't come with an instruction manual... So I'm sorry you feel I'm contradicting myself because my condition changes from one day/week/month at a time but I thought that what this site was for, to vent, research, etc... If I recall the post your referring to Jan spoke on this subject... Warning me of the sudden changes I will most likely go through and not to get a head of myself. So, I agree in the respect that I did jump the gun but if your asking me "to be careful" what I post because you feel its contradicting from one week to 5 weeks later when its obvious my situation has changed... I will not censor myself. That's how I felt at that point and its how I feel at this point and further more if someone is going to read my post and make their decision to get a j pouch they should be smart enough to research my whole story from the 1st post to the most current. I'm not condoning or rejecting the idea of a j pouch to anyone. Its simply how I feel at that moment. I know I'm not the first to have ever "vented or ranted and raved" over this and I certainly ain't going to be the last. Tomorrow I might post my j pouch is doing well and I'm happy with it and next week it might be acting up and I might not be pleased. Bottom line is its my story and if someone is gonna use it to influence their idea of getting a j pouch..... Research my whole story or message me and ask questions.

I'm not trying to be so defensive or cause an argument but I just don't feel the need to censor myself... Were all here for a reason whether it be because we feel ill or are doing great and wish to pass that hope on to the next thing. I'm just trying to find some answers to my current struggles and whatever struggles I have conquered, I would be more then happy to pass my knowledge on. Were all in the same boat, just on different classes (so to speak)...

I understand Manny and I'm honestly not looking to start any problems. I understand your frustration as I have been through then roller coaster ride myself. I mean I'm lucky to even made it this far do to by whole body almost shutting down from toxic shock. I feel blessed to even be here today. I wasn't trying to attack you or be a jerk in any aspect and I'm sorry if it felt that way I was just offering a word of advice which was maybe taken the wrong way. From now on I'll be the one that watches what he says because I don't want to make anyone feel uncomfortable for posting things in their times of need or frustration. Once again I am sorry and I hope you are getting things figured out so we can hear about the Manny we did 5 weeks ago. Good luck Manny.

Phonix, I really do appreciate any advice I recieve on here and I too am sorry for coming off on the defensive... Maybe others on this site don't feel the same way I do but I feel like this is an exclusive club, like a family if you will and just like in any family there will be differences in opinions that might lead to a lil argument here or there but in the end I'd like to think I have everyone's support on here just like I'd like you and everyone reading this to know you guys have my full support... Have a great day and Godbless

You too Manny. You're right this is an exclusive club and does feel like a family sometimes in my case better than family because my family sucks ha ha. Anyway I got your back no matter what.

quote:

I wouldn't jump to conclusions that you are in the clear quite yet.

This is a really common attitude among those of us with chronic illness, and something I definitely used to subscribe to also, and probably the best thing I got out of therapy was learning that this is absolute and total BS.

If you feel like you're "in the clear" -- you feel good and healthy and happy -- then for God's sake believe it. Don't borrow trouble or ruin a good day by worrying about a bad day that might come along tomorrow. A good day is a good day and appreciating it doesn't "jinx" you. Spending your life anticipating bad events doesn't make you "prepared", it just makes you depressed.

Liz, I agree with you, but I think my original point was lost. I whole heartedly believe everyone should focus and embrace what is good in their lives and try not to spend too much time worrying about an unpredictable future.

But, my original point was that just because you had some fabulous success early on, you should not be discouraged if there are setbacks later on. Sometimes people worry about pouch failure because of an early bout of pouchitis or other complications. This is a long process and you should not assume there will be a bad outcome just because there are some bad days.

Jan

That was mainly my point "let the good times roll". I feel like a lot of people think things are too good to be true when they are feeling good and come on this site and force bad day on themselves because they feel it is more normal. It seems crazy but it happens. Even the bad days I've had I always think about my worst days with UC and realize things aren't so bad. If you try thinking that way it should help.

Liz, perfectly said. If you feel good, embrace it.... I mean how often do the good outweigh the bad during the adjustment period... I know for me personally.. not very often. I will def be taking Jans original advice and not jump ahead because I'm in it for the long haul and I'm sure it will be a road with a lot of twist and turns. This is why I love this site... So many helpful people and suggestions. But phonix was right.. it definitely is a double edged sword, I do catch myself from time to time reading a entry and comparing it to how I'm feeling and sometimes that does more harm then good. Just a quick update, my pouchoscopy had to be rescheduled to next Friday due to a scheduling problem in the drs office but I was informed I'm going to be sedated... I hope everything goes ok because this procedure is 24 hours before my sisters wedding... Which I am suppose to be a part of. Keep your fingers crossed for me.

Manny, Im guessing you have had scopes done in the past that you have been put under anesthesia correct? If so how did you feel after those because I'm guessing they are going to use the same method of sedation but I could be wrong. I think after having so much anesthesia due to the surgeries it shouldn't really phase you too much but once again I could be wrong we all react differently to different medications.

Phonix, I haven't been scoped since my colon was taken out in march. Do you know if the anesthesia is the same for a colonoscopy as it is a pouchoscopy? I would imagine so... Then I hear about people not even being sedated, so I'm assuming the pouchoscopy is less invasive so maybe the anesthesia won't be quite as strong.

quote:

so I'm assuming the pouchoscopy is less invasive so maybe the anesthesia won't be quite as strong.

Anesthesia isn't really needed for a pouchoscopy. There's nothing left of your colon now and it's only a matter of inches before the scope reaches its destination.

I would go by your experience with sedation in the past... Also this will definitely NOT be general anesthesia (what is used during surgeries) so don't worry about that, think back more to the kind of light sedation that was used for colonoscopies.

Personally my surgeon and GI do scopes without sedation -- pouchoscopies are generally a lot easier than sigmoidoscopes and colonoscopies because there are no "corners" to turn and the area to investigate is much smaller. Both of my scopes were certainly less than 10 minutes (probably even less time but hard to keep track in that position!). If you're really worried about being groggy afterwards you can ask to be given lighter sedation, or even none at all. I've never been groggy from sedation for more than eight hours or so, I'm sure you would be fine for the wedding.

I have never had sedation for a pouchogram or scope of any other form of exam, not that I am strong or couragous but they really do not hurt (other than my ego) anyway near as much as colonoscopies or all of the other exams that I lived through before...I just go in, jump up on the table, get into positon (I have a k pouch and have an abdominal stoma)...
I just prefer to keep my wits about me and be able to watch the screen to see what is going on...
Sharon

Every colonoscopy, sigmoidoscopy, endoscopy, and even most recent dilation they used general anesthesia on me which always included propofol. With a procedure like this you usually have a choice on how you want to be sedated or if you don't want to be sedated at all. Most of the time they set this up without sedation because its quick and not that extensive of a procedure. You could always see if they could put you in a "twilight" type of sedation which you are still awake for but in la la land and have no sensation or an understanding of whats really happening.

Just a quick update, I had my first pouchoscopy today and the j pouch looks normal... No inflammation, pouchitis or anything of that nature. So, I am happy about that but on the other hand kinda bummed because the drs still can't figure out why I'm only having trouble with leakages at night... I'm following all the proper procedures as far as meds, fiber and diet/ eating schedule goes according to the Dr. Guess, ill just keep chugging forward and trying new things till I can crack the code!

Everyone's most hated reply:

"Sometimes it just takes time."

Remember, it can take up to a year for pouch adaptation to occur, and if there was any trauma to the sphincters during surgery (prolonged dilation can cause trauma and it varies from person to person), those nerves can also take a year to repair.

So, of course, do what you can in regard to diet, etc., but often it is more about elapsed time than anything else. This is especially true of nocturnal leakage. The sphincters naturally relax some during sleep, so thickening the output and slowing the gut can help, but it is an imperfect science. The good news is that the other stuff has been ruled out.

Jan

Manny - Keep us posted if you figure this one out.